*After a very long break, I am kicking off my return to my 'Let's Talk About' series with one of the most highly requested blog posts of all time: TSW and pregnancy.
There are subjects within TSW which fascintate me, and with my blog, I am able to explore those subjects in more detail because if we want answers, we literally have to find them ourselves as no one else is doing it. I can't believe that after ten years of personally knowing about TSW, we are still fighting for it to be recognised, but acknowledgement would mean making huge changes in the way steroids etc are prescribed, which would take money and essentially dismantling an entire system. There would then be years upon years of litigation, research, investigations and reports, and they just aren't prepared to do that, therefore, it will continue to be called eczema, eczema trials will continue to be corrupted by the fact that most patients in those trials will have symptoms of TSW, and blur the lines more and more between a skin condition and an iatrogenic condition. As a result, hundreds of thousands, if not millions, of people around the world will fail to be given adequate medical support. I say millions because there are still so many people out there who believe they are battling eczema ... And so, here we are, still only relying on each other for support and guidance whilst more innocent people will continue to be given medcation that will only make matters worse.
Labour aside, pregnancy should be one of the most exciting times in a woman's life. Instead, many women in this community have to desprately clamour for any nuggets of information on what their skin might decide to do because of TSW, adding unecessary stress and worry to what should only be a special time. As a woman, whilst I am over TSW, this post feels very personal to me. I am a woman in my thirties, and in this current phase of my life, I am starting to think about having children (...she says single whilst clutching a pillow of Tom Selleck).
Before I hand it over to the brave and beautiful women in our community, I wanted to thank each and every single one of them for allowing me to share their experiences through pregnancy. I have had the honor and privilege over the years of getting to know so many people in this community and share experiences they have given to me in order to try and help others. I've read about traumas no one should have to go through and seen their strength and bravery through adversity, so whilst the process of TSW is not something incredible, these parts of TSW are.
The first 25 experiences follow a Q&A format, followed by 9 that are freestyle accounts. None are in any particular order and just as they ended up falling in the post. From all the incredible information these women have provided, I've done my (primitive!) best to extract some data, which I've shared at the end.
Lastly, I ask you to read with caution because some of these experiences might be triggering for some, and even though these women offer the most priceless advice surrounding TSW and pregnancy, it shouln't be taken as medical advice and is shared for informational purposes only.
Emma (@emmasskinstory)
*1. A brief history of your skin journey.
I was diagnosed with eczema at a young age. I’m not sure how young, I think I was maybe about 1 or 2, and apparently it was very mild patches I had in the usual places – between my fingers, on my wrists and behind my knees. I was given steroid cream for them and you know the story – it got worse and worse over the years from that point on. I remember being about 11/12 and my face swelling up and going bright red, and looking back now it was clearly TSW, but I was taken to the doctor and, of course, prescribed more steroid cream. I remember using Betnovate quite a lot on my body and I was prescribed Eumovate for my face. When I was about 27 I was prescribed Elocon for the first time. I stopped using them when I had just turned 31 after realising I couldn’t go two days without them or my face would swell, my eyebrows would fall out, and I’d be bright red all over. I had heard of TSW but didn’t imagine it would affect me as everything I had read said you had to be using LOTS of steroids very excessively, and a tube would last me months.
2. How many months into TSW were you when you found out you were pregnant?
I was about 11 months into TSW and over the worst part when I found out I was pregnant.
3. Was this your first child?
Yes, this was my first child.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
None at all. I haven’t used any medication at all throughout the whole of my TSW journey.
5. What was your skin like before you found out you were pregnant?
It was going through a good stage. The first 8/9 months were the worst for me and then it gradually got better.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
My skin was actually really good throughout the vast majority of my pregnancy, it was near the very end at about 38 weeks that it started to flare a bit, but even this was minor compared to how it had been at the start of TSW.
7. Any unusual TSW symptoms you experienced during pregnancy?
Not really, my skin was very bearable. I’m pretty convinced this is because your immune system is suppressed during pregnancy to prevent you from miscarrying the baby, and I think this had an effect on my skin as well.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
My skin flared a couple of weeks before birth and was still flaring when I was giving birth, but to be honest you’re too preoccupied to notice at the time!
We’re always told to prepare for birth, fill out a birth plan etc, so I’d just apply that to giving birth with TSW – take your home comforts, whether that’s ice packs, your creams or balms, comfty pyjamas and soft clothing etc. As I said, when you’re actually giving birth you’ll probably be too preoccupied to be thinking about your skin!
9. How was your skin after giving birth?
My skin flared quite badly for six months after giving birth, although it was mostly on my face and nothing compared to the first six months of TSW. I didn't need constant baths etc like I did back then and could ignore it for the most part. My skin has been fine since then.
10. Does your baby have any eczema/TSW-type symptoms?
My baby does have eczema. It appeared when he was 3 months old and actually, at first, I did wonder if I could have passed on TSW somehow, or if there were somehow steroids left over in my eggs and he was having withdrawals from those (as crazy as that sounds), cos it was really bad to start with and there was a period of a couple of months where he had symptoms such as excessive flaking. However, he’s now 15 months old and his skin is so much better than it was. He just has eczema in the usual places now – behind his knees and on his hands etc, rather than all over him. He’s not had steroids and won’t be having steroids and I’m sure he’ll just grow out of it by time he starts school (like I believe I would have done if I hadn’t been plied with them from such a young age).
11. Any advice to other mothers during pregnancy?
I was so worried about having to use steroids while pregnant. I kept reading things about people needing steroid shots to help with babies' lungs and I couldn't seem to get a straight answer from anyone (medical professionals included) on whether there were steroids in an epidural. It can be a daunting time, and I had lost all faith in the medical profession. My advice would be to try and stop worrying – it's more likely than not that everything will be absolutely fine. Do your own research, ask for second opinions and make your own decisions. Don't be pushed into anything you're not comfortable with (I had the on-duty doctor come in during the birth to try and push me into an epidural umpteen times). Your body is doing so much for you, it's working to heal damage from steroids and grow your baby. You might have a different experience from me and flare during pregnancy. Try not to panic if you do – flares always come to an end.
12. Breastfeeding advice?
N/A.
Bethany (@bee.thebrave)
1. A brief history of your skin journey.
Mild eczema since 4yo, never hospitalised. On and off growing strengths of steroid creams until late 20s. One course of oral steroids and Protopic in mid 20s. Noticed unfamiliar, magnified symptoms summer 2019. Found TSW online March 2020. Stopped steroids July 2020.
2. How many months into TSW were you when you found out you were pregnant?
I was 6 months TSW when I fell pregnant. I had been on the contraceptive pill for 15 years and being enlightened to TSW and bettering my body, I came off the pill June 2020 but was being careful.
3. Was this your first child?
Yes, which makes me sad as TSW overshadowed my experience.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
No, I was scared to even take antihistamines and heartburn tablets due to medication anxiety and the pressure of potentially harming the baby. Everytime I tried to obtain medical advice on what was safe to take for pregnancy symptoms such as heartburn or TSW itch, I was met with “there has been little research on what’s safe during pregnancy” so my anxiety was through the roof. The pressure on my shoulders felt too heavy to bear a lot of the time as it was also peak covid.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
For the first 3 months I had constant eczema herpitcum.
7. Any unusual TSW symptoms you experienced during pregnancy?
I experienced hyperpigmentation more during pregnancy, but it was also my first summer going through TSW so it’s hard to determine, although I was very patchy as you catch the sun more when pregnant.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
My waters broke slowly around midday. I experienced period-type pains in the evening which progressively got stronger and I documented an itch fit around 11pm. As labour progressed there was no focus on my skin whatsoever as I was concentrating on contractions.
My partner at the time put a tens machine on me which is a natural pain relief that vibrates on certain areas to level out pain as a distraction, almost to counteract it. I’d planned an unmedicated birth due to TSW and fear of meds but was open to whatever may need to happen. I’ve no doubt the tens machine helped me dilate as much as I did whilst at home. I learnt a lot from hypnobirthing, not just about your rights and what happens to your body during labour, but how to relax and therefore give your body the best chance of an intervention free birth. There was so much I didn’t know especially about your rights which I found incredibly helpful due to my fear of medical settings having lost trust via TSW experiences.
I was very relieved and proud of myself to realise I was already 8cm dilated when I was examined at the hospital around 4.30am. I was offered gas and air but as well as being nervous to feel the effects of it, I was too busy concentrating on my contractions. My partner at the time couldn’t come into the hospital as it was during covid so I was being assessed alone, but I’d prepared him to advocate for me re steroids if I was in an unable state as I had no idea how I’d endure the pain – I’m usually very squeamish. During close contractions, I was able to relay that I had a steroid allergy and they put a red name tag on my wrist to magnify that. I remember feeling so proud of myself.
As I was over 4cm dilated (due to covid restrictions) my partner was able to come into the birthing room with me. I was asked if I wanted the birthing pool which was in my birth plan but I couldn’t be bothered with any faffing, although as soon as I saw the chilled birth pool environment, I opted for it. I had to take the tens machine off to go into the pool, but as soon as I was in the warm water I knew I’d made the right decision. My partner had instant ice packs which came in handy on my forehead as the water was warm so it cooled me down. I didn’t feel itchy at all.
I did it, I gave birth in the pool, I did delayed cord clamping and just stared at my son in awe. I was able to walk out of the birth pool holding him in my arms whilst the placenta was still inside me. One of the proudest moments of my life. I didn’t worry about him being skin on skin which I’d forever worried about. Let the baby bubble commence.
9. How was your skin after giving birth?
Once I’d given birth in the pool, my skin was relatively good for a whole week without moisturising or bathing etc. I chose not to shower or bathe for a week because I was anxious that my skin would change and that my first degree tear would hurt in all honesty. I had an oat bath after one week which did make some areas a bit itchy but otherwise I was still good. I was a little flakey but nothing too uncomfortable.
Constantly having to wear breast pads did create sore skin but changing them regularly helped. There’s reusable fabric ones or disposables. I tried both. The same with sanitary pads, having to wear them constantly for 6 weeks created sore skin but again nothing like TSW skin.
I did find breastfeeding through the night difficult because with TSW skin that’s a tough time. I did stop breastfeeding at roughly 6 weeks due to night feeds being too much for me and my mental health alongside TSW. I would probably bottle feed from the start if I were to have another baby – for my independence, and to stop having to worry about what I’m eating and transferring to the baby as Albie did develop eczema and allergies, so I wonder if it would have helped to not have been transferring my gut microbiome onto him (which is how I interpreted it).
I did find my skin got worse once I stopped breastfeeding but it was not too uncomfortable. My first ‘bad’ flare was at 5 months postpartum which led me to reach for antidepressants and contemplate immunos. I do want to make clear though that this overwhelm wasn’t just due to TSW and being a new mum. I was going through a lot in my personal life, too.
10. Does your baby have any eczema/TSW-type symptoms?
Albie started showing signs of eczema around 5 weeks. It was identified as baby acne but the more it developed the more I saw eczematous symptoms. He also had bad cradle cap (a sign of allergy). Thus started the rollercoaster of eczema and allergies.
11. Any advice to other mothers during pregnancy?
You’re going to worry and that’s ok. You’re going to contemplate whether you’ll be able to have skin on skin, and care for them like you and they deserve. You’ll maybe even wonder if your body is capable of growing a baby full-term and give birth after all the doubt in our bodies that TSW can cause, but I promise you it’ll be the greatest way to prove those who worried wrong. Being pregnant for me was the brightest guiding light at the end of the TSW tunnel. I had a real life focus.
Take the antihistamines and indigestion tablets when you need to. Eat what you need to, balancing a healthy pregnancy and TSW diet is tough but so are you!! Enjoy witnessing your body create life, the most incredible thing our bodies can do! Enjoy the down time!
12. Breastfeeding advice?
Do whatever feels right and best for you. Regularly change breast pads to avoid damp pad irritation.
Camille (@camillevhme)
*1. A brief history of your skin journey.
I had a bit of eczema in my early childhood, between the ages of 1 and 3. My family has a history of allergies, but no eczema in the family before me. Fortunately, my mum always favored alternative medicine and never put steroid cream on me. During my childhood, I was treated by a homeopathic doctor who advised I eliminate dairy products and eggs for a short period (more or less a year). This cured my eczema and I was able to have cow's milk and eggs again very quickly afterward without my eczema returning.
My eczema reappeared when I was about 22 years old following a year abroad, probably due to a combination of excess drinking and partying, stress, and poor eating habits. I consulted a dermatologist at the time who prescribed cortisone cream (Elocon), but my eczema was very minimal and didn't have much of an impact on my life. I used this cream extremely sporadically and only during wintertime – I only used one tube of this cream in 6 years.
My eczema started to get worse in February 2020. At the time, I was living in a flat with mold. I could feel that something was wrong with my body, my eczema was spreading, and I was starting to have symptoms other than just related to my skin. I consulted various doctors and tried different therapies in search of answers, but my condition only got worse over the next 6 months. One of these doctors, a dermatologist, prescribed a new steroid and antibiotic cream (hydrocortisone I believe) with the instruction to apply it every day (I wasn't even applying it every week before). I did this for 1 month until I came across articles about TSW. I very quickly understood that I was suffering from a steroid addiction. I stopped the cream immediately, but my condition was getting so bad that I was then prescribed oral steroids for 6 days. After 6 days, all the symptoms of Red Skin Syndrome appeared: extremely red skin in many areas, skin burning, swelling, thermoregulation, insomnia, extreme fatigue, weight loss, showers were excruciating, etc. After a few weeks, I was prescribed Dupixent and received the first shots, however, I almost immediately developed bad side effects: bacterial and fungal infections, abdominal pain, and massive hair loss. I then decided that I did not want to continue with Dupixent.
2. How many months into TSW were you when you found out you were pregnant?
I was 3 months into TSW when I got pregnant.
3. Was this your first child?
Yes, it was my first pregnancy and child.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
No, but I did use antihistamines from time to time (mostly to deal with the hives or small flares).
5. What was your skin like before you found out you were pregnant?
After 2 months in TSW, I went to the Dead Sea in Jordan for 1 month with my sister. I exposed my skin to the sun's rays, which are less aggressive in this part of the world, swam every other day in the Dead Sea, and rested a lot. The sun reduced the inflammation and the itchiness of my skin and seawater had a cleansing effect. This trip helped my skin, and my fatigue, and uplifted my spirit. My sleep got much better there and overall I felt so much better. I got pregnant straight afterward.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
My skin was already much better, but I very quickly saw a clear improvement in my TSW symptoms, I'd say after 2-3 weeks. During the first 6 months of my pregnancy, all the symptoms disappeared – I just had a tiny bit of eczema from time to time and sometimes hives (which I'd never experienced before), especially in the evening. My eczema started to worsen a bit when I got Covid during the last month of my pregnancy, and a big rash on my chest appeared at that time (which I believe was fungal).
Since TSW, I've been trying to take control of my health and educate myself. I've almost finished two years of studying nutritherapy. One of the things I've learned is that during pregnancy, the maternal cortisol level increases up to two to four times. Since TSW, my cortisol level has always been lower than normal (this is not the case for everyone who suffers from TSW: some experience higher cortisol levels and some do not). Knowing this now, it made sense that I felt better pregnant because my cortisol level was higher. It also explains why my skin was so beautiful following birth and got worse postpartum.
7. Any unusual TSW symptoms you experienced during pregnancy?
Just some hives that I did not experience before. During my last month of pregnancy, my belly became a bit itchy and I started to develop a bit of eczema on it. I was stressed as I never had anything on my belly before but it went away as soon as I gave birth.
Overall, my pregnancy was great. I enjoyed it a lot, had a lot of energy, and even got married during my third month, with beautiful skin :)
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
Suffering from TSW (a medication addiction) encouraged me to choose an unmedicated birth (one thing TSW gave me was to try to do everything with a natural mindset). I gave birth in a birth center, which was located in a hospital, combining both my wishes for safety and no medication. The midwife was amazing. I had warned the staff prior that I was afraid my skin would bother me or itch during labor. In the end, that wasn't the case at all. The birth was magical, the best day of my life, and I didn't think about my skin for a single second.
I would encourage you to choose your practitioners carefully and to brief them a little bit on your health background. I also made sure that if I needed a C-section or pain medication, it would not contain steroids. My husband was responsible for ensuring that this was respected as well.
I had a huge maternity suitcase and brought a lot of stuff to feel extra comfortable. I'd brought my pillow, a thermal water spray and ice packs if I felt itchy or flared during labor. I'd packed very comfortable clothes and healthy food. Make sure that the father or someone else can stay overnight to help you out at the hospital following the birth.
9. How was your skin after giving birth?
My skin was AMAZING for at least 3 days after giving birth (thanks to the rise in cortisol levels labor naturally produces). However, I would say about 2 weeks postpartum, it started to get worse little by little but it was still super manageable, I did not pay much attention to it as I was so happy. One month postpartum, some of the symptoms of TSW; the swelling, the burning, and the oozing, came back (before pregnancy I did not experience much oozing) and it started to become super difficult.
As I said earlier, in postpartum, the higher level of cortisol during pregnancy drops and there are a lot of hormonal changes, I thus believe that it is normal that we TSW women will see our skin and health slightly impacted. That being said, retrospectively, I know that some factors contributed to making this flare much bigger than it should have been for me:
- The huge lack of sleep: I was breastfeeding and my baby was waking up every 2 hours. He had a lot of reflux, hence he cried a lot and didn't sleep much.
- The anti-fungal medication I took 2 months postpartum: I had a candida infection on my breast and when I stopped breastfeeding, I took anti-fungal pills for 2 weeks. It helped with the infection but made my skin and health worse. I thinkt it was too aggressive at the time.
- The anxiety of seeing all the TSW symptoms coming back postpartum: I thought pregnancy had healed my TSW so it came as a huge shock when I saw all the symptoms come back postpartum. I was not mentally prepared and it gave me so much anxiety. Knowing that many pregnant women who suffer from TSW have a flare postpartum due to the hormonal changes would have helped me prepare mentally and physically. Of course, you need to find the right balance and not over-stress. Had I known, I would have organized things differently: I would have not planned to move abroad 6 weeks postpartum, I would have bought everything in advance that my baby needed during the first 6 months, I would have planned to have more help available, etc.
- I stopped breastfeeding quite abruptly because I needed to take medication. If possible, I think it is best to wean very gradually so that your body can adjust to this hormonal change.
- As soon as I saw some symptoms coming back, I consulted many doctors and tried many therapies. This was very tiring, took time away from my baby, and made my body flare even more.
- I was still very early in my TSW when I fell pregnant. I stopped steroid cream only 3 months before.
- Moving to a different country 6 weeks postpartum.
- The long visits every weekend from the family who lived abroad.
This intense postpartum flare lasted for about 6 months and then it decreased and became less and less. I am not going to lie, it was super difficult, and I also had fungal and bacterial infections. The doctors did not know how to help me and I did not sleep more than a few hours for 6 months. I could not care for my baby the way I wanted, and I became anxious and a bit depressed. Being a new mother makes you vulnerable and suffering from TSW through this new phase of your life makes you even more vulnerable.
When my baby was 7 months old, I went to a private clinic in Switzerland for 2 weeks. This clinic is not focused on the illness but on strengthening your immune system. There, I was monitored daily by doctors and I received many treatments, among them daily infusions (build up and anti-inflammatory (no steroids of course)). My stay there did not cure my TSW but it really kicked off my recovery. All my infections (fungal and bacterial) disappeared within a few days and I started sleeping better. I am forever grateful to my family for allowing me to go there.
Today I am still healing from the trauma and the sadness of that period. However, physically, I am almost healed. I sleep well and I do not need any medication. My skin is the best it's been in 4 years. I still have a few eczema spots from time to time, which are alleviated when I am in the sun and do not bother me. I can swim, and take long showers and baths. I do not drink alcohol anymore and I mostly do not eat gluten, dairy, and high histamine food. I would say that lowering my intake of high-histamine food helped me the most. Through this TSW ordeal, I developed histamine intolerance and mast cell activation syndrome but I have found trusted medical staff which is so important. I trust my dermatologist and functional doctor 100% but I also have lots of resources thanks to my nutritherapy studies. This experience taught me to look after my health and well-being and it will always come first now.
10. Does your baby have any eczema/TSW-type symptoms?
My son had beautiful skin from birth up until 9 months old. At the age of 9 months, he started to develop a few eczema patches on his cheeks and arms. We stopped dairy and gluten, although he does not have a real allergy, and I try not to give him too much high-histamine food on the same day. I also started to give him vitamin D, probiotics, and omega-3 oils everyday. Following these changes, quite rapidly, his eczema went away almost completely. I never used steroids on him. We will reintroduce dairy and gluten soon.
Today, he is 2 years old and has sensitive skin and red cheeks when it gets super cold, but he does not suffer from eczema and never itches.
Following his birth, we did not bathe him immediately. The skin of newborn babies contains a substance designed to protect them. We bathed him only after 7 days following a recommendation from our midwife. Now, I only bathe him every other day, and I think this plays a role in reducing skin dryness and sensitivity.
11. Any advice to other mothers during pregnancy?
Based on my experience and what contributed to my postpartum flare I would suggest the following:
- Have healthy and nourishing meals at hand. I was super hungry while breastfeeding and this would have spared me some time. It also keeps you from eating unhealthy options.
- Limit visits and commitments for the first 3 months but make sure you're surrounded by people you trust and who can drop everything to help you out and support you.
- During the first weeks and months, I wanted to be the « perfect » mom. I had friends and family visiting every day and I would prepare meals for everyone, have the house super tidy, I wanted to make my own liniment/cream for my baby, etc. If someone wants to come over, make it a rule that they have to bring food or help you out with the laundry.
- Have a doctor and/or midwife you trust whom you can contact or consult and who knows your medical condition relating to TSW.
- Prepare as much as possible in advance (during pregnancy when you feel well enough to).
- Prepare an action plan you follow if your symptoms come back. I wasted a lot of time and energy trying to find doctors and therapies to help me and looking for answers on TSW groups which gave me a lot of stress when I was also taking care of my newborn baby.
- Prioritize your sleep as much as possible: I know this may seem like weird or impossible advice with a newborn but I think it is so important for us TSW moms. I had to let my husband or my mother do some nights when I was at my worst. It was super hard for me but your baby needs you as healthy as possible. Do not feel guilty about it. We are not like every mum. Lack of sleep can make TSW symptoms much worse and inversely, some sleep can help your body heal tremendously.
- Where possible, choose second-hand furniture, toys, and clothes for the baby. I flared a bit during my last month of pregnancy and in postpartum and this might have been due to all the new stuff we bought for our baby. Plus, I have read research that suggests that a child is more susceptible to suffer from allergies and eczema if he is exposed to new furniture, toys, and clothes, so buying second-hand is a win-win for you and your child.
- Be well informed. With retrospect, I wish I had prepared myself mentally and practically that there was a probability that I would flare postpartum. TSW has to do with hormones, and during pregnancy, your cortisol level rises. Mine was still low from using steroid cream so it made sense that I was better during pregnancy and got worse postpartum as the cortisol level dropped. Had I known I would have prepared myself better and not planned to go on holiday and try to move to a different country for my husband's work when my baby was only 6 weeks old.
- The sun definitely helped me and still does but when I was in postpartum my skin was super sensitive and I got sunburn and it would make me flare so bad, so I would encourage to sunbathe early morning and late afternoon.
- Change your mindset as much as possible: I spent way too much time thinking about TSW and searching for doctors and therapies when I should have distracted myself from TSW. I noticed such a big difference when it was not my main focus (easier said than done of course).
12. Breastfeeding advice?
I wanted to breastfeed as long as possible as I had read that it can prevent the child from developing allergies and eczema. I enjoyed it a lot for the first 6 weeks, although I developed a candida infection which started to become quite painful over time. When I had to take antifungal medication when my baby was 2 months old, I decided to stop breastfeeding. It was heartbreaking for me, however, with insight, I sometimes wished I would have stopped breastfeeding earlier as I am convinced that the lack of sleep contributed to the big postpartum flare I had. If you do not breastfeed, someone else can more easily replace you for some of your baby's nighttime awakenings. Plus, strangely, my baby felt better when I stopped breastfeeding: He had a lot of reflux, which went away when we put him on a formula without cow's milk (maybe it was not the milk but the maturity of his esophagus though). My first advice would consequently be: if you feel super tired and your TSW is getting worse, it is not the end of the world if you do not breastfeed as long as you had planned. The most important thing is to keep you as healthy as possible and your baby will be fine.
Also, I would encourage you to pump or introduce a formula for one feed per night as soon as possible so someone else can replace you for at least one of your baby's night-time awakenings. My baby would breastfeed every 2 hours, even at night. I was so sleep-deprived and I know how lack of sleep can impact TSW. I started to pump when my baby was 6 weeks old so my husband could give him the milk and I could sleep a bit longer. I could see a huge difference in my skin when I slept a bit more.
Thirdly, having a midwife who is super competent in breastfeeding. My candida infection took time to be diagnosed so it got worse – the cream would have probably been sufficient at the beginning and I would not have needed medication, too.
Finally, if possible have a super comfortable bed and quiet bedroom. We lived in an apartment where the bedroom was super noisy. It made it hard to fall back to sleep and I was thus more itchy.
Going through TSW while being a young mom was the hardest experience of my life but my amazing son was my bright light through it all. He kept me going every day. I strongly believe TSW made me the mum I was supposed to be: not stronger but more human. I am proud to make healthier lifestyle choices for my son, I trust my instincts, and I make my own choices concerning my son's health (I will never blindly follow medical advice), I enjoy deeply joyful and painless moments with my son and most importantly, I know now how to comfort him when he is hurting.
Feel free to contact me if you have any questions or need support. I know how lonely, hopeless, and stressed TSW can make you feel, especially when you are a young mom or expecting.
Be proud of yourself mama, being a young mom is hard, and going through TSW is even harder so dealing with both makes you such a badass!!
Courtney (@cortisonecourt)
*1. A brief history of your skin journey.
Eczema on and off since a baby but very mild until late teens. Usual places elbow and knee folds. Used topical steroids on and off for 30 years as instructed (varying strengths) until 20 when unknowingly used 2nd class potency fairly consistently for 10 years. The last few years of usage I realised something very wrong was happening and noticed a rebound effect every few days when I didn’t use the creams.
2. How many months into TSW were you when you found out you were pregnant?
3 years 5 months.
3. Was this your first child?
Yes.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
I used LDN prior to pregnancy and then started again during 2nd trimester (low dose naltrexone).
5. What was your skin like before you found out you were pregnant?
Still TSW affected but mostly manageable.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
2nd trimester red sleeves came back and places that had been clear for over 2 years, super itchy and rashy.
7. Any unusual TSW symptoms you experienced during pregnancy?
Red sleeves were very bizarre as they had been gone for quite some time, over a year or maybe even two.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
Skin was fairly good and took a back seat as I was so focused on birth and baby. I can confidently say I didn’t think about my skin at all during labour and birth. I made sure I had all my comforts with me like soft clothing and anything that usually helps my skin when it’s bothering me. I packed ice packs as well.
9. How was your skin after giving birth?
Really good, only a little flare 2 weeks post. But I think all the adrenaline gave me a boost immediately post birth as skin was very comfortable.
10. Does your baby have any eczema/TSW-type symptoms?
She has sensitive skin and has had a few eczema patches but very mild so far and usually sorts itself out on its own after a few days.
11. Any advice to other mothers during pregnancy?
Try to stay in the present. Worrying about how you’ll cope or what your skin will do post birth etc only takes away the joy. If you know there are areas you will struggle with, ie bathing baby with sore hands etc, have plans in place with people helping you bath. Stock up on gloves.
12. Breastfeeding advice?
I’ve been very fortunate to not have my chest and breasts affected by TSW and have been able to breastfeed exclusively for 7 months. I absolutely love it! Try not to place any pressure on yourself as sometimes feeding is out of our control. Do what you’re comfortable with or are able to do. Silverette cups and breast ice packs were a godsend for me in those early days when nipples got very tender and sore.
Amy (@tsw.diary)
***NB: this account deals with not only Amy's experience of going through TSW while pregnant with her second child, but also what her darling second child, Immy, went through with her skin. If anyone has ever experienced a similar issue with their child's skin, please get in touch.***
*1. A brief history of your skin journey.
I developed eczema when I was around 18/19, likely because of stress at uni and work. It started as a tiny patch on the inside of my arm, but the more steroids I used to treat it, the more it spread. At the time, I never connected the two because doctors just kept telling me to use more and more steroids, and as you are conditioned to trust their advice implicitly, I continued to use them.
Around 10/15 years later when I found out about TSW, I just knew that is what I had – even though my dermatologist at the time dismissed it and said it was not possible. At that point, as I wasn't able to go through withdrawal cold turkey, I tried various things, including the immunosuppressants azathioprine and methotrexate, and after two and a half years, I healed completely. For a long time, my skin was fine, until I was given two steroid shots just before I had my first child. While I was terrified of using steroids again, for obvious reasons, the doctors strongly recommended I take them for my baby's lung development as he wasn't growing as he should be and would likely end up in special baby care without them. That, combined with the fact that I used a tiny bit of hydrocortisone on a sore bit on my neck postpartum (I don't know what I was thinking at the time) threw me back into steroid withdrawal. That was three and a half years ago.
2. How many months into TSW were you when you found out you were pregnant?
I was over a year into TSW when fell pregnant again (and 18 months after having my first baby).
3. Was this your first child?
No, my second.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
No.
5. What was your skin like before you found out you were pregnant?
Compared to the first time I went through TSW, my symtoms weren't as bad, although it was still difficult.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
For the most part, I didn't notice any changes in my skin during pregnancy, and I continued to have very typical TSW flares, until around a month before giving birth when my symptoms definitely got much worse, especially on my face and around my eyes, but I don't know if that was just down to TSW or not.
7. Any unusual TSW symptoms you experienced during pregnancy?
I think one of the hardest things about being pregnant and going through steroid withdrawal was that my nipples were massively impacted and they would ooze a lot, and no amount of zinc paste or sudocrem etc would help. I breastfed my first child, and I really wanted to do the same for my second, so I was really worried that I wouldn't be able to do it, but thankfully, it was OK. FYI: I've never used steroids on my nipples.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
Because I had an emergency C-section for my first child where I ended up being under general anasetic and it was quite traumatic, I decided to have an elective C-section for my second. At the time, the anaesthetist and surgeon did comment on my skin and said they weren't sure how my scar was going to heal because the skin was so inflamed, but it healed very well, and interestingly enough, one of the nurses who was assisting with my C-section that day had a friend who was also going through TSW. Overall, I recovered pretty well from my C-section, and whilst my skin wasn't great at the time, I wouldn't say that steroid withdrawal impacted it too much.
9. How was your skin after giving birth?
Straight after giving birth, my skin suddenly improved for around a week, and I don't know whether it was down to hormones or anything else, but there was definitely a massive improvement before it went back to how it was before, following the usual up and down flare cycle, with a non-linear pattern, which has continued ever since.
10. Does your baby have any eczema/TSW-type symptoms?
My first child (who is now 4) has never had any skin issues, but at the time of his birth, I wasn't going through withdrawal and had only used the two steroid shots prior to his birth. Unfortunately, with my second child that I had whilst going though TSW, it's been a different story.
My nipples were exceptionally bad through my second pregnancy, to the point where I was worried they were infected as they would constantly ooze. As a result, I went to the doctors, and after they swabbed the area, the tests came back positive for staph (although I think it was just a normal level on the skin) and they put me on antibiotics. While the medication helped slightly, it didn't get rid of the issue and my nipples continued to ooze, so the doctors decided that they hadn't given me enough and put me on another course of antibiotics, but it still didn't work ... I went back to the doctor, and all they did was give me a different type of antibiotic, so my poor daughter's gut health was probably destroyed after three rounds of antibiotcs whilst I was pregnant.
When my daughter was born, for the first six months her skin was great, and I did manage to breastfeed her as my nipples did recover enough to do it, but when I started to wean her, a few patches came up on her mouth and hands. At this point, I didn't want to go to the doctors, for obvious reasons, so I just rode it out, but it got worse and worse. After a while, I suspected that she had oral thrush, so I did end up going to the doctors about that, and whilst we were there, they did have a look at her skin and said it's not eczema, but a fungal infection, so they prescribed antifungal cream and drops in her mouth. It was very difficult giving her the drops as she hated taking them, but finally, after using the drops four times, the oral thrush cleared up. The cream that had been prescribed to treat the fungal infection on her skin was less effective, and while it helped her hands, as there was obviously an element of fungal to it (she used to put her hands in her mouth a lot, so I assume she was speading the fungal infection from around her mouth to her hands), it just kept spreading, and it went from the little patches on her face and hands, to her stomach, back and arms.
At this point, when she was roughly a year old, I was completely desperate and I think I saw every doctor at the surgery; I remember that two of the doctors gave me two different types of fungal cream, and another two said it was eczema and gave me steroids (which I obviously refused), but, over time, it got so bad that she could barely sleep. This was when we got an urgent referral to the dermatologist at the hospital (I don't know what I was hoping for with this, but I just had to do something), and she ended up getting referred to the same dermatologist that I had seen severeal years ago for my skin who completely denied steroid withdrawal and said that it didn't exist. Funnily enough, she remembered me when I came in for the appointment with my daughter, and even though there was more recognition and accetance of TSW than there was when I first saw her, the dermatologist wrote on the paperork for my daughter that 'Amy believes that she has steroid withdrawal', so she still didn't believe me.
Her suggestion for my daughter was steroids (obviously...) and antibiotic cream, but I just couldn't do it, so we left without treatment. My daughter continued to have trouble sleeping, and she would wake up after 30-60 minutes crying as she was so itchy and uncomfortable – she just wanted to scratch all the time and would only sleep when she was so physically exhusted that she would almost pass out, following this pattern every single night. During this time, I was a shell of myself – sleep deprivation is a torture for a reason. My daughter was in so much pain and discomfort and I felt completely broken. I still judge myself for the decision I made, but in the end, I finally gave in and went back to the dermatologist who suggested that my daughter come into the hospital everyday to have a nurse put the topical steroid, trimovate (roughly the same strength steroid as eumovate), which has also got an anitfungal and antibiotic in it, on her skin. We did that for a couple of months, but as the symptoms weren't completely gone, we said enough is enough. Looking back, I can't even believe I ever said yes to it, but it's been over a year since we stopped treatment, and her skin didn't get any worse as a result of it or turn into potential symptoms of TSA, and in fact it's never got quite that bad again since going into hospital.
At nine months old, my daughter was also admitted to the hospital with a very bad case of eczema herpitcum, although it was misdiagnosed at first as an infection (even though I said to the doctor that I thought was eczema herpeticum...). As a result, they were two days late giving her the correct treatment.
After her steroid treatment at the hospital, we were then referred to Birmingham Children's Hopsital where the head of pediatric dermatology who saw my daughter said that her skin was unlike anything she had ever seen before: her rashes were circular and would always heal from the centre outwards before disappearing then reappearing and repeating the process. At first, the dermatologist talked about doing a skin biopsy, but as that option would have left scarring, they wanted to hold off unless it got worse. When I went back to the children's hospital, around 3/4 months later, as it had improved, they didn't do a skin biopsy and just disagnosed it as atypical eczema, which makes no sense to me – how can a doctor say that it's something they've never seen before then go on to say it's just atypical eczema?!
There is a part of me that does think that she has some type of steroid withdrawal-based thing because I was pregnant with her whilst going through TSW, and the extremity of her issues, but if that's the case, why did it only start after 6 months? My daughter's skin is much better now – her legs are clear, and her tummy and back are almost clear. She's got a few patches but nothing major at all. In terms of treatment, we've now gone down the holistic route, with a naturopath/nutritionist, and have made many changes including with her diet (low histamine, salicylate and antiinflammatory), as well as probiotics, vitamins and supplements. We also got a baby gut health test done.
11. Any advice to other mothers during pregnancy?
Accept help where you can. I felt because I was 'mum' I had to try and do everything by myself, but I desperately needed help – I needed to sleep, and I needed help with basic things like cooking and cleaning, so when I allowed myself to accept help from others, it made a massive difference. If help is there, take it, because it's an absolute godsend, and I don't know what I would have done without my mum and my brother, as well as my husband who was also working a lot at the time.
12. Breastfeeding advice?
Air them as much as possible. I also found these things called Koala Silver Cups, which are nipple shields that essentially hover around your nipples so that your nipple isn't squished down and constantly kept moist and wet the whole time. The shield offers a barrier between the nipple and bra, allowing them to heal quicker. I also used sudocrem and calendula cream which helped.
Chloe (@chloeandhereczema)
*1. A brief history of your skin journey.
Eczema has been part of my entire life. I was diagnosed as an infant and was told it was something I’d have to manage my whole life. I used topical steroids periodically throughout my childhood, but when I entered my teens I was having to rely on topical steroid creams very frequently and with increasing potency for longer periods. By my early 20s I was using topical steroids continuously with little effect and my skin was getting worse and worse and was completely uncontrollable. I learned what TSW was in 2015 and had my lightbulb moment and never looked back!
2. How many months into TSW were you when you found out you were pregnant?
I found out I was unexpectedly pregnant in November 2019, two months after my 4-year anniversary of TSW.
3. Was this your first child?
Yes.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
No.
5. What was your skin like before you found out you were pregnant?
September 2019 marked my 4-year anniversary of TSW, my skin was so amazing and the most clear I’d ever seen it. I had no idea if it was going to continue but I was enjoying it as 2019 had been quite a turbulent year with very bad flares.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
To my surprise my skin stayed amazing my whole pregnancy! I had my first flare free winter with not even a patch of dry skin or redness on me. My skin has never been as clear and amazing as it was with my first pregnancy with my now daughter Grace.
My second pregnancy with my daughter, Ottilie, was a different story – although TSW has long become a part of my past, I still have very mild very manageable eczema. My pregnancy with Ottilie did set off my eczema and I was very itchy throughout. I also found I was very sensitive and had persistent face flares which lasted until a couple of months after the birth.
7. Any unusual TSW symptoms you experienced during pregnancy?
During my first pregnancy, I did notice other skin changes: I developed something called cherry angiomas which look like small red moles. I was very sensitive to the sun and tanned very quickly and was more prone to burning. I noticed if I injured my skin at all it was much slower to heal and scars were hypopigmented for much longer. I also developed stretch marks in my last couple weeks of pregnancy. During my second pregnancy, my stretch marks developed earlier and were deeper.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
My skin during labour was very good and definitely wasn’t at the forefront of my mind. I had a water birth with Grace during the summer and an on land delivery with Ottilie. My biggest advice for keeping skin comfortable during labour and early postpartum is keeping cool! I opted for loose cotton clothing during labour and having a fan and ways to cool down were very helpful. If you are birthing in a hospital, the sheets can be very irritating and rough. I took my own pillow and pillowcase and had I still been in TSW, I would have potentially bought my own sheets. Also, I really considered having a homebirth so I’d be able to control my own environment a little more. Something I later decided against but definitely considering for any subsequent babies.
9. How was your skin after giving birth?
I had a postpartum flare with Grace all over my torso. You can have postpartum sweats and they can be particularly bad the first couple days, something I was not prepared for as a first-time mum! I’m not talking about waking up a little sweaty, I’m talking soaking through clothes, towels and bedsheets. Didn’t help we had a particularly hot summer in 2020. Sweat was and still is a big irritant for my skin so that set off a flare on my torso (mainly my back). I switched to cotton based nursing bras and made sure to get out of any sweaty clothes quick and it soon started to clear up, but it did take a couple weeks. With my second pregnancy I didn’t experience a postpartum flare like I had previously, I knew what to expect this time and was prepared, and also having a winter birth helped. It did take a couple months for my facial flares to settle down but they did and my skin’s been really stable since. My stretch marks with my second pregnancy have taken longer to heal and they are still incredibly itchy at times as they were deeper than previously.
10. Does your baby have any eczema/TSW-type symptoms?
I am incredibly grateful and lucky that so far neither of my daughters are showing signs of having eczema, although they both had very sensitive skin as infants and have come out in rashes from time to time. It’s always been a contact reaction to bath products so it’s something that I completely stopped using. We bathed them in warm water and occasionally a very gentle baby wash and a nappy barrier cream. Now they are both older I can use products on them without reacting but it’s something I keep to a minimum. Grace also had an allergic reaction to egg when we weaned her that brought her out in rashes. Luckily it’s something over time we were able to work on and by the time she was a year old, we had been able to introduce egg into her diet without any reaction.
11. Any advice to other mothers during pregnancy?
Take the bump pics! Set out time to make your own little at home photoshoot or have some professional shots. Even if you’re flaring and you don’t feel beautiful or “glowing” there will come a time when you will look back on those pictures with much kinder eyes and you will cherish those pictures of your baby’s first home. Also, don't compare yourself, which is harder said than done! Everyone experiences pregnancies differently and it’s good to take that time to focus on you! Spoil yourself, your body is working hard!
12. Breastfeeding advice?
My biggest advice in the early days of breastfeeding is to take one feed at a time and to know how and where to get support. If you’re in a hospital setting, ask for as much help as you can get! Colostrum harvesting and learning to hand express were very helpful in my second breastfeeding journey. We had an infant feeding team at my hospital who followed us up in the community and were amazing! I did a breastfeeding workshop that was on YouTube by the Positive Birth Company that helped me to prepare what to expect in the early days of breastfeeding. We had local breastfeeding cafes and feeding groups run by our health visiting team which was also very helpful. Also to take the pressure off as much as you can! The most important thing is a happy supported mum and a happy baby, there’s not a right or wrong way of feeding and everyone will have their own unique journey. You’re doing a good job and you should be proud!
Lilyanna (@lilyannar)
*1. A brief history of your skin journey.
Baby to 27 years old use of topical steroids (stopped breathing as a baby and was injected with steroids as treatment in ER. Coincidentally developed eczema right after the steroid shot and then continued TS and oral steroids treatment. My belief is that the steroid shot I had was the beginning of my downfall.
I discovered TSW when TS and oral steroids were no longer able to hide my condition. Mt first attempt at TSW was when I was 27 years old, but due to several hospitalisations, I succumbed to pressure to use steroids and immunosuppressants after 3 years of TSW.
From 30 - 32 years old, I used immunosuppressants (Methotrexate and Cyclosporine), but knowing the following treatments would not work, I began my 2nd attempt of TSW at 32 years old. Treatment: NMT. Total steroid use, almost 30 years.
2. How many months into TSW were you when you found out you were pregnant?
9 years TSW (likely other factors, such as mold etc).
3. Was this your first child?
First bubba.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
No meds.
5. What was your skin like before you found out you were pregnant?
Skin was doing pretty well. Still easily irritated but outside world would not have been able to notice a thing.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
I started to see changes quite dramatically end of first trimester. The itch was amplified, wounds not healing, new area activated (breasts incl. areola and surrounding tissue). The only area completely free of irritation was my belly. Our bodies are remarkable, it was completely different skin to the rest of my body.
Skin started to clear up towards the end of my pregnancy. I have some interesting news about this theory actually. I spoke with a functional doctor who was explaining how our body cycles through different immune levels. Each level is dedicated to doing different things. Th1, th2 and I think th17. When we’re fighting a virus, our body will automatically change to the th level required to fight etc. When we’re pregnant I was told it moves to a cycle that basically protects the baby, any underlying issues get brought to the surface as it is seen to be dangerous to the body, so our bodies are trying to release them, in my case TSW and mould toxins. When our bodies do not transition to this th cell (I think th2) our bodies are seeing the foetus as a foreign object which is then why we miscarry. I was told that it would worsen throughout my pregnancy but coming to the end of my pregnancy, as my body recognises that labour is nearing, my body will then transition back to th1 recognising that my baby needs to be removed from my body, so my th1 cells will begin to fight my irritations etc. This happened exactly as I was told. The last few weeks before having Eva my skin started to clear up, irritation lessened, and I didn’t feel so trapped in my body. The functional doctor explained that my body sits at a very high th2 level which is why I struggle to fight this as where a ‘healthy’ body will sit at th1.
I found this so interesting. I spoke with another TSW sufferer who was pregnant and this happened to her, too. Pretty much same timeline etc and from my understanding is now struggling again (after feeling really good once she had her baby) as she is pregnant again.
7. Any unusual TSW symptoms you experienced during pregnancy?
N/A.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
Ice packs galore. I bought all sizes from eBay etc for my chest, my back, lots of gauze and loose clothing. Honestly it was hell. Worse than I have ever had it. I cried all the time and swore I would never want to experience this again but the crazy love I have my daughter I would do it over and over knowing I get her in my life.
I opted for a non-medicated birth, I was insanely dry, cracked, scabby ashy skin, gauze everywhere, a complete mess, but better at this stage than I was earlier in my pregnancy.
9. How was your skin after giving birth?
The first week after giving birth my skin was glowing but then it started to get irritated again but nowhere near as bad as it was during my pregnancy. I have severe gut issues etc which I believe contribute.
10. Does your baby have any eczema/TSW-type symptoms?
Baby girl sadly has skin on the sensitive side but mum knows how to tackle that. Breastmilk has been a godsend and thankfully, her skin is simply dry, not seeing anything I’m too worried about. She has a lot of beautiful soft skin.
11. Any advice to other mothers during pregnancy?
I was surrounded by beautiful mothers sharing their baby bumps, gorgeous outfits, glowing skin. Women who were really able to embrace the true beauty that pregnancy can be. That wasn’t my reality but I would remind myself that I’ve been dealt different cards and that’s also my strength. My body was protecting my baby with all her might and she is fighting this battle with me, so my advice would be to be kind to your mind, gentle to your body. The dark days disappear and the most beautiful blessing will look at you with no judgement on how your skin feels or looks, will want to be pressed against the skin you can’t bear to touch and love you, all of you!
12. Breastfeeding advice?
It’s liquid gold. Do what’s best for you mentally but my breasts were a complete mess, completely oozing around the areola (I would apply gauze and cut around the nipple) it’s only now starting to heal 10 months postpartum. I’m still breastfeeding. Seek advice from a lactation consultant. I had the most beautiful lady help me. TSW mothers are next level. I felt so strong and empowered from my experience. I don’t know if there is much my body cannot handle (is how I felt). Awful that we suffer but trying to see the positive in it lol.
Gemma (@allergyfreepositivity)
*1. A brief history of your skin journey.
I was diagnosed with eczema at the age of 2 and given hydrocortisone. From then on I used it sparingly, I didn’t need it much at all, and from what I remember it was just usual irritation in the creases of arms and legs.
When I got to about 15 my skin worsened and the steroid creams prescribed got more potent, until about 25 which is when the creams completely stopped working altogether. I was at a loss and even had private treatment, which wasn’t any better – I was prescribed oral steroids for 6 weeks, and then the skin problems returned. I ended up having a skin prick allergy test when I was about 25 and I had become allergic to quite a few things; dairy, wheat, nuts, chromium, fragrance and propylene glycol, a preservative in many things including steroid creams. I was getting no benefit at all so had to stop, I was put on methotrexate and given Protopic cream because I was having severe reactions regularly. Methotrexate allowed me to give up the topical creams. I was on methotrexate for 10 months using no steroids at all and 5 months without using Protopic. I came off of methotrexate because COVID was here and it put me in the vulnerable group, but also because I really wanted to plan for a baby and you can’t get pregnant on this medication. I went into TSW at the end of October 2020. I first fell pregnant in January 2021 at 3 months TSW, but had a miscarriage in March 2021. At the time, I was suffering with TSW really badly, and the miscarriage coincided with having eczema herpeticum for the first time, too. After the miscarriage, my skin soon started to heal and by month 7 I looked almost healed. I then fell pregnant at around 9 months TSW and my skin started to deteriorate.
2. How many months into TSW were you when you found out you were pregnant?
10 months.
3. Was this your first child?
This was my second pregnancy but first to full-term. So first pregnancy at 3 months to 5months TSW and then second one was at 9 months to 18 months TSW.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
I wasn’t using any immunos, or natural steroids.
5. What was your skin like before you found out you were pregnant?
Before I was pregnant I felt about 85-90% healed. I still had small flares but they were minimal and mainly on my upper lip which is where I had used the cream the most.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
I started to notice changes as soon as I fell pregnant, it was one of the reasons I did a pregnancy test, too, as I could feel my skin getting more and more irritated as hormones increased weekly.
7. Any unusual TSW symptoms you experienced during pregnancy?
I experienced Eczema Herpeticum a few times so it's good to be aware of it to catch it early, I was able to treat it with a bit of cold sore cream. Pregnancy just felt difficult with the tiredness of pregnancy & not being able to sleep much at night. My skin was very oozy at one point and I’d end up with an itch fit and shower at about 2am every morning. My hands were incredibly swollen and flaring and burning quite often, they suffered pretty much the whole way through pregnancy.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
Once I went into labour my skin was actually fine, it was the least of my worries! I ended up having an emergency C-section with an epidural, and I had told the hospital I was allergic to steroids the whole time to make sure I wasn’t given any. Epidural for birth is different to the usual and doesn’t contain steroids.
9. How was your skin after giving birth?
My skin was great until 5 months postpartum, my hands were still inflamed for a while after birth but settled down and I didn’t need the cotton gloves anymore. After 5 months pp I started flaring again but it wasn’t as bad as the flares in pregnancy.
10. Does your baby have any eczema/TSW-type symptoms?
My little one is now 18 months and doesn’t have any skin issues!
11. Any advice to other mothers during pregnancy?
Take it slow, and try not to worry about how your skin will be once the baby has come as it may calm down once the hormones also calm.
12. Breastfeeding advice?
Don't force it if it’s not comfortable for you, as long as baby is fed that’s the main thing! I have been breastfeeding for 18 months as my daughter had tongue tie and wouldn’t take anything else. It’s been difficult at times but you do end up just doing whatever you have to for your child! I also recommend buying mepore dressings and cutting them to fit parts of the nipple if it’s oozing! You can still feed with them on.
Kimberley (@kimbers0102)
*1. A brief history of your skin journey.
12 years ago I had an allergic reaction to my orthodontic braces causing dermatitis on my face. I was prescribed topical steroids, and overtime my condition continued to worsen. 8 years ago my GP swapped steroids for Protopic. October 2020 I started TSW, immediately symptoms spread across my upper body (face, neck, chest, arms and hands). TSW caused alopecia universalis and cataracts in both eyes. I also had eczema herpeticum 9 times in one year.
2. How many months into TSW were you when you found out you were pregnant?
I was just shy of 3 years.
3. Was this your first child?
Yes.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
No none.
5. What was your skin like before you found out you were pregnant?
My skin had majorly improved with the occasional flare including eczema herpeticum flares. I would’ve said I was 85% healed.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
It started to worsen in the 2nd trimester.
7. Any unusual TSW symptoms you experienced during pregnancy?
The rash which was almost like layers and layers of small blisters spread across my entire body, every symptom worsened tenfold. My nipples were very dry, cracked, oozing with layers of flaking skin. Inflammation was so bad my skin was almost purple. I was bed bound for a month and housebound for most of my pregnancy.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
Things had calmed down greatly but still very hot, red and sensitive to touch. I had a C-section, but it was incredibly painful getting any injections or IVs in. No bandages would stick to my skin either, even if I had no lotion on.
Bring your own bed linen and towels. For any bed baths etc I used my own Dead Sea salt and Epsom salts, no soaps.
9. How was your skin after giving birth?
It was okay, not quite as bad, but then after it was still very sensitive, hot to touch and red. Terrible elephant skin all over.
10. Does your baby have any eczema/TSW-type symptoms?
N/A My baby passed away unrelated to TSW.
11. Any advice to other mothers during pregnancy?
Be kind to yourself. I know your body feels like a war zone right now and completely foreign to you but it is doing a wonderful job keeping your baby safe and healthy. You will be blown away at how perfect their little skin will be when you meet them. You have nothing to worry about.
12. Breastfeeding advice?
Do not put pressure or stress on yourself to achieve it, but it helps to eat and drink as much as humanly possible; lots of water, lots of carbs and protein! If you have dry, cracked nipples use your own breast milk to help heal that. Also get nipple shields, and bamboo or cotton reusable nipple pads from Amazon. Nursing bras from Seraphine are great on the skin, too. It helps to express little and often to get your supply up between feeds, even just by hand. It will feel strange, you can feel baby suckling the milk out, but it should never be painful. If it is then get some help with latching on and you’ll notice a difference when it’s right.
Cecillia (@misscecifrench)
*1. A brief history of your skin journey.
I was diagnosed with “eczema” as a baby and before I can even remember. I’ve had issues my entire life and had a rotating combination of allergy medicines and steroids at all times. I remember my stepmother mentioning to me at some point that whenever I went to visit I always came with a tube of steroids and a box of Benadryl.
2. How many months into TSW were you when you found out you were pregnant?
About 13 months.
3. Was this your first child?
This was my second child.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
At this point I was completely off any and all medicines besides marijuana to ease pain symptoms.
5. What was your skin like before you found out you were pregnant?
I was actually in a fairly good place. Not quite healed but really felt like I was on the cusp of being out of the trenches. I always try to keep realistic expectations because I know how much hormonal balance plays a part in skin health.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
I don’t feel like I had any significant changes. I didn’t get worse. I didn’t miraculously get better either. I felt like I was just on my normal healing track. I didn’t make many changes to my lifestyle aside from adding in prenatal vitamins so my diet and routines were still all the same.
7. Any unusual TSW symptoms you experienced during pregnancy?
No.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
My skin was actually almost perfect aside from a little bit of thickened skin. I did find an interesting connection though because while I was in labor and delivery I had to have a penicillin line because of a positive strep B test. This was something I did not experience with my first pregnancy and it was a little frightening because as we know with antibiotics, they kill good and bad bacteria. The intention of the antibiotics is to kill the bacteria so that it doesn’t infect the baby through the birth canal. I can only assume that I was highly susceptible to strep B because of my weakened immune system through the stages of TSW. Our biggest battle in TSW is the constant exposure to bacteria. I was really fearful that it would also kill the important bacteria the baby would need coming into the world. Sure enough my fear was realized and I was faced with caring for a sweet baby who also had sensitive skin, a low immune system and gut issues. We had to battle hard and hold our ground refusing steroids.
In general there’s a lot of excuses people make during their pregnancies to get away with poor choices. Don’t be that person. Don’t use pregnancy as an excuse to eat a bunch of garbage and not move around. This doesn’t mean don’t treat yourself here and there in a reasonable manner. Walking, moving around and keeping the circulation in your body flowing will help reduce fluid buildup and inflammation.
9. How was your skin after giving birth?
My skin is even better than before and continues to get better with its own little bumps in the road. I don’t expect perfection ever but I’m very happy with all that I’ve learned about my body’s needs.
10. Does your baby have any eczema/TSW-type symptoms?
As mentioned in a previous answer, due to my labor and delivery process (ended up with an emergency C-section and a whole lot of trauma but that’s another story), my daughter did end up with very sensitive skin, little immune system and horrible gut health. It’s been a huge battle figuring out how to best help her while healing and also being completely triggered in Dr’s visits and when looking at her skin. I’m happy to say that we have gotten her in a great place completely naturally.
11. Any advice to other mothers during pregnancy?
When you prioritize your own health first, your baby’s health will follow.
12. Breastfeeding advice?
Stay the course. Nipple ice rings are amazing. Your own breastmilk is very healing. Let the nipple free. Don’t feel ashamed EVER.
Georgianna (@georgit24)
*1. A brief history of your skin journey.
I developed eczema as a baby and from a young age I was prescribed hydrocortisone. At first, it started off as typical childhood eczema, with it behind my knees and in my arm creases etc, but when I hit my teens, I would have these big flares, which I'm guessing at this point was more down to symptoms of TSA than eczema, but all the doctors would do was prescribe more steroids. By my early twenties, it was just a constant cycle of big flareups followed by little breaks from symptoms after using steroids before just flaring up again. By my mid-twenties, I was starting to feel like the flareups were down to the steroids than eczema, but when I'd voice my concerns to the doctors, they didn't listen to me and just told me it was eczema.
Ten years ago, when I was around 24-25, I was put on a very strong immunosuppressant medication because doctors didn't know what was going on, but when I look back at photos, it was obviously full-blown TSA. In the end, I had to come off the immunosuppressant because it was making me ill and all my hair fell out. I also had constant eczema herpitucm, and for three months, I literally lived on the sofa. That was obiously my first real TSW flare, but again, I didn't know it at the time and neither did the doctors. I got that flare under control with steroid tablets and strong steroid creams, but it was a continuous cycle of haing a bad flare every month when I tried to wean myself off the steroids, which I took as directed by my doctor.
Fast forward to August 2022 when I started having a flare that the steroid tablets and creams couldn't control – it was just full-blown TSW all over my body. That's when I found Dr Heba's video, 'An Overview of TSW' (here) which was life-changing as I knew instantly what was happening to me, but for the first year, I was bullied by doctors into using steroids again as my symptoms were severe enough that I ended up in hospital (at this point, the medication was also affecting my eyesight), but after that, I was just done with this medication.
2. How many months into TSW were you when you found out you were pregnant?
I was around two months TSW when I found out I was pregnant.
3. Was this your first child?
Yes.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
No. I very nearly used a jak inhibitor, and was actually waiting for it to arrive in the post, but it never turned up, so I took it as a sign and I never ended up using it :)
5. What was your skin like before you found out you were pregnant?
As I was still at the start of my TSW journey, my symptoms were pretty bad.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
During pregnancy, my skin was up and down, although I would have a few breaks, and I don't know if that was down to the hormones or not. When I got to 26 weeks TSW, however, I was told that I was a high risk for pre-eclampsia and said that I'd have to be given steroid shots and possibly deliver the baby early and I just fell apart. Now, looking back, I actually wonder if however TSW was affecting my body was showing in my blood results as high risk pre-eclampsia, but obviously there's no way to prove this for certain. By now, I was 8 months steroid free and my skin wasn't doing too bad – I was still obviously having bad flares, but it was starting to become more manageable. I ended up having two steroid injections a day apart which caused my skin to go back into a full-blown TSW flare.
7. Any unusual TSW symptoms you experienced during pregnancy?
N/A.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
Unfortunately I flared when I was giving birth.
9. How was your skin after giving birth?
For the first four or five months after giving birth, my skin was at its worst before it started to get better. After pregnancy, I did get some postnatal depression, but I've suffered with my mental issues through most of my life, and I think a lot of it is down to my skin and what I've been through with it.
10. Does your baby have any eczema/TSW-type symptoms?
He does have eczema, but it's not horrendous, and I just moisturise it. I sometimes give him an antihistamine for the itch, but really, I think it's such a natural thing for most babies whilst they're trying new things to react to them at first, and thankfully, his eczema flares do not last very long and it's just a little bit of eczema every now and then.
11. Any advice to other mothers during pregnancy?
The advice I'd give to mothers is the same as the advice I'd give to anyone during TSW – just follow your body and do what you feel your body needs. For me, that was having up to four baths a day when it was really bad, and using a natural-based moistuser or a product like Epaderm, which worked really well for me. Follow your intuition and trust in your body – that's what got me through. It's very difficult during pregnancy to recommend anything because there is not much you can do or take, but what I've come to realise is that it's just about letting your body go through it. It's scary, but it's not impossible, so just make sure you have a good support network around you. Also, try to reach out to other mothers who are going through it because honestly it's the community that got me through TSW. Don't be scared to ask for help – reach out to anybody and everybody because I think we are so used to not wanting to bother people.
12. Breastfeeding advice?
I did struggle with breastfeeding – not because he was on my breasts, but because it was painful to hold him in my arms as I'd get hot and sweaty and irritated. At the beginning, I was so adamant that I wanted to breastfeed him, and I loved doing it, but unfortunately, after a while, my milk dried up and it became really painful to do so. At first, I felt so guilty when I went over to bottles, but when I did, it made my life so much easier and I realised that he's still getting the nutrients he needs, so I advise mothers to just let go of that guilt and don't put pressure on yourself that you have to breastfeed. Your baby is going to be nurtured and healthy either way, so do what you feel comfortable with. If you feel like breastfeeding, great, but don't feel guilty and do what you need to do to survive. I beat myself up so much and I really didn't need to.
*
1. A brief history of your skin journey.
Childhood allergies with mild patches of eczema (inner elbows and knees). In my late 20s, both became more severe and I was prescribed Fluticasone nasal spray for allergies, which I used in both nostrils nightly for around two years, but I think I also used Fluticasone in cream form for the skin on my face to address the small patches that came up occasionally. My congestion and nightly wheezing got worse, so I was prescribed Flonase and Advair (steroid inhaler) to use in my early 30s. I continued to use topical steroids infrequently during this period for the small rashes that came up.
2. How many months into TSW were you when you found out you were pregnant?
I didn’t get TSW symptoms until after I got pregnant with my 2nd child. It was probably around 3/4 months into the pregnancy when I started getting severe itching all over my body, redness, etc, although I wasn't completely sure it was TSW at the time.
3. Was this your first child?
No, it was when I was pregnant with my 2nd in my mid-thirties.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
I didn't use liquorice or ashwaganda, but right before the onset of TSW, I switched over to using Protopic on my face for a few months because the derm knew I was trying to get pregnant with my second child and he wanted me to reduce my use of topical steroids. He didn't address the Flonase/Advair which was prescribed by my internal medicine/primary doctor at the time. During pregnancy, I asked the derm for Prenisone in the hopes of controlling the TSW symtoms since they thought it was severe eczema. He warned me it was probably going to come right back, and it did – but that was the last time I used any kind of steroid (Jan 2019). The derm told me I could try Dupixent and to ask my OBGYN, but my OBGYN said that it was too experimental for pregnant women when she looked into it. I had gotten approved for it by insurance, but decided not to do it because of what the OB had said. Since steroids and Dupixent were not options, he recommended UVB, so I started that probably when I was around 5/6 months pregnant.
5. What was your skin like before you found out you were pregnant?
My face was always very sensitive so I would be terrified of touching my skin since I felt like it would be easily irritated or acne would come up easily. I had rough patches of eczema on my face during severe episodes of stress, but my face was looking mostly great right before TSW. I did have some small patches of eczema in my inner knees and elbows, but I never had widespread itching and TSW symptoms before.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
It was around 3/4 months into the pregnancy that I started having the onset of TSW.
7. Any unusual TSW symptoms you experienced during pregnancy?
I did Narrowband UVB light therapy up to 3x/week for around 2 months, which helped the symptoms on my body, but actually made my face worse which became more red and the skin was very thin, although it did stop the itching and severe flaking. The redness was baffling to the dermatologist since he had never seen a reaction like it, and he did not know why the UV treatment did not work for it. After a few months of using UVB, I would go in every few weeks if necessary when it was under control, so I didn’t really go much during the last few months before giving birth (June 2019).
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
The TSW symptoms were mostly under control due to several months of UVB light therapy, but then the symptoms came back immediately after birth so I had to start light therapy again one month postpartum. During that first year postpartum, I realized it was TSW and stopped doing all light therapy since I knew my body just needed to go through TSW to fully heal, and that the light therapy would put a slight pause on it as it felt like it was acting as an immunosuppressant.
9. How was your skin after giving birth?
My TSW came back full force around 9 months postpartum, which is when we had a lockdown from the pandemic in early 2020.
10. Does your baby have any eczema/TSW-type symptoms?
My 2nd child has occasional dry skin patches, especially in dry/cold weather, which is managed by lotion right after a shower/bath. No eczema/TSW symptoms otherwise.
11. Breastfeeding advice?
My breasts did itch significantly while nursing my 2nd child for 24 months. I weaned her when I had to go on some health related treatments that would have been toxic to her. I don’t regret the breastfeeding because at the time, my daughter made it really hard for me to wean and I felt the mom-guilt of keeping it up since it was one of the few things I was able to do for her as I was going through TSW. But I would advise other mothers to please listen to their mental health and not put that more in jeopardy. Breastfeeding is already extremely tiring on the body, and the TSW symptoms made breastfeeding extremely difficult due to the itching and all the skin-to-skin contact. It is extremely important for moms to do what is possible to be comfortable and children are so resilient.
Lucie (@tsw_inquisitive)
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1. A brief history of your skin journey.
Treated for eczema since 5 yo, using topicals on and off. Protopic on and off since 17 yo – offered as a safe alternative to steroids. I don't consider myself a heavy topical steroids and Protopic user.
Went through TSW for 9 months in 2016 without knowing about TSW until I was hospitalised and treated with topical steroids. I then went through withdrawal until the end of 2022, with a rebound after Covid.
2. How many months into TSW were you when you found out you were pregnant?
3.5 months.
3. Was this your first child?
Yes.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
No.
5. What was your skin like before you found out you were pregnant?
Swollen, oozing, scabby face, neck and arms, and hair loss which led to me cutting most of my hair off one week before finding out I was pregnant. The rest of my body was clear at the time.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
In month 2-4 my skin cleared pretty well. The itch was stil intense, but seeing the pics from that period, I was pretty clear.
7. Any unusual TSW symptoms you experienced during pregnancy?
Thermoregulation issue, which is not unusual, but it was amplified by the pregnancy. I used to have very intense and long hot flashes that wouldn't stop and was causing terrible stinging and itching.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
My skin felt very unformfortable as I went through flare after flare during months 5-9. I was basically more afraid about sweating during the labour than about the labour itself :))) But the experience was so intense, I eventually forgot about my skin.
I suggest giving birth in the bath, which can bring relief to the skin and you won't focus on it so much. I didn't give birth in the bath but I had wet towels avaliable and my partner was constantly wiping me down with them.
9. How was your skin after giving birth?
I was so blessed as my symptoms, especially the itch, subsided immediately after giving birth. I went to the bathroom about 1 hour later and I honestly didn't recognise my face in the mirror after 1 year of TSW. I would say 70 percent of the swelling was gone, I still had very dry and wrinkly skin all over the affected areas, but I felt relieved that there was no itch and no redness which lasted about 14 days.
10. Does your baby have any eczema/TSW-type symptoms?
No and I thank God every day.
11. Any advice to other mothers during pregnancy?
Rest as much as possible and try to be as mentally calm as possible, you are doing this for the baby. I wasn't very good at it as I used to feel a lot of anxiety, fear, pain and discomfort, as we all do ... but I kept talking to the baby, assuring him of our love and explaining how I was feeling and why, and that it wasn't his fault.
12. Breastfeeding advice?
Fortunately, my nipples and breasts werent affected, so I didn't have a problem breasfeeding like a normal mama.
To all the TSW mamas, I keep you in my heart. You are strong warrior goddesses!
Sinead (@sinead.hehir)
*1. A brief history of your skin journey.
Used steroids since I was 4/5 years old sporadically to treat my eczema. I also had steroid inhalers for my asthma that I would use every morning and whenever I was short of breath. When I went to college my skin started to break out more often due to a horrible diet, drinking alcohol regularly and wearing fake tan a lot more. I started getting monthly prescriptions from my doctor for both eumovate, which I was to use on my arms, and betnovate, which I was to use on my legs, then I would use the 5% hydrocortisone cream on my face and neck. I was masking the poor diet and excessive alcohol with the steroid creams so I could keep living the same way. The creams stopped working after a year of using them biweekly. I tried protopic for a little while but it burned so bad and the warning on the box scared me too much to continue using it. My rashes didn’t look or feel like eczema anymore, what I had grown up with all my life; I started to think I had scabies, bed bugs, cancer, everything under the sun, until I came across you online (Cara) and then everything made sense.
2. How many months into TSW were you when you found out you were pregnant?
4 and a half years into TSW.
3. Was this your first child?
My first baby yes, a boy called Kian.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
I never used anything else since day 1, just went cold turkey.
5. What was your skin like before you found out you were pregnant?
Soft and clear, no issues at all except sometimes little breakouts on my hands and neck. But those breakouts looked more like eczema to me.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
One month into the pregnancy my TSW rash came back and I was covered head to toe again, I hadn’t had a full body rash like that since I was 6 months TSW. I put it all down to my first trimester hormones. As soon as I entered my second trimester the rash disappeared completely.
7. Any unusual TSW symptoms you experienced during pregnancy?
Just went back to getting all the usual TSW symptoms that I had at the beginning of TSW, I hadn’t experienced them for over 2 years.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
My skin was so soft and clear when I gave birth so I didn't need anything to help me feel more comfortable.
9. How was your skin after giving birth?
My skin was so beautiful up until 6 months postpartum. Then I got a rash all over my face and neck. It lasted months, I didn’t want to leave the house with it. It would come and go constantly and would clear for a few weeks only to come back again for another few months. I found my lips and eyes would swell. I started getting hives also, but once I hit 2 years postpartum, I’ve been clear again since, so I don’t know whether it was hormones or to do with the Covid vaccines because it happened 10 days after a booster vaccine.
10. Does your baby have any eczema/TSW-type symptoms?
He seems to have itchy dry legs, I feel it was triggered after receiving a vaccine because he had always been clear up until he got specific shots and then a few days after the shots the rash appeared.
11. Any advice to other mothers during pregnancy?
Salt baths, rest, an amazing support system. I don’t think I could have another child though, for fear it would trigger TSW and it happen to my body again. It’s the only thing stopping me from having a second. I couldn’t imagine having a toddler, a newborn, a skin condition and a job I need to get back to.
12. Breastfeeding advice?
I was clear for the first 6 months postpartum, so I don’t have any advice to offer. But for something that is SO natural, it is so hard to do, so be kind to yourself and lower your expectations lol.
Maryam (@drshockri)
1. A brief history of your skin journey.
I was born with atopic dermatitis. It was full body and got more severe gradually. I used steroids for 23 years. My mom started using it according to the dermatologist prescription. In 2014, I stopped using steroids and started the withdrawal.
2. How many months/years into TSW were you when you found out you were pregnant?
7 Years (in 2021).
3. Was this your first child?
Yes (first pregnancy, first child).
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
No.
5. What was your skin like before you found out you were pregnant?
My skin was completely clear. Sometimes when I was sressed I would get some flareups just on my face and fingers. It would usually go down within 4-5 days.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
Month 8, third trimester. I started to swell up, and it caused my fingers, face and belly to get itchy. I was scratching a lot at night. My skin was clear though. I had no scars or flares during the pregnancy.
7. Any unusual TSW symptoms you experienced during pregnancy?
No.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
My skin was clear. I had a C-section and had no issue regarding eczema or TSW around the stitches. (I was mentally so stressed by my eczema though. I remember the whole pregnancy and the day of delivery I was anxious if my daughter has red cheeks or any eczema related symptoms when born. The first question I asked my husband in the operating room was “how is her skin?”. My husband had to explain to the doctor why I am asking it and why I am so nervous. I was lucky I was not having the physical symptoms of TSW or eczema that day, but I was mentally affected very much.)
9. How was your skin after giving birth?
My fingers were the first area that started to crack and get dry within the first 2-3 weeks from the constant manual work of washing and changing diapers. I had no help, and it was me and my husband for the first 2 weeks so it was really hard on my skin. Also, I was not able to sleep because I was breastfeeding and the constant lack of sleep was also affecting my skin. I had very mild dryness and flares on my face and fingers during the first 2-3 months. (The first months after delivery are the hardest because the baby does not sleep through the night and needs to be fed more frequently. Some babies like my daughter have colic so they cry a lot because of belly pain. I was mentally and physically drained. The whole of motherhood hits you in the face. We usually hear the good sides of it but it has a very dark side that no one really talks about.)
10. Does your baby have any eczema/TSW-type symptoms?
Yes. When she was almost 14 months, she started getting rashes in her arm creases. Despite the paediatrician insisting on using corticosteroids, we did not use anything. We just kept the rashes dry and put her in long sleeves, and also asked daycare not to allow any play with water so those areas stayed dry. It got resolved after 2 months on its own. Recently, I noticed there was a dry eczematous rash behind her neck and a round one on her thigh (like the ones that got resolved). Our plan is not to apply anything and just to monitor diet and let it heal itself. I know it is mentally so hard for a mother not to do anything. I remember the paediatrician told me I am not a good mother because my daughter is suffering and needs the cream and I reject it. I was challenged and I was accused, but I know what is right for her and my husband is also 100% supportive. Sometimes doing nothing is harder and I will do whatever it takes even if it is hard for my baby. I have been down this road, and I do not want this for anyone else.
11. Any advice to other mothers during pregnancy?
I was lucky I did not have the physical symptoms at that time so I cannot say much. The only thing I can recommend is having a clean comb or brush and using it as a scratch tool. The amount of itching I was experiencing from my belly getting bigger was insane (especially last trimester). For the mental side, I was trying to take it as easy as I could. I stopped eating meat and was totally vegan for 7 years when I got pregnant, but my cravings were for meat and kebabs. At first, I ignored them because of my diet and skin, but then I let it go and started eating it (even to this day I am still eating meat and no longer vegan). I was so anxious of getting a flareup, but I didn’t, and I had so many junk foods during that time. I was lucky I did not get any breakouts or flares, but I know everyone is different.
12. Breastfeeding advice?
Again, take it easy! I was so determined not to use any formula and just to breastfeed. I had a C-section, and I was not producing enough milk. Even with pumping all the time, my milk was not enough. The baby was crying all the time, and I was forced to use formula in addition to my own milk from the second day. I was so stressed out about giving her milk and dairy and the potential of it causing eczema, but I had to do it. I chose hypoallergenic formula (Nutramigen Formula). My daughter did not show any sign of eczema while she was on formula. On the other hand, from the constant pumping and breastfeeding, I developed very bad ulcers around my nipples which oozed all the time. It was so painful that I had to choose either to stop breastfeeding or to apply corticosteroids and antifungal cream (which the baby would also consume when latching onto my breast). I chose to stop breasfeeding and just to continue formula. It took almost 1 year for my nipples to clear up. Doctors were insisting on steroids but again I did not apply them and waited till they healed themselves. If I could go back, I would never have breastfed. It was an extra pressure on us. The first 3 months is already horrible with the sleepless nights and mental drainage and physical change of the body and the whole new world of motherhood and the hormonal and mood swings. I just made it worse by breastfeeding. I should have accepted that breastfeeding is not for me. I should have known my skin sensitivity. I cannot even say how much relief I felt the day my husband returned that pump, so for me the only advice is “take it easy!”
Rupee (@rupeekan)
*1. A brief history of your skin journey.
I have suffered with eczema pretty much my whole life and have used steroids on and off for about 15 years. Looking back now I think I have gone through TSW twice. I had eczema as a child which I grew out of but when I turned 16/17 it all came back with a vengeance in places I never had it before! I suffered for a bit with an oozing and flaking face but then started using steroids under the guidance of a dermatologist. My skin had settled after a year or so but I was still using topical steroids here and there for patches on my face and body.
About 2.5 years ago I noticed a patch of eczema on my hand which wasn't responding to grade 6 potent steroids. I did some research and came across TSW. I realised then that I had been in topical steroid addiction for quite some time and going into withdrawal was what I needed to do next.
2. How many months into TSW were you when you found out you were pregnant?
I was 22 months into TSW.
3. Was this your first child?
My third baby.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
Nope. I actually came off an immunosupressant – cyclosporine – about 2 months before I fell pregnant.
5. What was your skin like before you found out you were pregnant?
I had already started to flare about a month before I fell pregnant.
Interestingly, about 1 week into falling pregnant my skin was incredible ... soo dewy, clear, soft, urgh, it was amazing! But that only lasted 4 days. It all went downhill after that.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
About 1 month into falling pregnant my symptoms slowly got worse. I'm not sure if this was down to coming off cyclosporine 3 months prior, or pregnancy hormones, or a combination of both!
My skin started to get better during my third trimester. I thought I had started to heal. The ooze and red, inflammed skin had gone, I was no longer itching as much and if I did have a good scratch, I wasn't bleeding. I feel like time is the only thing that helped me get to this point. Things that made me comfortable were being outside – it's like my body forgot about TSW when I was in nature. Also dead sea salt baths helped me be comfortable.
7. Any unusual TSW symptoms you experienced during pregnancy?
I wasn't sick at all during this pregnancy! Which is shocking because during my previous 2 pregnancies I had hyperemesis gravidarum!
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
My skin was great during the birth. Wearing 100% cotton clothes helped as there is nothing worse than having clothes that are uncomfortable, especially after birth.
9. How was your skin after giving birth?
Skin was doing really well, no more flaking or itching. I had some pigmentation on my face where I had "elephant skin" but that gradually went after a month or so. I started flaring again about three/four months postpartum (October/November 2023).
10. Does your baby have any eczema/TSW-type symptoms?
Unfortunately this baby does. She has eczema on her body which comes and goes. I am breastfeeding and I haven't been able to pinpoint all the foods she is reacting to yet. She also has seborrheic dermatitis (cradle cap) on her forehead and cheeks, which is making her itch all day long. It is quite triggering for me cos I am currently super itchy, too.
11. Any advice to other mothers during pregnancy?
The only thing that got me through was focusing on the baby. I haven't shared this before but I was in the darkest place during the first trimester, I didn't want to be here anymore, but hearing my baby's heartbeat got me through my darkest days.
This may sound really stupid but try and focus more on the baby than yourself. Of course, you need to look after yourself and be kind to your body, do everything you can to make yourself comfortable, but don't get too wrapped up in how your skin is. At the end of this pregnancy you will have a beautiful little baby who will give you life again x
12. Breastfeeding advice?
I wear a maternity cotton cami (H&M) underneath a long sleeved cotton top. Lift the top up and pull the cami down – this protects your skin (tummy) from being exposed. I am much more comfortable feeding this way cos my tummy can get quite itchy and the cami gives me an extra barrier against the outside world!
*
1. A brief history of your skin journey.
It all started in July/August 2018 when I was given steroid shots in my shoulder for an injury. Around the same time, I took some cortisone tablets to treat something else and steroid eye drops for five days in October 2018 for an eye infection. This was all in a three-month time frame. When I stopped using the eyedrops, that is when symptoms of TSA started, but I didn't know what it was at the time. Up until then, I'd never used any type of strong cortsone before – I'd maybe used topical steroids three times in my life for 1/2 days on my upper lip, but that's it. I was 32 at the time and didn't have a clue what it was, but I just knew that this reaction after stopping the eyedrops wasn't eczema. I'd had eczema when I was younger, both in my childhood and teens, but my mother refused to use any kind of steroid on me that all the doctors wanted me to take, and at the time, I managed to control my eczema with nutrition.
After I stopped using the eye drops in October 2018, I didn't know what to do until finally eight weeks later in December 2018, I went to the doctor and was prescribed topical steroids, which I used. When I stopped using the cortisone, my symptoms came back, but this time they were worse. That is when I started to research cortisone because at that point it was clear to me that something had happened to my skin because of the steroids, and that is when I found out about TSW and my journey started. Since July 2023, my skin has been back to normal and better than ever. For four and a half years, I experienced all the classic TSW symptoms, and even though my usage was minimal, I believe it took me that long to recover because I used orals and injectables.
2. How many months into TSW were you when you found out you were pregnant?
I became pregnant in May 2021 (around 2 years, 7 months TSW).
3. Was this your first child?
Yes.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
No.
5. What was your skin like before you found out you were pregnant?
My skin was bad, but not like it was during the earlier stages of withdrawal, so even though I still had difficult symptoms, it was livable. I'm self-employed, so I didn't really have a choice and had to keep going.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
I found out I was pregnant when I was 6 weeks along, but I remember when I must have been one week pregnant, my skin suddenly went crazy, which I believe was down to a change in hormones. My skin was suddenly very dry and irritated, and it wasn't just parts of my body that were affected, but full-body. That happened throughout my pregnancy – when there was a change in my hormones, my skin would go crazy.
7. Any unusual TSW symptoms you experienced during pregnancy?
As above. Whenever my hormones changed I found that is when my skin would go crazy, which makes sense considering how steroids affect your cortisol levels.
Also, I am not sure if this is because of TSW, but all my life I've had these tiny dry white bumps on my hands. During pregnancy, those bumps started to spread all over my body and they were very itchy. They might have been as a result of scratching so much or just a symptom of withdrawal.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
To be honest, I wasn't focussing on my skin much when I was giving birth, and I remeber even two/three days postpartum, I didn't care about my skin at all.
9. How was your skin after giving birth?
My skin was really good and I think it was because during birth, you are literally emptied of everything in your body.
10. Does your baby have any eczema/TSW-type symptoms?
No TSW symptoms, but she does have skin issues. Sometimes she will get patches of dry skin and small rashes, but when I give her probiotics and focus on her diet, it all goes away.
11. Any advice to other mothers during pregnancy?
Try to keep your gut healthy with lots of fibre and unprocesed food. While I'm not suggesting all mothers go vegan, a diet rich in plants can help support you and your baby through pregnancy.
12. Breastfeeding advice?
*1. A brief history of your skin journey.
In August 2017, I was prescribed Topicort (Desoximetasone 0.25%) steroid cream, one of the most potent steroid creams, for eyelid dermatitis. I used it very sparingly on my eyelids to treat the eczema. After about 9 months of use, the rash spread to my neck & chest so I started using the cream on those areas as well, but soon more small patches started to pop up on my arms and legs, so I used it there, too. In May 2018, I went again to my dermatologist in desperation because this did not feel like eczema anymore – it felt like something was wrong. My skin was bright red, burned intensely and was extremely painful in water. The dermatologist gave me Elidel (a topical immunosuppressant) to use on my face and neck, and was instructed to use the Elidel and the Topicort at the same time. She also prescribed me a barrier cream to "lock in" the medication. I used this combination every day through the summer until I decided to stop the Elidel when I found out I was pregnant in August of 2018. About 4 weeks later, I stopped the steroids.
2. How many months into TSW were you when you found out you were pregnant?
I stopped using the steroid creams and immunosuppressants when I found out I was pregnant. I had no idea that stopping the medication was going to cause such a serious reaction. When I found out I was pregnant I stopped using the immunosuppressant immediately due to the black box warning. Even though my dermatologist told me the steroid cream was safe during pregnancy, I was skeptical to use or take any medication while pregnant. After a friend had told me about withdrawal symptoms I had hoped to "wean" off the steroid cream. I used it for a couple of weeks attempting to wean, which ended up not working at all, so I stopped cold turkey on September 8th, 2018 (6 weeks pregnant).
3. Was this your first child?
No, this was my third child. At the time I had a 6 year old in first grade and a 3 year old in preschool.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
As above. After my failed attempt weaning off steroids, I stopped using all steroids and immunosuppressants cold turkey 6 weeks pregnant.
5. What was your skin like before you found out you were pregnant?
I was really suffering for many months with my skin before I found out I was pregnant with all the classic symptoms of TSW, although at the time I had no idea what was going on. I went to an allergist wondering if I was allergic to something, I tried elimination diets, changing all my products, but nothing worked. My skin continued to worsen and I continued to use more and more steroids to manage it. At the time, I was still using topical steroids and immunosupressants.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
My skin was so bad leading up to pregnancy and it just continued to get worse and worse, especially after stopping the steroid creams. Every single day was worse than the day before for my entire pregnancy. The red skin continued to spread slowly from my face & neck, to my chest, down my stomach and back, down my legs and arms, until my entire body was 100% covered. This process of spreading took about 4-5 months. As I mentioned every day was worse than the previous day, nothing cleared up. I spent day after day, month after month in the bath, bandaged, and unable to take care of my two children or myself. I had live in help for almost 7 months. My skin was so thin it ripped and bled, oozed, wept, burned, crusted, shed, stung, itched deeply, intense nerve pain, stabbing sensations, my body shook uncontrollably, I was extremely swollen, I could go on and on and on.
7. Any unusual TSW symptoms you experienced during pregnancy?
I had a lot of the classic TSW symptoms as mentioned in other questions, but during my pregnancy I had one symptom that never really appeared again over the course of my 4 ½ year withdrawl. For about 3 months at the end of my pregnancy my skin was covered with open small red holes. I haven't spoken to really anyone who has experienced this, but these tiny holes that covered my body would constantly flush so my skin was always wet. I would change my clothes multiple times a night, my sheets were soaked through, it was disgusting. My husband would buy pee pads at the pharmacy and line the bed under the sheets each night and change the pads and sheets each morning. I wrapped my arms and legs each night with viscopaste bandages and I had so many arm and leg covers I bought on Amazon that I would wrap my body up with. I would soak my skin with Domeboro soak in the hope that it would dry up and not flush so much. My skin was so thin during my later stages of pregnancy, it barely felt like it was holding my body together.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
When I went in to be induced into labor my legs and arms were completely bandaged (I used viscopaste bandages then covered with gauze) and the skin on my body was open, raw and oozing/weeping. My clothes were constantly wet and I was severely uncomfortable. At the time I was spending 8-10 hours a day in the bath so I was very nervous about going to the hospital. The few days leading up to the birth I was trying to spend more and more time out of the bath watching TV or playing video games to keep me busy. The stabbing sensations were so intense it was very difficult.
9. How was your skin after giving birth?
This was like a miracle and honestly the craziest thing that happened to me. The dramatic drop in progesterone, which usually happens over the 72 hours after birth, had a huge impact on my skin. Immediately the color of my skin started to change. Within 24 hours my skin was noticeably stronger and actually started to shed off a layer. By 3 days after I was probably 50% better than I was going in. I was actually able to hold my baby, skin to skin, after birth. I was able to nurse him, hold him, get up at night with him. Up until the moment I went in to the hospital I was barely able to take care of myself.
While I did have a huge and miraculous element of healing, it was still pretty bad. My legs and arms were raw and oozing, my hands were bandaged, but I had about 4 months of what felt like freedom. I nursed my baby, I took care of my other children, I was able to hug and hold them, read to them at night, cook and enjoy my time despite my suffering. At about 5 months postpartum my symptoms became extremely severe again and I was once again full body and unable to care for my children again. It happened very quickly and out of nowhere. Over TSW I had been going to see Dr. Marvin Rappaport and he advised me to stop breastfeeding and start cyclosporine, which I did. Within a couple weeks I started to get my life back and was able to care for my children again. There I stared my journey of taking medication to manage the remaining 3 ½ years of my withdrawal. I took about 4 ½ years to fully heal.
10. Does your baby have any eczema/TSW-type symptoms?
My children are 11, 8 and 4 and none of them have eczema. None of them have any TSW symptoms. Having said that, my TSW baby was my third so I was very famliar with newborn skin. All 3 of my kids had very severe rashes on their faces during the first year, especially my middle child. Saliva from babies drooling can cause rashes, and my 2 boys drooled a lot! The rashes were very red, open, and if I didn't know my other two kids had this (before I ever used steroids or had TSW) I would have thought it was related. But they all grew out of it. One of my kids had really bad eczema on the back of his knees when he was 2. I didn't do anything, not even diet and it went away.
11. Any advice to other mothers during pregnancy?
I used meditation (I liked the Calm App on the iphone) to cope with the pain, that was all I could do. I played Tetris or other games on my cell phone to keep my hands from picking, scratching or rubbing my skin. I did manifestation, visualization and lots and lots of meditation to manifest healing. I visualized myself feeding and holding my baby. When I closed my eyes, I tried to focus on my baby and his every movement inside my body to remove me from the pain.
12. Breastfeeding advice?
It hurts at the beginning, and your nipples will crack and bleed even under normal non-TSW circumstances! I just fed him through the ooze, I used pads in my bra to collect ooze or these plastic nursing shells that protected my nipples from rubbing on my bra if my skin was too was open. The shells/cups also catch extra milk drops. I used a lot of nipple cream as well that was soothing when they would crack and bleed.
*1. A brief history of your skin journey.
I’ve had eczema all my life and tried multiple creams throughout the years. I had used steroid creams for ages, I can’t remember when I even started, would’ve been when I was young. It would take me hours to have a bath to feel relief just to cry in pain after when I would put cream on. I eventually ended up in withdrawal at the end of November 2020.
2. How many months into TSW were you when you found out you were pregnant?
I was 1 year & 11 months in.
3. Was this your first child?
Yes.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
No I wasn't using anything.
5. What was your skin like before you found out you were pregnant?
It was bad. I was going through a really horrible flare with TSW and had only just started to get a little better from being bed bound and my hair falling out.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
At the start, I was just coming out of a bad flare and that was October 2022. By January, I was flaring again and it was really bad all over my face and chest. As spring started it slowly improved.
7. Any unusual TSW symptoms you experienced during pregnancy?
I would say if anything pregnancy helped with my TSW. As I said I flared just before I was pregnant and at the beginning but eventually I was able to start showering without putting cream on and I could wear dresses again and have my skin out.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
My skin was fine. I was worried I would flare from the stress but compared to how bad it used to be, I don’t remember it causing me too much agro. As I had a pretty traumatic birth I think I was too focused on that to take any notice.
9. How was your skin after giving birth?
My skin was ok. I only remember my face having some dry patches but I do think the fact it was summer helped.
10. Does your baby have any eczema/TSW-type symptoms?
No thankfully.
11. Any advice to other mothers during pregnancy?
I would suggest (easier said than done) to try and stay as stress free as possible as I was very down and stressed at the beginning which I’m sure contributed to my flare.
I will say that the past 3 years with the flaring was unbearable and I was terrified how it would affect my pregnancy and becoming a first time mum. I would say I was lucky as even though I did struggle a little with my skin, I wasn’t struggling anywhere near like I was. I really believe my baby healed me from the inside out. As she is almost 7 months and I’ve only struggled with a flare on my face and neck. I still don’t have to moisturise any other part of my body after a bath or shower. My hair isn’t falling out and I no longer have to worry about my legs splitting open and struggling to walk as it was agony.
12. Breastfeeding advice?
I only breastfed while I was in hospital and it was difficult as me and my baby were both ill on antibiotics. My nipples were really sore through my pregnancy and after birth; I think that’s the one part of my body which I struggled with. They were constantly cracked and oozing and then on top I'd be leaking milk. I’d say that if you experience that and struggle to breastfeed just try to express as much colostrum before labour so if you choose not to breastfeed you have that to give your baby in their first few days! And you can freeze it! It’s also said to be ‘liquid gold’ for babies.
Hollie (@tsw_hollie)
*
1. A brief history of your skin journey.
I used topical steroids on and off for about 10 years for mild eczema on my face and neck. I started to show signs of TSA about 2 years before I went into TSW and took 2 rounds of prednisone during this time for allergic reactions. Started withdrawal in Sept 2019. Had 8 months of intense flares, and then cycled through less intense flares for the following year and a half.
By the time I became pregnant, I was at the stage of healing where I was through steroid withdrawal, but was still dealing with the effects of a damaged skin barrier on my face (such as rough texture, reactive, and repeated infections) and the psychological aftermath. My sleep also remained really bad.
2. How many months into TSW were you when you found out you were pregnant?
I was 3 years and two months.
3. Was this your first child?
Yes, first pregnancy and first child.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
No.
5. What was your skin like before you found out you were pregnant?
(Answered above).
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
It’s hard to definitely qualify how pregnancy affected my skin as when I became pregnant I had also recently started to attempt moisturiser withdrawal to repair my skin barrier, and also decided to stop taking regular antihistamines. Throughout pregnancy my skin did start to get to get stronger, stop reacting to stuff and get gradually less dry. I began to sleep better, too – I’m not sure if this was because of pregnancy or stopping antihistamines as apparently insomnia is a side effect of using them long term!
7. Any unusual TSW symptoms you experienced during pregnancy?
No, just the normal weird pregnancy stuff!
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
I went very red but that was probably from all the pushing! I had a home birth and we had some frozen flannels in the freezer which were heavenly to cool down. I don’t remember being itchy, which I normally am when I sweat, but it’s all a bit of a blur!
9. How was your skin after giving birth?
I didn’t have any flares after giving birth. I think maybe my skin was a bit drier than normal at first? I had cold sores for the first 3 weeks but haven’t had one for 5 months now, and previously I’d been getting one every month or two. Very grateful for that.
10. Does your baby have any eczema/TSW-type symptoms?
Her skin is very sensitive and she always has rashes coming and going and her skin is a bit dry. From what I have chatted to other mums in baby groups about, this is super common – babies are sensitive little things! We just leave any rashes alone, don’t moisturise her, and make sure we try and dry any drool/sick out of her neck folds ASAP as that definitely aggravates her skin loads. Any rashes have cleared up by themselves and she’s getting less dry as she gets older.
11. Any advice to other mothers during pregnancy?
My TSW experience informed my feelings about giving birth a lot. TSW is a horrifying, sanity-shaking pain. You don’t understand why it’s happening and you don’t know when it’s going to end. That makes it terrifying. On the other hand, although it also hurts, giving birth is a finite experience and your body is doing what it was specifically designed to do – the pain is natural and normal. Comparing the two made me feel confident about my ability to give birth. And the less you’re afraid of the pain, the more you can relax and the more likely you’ll have a straightforward birth.
Like a lot of us, TSW also left me with a huge distrust of healthcare providers. I found the thing that helped me prepare best was educating myself about what was happening to my body, what was going to happen during birth and the evidence behind why midwives and doctors might advise me to accept certain medical interventions, such as sweeps and inductions. I learnt that just like steroids, some interventions may get in the way of your body doing what it would have naturally done if left to its own devices. If you want to find out more, I reccomend reading the book “Give Birth Like a Feminist”. It helped me decide to have a home birth to reduce the chance of medical intervention (note that I was fortunate enough to be low risk, which allowed me to do this).
12. Breastfeeding advice?
Firstly, do what’s right for you. There is a huge pressure to breastfeed, but ‘fed is best’ and doing what’s right for your mental health is also best. Secondly, if you do breastfeed I highly reccomend Silverette nipple cups. I didn’t have TSW on my nips but they randomly became very sensitive and itchy in the third trimester. I scratched them and the wounds weren’t healing until I used the cups. I continued using them for the first month of breastfeeding and never had any problems with pain or soreness. They’re expensive but you can get them about half price on Vinted.
Vicky (@vickynolan)
*1. A brief history of your skin journey.
I had mild eczema as a child and have vivid memories of my mum smothering me in cream made by a homeopath. It didn’t do much, but apparently I didn’t do well with E45 (still don’t) and she didn’t use steroids (which I’m now thankful for!). Eczema got progressively better, came back a bit in my teens (patches on my face, neck, cracks of my arms, behind knees etc) and has come and gone ever since but never caused me too much trouble. I used topical steroids on these patches and they’d just go (for long periods, hardly had to get new tubes).
Mid-twenties I had bad face reactions for about a year until I found out I was allergic to methylisothiazolinone which was in my leave in conditioner! I started with Protopic for small flare-ups on my eyelids but had the best skin I’ve ever had for about 4 years until… during Covid lockdown and 8 months after having my first baby, I started getting face reactions again. It took me a month or so to realise the culprit was my Head & Shoulders shampoo which hadn’t labeled the ingredient I’m allergic to on the bottle, but was on the website instead. It had triggered a stubborn rash on my neck. I tried leaving it at first (maybe a couple of weeks) then used Protopic (only once cause it burned like hell) then steroids. At this point, I was now in my 2nd pregnancy and was back and forth to the drs as the rashes had spread to my face, I thought I had perioral dermatitis, and got worse and worse.
At 7 months pregnant my sister told me about TSW and it shook me to my core – I knew I matched the symptoms. I couldn’t face dealing with the unknown whilst giving birth, so I continued with the steroids and used them on my neck for 3 days then the rashes would return on the 6th day with a vengence. The gap got smaller and I quit 3 months after I had my daughter. TSW fully kicked in 2 months later after I stopped using Elidel as prescribed by my dermatologist. I had no choice but to surrender and accept my fate!
2. How many months into TSW were you when you found out you were pregnant?
It’s hard to say. Looking back, I think my TSW started very early on and the severity of it ramped up bit by bit. I think I had TSW symptoms at around 3 months pregnant. I started to have a dependence to the steroids that I’d never experienced before.
3. Was this your first child?
2nd child.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
As above.
5. What was your skin like before you found out you were pregnant?
I had amazing skin during my first pregnancy, my eczema flared after an allergic reaction that wouldn't budge. Looking back I should have completely left it.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
I was already in the throes of it, albeit mildly.
7. Any unusual TSW symptoms you experienced during pregnancy?
Perioral dermatitis-like rashes on my face which I think was TSW.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
I used steroids unfortunately and quit a few months after even though my skin was unbearable (the steroids stopped working basically).
9. How was your skin after giving birth?
Good for a few days then flared until I used the steroids again.
10. Does your baby have any eczema/TSW-type symptoms?
Eczema at 1.5 years.
11. Any advice to other mothers during pregnancy?
Don't be afraid to tell people, let everyone knowabout your discomfort so that they are aware.
12. Breastfeeding advice?
N/A -– I bottle fed from a few days old.
MarÃa (@skinhealthcoach)
*
1. A brief history of your skin journey.
When I was 2 months old, a big red eczema patch appeared on my right cheek. From then on, it was a long journey of different doctors and steroid creams.
2. How many months into TSW were you when you found out you were pregnant?
N/A.
3. Was this your first child?
Yes.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
I was using steroid creams and immunosuppressant creams just until I got pregnant.
5. What was your skin like before you found out you were pregnant?
I was always going between perfect skin while using creams and awful and very painful breakouts.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
3 months pregnant.
7. Any unusual TSW symptoms you experienced during pregnancy?
I remember having trouble to regulate my body temperature. I was cold when pregnant women usually seem to feel warmer.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
I can’t remember very well since it was 10 years ago, but I think that like with many other unpleasant things during the labour process, we tend to forget and just focus our memories on the incredible experience that it is.
9. How was your skin after giving birth?
Very bad, I think because of the lack of sleep and stress etc.
10. Does your baby have any eczema/TSW-type symptoms?
No, and I'm so very grateful for this.
11. Any advice to other mothers during pregnancy?
Don’t wait to get pregnant to withdraw from steroids! I gave up steroid creams when I found out I was pregnant due to fear that I would pass it onto the baby. Maybe I would recommend to do this in advance so you can get to pregnancy without so many withdrawal symptoms.
12. Breastfeeding advice?
I remember being so afraid of milking because my nipples were broken and very sore. Finally everything went well. After each milking, clean your nipple with a wet cotton pad, and then leave a bit of your milk on top.
Brittany (@britt.anystephens)
*1. A brief history of your skin journey.
Had severe eczema as a baby (diagnosed with eczema, multiple allergies and asthma), which calmed later in life (around 4-5 years old) and only ever came back as mild in the winter around my neck and eyelids. In 2018 I moved apartments which had black mold and terrible temperature regulation. A few months in and I was covered in eczema, head to toe, so I tried steroids for two weeks then came off them and went into full-blown TSW. Took a year to heal and then was healed for two years before deciding to try to get pregnant. Skin was incredible my whole pregnancy and for four months postpartum. Then with all the stress and the fall/winter season my face flared and then my body. I'm in a mild flare still and it has been 15 months. Finally seeing the light at the end of the tunnel.
2. How many months into TSW were you when you found out you were pregnant?
1 year full TSA, healed for two years and then pregnant.
3. Was this your first child?
Yes.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
No.
5. What was your skin like before you found out you were pregnant?
Fantastic and glowing!
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
N/A.
7. Any unusual TSW symptoms you experienced during pregnancy?
No.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
Honestly, baths if you can tolerate it, and even in the hardest moment, you can do it. Have a plan, advocate – my doctors were very supportive and transparent of all medications they gave me.
9. How was your skin after giving birth?
Glowing for four months and then the eczema kicked in – my eyes started to get red, then my face, before symptoms travelled down my neck, my arms and behind my knees. Not like full TSW in that it didn't burn but felt more like severe eczema, with redness and flaking. My wrist was awful and oozing, I couldn't bathe my little one. Bandages and zinc were amazing. I should have had it swabbed early because it was an infection I had let fester so it took a while to heal.
10. Does your baby have any eczema/TSW-type symptoms?
Daughter had severe eczema when introducing solids at 6 months, and we did use steroids on her (extremely sparingly) while I figured out her food triggers. We saw an allergist and had confirmation for FPIES (Food Protein Induced Enterocolitis Syndrome), and since then she has very mild eczema that clears on its own.
11. Any advice to other mothers during pregnancy?
Find what feels comfortable, talk to your doctor, talk to your partner, find a support group that works for you and don't be scared to ask for help. It's hard and it can take a village. Postpartum is harder than pregnancy. Have meals prepped, have someone to clean things if you can have them around. It can be sleepless and exhausting but it's possible. Bamboo and cotton are amazing. Hormones play a huge factor, as does stress in my current flares, and check for infections as I had three postpartum.
12. Breastfeeding advice?
Have a lactation consultant, and be mindful as the cream midwives and doctors give postpartum usually contain steroids to help with chaffing. Talk to them about ointments and find one that works well for you as I pumped exclusively for 10 months and my nipples chaffed a lot.
*
1. A brief history of your skin journey.
I used steroid creams for 28 years, starting at 8 months old for eczema that I developed after my mom stopped breastfeeding me. I used them on and off for years. In college, I used Elocon, but just on my hands and fingers, and also for a couple of spots on my face, and that was it for years.
After my first pregnancy, when my baby was 4 months old, I noticed that the eczema on my fingers didn't go away when I put steroid cream on, like it used to, so something in me just flipped and I decided to quit the creams for good. At the time, I didn't know anything about TSW, and it's ridiculous because I am a pharmacist and I know how bad these creams are, but my professors at college and my dermatologists would always dismiss me when I tried to speak to them and share my worries about using steroid creams for long periods of time.
So that was in October 2019 when I quit steroid creams and my TSW journey began, but it's funny how I didn't know what was happening to me for like 5/6 months. At the time, I was doing acupuncture and changed my diet and thought I might have some allergies, until I found ITSAN and finally found out what the problem was with me all this time.
At some point, I started using a steroid inhaler for my asthma, and this is funny, but a few years before going through TSW, I decided spontaneously to stop using my steroid inhaler. I did it gradually, first using a berodual inhaler for a period of time before I finally stopped using one completely. It was only when I started TSW in 2019 that I realised I was also addicted to my steroid inhaler, which made sense to me after seeing what happened when I decided to stop using it. My theory is that the blood vessels in the lungs also get addicted to steroids when using a steroid inhaler, and if someone wants to quit steroid creams I think they should find a way to stop using the steroid inhaler first in order to fix the lungs. Then when the lungs are functioning well, that is when you should stop using steroid creams etc and start your TSW journey so you don't have to worry about breathing and inhalers.
2. How many months into TSW were you when you found out you were pregnant?
I was around a year and 3 months into TSW when I fell pregnant with my second child. I then became pregnant again around three years and three months into TSW.
3. Was this your first child?
As above – second (and third) child.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
No.
5. What was your skin like before you found out you were pregnant?
I was in a flaky stage of TSW but with no extreme redness like in the beginning.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
For the most part my skin during my second pregnancy was bearable, and it even started to improve in the second and third trimester, and remained good until 2 months after delivery.
7. Any unusual TSW symptoms you experienced during pregnancy?
During my third pregnancy in my first trimester, two of my fingernails fell off before growing back like nothing had ever happened. Then, in the third trimester, one of the same fingernails fell off, but grew straight back again. Before it happened, I noticed that my fingers were starting to swell and the skin around the nails were oozing. The process lasted a few days from the initial ooze to little by little the nails falling off. My nails are totally fine now and back to normal.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
All three pregnancies were delivered by C-section, so I was on spinal anaesthesia followed by potent antibiotics. I have a strong mother's instinct so at that time my skin wasn't my main focus.
9. How was your skin after giving birth?
When my second child was 15 months old, my skin started to worsen. At the time, I had to stop breastfeeding because my nipples had started oozing and it was gross. My skin went crazy with oozing and flaking, just like in the first year... And around this time, approximatey 3 years and 3 months TSW, I fell pregnant again with my third baby, but this time my symptoms were bad as hell. Over my pregnancy, my skin started to get better, although nothing like my second pregnancy, and there were bad days and good days... Two months after giving birth to my third child, my skin started to rapidly worsen again. My skin is much better again now.
10. Does your baby have any eczema/TSW-type symptoms?
All my three of my babies don’t have any skin problems, thanks to God, and it goes to show that eczema is not hereditary, if you ask me, because every single dermatologist I went to in my life told me I got eczema from my siblings, which isn’t true as no one in my family has eczema – and now my children also don’t have it ...
11. Any advice to other mothers during pregnancy?
I think life doesn't need to stop during TSW and if you can handle it little by little, include yourself in society and be with people. I was sometimes so down, but my husband and children were around me so I couldn't quit. I fought again and again because of them as I knew they needed me like I needed them.
Now, looking back, I think that pregnancy has nothing to do with TSW symptoms – it can feel like it sometimes, but the truth is that the TSW process is non-linear and there are so many stages of it so in pregnancy, just go with it. It is just my opinion now after everything.
12. Breastfeeding advice?
I suggest all mothers to learn everything they can about it from a trusted source... And when the baby comes, just follow your instincts.
Anonymous #1
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1. A brief history of your skin journey.
Topical steroids for 25 years. Eczema since a baby. I was never made aware of the dangers of topical steroids and was given stronger prescriptions over the years to keep my 'eczema' at bay. Even told by GP to use steroid cream on my upper arms to help with keratosis pilaris. Skin started to go crazy mid-2019, and I had several bouts of chronic hives the size of a tea cup all over my body, with anaphylactic allergy responses landing me in emergency. Saw several dermatologists, got prescribed clobetasol shampoo, clobetasol cream and even oral steroids. The oral steroids didn't even work in emergency for the hives and my skin which the doctors couldn't understand. I did my own research and took papers to my derm about TSW but she said it was a bit of a buzz term at the time. Fast forward to my first attempt at TSW, December 2019. All hell broke loose. I used steroids again in December 2020. I also used Cyclosporine between August 2019 and August 2021, which I came off because we were looking to start a family over the next year and I had been warned by the doctor to never get pregnant while on the drug. I also used Low Dose Naltrexone (LDN) which helped me slowly dose down on Cyclosporine until I was no longer using it, and I haven't used it since. During this time, I also tried CBD Oil, Chinese Medicine – you name it. Now TSW since January 3rd 2021. Just over 3 years. I have seen vast improvement, still flare and occasionally ooze, but I am SLOWLY getting better. It really is 'time'.
2. How many months into TSW were you when you found out you were pregnant?
Almost exactly 2 years.
3. Was this your first child?
Yes.
4. Were you using any kind of immunosuppressant, jak inhibitor or natural steroid like liquorice or ashwaganda during pregnancy?
I was on Low Dose Naltrexone (4.5mg) throughout my entire pregnancy and came off it when I was induced as they were concerned if I wanted an epidural it wouldn't work (this is not the case, epidurals still work, the dose is so low, which most doctors don't understand). My baby is completely healthy and I know of other mums going through TSW who also stayed on LDN throughout pregnancy.
5. What was your skin like before you found out you were pregnant?
Slow improvement, but still really bad on my face, neck and hands.
6. If applicable, how far into your pregnancy did you start to notice any changes with your skin?
I flared badly in the beginning but I would say I saw some sort of improvement possibly 4-5 months in.
7. Any unusual TSW symptoms you experienced during pregnancy?
Just the occasional ooze flare. My skin was honestly quite good for TSW skin during pregnancy. Not at all perfect, but improved.
8. How was your skin when you were giving birth – also, any advice to other mothers to make the experience more comfortable?
My skin was extremely dry and itchy (mainly hands and face). I kept my moisturiser nearby and took an eksy (cooler) with about 10 ice packs for any itch attacks.
9. How was your skin after giving birth?
My birth ended in an emergency caesarean, and even though I had listed steroids as an allergy, I was given a steroid injection for life-saving reasons during the procedure. My skin stayed absolutely amazing for a few months post birth. It is now back to being problematic but I also attribute that to having stopped breastfeeding/expressing in early January so I think my hormones are playing up.
10. Does your baby have any eczema/TSW-type symptoms?
No, occasional dry patches but otherwise she has perfect, beautiful skin.
11. Any advice to other mothers during pregnancy?
Be gentle with yourself. Apple Cider Vinegar or Epsom salt baths (if okay for you). Stay hydrated. Lots of rest and sleep when needed. Ice packs for itch. Lots of Omega-3, Vitamin D, Vitamin C (I get continual staph and EH infections so keep on top of my immunity as much as I can). You're growing a baby – your body is amazing!
Lastly, take pregnancy photos and selfies with your babies, even if your skin is bad. Those memories and moments are so precious. Your baby loves you and you are their world. They don’t see your bad skin. All they need is you xxx
12. Breastfeeding advice?
This one is hard. I had bad nipple issues all throughout my pregnancy – oozing/crusting sticking to bra. This continued through my breastfeeding/expressing journey and hence why I stopped when my baby was 3 months old.
Hydrogel discs can help (they also occasionally made them worse – go figure!), as do these bamboo breast pads https://www.newbeginnings.com.au/products/ultra-thin-bamboo-nursing-pads.
If you need to formula feed because your nipples aren't coping, do not beat yourself up. I did mix feeding at one point and my baby is now only on formula. FED IS BEST!! And your mental health is very important.
Next are a selection of accounts from women who were either still using steroids while pregnant, so the questions weren’t applicable, they are still pregnant, or, quite simply their experiences were better shared as a freestyle passage.
Olivia (@oliviamurrayactress)
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I unknowingly had signs of Topical Steroid Addiction (TSA) for a few years that flared up and down. During pregnancy these signs continued and worsened. Whilst pregnant I was instinctively reluctant to use topical steroids, even though every doctor I asked said it was fine to keep using even the most potent steroid I was prescribed – Dermovate for my hands – and that it was fine for the baby (something I have since found may not be as clearcut as implied). So without realising it, during pregnancy, I started to go into Topical Steroid Withdrawal (TSW) because I had weaned off the steroids. This became more evident during the third trimester as my skin worsened. Here are a few memories from that time:
- I was enjoying pregnancy pilates but had to stop it a few weeks early because, what I thought was ‘eczema’ (or some hormone pregnancy-related condition), was becoming so debilitating (emotionally and physically) that I couldn’t continue. Here is an extract from my email to my teacher at the time. I did seem to have partly figured out that I might be in TSW but didn’t seem to be fully aware of the implications: “Just wanted to let you know that although I’m kind of ok and baby seems ok thankfully I’m really struggling at the moment as in the last week or so my skin has gone absolutely mental (stomach, legs, arms and latest my face) and constantly in pain, itching and looks awful - latest is my eyes have swollen up, red with eczema “wrinkles”. I can’t count the number of times people say oh you look tired and I know it’s not that it’s eczema! It's really getting me down and I don’t feel I can face people at the mo :( Really hoping it is mainly pregnancy hormones and will settle once she is born. Am on anti-histamines but they don’t seem to be doing much. I’ve stopped taking steroid creams and this may be partly withdrawal symptoms (so called TSW which can be nasty!) but I’m very reluctant to go back on them as I think my body was getting addicted and they stop being effective after a while unless you use ever increasing potency. I’m quite upset about it as not really able to go out much at the moment and it’s stopping me enjoying these last few weeks. Still - not long to go.” If only I knew what was ahead!
- NCT classes in the third trimester: I also recall my face becoming less and less like my own – my lovely NCT friends have never actually seen the real me – and ineffectually caking on the foundation, looking in the mirror and thinking what on earth is going on with my face?
- Meeting with Obstetrician around week 37/38 of pregnancy: She was shocked by the state of my hands and arms (and in particular that I had stopped topical steroids) and told me to go back on Dermovate or that oral steroids were going to be needed. I reluctantly relented.
- Postpartum visit from the Health Visitor: I remember one home visit during the newborn stage when I made some comment along the lines of ‘probably you’ve seen lots of mums with these sorts of skin rashes’ and she made it clear that my symptoms were definitely worse than she was used to seeing.
- Postpartum I was exclusively breastfeeding and developed some quite severe eczema in the nipple area (a biopsy did later confirm this as eczema, no doubt prompted by constant breastfeeding) and after a few months it cleared completely). When I spoke to a GP about this she prescribed steroid cream for the nipple area (which I did not use). I said I did not want to use steroids (which provoked an unwelcome minor interrogation) but I was prescribed Betamethasone Valerate 0.025% cream (a ‘moderately potent’ corticosteroid). I asked: what if I forget to wash it off/or don’t do so adequately enough before feeding my baby again. I was feeding several times during the day and night and was absolutely shattered and unlikely to always remember when the last time I put cream on was. I remember being told that it wasn’t an issue if the baby ingested a bit (something to do with stomach acid…). However, I now realise two things. Firstly, that application of this medication to the breasts is expressly advised against in the current Patient Information leaflet precisely to “avoid accidental ingestion by the infant.” Secondly, that there was another equally concerning risk factor that the GP should have been alive to and was a further reason not to prescribe this medication for the nipple area. There was clearly a risk of residual cream passing directly onto the delicate baby skin on my daughter’s face. I am so thankful that I never used this cream but it makes me very angry to think that I could have unwittingly exposed my daughter’s face to this medication without fully understanding the implications. My daughter was 7 months old at the time and the current patient information states: “Betamethasone valerate is contraindicated in children under one year of age. Children are more likely to develop local and systemic side effects of topical corticosteroids and, in general, require shorter courses and less potent agents than adults..” The same information also warns in particular about exposure to areas such as the face and the inappropriate use of the medication leading to Topical Steroid Withdrawal Syndrome (Source: https://patient-info.co.uk/betamethasone-valerate-0-025procent-w-w-ointment-92105/summary-of-medicine-characteristics).
The symptoms were slightly (though definitely not fully) suppressed during birth and for a few months thereafter. Things started to get worse over the first 6 months postpartum and I finally discovered the TSW community and realised my appearance and patterning was pretty much identical to many other TSW people. I stopped steroids properly when my daughter was about 7 months old.
Ceri (@longceri)
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I’d been using steroids since I was a toddler and stopped when I was 28. I don’t think TSA kicked in until I was about 18 and I was put on stronger and stronger doses from then, including oral steroids. I was going to start on immunos at about 22 but decided that I didn’t want to go down that route.
I had my first child at 27 and was still using steroids here and there throughout my pregnancy. My skin was really bad at the start of my pregnancy as I think I unknowingly started TSW before my doctor gave me more steroid cream to use. During the first few months after giving birth my skin was amazing but deteriorated fast at about the 4-month mark. I was relying heavily on steroid creams but they didn’t seem to be making much of a difference anymore. It wasn’t until my baby was 6 months old that I discovered TSW and stopped everything cold turkey. It was bad! My entire body was red, raw and flaking. The pain was intense and I was oozing everywhere, but the worst part was my nipples. I was breastfeeding as well so trying to manage this was so overwhelming. I found cleaning with warm water and applying breastfeeding safe nipple cream before a feed and covering them with cotton breast pads between worked well for us. I managed 2 months then went to my doctor and begged for a course of oral steroids for some relief. After I’d tapered off that my skin got worse again, but I felt more prepared this time and had started to find things that gave me some comfort. I relied on compression gloves and bandages, and also Balmonds Skin Salvation. Salt baths were a big help as well because I could bring the baby in with me and feed her.
I really struggled with mum guilt during this time as I was mostly housebound. I did my best to get out and do things with my daughter but it was usually agony. I signed her up to swimming lessons and would make sure we went every week but the pain of it was so intense. I had to race home after we finished and sit in the shower with her while the bath filled up just so I could get some relief. Things did start to get easier though, my skin was so much more manageable and by the time she was a year old I was mostly clear and had my life back. We went away on holiday and it was honestly the best one I’d ever had. Even as a child I’d had to avoid the sea as it stung my skin, and I’d always flare up in the sun. This time I swam, sunbathed and ate what I wanted with no problems at all!
We decided to have another baby and at the beginning of my pregnancy I was still completely clear, but my third trimester was a different story! I had my worse flare since I started TSW and could barely move my hands. I had to rely a lot on our parents to help with our eldest because some days I could hardly get out of bed. The mum guilt was really bad during this period and I honestly considered using steroids again but I’m so glad I didn’t. My skin cleared up again just before I gave birth to our second daughter and stayed clear until she was about 4 months old as well. I’ve often wondered if I flared at the same time after both births because of my post-partum hormones starting to level out again. The flare was awful, worse than even my initial TSW flare, and I did end up digging out an old tube of Protopic and using it for a week. I wish that I hadn’t had to, but I can’t regret something that allowed me to care for my children again. I haven’t seen any side effects so far so I’m hopeful I got lucky, and I’ve thrown the tube out since.
I opted for a water birth with both of my pregnancies as I’ve always found relief for my skin when in the bath, and even though I was lucky enough to have had clear skin during both births I felt that this would have been the most comfortable thing for me. TSW definitely made my breastfeeding journey more difficult but I’m glad I stuck with it as it works for us. I did end up using some formula for when other people were caring for my children as I found pumping to be really uncomfortable. I felt a lot of guilt the first time my eldest was given formula when I needed a break and had put myself through months of pumping when honestly, it just wasn’t necessary. A fed baby is a happy baby, regardless of where it comes from.
I really want to stress to anyone feeling guilt about not being able to do something with their baby because of TSW that it’s going to be okay. You’re doing an amazing job and your baby is so loved. They’re not going to remember these early days, and as long as they’re safe, fed and loved nothing else matters right now. They WILL remember all of the amazing days to come where you get to go to swimming together, sit in the sun, travel and a million more things without the pain and restriction of your skin.
Neetu (@neetugodara)
*A brief history: I have had eczema since I was an infant. I used topical steroids my whole life, AS prescribed by my dermatologist. I never felt I really abused them, and went long stretches, especially in my 20s, with minimal use. At around 35 years old I started noticing massive red blotches on my face that felt nothing like eczema. I visited a few doctors who couldn't really give me any answers. At around 37 my eczema started getting terrible, my face was swollen all the time and steroids were not helping. At 38 it got so bad, my face was not recognizable. I went to a dermatologist who prescribed prednisone for 3 weeks. By the end of the 3 week oral steroid course, I looked the best I have ever looked, but of course, 2 weeks later, the life-shattering rebound I experienced is what led my husband to discover TSW. This is when we realized what was happening to me for the last couple of years – TSW. In October 2020, shortly after finishing the prednisone I went cold turkey off of all steroids. I did contact Dr. Rapaport who confirmed my TSW diagnosis as I had all the textbook symptoms. The next 6 months were the worst of my life, and it's been a tough journey since but I continue to heal with time.
How far into TSW when I found out I was pregnant: 2 years and 11 months, or 35 months total.
My fertility journey: Without getting into extensive details, I had been on a long fertility journey before we found out we got pregnant. I had completed my latest embryo transfer in April 2023, this particular round was the first time I tried progesterone shots. Little did I know, chemical progesterone can act like steroids in the bloodstream (I learned this after from Dr. Rapaport). I was 2.5 years into TSW at this point, and although I never had a "break" from TSW it wasn't as bad as the early days. However, the progesterone shots sent me over the edge into a flare that was unbearable. It damaged my hands more in one flare than the whole 2.5 years. I could not use my swollen, oozing, broken hands for weeks and once they healed I had lost so much pigment all over my hands. My face was in a state of unbearable pain. The embryo transfer failed, and I was left with this massive flare, it would be the flare that eventually broke me and I made the call to start cyclosporine.
Within 2 weeks of starting cyclosporine, I kid you not, I was healed – completely. My skin was healed, but more importantly there was a weight lifted off me that I cannot describe, just thinking of it brings me to tears. The biggest change in my life was not even my skin (even though that was miraculous), it was everyone in my life saying, "wow, the old Neetu is back". You don't even realize how much of yourself, your self esteem, your joy you have lost until one day you wake up without being stuck to your sheets, in ungodly pain, and can look in the mirror without sheer horror. The gratitude and shift in my mental state was so immense it's hard to describe. My whole life suddenly was back to normal.
3 months into cyclosporine, I fell pregnant. After a very long journey, it was honestly hard to believe. I truly believe just the sheer reduction in inflammation in my body, the return of normal body temperature and weight, and the return of some strength vs feeling so weak all of the time contributed to this blessing we received.
The BIG decision: Do I stay on cyclo pregnant?
Once I knew I was pregnant, I was excited but terrified. I NEVER wanted to take immunos, let alone while pregnant. I told myself if we ever got so lucky, I would just STOP the immunos and go back to suffering. What I didn't realize is that once you feel so healthy, you start questioning whether being in the throes of TSW again is actually best for the baby? As we all know – there is NO perfect and no good answer out there to this question.
I ended up consulting 4 doctors: my fertility doctor, a fetal medicine specialist (Internist, who specialized in fetal medications) at St Michael's hospital in Toronto, Dr Rapaport and a local dermatologist I see in Toronto. In addition, I spoke with the Mother to Baby resource line in the US, a resource that amalgamates studies from around the world to determine the impact of various drugs on the fetus. I also spoke with a mother who had two children while on cyclo and chatted with a few more mothers in the "New and Expecting Mothers going through TSW" facebook group.
In conclusion, after ALL of the research and medical consultations it boiled down to 2 things: a healthy mom is a better scenario for a healthy baby/severe inflammation has some miscarriage risk, as did my age. There is NO evidence that cyclosporine during pregnancy increases risk of any cognitive or behavioural birth defects. There is even one study that followed children to over age 25 and showed no increased risk of immune or other disorders later in life. The studies are not as robust as one would like, but it was the best information available.
With the recommendation of 4 doctors, some comfort from other moms and my sheer fear of going into full-blown TSW again while pregnant, my husband and I made the call to stay on cyclosporine.
I will say because of my fear, I did try in the first trimester to come off and got myself down to 75mg/day – the result was pretty disastrous and I flared badly. I ended up going up and then back down a couple of times hoping I could wean off. Eventually, I had a local derm appointment on a day I was incredibly swollen, and the derm just looked at me and said stop playing with your medicine. You need it. It sunk in, I had to stay the course and for the bulk of my second trimester I have been on 275mg per day which has kept me very stable.
I hope to wean off, but plan to do it under the guidance of Dr. Rapaport and take my time. My goal is to not be on the medicine longer than 12-18 months total given that many country's guidelines generally recommend not more than a year. I have yet to make any decisions on breastfeeding, but if any moms out there read this story and want to reach out to me you can find me on Instagram @neetugodara.
I want to say I am not advocating for or against immunosuppressants for TSW or during pregnancy, I just want to share my personal experience in case it helps anyone else. There are so few stories out there about those of us in TSW and pregnant, let alone on immunos, so I hope this is helpful.
Sending all the TSW warriors reading this so much strength and courage.
Alfa (@tsw.alf)
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I know some people worry that TSW affects fertility, but this was not my experience so it's not something people should worry about universally. I'm almost 23 months TSW and fell pregnant completely unplanned when my skin was in a good phase ... due to cyclosporine. I reduced my cyclosporine from 150mg to 100mg because I was worried about the baby. When I saw an NHS derm he said he wasn't worried about the effect of the drug on the baby at all and said I could up my dose. I decided not to and I actually decided to stop the drug completely a week ago. I stopped taking the drug because I didn't feel like it was making much difference to my skin anymore so didn't seem worth any possible harm to myself or the baby for such little benefit. I'm only 23 weeks pregnant but I flared worst in the 1st trimester. Right now my skin is manageable, dry but not too inflamed. I do worry how labour and postnatal hormones will affect my skin as everyone's experience seems to be different.
This is my second pregnancy. My first I was unknowingly in TSA, I had a big flare and was given a stronger cream. I believe that flare was actually caused by eating too much dairy ... I was craving cereal! Food really effects my skin so I'm being quite strict with my diet at the moment; no dairy, gluten, and low sugar, plus not eating the huge list of things I'm actually allergic to. I have also had acupuncture which I found beneficial in the 1st trimester when I was flaring worse.
Stephanie
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Despite going through the horrors of TSW for around 2 years and still not healed, I decided to get pregnant. I was determined not to let TSW stop me from reaching one of my life goals of completing my family. I’d read about fully healed mums flaring during pregnancy or postpartum, so realised there was no sense waiting until I was completely better.
I’m now writing this at 23 weeks pregnant. The journey so far has not been easy, but I'm so thankful things are progressing well with the baby. My skin isn’t great, but it is nowhere near the worst it’s ever been. Mentally, at times, the uncertainty is overwhelming and constant questions race through my mind. Will the pregnancy hormones put me in a huge flare? If so, when? Will I flare after the birth? Is there a birth plan I can make that will limit a flare? Will I go into early labour and need steroids for the baby’s lungs? Will I be able to breastfeed? Will I flare after weaning? How will I look after my baby when my skin is terrible? How will I sleep? How will I do the school run with my oldest in a massive flare? Should I read about other TSW mums experiences on social media to prepare myself? Should I avoid reading anything at all and just try to stay positive?… the list of questions and concerns goes on.
However, I’m happy to report that, for me, the positives significantly outweigh the worries. I’m so excited that I have a baby on the way and in awe of what my body can do. I want to do what I can to enjoy my baby when they arrive. I know TSW is temporary and in a few years I’ll look back and be glad I did this now. I’m so appreciative of my supportive husband, friends and family. TSW has helped me realise how loved I am and not to take anyone or anything for granted. I can’t wait to pass on my lessons learned to my children as they grow up and know that life is going feel so much better because I went through this.
Anonymous #2
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I never had eczema. It all started when I got a rash on my neck in 2015 and I was prescribed cortisone to treat it. Over time, it got worse and worse, especially when I started using cortisone over months because my doctor told me it wouldn’t be a problem. My mood also deteriorated and, as a result, my relationship had to endure a lot. I asked myself if I would be capable of being a mother in that bad state of mind. I am lucky that I was brave enough to give “it” a chance and I got pregnant in December 2021. At the beginning of my pregnancy, I used cortisone, but after a while, I was so afraid that this would have consequences for my unborn son that I stopped completely and went through hell as symptoms of TSW appeared – but at the time I didn’t know that I had TSW. During pregnancy, from time to time, whilst I did have terrible flares (red itching spots on my face, neck and arms), over all it was bearable – my doctor made me believe that my skin was okay because of the pregnancy and all the hormones, whereas I think it was bearable because I stopped using cortisone in springtime and hadn’t the “winter effect”.
My birth experience was magic and my skin was doing great, but one month postpartum I had another big flare and my symptoms were so bad that in the moments where I could sleep, I couldn’t sleep. As a result, I started again with cortisone, but when I tried to stop, the symptoms came back much worse. My doctor then tried to convince me to stop breastfeeding so I could try Dupilumab, but I trusted my gut and didn’t follow her terrible advice, although my nipples were also affected so I was already one step away from stopping breastfeeding.
In March 2022, after six months of living like this, I was sick of it all (especially my desperate mood) so I googled “red spots” and found out about TSW, and stopped cortisone, moisturizing and showering. This time around, my symptoms were so much worse in comparison to the time during pregnancy, and nearly all areas of my body were affected. Again, I was going through hell. I still have problems (especially in winter) but they are much better now (I've found that little doses of red light therapy have really helped me recently). I am still waiting for the “day of healing”, but I know that this day will come.
Chi (@chi_tsw_japan)
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I started TSW in October 2020 and found out I was pregnant in June 2023. My flares usually get worse during summer (Japanese summers are hot and humid!) and unfortunately my third summer with TSW in 2023 was really bad because of pregnancy on top of symptoms. Oozing lasted longer than usual, and the flare on my face was really bad because I couldn’t stop sweating. A few things that helped me:
1. Counselling – Talking to professionals helped me to change my perspective towards TSW (even before pregnancy). The counselor kept reminding me that good things will come with my baby, and any bad stuff will be removed/carried out with the baby’s birth (maybe TSW will be over?). This hope kept me going and I think it was really helpful for my mental health.
2. Focus on the positive results from other TSW warriors – It’s related to the counselling but some positive quotes and posts from other TSW warriors helped me to keep going. Especially one post from Cara kept me going (I was so fed up with my flare and I was thinking of using steroid cream again). Her post said, “Just a little reminder that six/seven months after this photo was taken, I made full recovery. Hang on, dear skin friends - you’ve got this." When I saw this post, it was August and my flare was the worst. I kept telling myself that by January or Feb, I might have a full recovery, too!
3. NMT – NMT helped a lot since my whole body was on fire and the heat needed to be released and the skin dried out.
Anonymous #3
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I have three children, 4, 2 and 1. When I was pregnant with my eldest I had zero skin concerns. Skin felt non problematic, even though it was a semi stressful time of moving countries and living with my in-laws. When I was pregnant with my 2nd I found I had eczema flares on the inside of my arms but they were controlled using steroid creams prescribed by doctors. After pregnancy they disappeared. During my 3rd pregnancy right from the get go my "eczema" started flaring. After visiting the drs they prescribed me Betnovate Valerate which made it dissappear almost immediately. I found that the time in-between each use began to slowly get less and less and I soon found myself ringing the drs fortnightly as the rash was spreading and I didn't have enough cream to cover all areas. The doctors were really reluctant to give me steroids so often but they also didn't have any alternatives. They wouldn't refer me to a dermatologist and essentially made me feel that this was the best they could do to help. As it began to spread I started feeling symptoms that just made me question whether it was even eczema. I was experiencing temperature fluctuations, burning and it was spreading to new places. As I was pregnant it was hard to distinguish whether this was weird pregnancy symptoms or whether this was something else.
I gave birth in January 2023 and assumed my symptoms would die down after I stopped breastfeeding but they never did. I found myself needing steroids almost every three weeks to control the itch/burn. Still the drs weren't helpful, they would advise to use steroids sparingly but also not suggest any other diagnosis or feel they should investigate my symptoms further – even though I would be in tears at almost every appointment.
In August 2023 I decided to do a little investigating as things didn't seem right with my reliance on steroids all of a sudden. I remember seeing the term Topical Steroid Withdrawal a few years ago and began searching through various articles and people's social media pages and finally everything clicked. These were the symptoms I was feeling and immediately went cold turkey.
It has been such a painful journey both physically and emotionally. The physical pain has been hard going but being a mother of three very young children and being in so much pain so I can't carry or cuddle them has been the worst of all. I have felt like the joy of motherhood has been snatched from me. I'm thankful however for the kindness of Jesus through it all. How my church family have cared for my children, taken them to the park, nursery, play groups, play dates to keep them distracted from my worries and sadness. God has given me wonderful in-laws who have happily taken us in and cared for us as a whole family of 5. My wonderful husband has championed me through, and seen me in my darkest times, praying with me and trying to make me laugh daily. It has been a horrific journey – that is still ongoing, but I can finally see light at the end of the tunnel.
Sarah (@sarah.overcomes)
*I had eczema on the inner parts of my arms from around 5-6 years old. Was prescribed topical steroids and needed to up my potency as I got older because the “eczema” was spreading. Realized in college that this wasn’t normal so I stopped using them. I went through a journey with Dupixent but had to stop using that due to getting pregnant. I found out I was pregnant with my first child in May 2023 when I was 6 months into TSW, and I’m due Jan 2024.
I started Dupixent around month 3 of TSW and it didn’t do much (just helped with the wounds, the redness and oozing were still there) but stopped when I found out I was pregnant. I noticed a change in my skin right away – the redness was spreading and started getting worse. My due date is in a couple of weeks, but I’m hopeful that my skin will be good! My advice would be to try to eat as best as you can but give yourself grace because you are growing a literal HUMAN! It’s okay to give into cravings but make sure you also nourish yourself as well. This stage will pass.
THE DATA BIT
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I probably don’t need to tell you that I’m not a data expert, but with that being said I have done my best to share data that is accurate using the information provided. Whilst there are 34 incredible women that are part of this post, not all of the women have been included in the data – for example, some of the women were still using steroids and not in TSW while pregnant, or were still pregnant when they shared their experiences and cannot offer information on what their child's skin is like. Any suggestions on how I can improve on collecting data on TSW is much appreciated.
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18 out of 26 of the women (69%) said that their child has sensitive skin/skin issues/allergies that trigger a skin reaction. Breaking it down:
- 8 out of 18 of the women (44%) said the issues were mild
- 10 out of 18 of the women (56%) said the issues were moderate to severe
8 out of 26 of the women (31%) said that their child doesn’t have any issues with their skin.
- 6 out of the 10 women (60%) noticed a change for the worse in the first trimester
- 3 out of the 10 women (30%) noticed a change for the worse in the second trimester
- 1 out of the 10 women (10%) noticed a change for the worse in the third trimester
- 2 out of the 5 women (40%) noticed a change for the better in the first trimester
- 2 out of the 5 women (40%) noticed a change for the better in the second trimester
- 1 out of the 5 women (20%) noticed a change for the better in the third trimester
I cannot begin to describe the profound experience I had working on this post and having the privilege of sharing these incredible women’s stories. I have learned more from this community than I have from any dermatologist, because these are lived experiences. While working on this, what was fascinating to read were so many recurring themes between the women – such important advice to let go of any guilt, asking for/accepting help, trusting in your body … and if you are unable to breastfeed, fed is best. TSW already deprives mothers so much of what should only be a special time, so not allowing unnecessary and senseless guilt to take more from you during this time is vital. Like a lot of women’s health issues, I think there is very little on the reality of pregnancy and everything that surrounds it. Even my friends who haven’t got TSW have shared a reality of pregnancy that appears to be missing from the public perception of it, and so just like all these women have so eloquently said, please let go of any guilt or fear you aren’t doing it right, or not doing enough, because you’re human and you’re doing the best you can.
Sending all my love and hugs to you and your little ones, both future and present.
Cara x
Other posts in the series:
Let’s Talk About: TSW & The Genitals (here)
Let’s Talk About: Eczema Herpiticum (here)
Let's Talk About: Protopic (Tacrolimus) (here)
Let's Talk About: Elidel (Pimecrolimus) & Eucrisa (Crisaborole) (here)
Let's Talk About: Oral Steroids (here)
Let's Talk About: The Nipples (here)
Let's Talk About: Mould/Mold (here)