*Welcome back to my blog and another post in my 'Let's Talk About' series. This time I'm talking about oral steroids. As per, before I write another sentence, here are some very important disclaimers:
- I am not a medical professional and anything shared in this post should not be taken as medical advice.
- Just like my posts on the non-steroidal medications Protopic, Elidel and Eucrisa, I think you probably know my personal feelings on all this medication that is pushed as a 'safe' alternative to topical steroids, when it most certainly isn't, so it is hard for me to remain objective when presented with what all this medication has done, and continues to do, in the treatment of eczema, other skin conditions, and (T)SW.
- This post is not intended to scaremonger, but to share experiences and information, because now the dangers of topical steroids are starting to be shared, medical professionals, eczema associations and any organisation or company looking to make money from medication is searching desperately for alternatives that can be profited from. Currently, there is the insinuation that if something isn't a topical steroid, you'll be OK, which is absolutely terrifying. I have said this before, but there are people who are currently using medication like oral steroids in the belief they'll be totally fine when they would probably have been better off sticking with a topical steroid – again, I don't write this lightly as I know how damaging topical steroids can be (first-hand), and I am certainly not offering medical advice here.
- To those who need to take some form of steroid or immunosuppressant as TSW simply isn't an option for them, please know that this post isn't meant to judge those who need to use this medication, or something similar, and if anyone is judging you, that is simply wrong. I just believe that people need to know all the facts so they can make an informed decision on what medication is right (or wrong) for them. Our community was formed because we didn't know all the side effects and suffered because of it. It all comes down to informed consent.
- Last, but certainly not least, oral steroids are a serious medication, and if you are looking to stop using them, please seek medical advice as it is likely you'll need to taper off them correctly.
There is something else I wanted to say that isn't necessarily a disclaimer, but an important point to mention – I'm not anti-medication, I'm not even anti-oral steroids, and think what they are capable of is extraordinary, but I don't think they should EVER be used in the treatment of eczema (whatever eczema actually is ...) or any kind of skin condition, and only when absolutely necessary in life-threatening circumstances. I grow very tired of the boxes you are put in – you either have to be an anti-medication extremest, handcuffing yourself to the gates of pharmaceutical companies (although, let's be real, as time passes, this option is becoming ever-more appealing), or instead, you have to sing the praises of all medication whilst refusing to believe they have any side effects. There is no category for people who respect medicine, doctors, and those who create life-saving medicine, but have also suffered because of all of those things. It's just got so very extreme. There is good and bad in everything, and the balance needs to be restored.
The structure of this post will be very similar to the others in my series and will be broken up into sections. I will be starting with some background on oral steroids, exactly what they are, and some facts on them from the published information available to us at this time. I will then share experiences from those who have used oral steroids.
As always, do read with caution as certain parts of this post come with a pretty hefty trigger warning.
What are oral steroids?
Oral steroids (also known as corticosteroids) are essentially an anti-inflammatory medication, and a synthetic version of the natural steroids that are found in the body, used to treat a range of different conditions. Steroids work by suppressing the body's immune system in order to reduce inflammation and also block the histamine chemical which is released during an allergic reaction.
Not to be confused with anabolic steroids which are used most commonly amongst athletes and bodybuilders and work by binding to the androgen receptors* in the body. Instead, oral steroids bind to the glucocorticoid receptors*. As a result, the two medications produce very different effects on the body. *Receptors are groups of cells which can detect changes in the body and as a result produce a reaction in response.
Oral steroids were first used in 1949 in the treatment of rheumatoid arthritis before branching out into dermatology (nightmare), immunology, oncology, rheumatology, and many other branches of medicine.
Just like other forms of steroid, there are different types, ranging from short-acting oral steroids like Hydrocortisone (I had no idea before working on this blog post that Hydrocortisone was also an oral steroid) up to stronger oral steroids like Dexamethasone, which is used in the treatment of some pretty hardcore conditions and diseases ... and of course used to treat severe eczema (AKA undiagnosed steroid addiction).
Because this post is already the size of a house, I will only be focusing on two of the most common types of oral steroid used in the treatment of skin: Prednisone and Prednisolone.
In a nutshell, Prednisolone is the 'active metabolite' of Prednisone. The active metabolite of a medication is the active form of the drug AFTER it has been processed by the body. So essentially, Prednisone goes into the body, and after a bit of tinkering in the body, it becomes Prednisolone which can get to work on reducing inflammation etc etc... Breaking it down even further (because I found this absolutely fascinating and thought you might, too), before Prednisone can work, it must be converted by liver enzymes (proteins that speed up chemical reactions in your body) into Prednisolone, therefore in those with liver disease, Prednisolone is preferred.
Whilst researching both medications, there is very little difference between them, with Prednisone and Prednisolone being five times more potent than Hydrocortisone, but only one-sixth the potency of Dexamethasone.
You might also find Prednisolone under the brand names Prelone, Millipred, Orapred ODT or Pred-Forte, and Prednisone under the brand names Deltasone and Rayos.
I would also like to note how difficult it is to find information on oral steroids that doesn't bamboozle you with scientific sentences that you'd have to try and decipher as if they were written in a language from some forgotten ancient civilasation. Is this in order for you to not ask questions and use this medication blindly? I find it's the same with legal contracts. It's all written in language that most people wouldn't be able to understand. I digress ...
The most common-known side effects of Prednisone and Prednisolone in medical literature are listed as:
- Weight gain.
- Increased appetite.
- Stomach issues.
- Problems with sleep.
- Fluid retention.
- High blood pressure.
- Psychological effects including mood swings, changes in behaviour, confusion, delirium and memory problems.
- Upset stomach.
- ... plus so many more – I'm just sharing the most commonly-listed side effects I found on many different sources.
Side effects from longer-term use can include:
- Eye problems, including cataracts and glaucoma.
- Cushing's Syndrome (a condition caused by too much cortisol in the body, which can be serious if it's not treated).
- One of the most common side effects of Cushing's Syndrome is a round face (known most commonly as 'moon face'). This side effect is listed on practically every website I looked at regarding oral steroids. 'Moon face' (or 'cushingoid face') occurs when extra fat builds up on the sides of the face.
- High blood sugar, which can cause or worsen diabetes.
- Heightened risk of infections.
- Bone loss, osteoporosis and fractures.
- Skin thinning, bruising and slower wound healing.
What I find fascinating is that with both medications they have acknowledged withdrawal symptoms, such as loss of appetite, weight loss, nausea, vomiting, diarrhea, weakness and fatigue, hence the need to taper off them, but medical professionals still refuse to acknowledge the potential withdrawal side effects with your skin.
Typically, those who take oral steroids for a significant period of time will be given a card from the medical professional who prescribed them which they will have to carry around (a bit like a medical bracelet for allergies) and contains medical information in case of an emergency.
I remember the little blue card I had to carry around with me in my teens for a year after I had stopped taking a course of Prednisolone. The side effect I vividly remember experiencing whilst using this medication was an increased appetite. I have talked about this many times before, but I believe that the course of oral steroids I took contributed to my dependency and eventual need to go through withdrawal. A few years ago, I was certain that this drug was entirely responsible, but, after reading through my notes from the hospital when I was a teenager, I noticed I was also using a hell of a lot of Protopic. Most importantly, whether it was the oral steroids or Protopic, both medications aren't a topical steroid, which is currently the only medication according to medical literature that is capable of causing a dependency to immunosuppressant medication. I am writing this post because this belief needs to change quickly.
Using oral steroids in the treatment of skin is something which I simply cannot get my head around. Most medication starts with good intentions in areas where they should to be used. Take Protopic: the active ingredient in it (Tacrolimus) started off as a medication used to lower the risk of organ rejection in transplant patients, but somehow, this powerful immunosuppressant wormed its way into the hands of dermatologists who need to be banned from using medication because they've become too trigger happy prescribing it all and haven't got a clue what they are doing with it. This also applies to oral steroids.
I thought I would also share a very personal experience with oral steroids that weren't used in the treatment of eczema, but in the treatment of terminal cancer. When my beloved grandmother was in the hospice after bravely battling lung cancer, she was given oral steroids. Very quickly, she felt so much better, it was extraordinary. Suddenly, she was full of life and had a healthy appetite for the first time in years. As a result, we were given a date for her to come home from the hospice, but only a few days before she was due to be discharged, she made a very rapid decline and what happened next was deeply traumatising to watch. This is to say that whilst I do think they can be incredible, and keep people alive, oral steroids are so strong they offer false hope, like in my grandmother, and the rebound can be even worse than the reason they were used in the first place. She was so weak and small (around 6 stone), she could only withstand them for so long before her body said no more. After her sudden decline, she died three days later.
I really hope me sharing something so personal doesn't trigger anyone, but I thought it was important to mention because I see this happening with eczema and (T)SW. Sometimes, they give false hope when it might have been gentler to let nature take its course.
Again, I say this whilst acknowledging all the good oral steroids can do – medical professionals just need to be a bit more responsible in how they prescribe them.
I also feel an immense sense of sadness that if I ever (touching all the wood) needed to use them in a life-threatening situation, it would cause extreme anxiety and fear. I cannot describe the panic I felt during the Covid pandemic when news articles started to circulate about oral steroids being used to save people's lives. I was then terrified of contracting Covid – not because of the unknown nature of the condition, but the fear that I might have to use a steroid.
I feel like I have said enough on this medication for now and it is time to hand it over to some of the incredible people in our community who have kindly shared their experiences with oral steroids and offer categorical proof that oral steroids can cause a dependency and negatively affect people's skin, just like topicals.
Before I share their experiences, I would encourage you to read the beautiful Kaitlyn's experience of using oral steroids over a long period of time who I previously featured on my blog (here).
*Please note that in the following case studies (and how I have written it above), there are instances where TSW has been written (T)SW. Due to the names surrounding our iatrogenic condition being focused solely on topical steroids (absolute madness), desperate measures have had to be taken. Please read this post (here) for more information. (T)SW is how I will be writing it from now on until a more permanent, more inclusive, solution is found.
Chris (@heihn)
18-24
*
1. What did you use oral steroids for originally?
I was convinced to use Prednisone and other corticosteroids (never topicals) to treat my severe eczema that was spreading uncontrollably.
2. When did you use oral steroids and how long did you use them for?
My eczema that got very bad from January 2021-June 2021. I let an arrogant urgent care doctor convince me I had an infection. I’m normally against all pharmaceuticals, but I took an 8-day course of Prednisone, along with antibiotics and a steroid injection in one visit. Followed by a ‘slow release’ injectable corticosteroid on day 9 when I immediately started flaring worse. 4 weeks later I was given a tapering dose of Prednisone. By this time, I had already had almost full-blown TSW. It was after that last dose I realized; I was inducing the same condition I had read about extensively from topical steroid use – I just had no idea oral/injectables could cause the same reaction.
3. Brief overview of your steroid/immunosuppressant history.
I had never been on steroids prior to this, oral, injectables, and no topicals, ever.
4. Do you believe that oral steroids have affected your withdrawal, and if so, how do you believe they have?
The oral steroids didn’t affect my withdrawal, they were the reason I had any withdrawal at all. I was actively discovering the cause of my eczema, trying to manage through diet, supplements, etc. I only took the ‘medications’ because I was convinced I had a severe infection that needed to be “controlled”.
5. Thoughts on oral steroids and your experience of using them.
My withdrawal symptoms included: systemically red, itchy to the point of tears, shedding, weeping skin. Severe pitted edema in my feet, ankles, and shins. Hair loss. Insomnia/very little sleep. High resting heart rate (above 90bpm). Body temperature dysregulation. Very swollen lymph nodes. Anxiety, depression, and suicidal thoughts. My thoughts – those prescribing need to be VERY careful, and should be held more accountable.
6. If you could go back, would you use oral steroids?
I will never use steroids again, you couldn’t pay me to take them. It’s actually a fear of mine that I will end up in an emergency situation where steroids are given to me without my knowledge or consent.
25-34
*
1. What did you use oral steroids for originally?
I was prescribed them for a big eczema flare-up I had in 2017. I was first given them by an A&E doctor in a hospital who had eczema herself. I still remember her face and the way she pulled her arms out to show me her own eczema. I tried multiple courses of antibiotics and antifungals with my GP and it still was not clearing. I never used steroid creams on my eczema because I used them in my childhood and they never worked. My GP was ok with me not wanting to use the creams, although he would always encourage me to use steroid creams, I always declined (I was not aware of TSW, I genuinely just thought these creams won’t work).
2. When did you use oral steroids and how long did you use them for?
I was first given a course by a hospital in 2017 when I was in college doing my A levels, and I used them for 5 days. It was 8x 5mg tablets and then the last 2/4 days was 6x. They worked like MAGIC, absolute magic! They cleared up my skin completely, my skin was perfect. I had 0 problems for the rest of the year.
3. Brief overview of your steroid/immunosuppressant history.
After my first ever steroid use in college I ended up eventually having to take more courses, the breaks of clear skin stayed a long time – months up to a year even. Eventually I would flare again and the only thing that calmed the flare was the oral steroids. My GP gave me enough courses, but sometimes would decline my request for more as I had had too many. I used to try different walk-in clinics and A&E hospitals to see if a doctor would give them to me. Looking back now I can tell I was definitely addicted, but at the time I was just desperate for some relief, nothing other than oral steroids gave me relief.
4. Do you believe that oral steroids have affected your withdrawal, and if so, how do you believe they have?
Yes they have. I feel like oral steroid withdrawal, although not worse than Protopic withdrawal, is worse than topicals. It’s more intense, and the red hot intense full-body burn you feel. It’s like the devil brought fire from hell and set you alight himself, I will truly never ever forget that feeling. I always try my best to block it out but sometimes I get triggered by the sun for example. Any kind of heat to my skin just takes me back there.
5. Thoughts on oral steroids and your experience of using them.
Run away. Far far away. I actually had an anaphylactic shock a few months into my withdrawal, I ended up having to be taken to hospital in an ambulance, and when I got there, the A&E doctor said he was going to administer me steroid (Prednisone) through my IV and I literally jumped up and screamed like no the hell you're not. He explained to me that my breathing was not regular and that it could be dangerous for my breathing if I didn’t take it. And I just declined and I was perfectly fine and ended up being discharged a few hours later.
6. If you could go back, would you use oral steroids?
If I was aware of TSW and that it was real and it existed, no I wouldn’t. I just unfortunately came to know about TSW when there was barely any information or people online speaking about it (truthfully).
Michaela (@bighair_dontcare)
25-34
*
1. What did you use oral steroids for originally?
I used oral steroids for an autoimmune disorder flare-up that I had in 2017. Oral steroids are used as a “quick fix” to suppress the immune system & I was in the hospital for a few weeks due to a bad flare-up and was given high doses of steroids to calm my flare down. They told me that I couldn’t stop them abruptly, even when I felt better within the first 2 weeks, and had to taper off of them for the next few months. They had me on high doses, starting me at 80 mg/day.
2. When did you use oral steroids and how long did you use them for?
I used oral steroids for those 3 months beginning in January 2017, and for another 2 flare-ups before that, but for very short periods of time.
3. Brief overview of your steroid/immunosuppressant history.
I had my first encounter with oral steroids from my autoimmune flare-ups and was not aware of the side effects, and it wasn’t until later that I found out there were so many. I should add that growing up I did have eczema on my hands and the creases in my arm, and sometimes parts of my eyes. I was prescribed topical steroids by my doctor to use as spot treatment. They didn't really work so sometimes I didn't even use them, and the eczema got better over the years. I really believe that the oral steroids that were used in my mid-twenties is what put me into steroid withdrawal shortly after I stopped using them.
4. Do you believe that oral steroids have affected your withdrawal, and if so, how do you believe they have?
Absolutely. My withdrawal happened very soon after using oral steroids, and my reactions were very different to any eczema I had ever experienced in my life. When I started doing my own research, I realized that oral steroids do the exact same thing that topical steroids do. One huge difference of the two from my experience was that the oral steroids I was prescribed with was 80 mg a day which is much higher than any topical steroid I had ever used before.
5. Thoughts on oral steroids and your experience of using them.
Steroids took away years of my life I'll never get back & because of that I will forever share my story in the hope of preventing those that aren’t aware of the risks of this drug becoming informed. I wish I knew the risks as I would have tried to find other options for healing. Topical steroid withdrawal is one of the hardest things I've had to live through. It made me so much stronger, and I've grown so much because of it ... but I wouldn’t wish it on my worst enemy. Feel free to read my blog (here) or watch my YouTube (here) for more details about my story!
6. If you could go back, would you use oral steroids?
If I could go back I would not use any steroids. I've learned how to naturally heal my body through herbs, living a plant-based lifestyle, and incorporating necessary supplements. When you find and heal the root cause of issues within the body, you don’t need immune suppressants to cover up the symptoms. This is the way for our bodies to tell us that something isn’t right. I felt like I had to learn the hard way, but better late than never.
Skye (@seaskyeheal_t.sw)
25-34
*1. What did you use oral steroids for originally?
I was prescribed oral steroids for the first time for some seemingly random eye swelling I was experiencing and then later prescribed them for “severe eczema”.
2. When did you use oral steroids and how long did you use them for?
Twice in spring 2018 for the “random” eye swelling (I suspect I was already in TSA). Later in spring 2020 I was in a worsening state of (T)SA and beginning (T)SW slowly & intuitively (unaware of what was happening, only that the steroids were not working anymore and discontinuing use of topical steroids slowly partially due to pain upon application). Over the course of the first 6 months I was prescribed oral steroids for “severe eczema” 3 different times, total. April, June and August 2020. The first prescription was 2 weeks tapering, the second 5 days tapering, and the third was 33 days total tapering. I took as prescribed. The oral steroid prescribed to me every single time was Prednisone.
3. Brief overview of your steroid/immunosuppressant history.
Prescribed TS at age 5 for “severe eczema” behind knees. Prescribed TS periodically by dermatologists and later pediatricians throughout childhood and adolescence, whenever skin flared. At 25, TS stopped working. Age 26 discontinued use of all steroids after finding out about (T)SW. Prescribed oral steroids for eye swelling at 23 (2018). Prescribed again in beginning stages of (T)SW in Spring/Summer 2020.
4. Do you believe that oral steroids have affected your withdrawal, and if so, how do you believe they have?
I have (T)SW symptoms in places I never used topical steroids, I wonder if in part this has to do with the systemic spreading of the drug throughout the body. My skin would clear or nearly clear with each prescription and then flare even worse after ceasing taking them. The effects on my mental health were detrimental, along with the PTSD that many (T)SW sufferers experience. While on oral steroids I was extremely agitated, similar to “roid rage”. I became angry so easily. After ceasing the oral steroids the rebound effects were mental and physical. Skin would get even worse than before, and depression and anxiety like I had never known before as well. I remember it felt like I got hit by a truck every time I would finish a prescription, for weeks afterward. My body was in withdrawal for what it was addicted to and it felt noticeably worse than before each prescription.
5. Thoughts on oral steroids and your experience of using them.
Detrimental when trying to heal from (T)SW. Treatment doesn’t last, seems to be detrimental both physically and mentally, and caused so many problems for my healing on physical, emotional and social levels because of this. It was a traumatic experience to watch my skin “get better” with this band-aid medication, and even have people compliment me, only to get off of this medication and then feel and look so much worse than before. I truly believe if I hadn’t used oral steroids I would be more through my withdrawal process by now. Instead, I still flare in small places that I never used TS. I genuinely believe they prolonged the process and had truly horrible effects on many aspects of my healing.
Also, my skin got progressively worse with each round of oral steroids. After completing the 33 days tapering (prescribed by a naturopath!) I actually had the HARDEST time recovering, physically and mentally. I recall my entire body SEVERELY aching and feeling as though I’d been hit by a semi-truck for weeks on end after finally getting off oral steroids for good. Then the depression set in … I remember taking that selfie on September 11 (above) and feeling so absolutely depressed I really thought I might want to die. I was fighting with everything inside of me to hold on, because my skin’s health declined so immediately after getting off the oral steroids. It was a truly traumatic experience. The photo of me on August 12 shows how “normal” I looked and people complimented my “progress.” I truly had never felt more anxiety. Not to mention the roid rage that came with a month+ on oral steroids. All of these photos are from 2020.
6. If you could go back, would you use oral steroids?
No!
Sunpreta (@tsw_healin)
18-24
*1. What did you use oral steroids for originally?
I used them for eczema/atopic dermatitis.
2. When did you use oral steroids and how long did you use them for?
I remember taking oral steroids for the first time in 2017. I used them for 5 days (10mg for 2 days then 5mg for 3 days). I would then use the same course every six months due to the drastic weather changes (in summer it can reach 48°C, then 8 °C in winter), but in 2020, I had to take the five day course every month, and over time the doses increased from 10mg to 32mg. I eventually went into TSW on 8th November 2021.
3. Brief overview of your steroid/immunosuppressant history.
As above, in 2017, I had a really bad flare-up of eczema behind my knees and was given a course of oral steroids and steroid cream to treat it. I had never had a problem with my skin before this. The eczema went away for a while but when the weather changed, I started getting flares on my face and neck (horrible flares) for which I was again given oral and topical steroids. She also gave me Protopic after 4-5 visits and said to use it after the course of oral steroids. She said it's 'non-steroidal and will keep you clear even when you're not on steroids'.
4. Do you believe that oral steroids have affected your withdrawal, and if so, how do you believe they have?
Oral steroids did affect my withdrawal because I didn't use topical steroids or Protopic for more than 3 days in like months. I was on oral steriods every month from June 2020 till November 2021.
5. Thoughts on oral steroids and your experience of using them.
I had a bad experience because they ended up making my skin extremely thin. I am very pale so people literally told me "your veins are so visible, you're surely malnourished". I don't remember having eczema on my arms so I never used topical steroids on them, but they're still my worst effected area in TSW.
6. If you could go back, would you use oral steroids?
I would not go back to them because they might work really FAST but you can't poison yourself for a few days of clear skin.
Jonathan
25-34
*1. What did you use oral steroids for originally?
I originally used oral steroids for a flare-up of my Asthma. They were prescribed by my GP.
2. When did you use oral steroids and how long did you use them for?
I first used oral steroids for a week in March of 2020, just as Covid was hitting. This was for the first Asthma flare up. I think used them again in September of 2020 for another Asthma flare up. Both times I didn’t question it. September of 2020 was when I started to get symptoms of (T)SA. As soon as I finished that second course of Prednisone I noticed a rash on my torso. I went back to the GP and was prescribed Prednisone a further 2 or 3 times to try and “Calm” the rash. They only made it worse. The last course was for a 2 month period on a reducing dose, ending in January of 2021, which is when I learnt about TSW and I started my journey of learning about my body.
3. Brief overview of your steroid/immunosuppressant history.
So there was the Prednisone in 2020 as above. Prior to that I had used steroid creams for small patches of Eczema since I was 3 years old. Never had any adverse effects. But as I was using the Prednisone and the rash was getting worse I used more and more steroid cream as well to try and calm it down. But it had stopped working by this point. After a few months of full-body flaring (Starting in Jan 2021) I couldn’t take it and I decided to try Cyclosporine in May 2021. It worked! For all of 3 months. Then it stopped working. The derm had diagnosed me with PRP (Pityriosis Rubra Pilaris) and prescribed Acitretin as well. Another poison that I do not recommend. I reduced the Cyclo and Acitretin from September 2021 thinking I could manage my symptoms and get off the meds in time. It wasn’t working and in Nov 2021 (on my birthday) I stopped all medication. I was tired of full body flares and reactions to medication.
Again, as I stopped I flared, hard. Full body itching daily, sweating etc. But as I gave it time and started taking my lifestyle, diet and sleep seriously I started to see real progress. I know that it is real progress because it's slow progress. I am now very wary of anything that promises to heal quickly! I take multivitamins, get 8 hours sleep every night, I walk 10,000 steps a day as a minimum and I eat a whole food diet. Nothing special about it, just no processed foods. I avoided some known triggers for me, like salicylates and histamines for a while, but the main factor is no processed foods and I feel great! This may not have a direct impact on my skin but I believe there is a transient effect on my skin via my mood and general health that is having a positive effect.
4. Do you believe that oral steroids have affected your withdrawal, and if so, how do you believe they have?
I believe that oral steroids were the trigger for my (T)SA and (T)SW. All steroid “drugs” whatever form they come in compromise your hormones and mess with how your body functions and the skin is how your body tells you something is not right!
I had been using steroid creams before that but the oral steroids tipped me over my tolerance.
5. Thoughts on oral steroids and your experience of using them.
They should be banned. And immuno drugs need to be more tightly regulated and not used for skin conditions.
6. If you could go back, would you use oral steroids?
Never again. If I could go back, I would never have used topical or oral steroids or Cyclosporine. I will forever struggle to trust doctors in the future. And that makes me really sad because I know there are lots of good people that become doctors to truly try to help but they get brainwashed to push drugs that don’t help. The system needs to change.
***The next experience is slightly different from the others I've shared and taken from a series of voice notes I received from Jennifer. Initially, we were going to take information from the voice notes to fit the questions, but then I thought it was important to share what she had said as a whole because her experiences show the magnitude of the issue we face with all forms of steroids and why things need to change quickly.***
Jennifer (@tsw_jennifer)
35-44
*I've had many experiences with corticosteroids in my lifetime. My most recent experience was exactly two years ago when I was self-isolating because of travel and Covid-19 and I ran out of my steroid creams. Because it was only for fourteen days, and I’d always applied them sparingly, I didn’t think it was a big deal as it was just a bit of 'eczema cream' that I always had with me.
At the time, my son and I were using the same creams. Within three days we were both experiencing Red Skin Syndrome, with the full-body red flush, nerve zingers, oozing, no sleep, and tearing your hands open … We were both really confused that we were experiencing the same symptoms, but we just tried to cope through those two weeks. At this point I had started to research and encountered TSW and RSS, but I didn't want to believe it was a thing.
After fourteen days of self-isolation, my family and I went on a camping trip, but my son, Grayson, and I couldn't go out in the sun because our eyes were swelling shut. Because I was starting to feel really unwell, and my symptoms were much worse than my son’s, my husband decided to take me to the emergency. When I arrived, they put me through immediately and diagnosed that I was having an allergic reaction (angioedema) and hooked me up to an IV – a drip containing Benadryl and steroids. Not once did they actually ask me if that was OK, or inquire about my medical history.
Through an emergency room referral, I managed to get an appointment with a dermatologist four/five days later. Whatever they had given me at the hospital only lasted two days before the symptoms returned, and when I saw the dermatologist, he took one look at me and said, ‘Topical steroids aren’t going to work for you anymore and you need to go right now on a dose of oral steroids to get this inflammation down’. I was given a prescription for three months with a tapering schedule. He said that after I came off the oral steroids, he could get me onto a clinical trial for Dupixent.
Trustingly, I went on the three-month course of oral steroids. Thankfully, my son was not as severe as I was and not on any intervention medication, and his skin was a little better than mine. Curious, I researched Topical Steroid Addiction/poisoning withdrawal a little bit more.
When I tapered down to 10mg, all hell broke loose, and I got scared that this would constantly happen – I’d taper off the medication only to go back on it when it stopped working. I followed the doctor’s guidance, going down to two weeks at 10mg, but I knew that my doctor would want me to go back up to 15mg or 20mg a day. It was at this point that I said, ‘fuck it’, and threw away the rest of the pills, knowing that I had to figure out what was going on with my skin and let it heal because I was done with all the medication.
When I had stopped using the medication, I was left with no skin – I was like a ‘raw zombie’. Then, the inflammation kicked in, and for the next three months my husband literally had to get me out of bed in the morning.
At this stage, Grayson was a mess, too. I had managed to dispose of the medication and I was determined to figure this out on my own. Grayson had been healing the whole time I was on oral steroids, and I guess he was at the shedding stage.
After I had stopped the oral steroids and had been going through the early stages of withdrawal, I requested another dermatology appointment. I had read peer reviewed journals and had done research on TSW etc., but I wanted to discuss this all with a doctor. I faced another long waiting list, but because my husband was working with a rugby team at the time, the team’s doctor agreed to see me. Armed with all my papers, I saw the doctor who just looked at the rash on my neck and said, ‘Urticaria – this is an allergy’. I then told him about the eye swelling and he said it can’t be from the medication and that I needed to get the inflammation down. He then proceeded to type my symptoms into an online website to find out what medication could be used to treat me and the drugs which came up were Blexten, a hardcore antihistamine, and Singulair, which is prescribed for asthma (which mind-blowing, as now doctors are using it to treat Atopic Dermatitis). I followed his advice and tried the medication he prescribed. Two weeks in, I was not feeling great. I had no change in my Red Skin Syndrome, and I was still oozing, flaking and swelling. That’s when I started to believe in TSW.
I’ll never forget the morning that I decided to go through the process of ‘cold turkey’ withdrawal. I thought, ‘What is going on?! I need to take ownership of my health’. I went into the bathroom and looked through my medication basket and cried. I realized that I had been poisoned with steroids for decades. I took my asthma inhaler, my Flonase nasal spray, eye drops, ear drops (as I kept getting ear infections), eye cream – all steroids – and threw them in the garbage. At this stage, my hair was also falling out. I was getting Kenalog injections, too, and what I came to realize was that my doctors were prescribing steroids in every square inch of my body. The big picture consideration is that the whole process of immunosuppression is really harming people. It’s not only steroids, it’s basically any medication that suppresses our immune system. The cure is actually worse than the condition. The more I discovered about these particular prescription interventions, and everything that I felt was wrong with me, every concern I had … it all came back to my medication. Medication was making people sick.
*
I started to connect with an event in my past. When I was about 23, I was living in Ottawa, Canada, and I remember running out of my usual eczema creams. I went to a dermatologist and she prescribed me Protopic. She obviously thought that the current steroids weren’t being effective. I have heard that so often – go a step up … a step up… I remember trying Protopic and it burned my face, so I decided I wasn’t going to use it.
Departing on a trip to Hawaii during this time, I went away without any medication. On day three my eyes started swelling in the sun (which is exactly what happened when I started on this withdrawal journey). I remember getting to the hotel and trying not to panic before pumping myself with Benadryl.
The next day, I had to attend a professional volleyball tournament for work. I was in the sun again and, sure enough, my eyes were swelling shut, to the point where everyone said to go to the emergency room. When I got there, the emergency room was packed, but they rushed me straight in and the doctor took one look at me and said, ‘Stevens-Johnson Syndrome’. He said how serious it was and that I could lose my vision. What did they do? They hooked me up to the good Prednisone and Benadryl. I was on this drip all day before leaving with a prescription for oral Prednisone. I was on the Prednisone prescription for two months, but tapering off was hell. After waiting for months, I finally got in to see a dermatologist and she loaded me up with topical steroids and Protopic. It got to the point where I had to take time off work because my skin was a mess.
I was sent to the top dermatology clinic in Ontario at Sunnybrook Hospital in Toronto and was given steroid creams and Protopic again. I followed their advice, using the medication, and remember everything just going away. I always thought during this time that I had Stevens-Johnson Syndrome (SJS), but I realize now that it was classic TSW. What concerns me is that people are constantly being misdiagnosed in the emergency room and at the dermatologist, so if TSW is not recognized, and we’re getting pushed to use more immunosuppressant drugs, when is this cycle ever going to end?
Helga (@helgaglasgow)
25-34
*1. What did you use oral steroids for originally?
I was a few months into TSW when I felt my flare was increasing by the hour and I was in incredible pain, my entire body was on fire and I could barely open my eyes and mouth due to swelling. I went to A&E and was told I needed to take a course of oral steroids to “control the extreme allergic reaction” I was going through. They gave me Prednisolone, and said if I did not take them they would see me the day after because my body would still be going through an allergic reaction (reaction to what they didn't say, and they laughed off TSW when I tried to explain) and that I would have wished I had taken the Prednisolone today.
2. When did you use oral steroids and how long did you use them for?
I took Prednisolone 3x per day for 3 days in total (was told to do 6 days originally but explained to them that steroids initially caused the reaction and they reduced to 3 days) in the summer of 2020.
3. Brief overview of your steroid/immunosuppressant history.
I used topical steroids for my entire life until they stopped working and I started flaring while using them; from 2 to 31 years old.
4. Do you believe that oral steroids have affected your withdrawal, and if so, how do you believe they have?
The Prednisolone was MAGICAL and almost wiped all of my TSW symptoms within a couple of days. Then I experienced an even worse flare post Prednisolone than what I had experienced from topical steroids initially. The Prednisolone helped my skin then pushed my body into an even bigger rebound flare, which I think prolonged my initial withdrawal. I wish I had never taken them.
5. Thoughts on oral steroids and your experience of using them.
Personally I would not recommend them. I feel for most cases I have seen and my own experience is that oral steroids have prolonged withdrawal and healing, given false hope, and many oral steroids have serious health warnings associated with the drug which doesn't make sense. Withdrawal has to happen from the drug without using stronger versions of the same drug.
6. If you could go back, would you use oral steroids?
No, I would not use oral steroids. Healing takes time and I understand that not everyone can pause their life to go through TSW, but I do believe that they prolong the inevitable.
Junnie (@junnie_raphaela)
25-34
*1. What did you use oral steroids for originally?
Since I was young I had the typical mild eczema that we all know of, but it never bothered me or affected my quality of life, except that my skin didn't look perfect and smooth. It was in the usual areas (elbow creases and back of knees), but that was about it. It was really only in my early 20s when I started developing dyshidrotic eczema on my fingers and palms. With the benefit of hindsight, I now know this was fully caused by my detergent and excessive handwashing due to my baking hobby (which I also ran an online bakery business in for some years during university).
2. When did you use oral steroids and how long did you use them for?
In my early twenties when I developed dyshidrotic eczema on my fingers and palms, I started using topical steroids and even oral steroids. I was always very lazy with applying the topical steroids and so I hardly used them, but whenever I was prescribed oral steroids, I did take them diligently because I knew I had to follow the instructed prescription to avoid my adrenal glands going into shock. I noticed that the consumption of oral steroids is what sets me apart from many.
3. Brief overview of your steroid/immunosuppressant history.
As above.
4. Do you believe that oral steroids have affected your withdrawal, and if so, how do you believe they have?
I believe TSW can be caused by large/heavy usage of topical steroids, or oral steroids, or a combination of both. However, in my case, I believe it was the oral steroids as I noticed my skin deteriorating very quickly in the few years that I was using them (2 week course about 2 to 4 times a year). As the usage of oral steroids progressed, I noticed the spreading of my eczema from just my hands to previously never affected areas like my torso, ankles, thighs, and even my face (where I have never used topical steroids). Looking back, this was a big sign because these are not usual eczema places and I now believe they were purely induced by the steroids. As my consumption got more frequent, they also became less effective, and near to the time I decided to withdraw, the oral steroids were no longer able to fully clear me up and I would get a relapse just 1 or 2 weeks after finishing my course.
5. Thoughts on oral steroids and your experience of using them.
When I started, I could go a few months to half a year with clear skin before I got a relapse. My usage of topical steroids was not much at all, but my withdrawal was considered relatively severe and also full body. Not an area of my body was spared, including my palms and soles of my feet. Many areas which have never touched topical steroids were badly affected during withdrawal – good example would be the soles of my feet, which I had zero problems with my entire life, and also the front and back of my neck. These places were so bad during withdrawal, and if not that the oral steroids caused a systematic withdrawal, I don't know what else could have caused these places to suffer because I never used topical steroids there. I also recall using topical steroids on less than 10 occasions on my face, and it was specifically on my temples and cheek area, but my withdrawal was full face and the most badly affected area was surprisingly my jaw and chin.
I notice that while my topical usage was very limited in quantity and area, my withdrawal was systematic and full body. I also got very systematic TSW symptoms, like the nerve zingers, thermoregulation issues (very cold or excessive sweating), insomnia, full body flaking and oozing.
6. If you could go back, would you use oral steroids?
No!!!! Never!!! Not in a million years. It is my biggest regret so far.
Ellie (@tsw_ell)
25-34
*1. What did you use oral steroids for originally?
I was 6 months into topical steroid withdrawal and just couldn’t take it anymore, so after begging my GP for a referral, I finally saw a derm at my local hospital who suggested a course of Pred. I had never had to take oral steroids before despite having eczema since I was very little.
2. When did you use oral steroids and how long did you use them for?
I started the course on 15/10/2021 and it finished on 26/11/2021, so it was a 6-week course.
3. Brief overview of your steroid/immunosuppressant history.
Had eczema since I was very little as mentioned above. Used Hydrocortisone and Clobetasol. Have never used any immunosuppressant creams (Protopic etc).
4. Do you believe that oral steroids have affected your withdrawal, and if so, how do you believe they have?
100% oral steriods made me so so sick. Prior to taking them, I had gone 6 months without any creams and although it was really really tough, it was nothing compared to the pain I endured after coming off the Pred. They made me and my skin so much worse.
5. Thoughts on oral steroids and your experience of using them.
I honestly regret taking them. I wish I never did, but there’s nothing I can do now and I’m glad I’ve only ever done one course.
6. If you could go back, would you use oral steroids?
I would never touch them again!
Callie
35-44
1. What did you use oral steroids for originally?
I was prescribed them after my usual steroid cream would not work (Elocon) on a small patch of dermatitis near my temple. I did not/do not like to use steroid creams daily, so after it not ceasing after a couple of days, I went in hoping for something else to fix it. My eczema had been in a sort of remission, only needing to use Elocon on one small patch of my philtrum bridge/upper lip from irritation due to sweating. Also, this new patch of dermatitis was very odd; it was just flakey, never red or itchy. It just was constantly shedding skin.
2. When did you use oral steroids and how long did you use them for?
I was given a round of Prednisone after not being able to clear the dermatitis with creams and a steroid injection. The injection did absolutely nothing for my skin patch. I used Prednisone for a two-week taper. While on it, my skin patch went away. After my prescription ran out, the patch slowly came back, as well as new patches occurring on my forehead and near the nape of my neck. I was motioned to see a certified dermatologist in my state's capital. I was given two more rounds of Prednisone; one 2-week run from a road trip to the dermatology/medical clinic (my original providers were registered nurse practitioners). My final prescription was another 1-week taper to get me through a wedding event. I did not want to appear a splotchy, rashy mess in case of photos.
3. Brief overview of your steroid/immunosuppressant history.
As a toddler I was put on Ultravate because the backs of my knees and upper legs were so raw and irritated. My mom says that stuff was like a miracle; my irritation that was plaguing me for months finally went away. From that time on my mom held onto a small tube just in case. I personally did not use the tube of ointment unless absolutely necessary simply because I hated the feel of it; sticky, thick and trapped heat. I would rather deal with small patches than feel that ointment in the creases of my skin. I tried Elidel when it first came out, prior to the black box warning. It was okay, but I just didn't think to use it enough so it fell to the wayside. I received Elocon from my grandmother when I told her I could not heal the irritation on my upper lip no matter what. She gave me the prescription she was prescribed. Elocon was a miraculous substance! It was a cream, so it soaked in and left no tacky feeling. That was what I had been using for years up till the oral steroids. I never went through withdrawal because my Elocon use was few and far between.
Once I was going into full-blown TSW, I begged for Dupixent. I knew it was a risk to become dependent on another medicine, but I was at the end of my rope. My personal experience has been amazing on Dupixent. It allowed me to go back to work and live a somewhat normal life. I still flared, still was red, still went through all the withdrawal symptoms, but their severity went from 100 to 50. I am not on Dupixent anymore. I weaned myself off of it once I thought I was near the end of my TSW journey. I will say, I did get a fungal infection, because it was manipulating my skin microbiome, but after a month on oral antifungals, my skin is clear from weeping and redness. I still have troubled spots of TSW, especially around my lips because that is where I used steroids the most. The patches I originally tried to "fix" are gone.
4. Do you believe that oral steroids have affected your withdrawal, and if so, how do you believe they have?
I'm not sure if it's prolonged my withdrawal, but it did send me to the worse end of the spectrum. Weeping ooze was the cruelest side effect I've had to endure. And no amount of ice packs could cool off my skin. It was a nightmare.
5. Thoughts on oral steroids and your experience of using them.
My initial belief was "they are the only thing that works". I was mentally conflicted because I did not want to be on oral steroids the rest of my life. I just could not think of any other alternative other than living with patches all over my face. They helped, but now I am just adamant that people CLEAN UP their entire lifestyle before using steroids. My dermatitis was caused by DevaCurl hair products; had I researched prior to use I would have realized there is an entire movement against their products (read about the movement *here*), with victims suffering the same initial symptoms as me. Working in the beauty industry for a while, I was given a lot of products to try out. I know it sucks to minimize our lifestyles, but removing all gratuitous or indulgent products that go in and out of our bodies is the only way to get to the root cause. I think we also go through a small withdrawal from all the items we've ceased using while suffering through TSW. It's always never one thing; it's an onslaught into our bodies we are never told is risky.
6. If you could go back, would you use oral steroids?
Only as a last resort. I have asthma, but I have not had to use my inhaler in years. I do fear one day I'll need to and it'll cascade into suffering again. I'll be having major surgery in August and I've already told my surgeons I do not want any steroids to control swelling or suppress immune reactions. If I could rewrite history, I would have eliminated all items I use on my body first.
Shelby (@shelbylturner94)
25-34
*1. What did you use oral steroids for originally?
I went into TSW due to steroid creams no longer working and after 6 weeks of Protopic I noticed things getting worse every time I tried to stop using Protopic. I went about 7 weeks of full-blown TSW and was so unwell. I went back to dermatology for the third time in 4 weeks and they told me that my body was going into shock and if I didn't accept oral steroids (I had already declined them) that I would likely end up having to be admitted to hospital and needing IV steroids.
2. When did you use oral steroids and how long did you use them for?
As above – I used them after two months of TSW and was then on them for 4 months.
3. Brief overview of your steroid/immunosuppressant history.
I have used steroid creams on and off since I was a baby (26 years) but had been fairly okay for a few years, only needing to use them maybe twice a year, but then I started to get facial eczema 5 years ago and started to use them on my face. Eventually this escalated from Hydrocortisone all the way to Elocon and Protopic on my face. This progression was particularly over 1 year. Once in TSW I used Prednisolone as explained above, Cyclosporine, Methotrexate and Dupixent. I have also used steroids most of my life for asthma exacerbation, but not for the last 10 years.
4. Do you believe that oral steroids have affected your withdrawal, and if so, how do you believe they have?
They caused more problems when trying to wean off them and I also had steroid acne and folliculitis because of long-term use. I also experienced significant mood changes. I believe they made my anxiety and dependency worse as I knew they would give me relief and initially it didn't trigger me psychologically because I wasn't applying a cream, but in the end it made me more scared as I knew that my whole body was no longer systemically relying on them.
5. Thoughts on oral steroids and your experience of using them.
I feel oral steroids are used for many things so it is really difficult to say. I also think they can be life saving if someone is in a serious crisis in which their organ function is at risk i.e. adrenal fatigue problems, shock to the body. HOWEVER they should not be used as a band-aid to cover up a problem and should be an absolute last resort. At the time I had this treatment it probably saved me in many aspects both physically and mentally but the long term issues I then had to endure were damaging.
Also, I feel I wasn't really well informed about oral steroids and what being on then meant and how they work systemically and the side effects and risks. I wasn't informed to make a decision – it was as though I was just desperate and in crisis and they felt they didn't need to inform me.
6. If you could go back, would you use oral steroids?
At that time, yes, but would have stopped much sooner.
Serial Flaker (@serendipititch)
25-34
*1. What did you use oral steroids for originally?
I was seeing a dermatologist for my (T)SW which was extremely bad. I was about a year or more into (T)SW. She had me on a course of monthly anti-histamine injections, but after 3 months she told me not to come and gave me a pill to take. She did not tell me it was a steroid – in fact she said it wasn’t a steroid. I had no idea it was a steroid pill and took it, which was my mistake. Of course, my skin ‘healed’, but I had no idea what was waiting for me.
2. When did you use oral steroids and how long did you use them for?
I started in July of 2021 and took them for 5 months. Started weaning off them on January 1st and completely stopped on January 24th 2022.
3. Brief overview of your steroid/immunosuppressant history.
At the end of 2019 I had a major eczema flare, which I believe was down to stress, not enough sleep, bad diet etc., and at first, I did not want to go to doctors because I felt like they never helped, but I was desperate. As a result, I was prescribed steroid creams and used them. They worked like magic – the next day, my rashes all just started to peel off, but when I stopped after two weeks, they came back. I asked my doctor and she said to stop slowly, which I did, but they kept coming back. I asked the derm what to do and she said, “unfortunately there's nothing you can do”. She did not even inform me that what she gave me was a steroid. Thus began my withdrawal journey. I was couple months in when I found the (T)SW community and everything made sense.
I went to another doctor who kept trying to shove steroids on me. When I told him the cream was making me worse, he said take to oral steroids, but I did NOT want them in my system, so I just dealt with it on my own for a while until I finally found a doctor who listened, and she gave me light therapy and anti-histamine injections. But then she failed me, too, by giving me oral steroids, despite knowing how against them I was.
The worst part is, I was healing from (T)SW. I started to feel like myself, put on some make-up ... and then I was given oral steroids. This was my first time using oral steroids. I just wish I checked what the medicine was without blindly trusting the derm.
Ironically, I found out that Elocon is a steroid cream, and I used this cream from childhood up until mid-teens. And strangely enough, I never went through (T)SW. It was only after the first dermatologist who gave me Advantan in January 2020 that sent me into withdrawal.
4. Do you believe that oral steroids have affected your withdrawal, and if so, how do you believe they have?
They healed me of (T)SW completely. My skin was brand new, except for certain marks, but it made me bloat a lot and gain weight which is unusual for me as I'm super skinny.
The days I didn't take the pill a rash would show up slightly. When I found out what the pill was on Jan 1st (that was my New Year's Day and I was so depressed), I decided to go cold turkey, but the derm said to wean off. Even with just reducing the pill, the symptoms came back. Once I stopped the pill completely, the withdrawal began at full capacity, although the onset of the symptoms are not as quick as compared to when I used topicals. I did start homeopathic medicine and wet cupping (only when I felt like my skin could take it), so maybe that helps. The symptoms and feelings are still horrible nonetheless. It's not any easier. Its 108 days since I stopped oral steroids, and the rash is pretty much everywhere.
5. Thoughts on oral steroids and your experience of using them.
I would never recommend and would never have taken them if I had known. If I hadn’t taken oral steroids, I would have been healed of (T)SW by now, but I've had to start all over again.
6. If you could go back, would you use oral steroids?
No way. Burn those pills.
Before bringing the experiences with oral steroids to a close, I wanted to share some shorter testimonials from others in the community on their experience of using oral steroids:
I was first prescribed oral steroids for an unusual rash all over my body that commenced mid-2014 when I was on secondment in Colombia. The rash occurred mostly on upper arms, legs, back, side of nose, hands and above my lip. Topical steroids had not worked to clear this. My GP tried antihistamines, a short course of antibiotics and a long course of Prednisolone (one month and then tapered), but as soon as the tapering progressed, the skin condition flared up again. Whilst my GP was trying to ascertain what was going on (unsuccessfully as all tests came back unremarkable), I was then given further courses of Prednisolone. Inevitably the symptoms returned and I note that I also ended up having a further course of oral steroids in 2017.
I now believe the rashes were early signs of topical steroid addiction (TSA) due to the amount of topicals I had been prescribed over the years, and perhaps I commenced a form of TSW when I reduced steroid usage whilst abroad. As such, I can’t attribute the initial stages of TSA to oral steroids. However, having several courses of systemic steroids once I had already started to show signs of (what I now believe to be) TSA, cannot have helped. When discussing the rashes there was no mention of TSA/TSW in the slightest.
As a general comment on oral steroids, I know that they are important in other medical situations (e.g. to reduce side effects of cancer treatment or for a severe case of Covid-19), but if I could turn back time, I would not agree to having them for unexplained rashes when there is no clear diagnosis. Apart from there being little point (as they can’t be a long-term solution and the rash comes back – potentially worse), there is also the mental health aspect to consider. My symptoms almost immediately disappeared on these ‘magic tablets’ and it is tempting to fool yourself into believing you are healed and the skin barrier is now so strong that you can’t possibly get bad again. But the doctors acknowledge that as soon as you taper, you may well get a rebound flare that can be even worse than the initial problem. This is mentally quite hard to deal with. It’s as though you get a short window of insight into how your life could be without a skin issue – and then it’s taken away when it all comes back (often worse) with the rebound flare. Which begs the question – what was the point of taking them?
I went to a dermatologist because of eczema on my elbow creases, nowhere else. It had started due to work-related stress at the beginning of Covid and had been there for a year. He prescribed topical steroids to be applied on top of a course of oral steroids for 20 days (tapering dose). I hardly touched the topical steroids thinking the orals were more than enough.
After the course, I had a break of 20 days, but then went back into the office for a checkup. By that point, the eczema was almost gone, but he insisted on repeating the course because my skin was not perfect yet. When I voiced my concern about the use of steroids he said the dose he was giving me (15mg tops) was the one being prescribed to babies and that there was no harm to be done there because of that (LOL).
After the second course, my eczema got worse and 2 lumps appeared on my left leg and right hand. I went back to visit and he said it was fine and that with time they'd go away. He also prescribed the same dose of a higher potency of steroid – Prednisone. That circle repeated for 7 months, where I was taking oral steroids and a tiny bit of topical for 20 days then a break of 20 days. I had to mix topical the size of a pea with a handful of my moisturiser to apply to the affected area (still only my elbow creases).
I stopped all steroids in September and have been recovering from the effects since. I'd say I am doing pretty great now. My only complication is a nasty infection I got from scratching that doesn't seem to wanna leave my body. If it weren't for the infection I could be living life normally again, albeit the rare flare. My skin goes back to normal (inflammation, oozing, flaking, dryness) after a month now. If only the infection would leave. It's in its final stages but very annoying still. I'm on my 4th course of oral antibiotics in 5 months.
All in all I used steroids for 7 months. I had 20 day-breaks between one use and the next. I stopped because steroids were not helping and I went into full withdrawal after a week. Low dose, highest potency – Prednisone. I have been recovering for 7 months now. Latest flare was more than a month ago and I am doing ok (hoping not to jinx it now...).
My daughter is 16 and currently going through TSW. Her story goes back to fall of 2019 when her Eczema was acting up on her elbow and knee cracks. She was prescribed topical steroid cream, but after applying it her eczema got worse. After a few visits where we were given stronger topicals with the same effects of eczema spreading, we were referred to an allergist. After testing and now full body "severe eczema", as they called it, she was prescribed the oral steroid, Prednisone, for one week. During that time, she looked amazing, but after tapering off, within days she was full-blown TSW (at the time we didn’t know about this). She was oozing, her skin was so itchy it was bone-deep. Her entire body was red hot, skin flaking, unable to sleep and in pain. After months of tests, she ended up on Dupixent which was not working either, so she was prescribed oral steroids again to help speed up the healing. After realizing she was in TSW and not severe eczema we stopped all treatment and we are letting her heal without steroids or injections.
In 2018, after years of increasingly needing topical steroids to control my “severe eczema” and reaching the highest dose possible, they officially stopped working and my skin erupted. I was admitted to hospital with “widespread erythroderma” and plastered in steroids/bandages and given a 5-month course of oral steroids. Things went further downhill after I tapered off the oral steroids, and since then I've been in debilitating pain with barely any quality of life. From then, I've had 2 more hospital stays, cellulitis, recurring eczema herpeticum, and too many skin infections to count. I've been put on Methotrexate, Cyclosporin, Azathioprine (responsible for one of my hospital stays as it destroyed my immune system and I became neutropenic with widespread infection) and most recently Dupixent to help me cope. As of January 2022, I'm officially off all medication and really believe I'm on the road to getting my health back.
I’ve suffered with eczema since I was a child and have been prescribed steroid creams since about the age of 10. Last year, with my skin in a constant cycle of flares and eczema developing aggressively on more of my face, I started doing some research online and decided to stop using topical steroids last summer. It started okay, but my skin was so thin, scabs just wouldn’t heal.
In November, I suffered a bad flare – my arms had become red sleeves of oozing sores. I woke up one morning and my eyes were so swollen I could barely see and I was worried my skin had become infected, so I went to urgent care and was prescribed antibiotics and a one week course of oral steroids. My skin cleared immediately, it felt like a miracle, but just days after stopping them my skin was worse then ever.
My GP then suggested it was because I came off them suddenly so prescribed me another course with a weaning dose. While on them my skin was better, but after coming off them I seemed to be in a constant flare, with an itch that seemed to penetrate my bones, and I would sadistically claw at my arms as they bled, desperate for it to stop. It spread across my body, all over my chest and back, covering my face and neck – I felt depressed, I would cry multiple times daily. I had to take time off work as I hadn’t slept, couldn’t wash myself properly, and I couldn’t bear most fabrics touching my skin – everything felt like needles.
My GP tried to give me oral steroids again and I refused knowing what would happen, and following a dermatology appointment (my first visit to a specialist as it has taken 10 years for a GP to finally refer me) I am currently on immunosuppressants (Ciclosporin for 3 months, potentially then moving on to Methotrexate). I don’t really want to be on immunosuppressants, but my skin was so bad it was stopping me from doing day to day activities and going to work. The immunosuppressants have calmed my skin and I am feeing much better, but I do fear the day that I come off them as well as the risks associated with taking them. Unfortunately I feel like the neglectful and impatient approach that my various GPs have had, overprescribing steroid treatments without listening to me, has left me with little other choice.
* * *
Thank you so much to everyone who took part in this post and shared their experiences so openly. You're all amazing <3
Every post I have shared on the dangers of medication that isn't a topical steroid ends with a plea to those who have the means to implement change to stop focusing just on topical steroids when it has been proven time and time again that other medication can cause this iatrogenic condition. Topical Steroid Addiction, Topical Steroid Withdrawal, and, worst of all: Topical Steroid Withdrawal Syndrome (which was created within the last few years when the dangers of other medication were known), are currently out there, causing confusion and inadvertently endangering people who will potentially switch from using a mild topical steroid to either an oral steroid or a non-steroidal medication and end up suffering even more than they already are.
My words are strong, but this is a matter of urgency, and I shudder to think what will happen if something isn't done quickly to change the dialogue around (T)SW. I think some have been lulled into believing that change is happening – yes, the dangers of topical steroids are finally allowed to be shared in some spaces, but that is only because pharmaceutical companies, and the dermatologists and eczema associations that are paid by the pharmaceutical companies, have other 'non-steroidal' options to talk about.
This is why we need research in order to gain a deeper understanding of this iatrogenic condition, and so I'll leave a link to a government petition which asks for funding into research for (T)SW *here*. Let's end this terrible and preventable atrocity now.
Because this post has been very heavy, I thought I'd end with something positive – the week after next marks nine years since I found (T)SW and changed my life. It was the hardest thing I've ever had to do, but also the best. Please keep going.
Sending all my love,
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: The Nipples (here)
Let's Talk About: Mould/Mold (here)
Let's Talk About: Pregnancy (here)