I am back with the second post in my 'Let's Talk About' series which highlights the parts of TSW that aren't discussed enough and desperately need to be. Today, I am talking about eczema herpeticum (EH).
This is a post I have wanted to do for YEARS because EH is something I wish I'd known about during my own withdrawal and would have been clueless if I'd got it – I might even have dismissed it as part of TSW and not something which requires urgent medical attention. It also seemed appropriate to talk about eczema herpeticum in this series as there is a social stigma around herpes which needs to desperately die a death.
Before I go on, I cannot stress enough that the information in this post is not intended as medical advice and instead there to share people's lived experiences with EH and give you more of an understanding of it so you are prepared.
Eczema herpeticum is essentially an infection caused by the herpes virus and typically characterised by a fever and clusters of itchy blisters or spots. It is highly contagious and usually as a result of contact with a cold sore. EH is most commonly found on the face and neck, but can also affect other areas of the body and sometimes be misdiagnosed as impetigo due to similarities in the clusters of blisters etc. It can happen to anyone with a condition or injury which involves damaged skin (e.g. dermatitis and burns), and those most at risk are people with a weakened immune system, infants and young children, those undergoing any kind of invasive cosmetic procedure and people with eczema who have sustained an injury to the skin.
I mean, hello TSW ...
In my teens, I started getting bouts of pus-filled spots which the doctors diagnosed as infected eczema. I was given courses of antibiotics, which eventually cleared them, but, after learning about EH, it does make me wonder if it was actually eczema herpeticum. Naturally, my skin was never swabbed, so we'll never know now, and saying all this, I never experienced EH through my 26/27 months of TSW, so I'll stop hypothesising.
It is important to mention that not everyone who goes through TSW gets EH – but some do, and that is why I think it is vital we talk about it. Due to the fact we've got to scrabble around for any information related to TSW ourselves, WE are the textbooks, the medical journals and research, until the bloody medical community finally wakes up and rights this wrong.
Rant over, I will be sharing eleven women's lived experiences of dealing with EH, and like my other post in the series, I will be sharing the age range of each woman, e.g. 18-24, 25-34 ...
Also, just a little FYI that some of the experiences were sent to me in the summer and it's taken me till now to work on the post, so I'll add a little note where applicable to the entires if any information shared is inaccurate because of my delay in posting.
Lastly, I wanted to add a little disclaimer of sorts as some of the photos are distressing and could potentially be a trigger.
Without further ado, I'll hand it over to them x
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| *From left to right, top row then bottom row - Rosie's skin over a month dealing with (and recovering from) eczema herpeticum, starting with the blisters under her lip* |
What is the condition you used steroids for originally?
I was originally prescribed steroids for eczema when I was very young (probably around 5 years old?). At the time I had an undiagnosed wheat allergy and some environmental triggers (cats, dogs, grass, mold) so I believe in retrospect that those were the actual cause of the initial rashes. I didn’t follow the right allergy free diet for me until I was about 18 or 20.
A brief overview of your steroid/immunosuppressant history.
I used topical steroids from the age of 5 to about 25 (stopping a little over half a year ago *Rosie sent me her responses at the beginning of August, so about four months have passed since then*). I was never prescribed oral steroids, thank god, but the topical ones were ratcheted up in strength until I was given clobetasol (very potent) about two or three years ago for “very stubborn dishydrotic eczema” on my hands. This is something I still give myself a hard time for, but I sincerely don’t think I understood that all these drugs with different names were stronger and stronger versions of the same ingredient. I thought it was almost like different antidepressants with different formulas and outcomes. I think this is a prime example of a failure on the part of the medical community to explain basic things clearly (but sometimes I can’t help but feeling dumb for not understanding sooner).
How long have you been going through TSW for?
Near the end of December of 2020, I had had it with the steroids because they simply weren’t working and I had two patches of ‘eczema’ on my palms that had been there for over a year and wouldn’t budge. I thought if this strong of a medication isn’t fixing it what’s the point. I stopped using the steroids without too much thought. At this time I didn’t really know about TSW. I had literally disposed of all my steroids, and only realized about three weeks later (already in agony with the itching and burning) with the help of info from Cara, Dr. Heba (seriously bless that YouTube video), and countless other amazing people on socials, what was really going on. And I am so grateful I had done away with the creams before I had time to doubt my decision. I have to say I have found myself to be one of the luckiest people because I have been steroid free for seven months now, and even though I used them for about 20 years, the worst of it for me was in the first four months.
Things genuinely feel almost back to (way better than) normal. I am praying I don’t have a new ‘slow burner’ flare, but we will take things one day at a time and see what happens. The large patches on my hands that were there for so so long are COMPLETELY GONE. It feels like a miracle. To the point where I think most of the ‘eczema’ I’ve had the past five or more years has been purely reactions to steroids. I have so many memories of waking up with such swollen and hot fingers covered in these fluid filled blisters, or waking up with such heat in my face, and I haven’t had any of that for the past 2 or 3 months. I would feel so guilty thinking I ate something wrong, or I must have done something wrong to cause this physical reaction. So much guilt and shame involved before TSW. I genuinely didn’t know life could be like this. I catch myself looking at my hands thinking ‘who’s hands are these?!’ They’re so smooth and calm. It feels extraordinary.
The less lucky side of my eczema journey has definitely been the eczema herpeticum. I had eczema herpeticum long before I started TSW. One thing I could say at the outset is that before I had eczema herpeticum, I had a few instances of getting stress ulcers when I was young and coming down with colds or flus (those ulcers were in a particularly embarrassing location). The point being my body has always reacted very strongly to stress, both emotional and physical. The first outbreak of eczema herpeticum I got was in January of 2015. I had just been visiting old friends in a college town and as a 21 year old we were having a lot of fun not exactly in the most health conscious or restful way (lol). Lots of drinking and little to no sleep.
Did you have eczema herpeticum before going through TSW?
I got back to university in Brooklyn and it’s almost hard to describe what happened or how fast. It was so traumatic and I was so confused and in the dark. I think it’s the not knowing of so many of the different skin situations that is traumatic. It started with a few sores under my upper lip. I thought they were extreme canker sores. 24 hours later my entire mouth had swollen and the sores had moved on and around my mouth. I had just moved to Brooklyn and there were a lot of stressful things happening socially and academically. I think it was the perfect storm. On top of the EH, the entire thing got infected with impetigo. The impetigo was diagnosed first, but the dermatologist missed the eczema herpeticum and I was truly diagnosed with it a week or so later when the antibiotic didn’t clear everything up like they thought it would. Knowing what I do now I would’ve taken myself to hospital in a heartbeat considering how severe it is. I was just clueless at the time.
What has your experience of EH been like? What symptoms etc.
After this huge outbreak I missed at least two weeks of class. I was so embarrassed by the sores, but I felt I needed to catch up on school things. So as soon as I could, I returned to school and caught up, finishing the course of valtrex they put me on and being grateful I had gotten through it. However, the lack of me addressing the source and quantity of stress and diving right back into school caused another huge outbreak on my mouth just two weeks after that. It has now been five and a half years and I have found that I still require one gm of Valtrex a day to keep myself from having flares. I have tried L-lysine (and take it every day), I am almost two years sober, I tried all sorts of different diets. I tried everything I could to not to need the Valtrex, but I still need it. It’s a strange position to be in to have found one medication (steroids) to be so damaging, but then to be so wholly reliant and grateful for another.
Doctors and every thread I come across online are full of people saying they have not had side effects from Valtrex and are just grateful it exists. I finally feel more at peace with my relationship and reliance on Valtrex and I’ll continue to do everything I can to reduce stress in my life. But I expect I’ll need to take it for as long as I’m alive.
How long did symptoms last?
Every time I have a flare resulting in sores the whole cycle lasts about three weeks. The first week is usually accompanied by full body chills and feeling really ill in a host of other ways. The sores themselves are really painful in a deep way and that usually lessens around the two week mark. And the third week is usually the skin fully healing.
Have you suffered from it on more than one occasion?
Yes I’ve had two very bad bouts and upwards of five instances of getting a few sores but stopping things before they got out of control.
How did you treat it?
For me Valtrex is necessary and I do everything I can to keep inflammation and stress down in other areas. For example not drinking alcohol or eating gluten and going to therapy once a week. And doing my best to give up the ‘grind/hustle’ mentality that had me pulling so many all nighters in college.
Signs to look out for with EH?
Feeling the eczema herpeticum come on feels a bit like a heat or tingling around my mouth or under my nostrils. Almost like a different version of the feeling you have when you know you’re getting a bad pimple. Every time I break out it’s always where I have broken out before so it is easy to recognize now. For me that’s the edges of my lips or under my nostrils and rarely now around my eyebrows.
Overall I have to say that these ‘sensitivities’ at this point in my life feel more like some kind of twisted superpower. I am literally unable to ignore my body’s stress response and my feelings. It has forced me to live as close to my true self as possible. As strange as it sounds I’m quite grateful now.
What is the condition you used steroids for originally?
Suffered since I was a child with eczema but it was never severe.
A brief overview of your steroid/immunosuppressant history.
I used steroids from a young age of 3, maybe younger, and as time went on the potency got stronger. I had done a few rounds of orals over the years but the last time was different, 33 days tapering off and with 8 days left I could already see the TSW coming through, with swelling and skin burning. With the steroids not working, I was offered a steroid injection and methotrexate and said no to both and my TSW journey began.
How long have you been going through TSW for?
9 months!
Did you have eczema herpeticum before going through TSW?
Never! I had cold sores starting in my early 20s but they were always small and very easy to keep under control.
What has your experience of EH been like? What symptoms etc.
My experience with eczema herpeticum the first time was incredibly frightening – I had a rash on my cheek, it then spread over my eyes incredibly fast so I went to A&E where they gave me antivirals. I think it was there for about 3 days and once taking the antivirals, the spots seemed to fall off my face – my lymph nodes were also incredibly swollen and oozey the whole time. The second time it appeared on my neck, I treated it with cold sore cream and luckily it didn’t spread. I now take L-lysine and get a lot less cold sores and have a lysine balm in case I see it coming.
How long did symptoms last?
3-9 days for me personally, depending on treatment and placement etc.
Have you suffered from it on more than one occasion?
Yes I have had this twice. I believe with a weekend immune system and barrier it is a lot easier to get and spreads easily.
How did you treat it?
I treat it daily by taking L-lysine supplements, I also have the balm version and cold sore cream in case I notice a flare coming.
Signs to look out for with EH?
- A fast spreading rash that burns, hurts to scratch, and is incredibly painful.
- Swollen lymph nodes & glands.
- High fever chills/feeling unwell.
- Initial cold sores and clusters of small itchy painful blisters.
- Ooze when blisters open, crust forming on older blisters.
Eczema.
A brief overview of your steroid/immunosuppressant history.
Some mild topical steroid use as a child, increased in potency and amount needed in my late teens, early twenties. Never used oral steroids or immunosuppressants.
How long have you been going through TSW for?
3 years and 10 months.
Did you have eczema herpeticum (or cold sores) before going through TSW?
Never.
What has your experience of EH been like? What symptoms etc.
It starts off as a spot that tingles and feels like a very sharp nerve pain if you touch it. It spreads, turning into a mass of little red spots and if they burst, or as it develops, the spots ooze a yellow liquid and it crusts over. If the scabs come off before they’re healed it is an incredibly sharp pain! I catch it early now so it usually doesn’t spread as badly. It really affects my mood when it pops up as it’s ugly, sore & frustrating that it reoccurs.
How long did symptoms last?
Mostly 1-2 weeks.
How did you know it was EH? Was it diagnosed by a medical professional? Has it ever been misdiagnosed as something else?
I had a swab which confirmed it but at first it was misdiagnosed as impetigo and I was given antibiotics instead of the antivirals I needed.
Have you suffered from it on more than one occasion?
Yes! I’ve lost count. I first got it at about 8 months TSW and had it repeatedly in the first couple of years. I’ve had it a couple of times in the last year I think.
How did you treat it?
Antiviral tablets like Acyclovir or a cream with Acyclovir in it like Zovirax. Try not to touch or pick at the sores as it’s very infectious.
Signs to look out for with EH?
Spots that spread in number or size quite quickly (you can go from 1 spot to 4-5 in a matter of hours) that tingle and are painful to touch. The spots may start out as red but go yellow & crusty. It can be dangerous if it gets near the eyes so be careful!
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| *Photos taken with kind permission from her Instagram account (here)* |
What is the condition you used steroids for originally?
Diagnosed with eczema at four.
A brief overview of your steroid/immunosuppressant history.
My steroid background for transparency is that my mum applied steroid creams on me from primary school age and application continued until I was a teenager. I used it on and off through to adulthood with the strength having increased by now. I had a good couple of years break from eczema in 2015 after using protopic for a few months, along with a course of oral steroids. I was referred to a dermatologist and given these 2 medications (for the first time) to “rid my mild childhood eczema that just wasn’t going away”. It obviously came back, and I was prescribed stronger steroid creams which eventually led to TSA symptoms from around autumn 2019. I was prescribed a couple of stronger steroids, unaware of TSW, until March 2020 when it took me 3 months to pluck up the courage to stop using all steroids and begin my TSW journey.
I always had gut issues, with IBS since I was a child, along with mild asthma and hayfever as the trio with eczema. My asthma is pretty non-existent now, my hayfever is better, and IBS doesn’t bother me much at all!
How long have you been going through TSW for?
One year (*now 16 months!).
Did you have eczema herpeticum before going through TSW?
From around the age of 23, I had reoccurring yet sporadic EH (of what I can remember). It was often misdiagnosed as impetigo. I recall an extremely painful appointment where a doctor tried to take a swab of it, the result I can’t remember. Whilst still just seeing a GP, having had no real diagnosis for EH symptoms and getting more frequent flares of it, I ended up googling a lot and finally found eczema herpiticum. I ticked every single symptom on the checklist and felt so relieved yet disappointed I’d found the diagnosis myself. From then on, if I had a flare, I would ring my GP and tell them I had EH and made sure I got antivirals which did work. I now, having had a lot of experience with EH and what I’ve been advised and prescribed for it, manage it with 5% acyclovir coldsore cream.
There were times I remember naively putting steroid cream on it before reading that it can make it worse. I was also shocked and disappointed after having found out about TSW that EH is a sign of steroid overuse. Something I feel my doctors should’ve known amongst the years I’ve been notifying them of all my flares, some of which I wouldn’t have bothered telling them about as I learnt to treat it myself. Looking back, perhaps if I had flagged every single flare they might’ve investigated for me?
What has your experience of EH been like? What symptoms etc.
It can appear anywhere on my neck or face and pops up in different areas each time which can make it quite hard to confirm what it is sometimes. I’ve even recently had it inside my nostril for the first time.
It’s most commonly found on the face and neck however it’s known to appear anywhere on the body.
There is a significant pain difference with EH to eczema. Eczema becomes painful when open, raw or excessively dry, whereas EH makes me wince if I forget about it and itch it. It’s tingly like a coldsore. It is extremely tender, appears in a cluster of small circular blisters and exudes yellow crust so it’s noticeably different as the stages progress.
It’s also very contagious so is likely to spread. I have to be very vigilant when touching it, I wash my hands right away which can be tedious as you can imagine. This is important with how severe it can become, if you google this infection it is described as potentially life threatening if it spreads to large areas of the body.
The irritation with eczema herpiticum is significantly more intense especially because it can tingle.
Having eczema herpiticum is painful, draining and worrisome. Draining due to it being hard to cover at times depending where it is and if you have normal eczema around it, you can easily forget it’s infectious, scratch it, and then have to wash your hands immediately without touching anything else which, obviously with eczema, is tricky to maintain.
How long did symptoms last?
It can differ. I’ve known it to last 3 weeks, 10 days and most recently under 1 week for the whole cycle of appearing, blistering, crusting over and dissipating.
Have you suffered from it on more than one occasion?
Yes, and I’ve noticed from the first time I had it, it does tend to return when I'm run down. It’s usually the sign that confirms I’ve not been feeling great and triggers me to slow down.
How did you treat it?
I’ve only ever tried aciclovir cream which is basically coldsore cream. I’ve never been prescribed anything for it as the doctor didn’t ever diagnose me. Now, if I get in touch with them about it I state it is EH. I did a lot of research myself to find the diagnosis and the aciclovir cream works. Some people take aciclovir tablets and say it clears a lot quicker with orals.
***Note: when pregnant it’s not advised to take the aciclovir tablets during the first trimester.***
Some advice would be to leave it alone, let it crust over, and don’t clean it because it can spread easily and the crust is a good barrier as it needs to scab over. Use the aciclovir cream right away (or oral antivirals) and cover with a plaster if possible to avoid any contact with it and stop it from spreading. You're likely to feel unwell when you have the infection, slightly run down, and your glands are likely to swell so don’t be alarmed, this is normal when fighting infection. If they seem larger than usual, consult your doctor.
Signs to look out for with EH?
At first, your glands may swell and you might feel unwell, then a red clustered rash will form later turning into more significant circular red bumps. It will be very tender and sore to touch. Symptoms can come and go faster than other times, and depending on how quickly the symptoms appear, after a couple of days it will start to crust over. It may take a couple more days to appear yellow which is what highlights the infection. After the crusting stage it should dissipate unless the barrier is knocked off potentially taking longer to heal.
Bethany has also kindly shared some words on her experience of EH during pregnancy.
During my first trimester I had EH more than I didn’t, however it gradually started healing way faster than usual. It would normally take 1-2 weeks to go through all stages and clear up, but further into pregnancy, at times it would scab over far quicker and sometimes without needing medication.
EH is generally dangerous due to how fast it can spread and more dangerous during pregnancy. I was really scared the first few times I kept getting it in pregnancy as it’s a lot of responsibility worrying about another being inside you alongside skin conditions you can’t control very well.
I actually got it on my eyelids, the corner of my eye, as well as on my neck at one point during early pregnancy which was a scary experience as it can cause eye damage. My doctor immediately referred me to an eye hospital where I had a consultation there and then over FaceTime. The consultant was aware of TSW which made me feel better that the medication wouldn’t contain steroids, not that it usually would as it’s antivirals needed to treat EH, but going through TSW you find yourself double checking no steroids are involved in any medicated circumstance.
I was prescribed an acyclovir eye ointment which I had to apply into my eye 5 times a day as the cream I would usually use for my neck and face wasn’t appropriate around your eye. The prescription was actually couriered to me the same day. I’m unsure if it was due to being pregnant and therefore high risk, but I was blown away and really appreciative of the urgent care I received.
I’ve had EH once so far in my third trimester which did spread to another part of my neck, but with the acyclovir cold sore cream I usually use it went away within 10 days.
Overall, EH during pregnancy should be addressed ASAP. I was told that acyclovir tablets aren’t advised during pregnancy, especially early on, however I know others who take them as a preventative and whilst pregnant so it seems to be dependant on the healthcare professional you’re liaising with, but I opted to avoid tablets and just use acyclovir cream as there was no query around safety as opposed to the tablets.
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| *Photos taken with kind permission from her Instagram account (here)* |
What is the condition you used steroids for originally?
Eczema.
A brief overview of your steroid/immunosuppressant history.
I used Elocon (mometasone furate) on and off for about 12 years. I was prescribed Protopic, too, but I don't really remember using it.
How long have you been going through TSW for?
26.5 months.
Did you have eczema herpeticum before going through TSW?
Had EH 12 years before I went through TSW. My face, neck and torso were covered in the blisters. It was insanely itchy and crawly and I kept having nightmares there were mushrooms growing out of my face! My parents had taken me to A&E as we had no clue what was happening and I was given oral aciclovir, antibiotics and fuciden, and was off school for two weeks. I had it again two years later.
What has your experience of EH been like? What symptoms etc.
First itchy dotted red rash that lasts for 1-2 days spreading quickly, then these raise into blisters. About 3-4 days in these break with a yellow fluid and are crusty for a further 3 days before they scab.
How long did symptoms last?
Normally completely healed in 2 weeks.
Have you suffered from it on more than one occasion?
Severely: Two times pre-TSW and one time during TSW. Mildly: I don’t know the number, but I’ll occasionally get a small localised patch that comes and goes in a few days.
How did you treat it?
Oral aciclovir. EH is itchy as hell so I’d recommend using a Q-tip to gently rub the skin around the blisters if you need to itch, but be careful not to touch the blisters as they spread fast. Carry antibac with you and use it on your hands if you accidentally touch it. Change your pillowcase every day. It tends to clear up in a week or two. Since going through TSW I get a cold sore every month and I take L-lysine as soon as I feel the tingle and that does tend to make them less severe so I imagine the same would work for EH.
Signs to look out for with EH?
Dotted red rash that spreads quickly and an itchy, crawly, tingly sensation.
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| *From left to right, top row then bottom row - Pam's skin over a month dealing with (and recovering from) eczema herpeticum* |
What is the condition you used steroids for originally?
Eczema.
A brief overview of your steroid/immunosuppressant history.
Had eczema as a baby and a few patches behind my knees and on my elbows, but essentially grew out of it. In my twenties, while working in a highly stressful job, I got an outbreak of eczema all over my inner arms. Two weeks of Elocon cleared it up and it didn’t come back. Fast forward around 12 years to August 2016 and I started getting eczema patches on my eyelids and collarbone. I saw a dermatologist who prescribed various strengths of steroid creams to apply and wean off over two weeks. My skin would clear and then the eczema would come back when I wasn’t using the creams. SO I would start the treatments again, and my skin would clear, but the eczema would come back again and keep spreading.
April 2017, I decided to go the natural route after researching on eczema blogs and I cut all inflammatory food groups etc, but my skin got worse. I went to Dr Aron who is famous for the Aron Regime (steroid mixed with base moisturiser and antibiotic). He believes eczema is staph that has become out of control on your skin and until you get that under control you won’t heal. You start off applying 4 times a day and wean off over a long time depending on how you respond to the treatment. People can be on this for years. I started using the compound and 2 days in was seeing great improvements, but then everywhere I didn’t have eczema I developed this bad rash. I thought I was allergic to something in the cream, so Dr Aron put me on Prednisone. Skin cleared beautifully.
June 2017, I tried the compound again, and wasn’t reacting to it so kept using it as instructed. I never wanted to be on steroids long-term. I knew eczema could be treated naturally so I went to see a Naturopath. We did tests and found out I had very high candida in my gut, had a very leaky gut and was intolerant to a long list of foods (gluten, dairy, egg white, peanut butter, flax seeds, yeast, corn etc). My body was screaming at me that there was an imbalance and it was coming out through my skin. I was also getting sick every month, couldn’t tolerate a glass of wine, would be so bloated and crampy when I had my period, and was so stressed out with my two young kids. When I ate dairy I would get bumps on the back of my knees and my forehead, but I always thought it was a berry allergy as I had never been allergic to dairy and could only think it was the raspberries affecting me when I had berry cheesecake, berry coulis with camembert or greek yoghurt with raspberries. So I started the protocols for healing these things and cut out what felt like a million foods and thought that as my gut healed I would be able to wean off my creams, but whenever I tried weaning off my skin would rebound so badly. Some days I would wake up with liquid leaking out of the skin on my face, neck and chest, and skin flaking, and I had these red areas on my inner arms that wouldn’t go away. I would need to sleep for a whole day as I was utterly fatigued, but I thought this was maybe a healing crisis and my body detoxing.
October 2017, I saw a new naturopath who did a lot with me to boost my immune system, clear my lymph system, get rid of worms and parasites, and fix my adrenal fatigue. I was still using the steroid creams to manage my skin and again kept wanting to wean off, but never could because I kept experiencing these strange flares which were not like any eczema I had ever had before.
April 2018, after more and more research, and my skin getting more and more unstable with urticaria and these strange flares, I realised I had Topical Steroid Withdrawal. Everything made sense. I had all the symptoms that were described on ITSAN’s website. Somewhere in the past year my body had been triggered into this addiction. I still don’t know if it was the prednisone, topicals, or both. I stopped steroid creams and started the process of withdrawal. I have had periods of relative calm where my skin has cleared, but it has flared so badly every winter since and in summer is unstable, rashy, I have to wear long clothes to cover up my skin and I scratch everyday.
October 2020, after three months of a bad flare again, especially on my face and neck, I developed eczema herpeticum and impetigo all over my face.
How long have you been going through TSW for?
Started April 2018 so 3 years and 3 months (*now 3 years and 6 months!).
Did you have eczema herpeticum before going through TSW?
No. I have had cold sores since I was a child though.
What has your experience of EH been like? What symptoms etc.
I woke up one morning with my face feeling swollen and bumpy. I was already having a bad flare on my face again a few weeks before so my skin had been unstable and I just thought I was regressing again. I developed a bad habit through my withdrawal where I would hit my face with my hands over and over, sometimes for 30-60 mins. It was the only way to touch my face and satisfy the itch and was an escape, an anxiety coping outlet, but completely self-sabotaging. My immune system was obviously low at the time as I had a cold sore on my lip and I think with hitting my face I “spread” the infection or triggered it to a more serious infection being eczema herpeticum. After a day of the bumps starting to spread, and one of my eyes feeling sore, I had a feeling this might be something I hadn’t experienced before. Two days later, I had a headache, my eyes were sore, and the bumps looked definitely like a herpes rash, but I also had this yellow crust on my face so I knew I had a bacterial infection as well which I had never had, and even though my face had oozed many times before, this was different. My mom and husband told me to see a doctor as they were so worried about me. Luckily I have a friend who went though TSW in 2013 and her husband is a general practitioner and he prescribed me antivirals and an antibiotic which I started immediately. I was so tired so would sleep a lot, hibernate in a dark room, and try not to touch my face. It was a scary and hellish time. I looked like a monster. Definitely my biggest low during withdrawal.
How long did symptoms last?
Two weeks. By the end of two weeks most of my scabs had fallen off. I was just left with scars from the scabs, but all of those have healed over.
Have you suffered from it on more than one occasion?
No, thankfully not. I started taking L-lysine as soon as I finished the antivirals and antibiotic. I take L-lysine to prevent cold sores as well.
How did you treat it?
Antivirals and antibiotic. I usually try to go as natural as possible in terms of treatments, but for EH you need to take the drugs that work quickly and effectively. I would bath every other day in a bleach bath submerging my face. On alternate days I would shower and just let the water run over my face. When my face had air dried I would use tweezers to take off crusts that were able to be lifted. I washed my linen every day and sanitised the room and bathroom I was using at my parents house.
Signs to look out for with EH?
Definitely headaches, sore eyes, swelling and bumps that itch and spread.
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| Photos of Georgie as her eczema herpeticum was healing. |
What is the condition you used steroids for originally?
Eczema, which started around puberty and ranged from mild to severe – mostly severe as I've had to use a mixture of oral and topical steroids in the past.
A brief overview of your steroid/immunosuppressant history.
I started using topical steroids and a doctor recommended moisturisers at around age 16. They would obviously help clear up the inflammation at the time, but as time went on, I was being prescribed stronger topicals and then eventually oral steroids as well as antibiotics, too, to treat reoccurring infections.
How long have you been going through TSW for?
I've been steroid free and going through withdrawal symptoms for 401 days today! (*as of 21st July 2021).
Did you have eczema herpeticum before going through TSW?
Yeah so my eczema herpeticum outbreak was probably unfortunately the catalyst for realising how harmful steroids were!
In February 2020, I had my first herpeticum outbreak. I had been stupidly kissing my partner when he had a cold sore and my eczema was bad around my lips and it was as easy as that!
I went undiagnosed for quite a while because I just didn't know what was happening to my body. I had been struggling with reoccuring infections and major inflammation with my regular eczema as it was and I just felt so defeated. I was pretty much at septic level when I got admitted to the hospital and I spent two weeks being treated in hospital with antivirals, antibiotics and very strong topicals as well as eye drops because I had a few herpeticum spots on my eyeballs, too.
What has your experience of EH been like? What symptoms etc.
If you can imagine what a cold sore feels like, but all over your body, that's what herpetcum was like haha. Because it went un-diagnosed for quite a while the spots had spread literally all over my body and the pain was just indescribable. They were all inside and around my mouth, too, so I hadn't eaten proper food for a few days before I was admitted to hospital. It was just horrible. My local hospital didn't actually know what to do with me as they hadn't seen it before so I spent 4 days with them just on fluids and antibiotics before they transferred me to The Royal Melbourne Hospital in the city and their team of dermatologists helped and diagnosed me.
So once it was diagnosed as eczema herpeticum and the antivirals had done their job I was given a very strong steroid treatment plan when I left the hospital.
I have pictures from the last few days in hospital but unfortunately I don't have any pictures of the actual outbreak before some healing had happened.
How long did symptoms last?
I'd say once I started the antivirals the herpeticum spots started to subside quite quickly (within a week) and then it was just the inflammation underneath that remained.
Have you suffered from it on more than one occasion?
I had two separate outbreaks after the hospital admission, but they were swiftly treated with antivirals and it was said that could be expected as the virus might still have been active in my system.
Additionally, Georgie said: I think it was only a couple of months after that trip to the hospital for the herpeticum that I realised that the steroids just weren't doing their job anymore as I was still in so much pain and experiencing extreme irritation, swelling and oozing. I did my research and waited till I felt ready and then threw out all of my steroids and creams! I did No Moisture Therapy for the first few months, which I think did help initially and now I'm just plodding along after over a year of no steroids!
How did you treat it?
Antivirals.
Signs to look out for with EH?
I was able to identify the herpeticum spots quite quickly which came up on my chest and my stomach.
What is the condition you used steroids for originally?
Eczema.
A brief overview of your steroid/immunosuppressant history.
I have used topical steroids since I was 10. I am now 60!
I have regularly used topical steroids since 1970. I have been prescribed oral steroids maybe once a year or every other year since then. I have received about 5 steroid injections for my skin and one in my knee because of an injury.
How long have you been going through TSW for?
In October it will be 5 years since I stopped all steroids.
Did you have eczema herpeticum before going through TSW?
I have always gotten cold sores and one time before TSW when my eczema was bad I got a cold sore and it spread until I had about 100 of them all over my face. Since then, if I get a cold sore it usually spreads. Since TSW, every time I get a cold sore it takes off because my skin is open.
What has your experience of EH been like? What symptoms etc.
It has been hell. The sores itch, burn, and cause nerve pain. I have used a prescription medication for EH, but since TSW the meds don’t work on me, so I have had to find natural remedies.
How long did symptoms last?
It usually takes about 14 days to completely clear. If I catch it right away and take mega doses of L-lysine they will clear in about 5 days.
Have you suffered from it on more than one occasion?
I have had EH many times since I started TSW.
How did you treat it?
I use L-lysine and essential oils. Before it stopped working I used a prescription, Zovirax.
Signs to look out for with EH?
It starts with something that looks like a pimple. It is tingly and can be itchy. It will either get bigger or in my case, spread into more sores.
Mild eczema.
A brief overview of your steroid/immunosuppressant history.
I had mild eczema as a baby on my arms and legs which was managed with emollient creams. I moved house as a child and came into contact with new allergens (pets, carpets and dust mites) causing an eczema flare. I was prescribed steroid creams of increasing strength from ages 8-10. In those two years my skin was already addicted to steroids, but I didn’t know it at the time. I was then prescribed protopic as a ‘safer alternative’ to steroids for over 10 years. I ended up back on steroids for about 5 years as an adult to manage what I thought was severe eczema that had spread to my face and neck (but was actually TSW).
How long have you been going through TSW for?
I am 4 months into my second attempt at TSW. My first attempt lasted just 6 weeks before I ended up in hospital and had to go back on steroids (*now nearly 9 months!).
Did you have eczema herpeticum before going through TSW?
I never had eczema herpeticum (EH) before TSW. However, I did suffer from recurrent impetigo (staph infections). I didn’t realise it at the time but one of the side effects of protopic is an increased risk for skin infections due to damage of the skin barrier.
What has your experience of EH been like? What symptoms etc.
My first encounter with EH was the most severe due to the delay in treatment which led to it spreading over my entire face, eyes and neck. It began as a few fluid-filled blisters on my face and chin. The blisters were extremally itchy and oozed when they burst. I had originally seen my dermatologist and mentioned I thought I had EH and impetigo. She dismissed the idea that I had EH and I started a course of antibiotics for impetigo. While my impetigo started clearing, the blisters were spreading rapidly on my face. I was sure I had EH and went to the hospital. They refused to test me for EH and told me it was just a bad eczema flare, wrote me a prescription for steroids and sent me home. I felt really unwell at home, had chills and my lymph nodes were swollen so I went to a different hospital and finally was given antivirals. Unfortunately, I was given the wrong dose of antivirals by the hospital so it didn’t clear properly. The whole experience was very traumatising, and I have still yet to fully recover.
How long did symptoms last?
After one week on antivirals all the EH lesions on my face and neck had fully healed.
Have you suffered from it on more than one occasion?
Yes, since getting EH in May 2021, I have had constant outbreaks and haven’t been able to get it under control. It has spread to different areas of my body and I’ve been on six rounds of antivirals over the past 2 months which isn’t good long-term for my kidneys.
How did you treat it?
Unfortunately, EH can’t be fully treated. Antivirals can manage the current outbreak, but the virus will remain dormant in your system and can reactivate. EH is highly contagious and easily spread when scratching. As a preventative measure, I’ve started taking lysine supplements to help stop my body from absorbing arginine, an amino acid required by the virus to grow. I also drink lemon balm tea daily and take olive leaf supplements which are both to boost my immune system. I am also making an effort to wash my hands regularly, cover any EH lesions and daily washing of towels, bedding and clothes etc to try and prevent the spread. Most importantly, I try to avoid contact with people that have cold sores. ***Since sending me the answers a few months ago, Alex has also told me that she has been looking into more natural remedies, including reishi mushrooms that have been used to treat herpes infections.***
Signs to look out for with EH?
Clusters of small, painful and itchy fluid-filled blisters. The blisters all look similar and ooze when they break open and then the lesions crust over. It is also associated with a general feeling of unwell, a fever, chills, and swollen lymph glands.
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| *Ruth's photos are not taken from when it was at its worst and in calmer/healing phases. Middle photo of how it looks when eczema herpeticum starts to heal* |
What is the condition you used steroids for originally?
Childhood eczema.
A brief overview of your steroid/immunosuppressant history.
Started on hydrocortisone in early childhood, not 100% sure exactly what age. Progressed up to Eumovate, Betnovate, Locoid and eventually Elocon which was sold as less damaging to skin than other topical steroids and safe for use on my face. Also Betacap for my scalp and oral steroids periodically for bad breakouts and asthma.
How long have you been going through TSW for?
Since Jan 2019. Approx 2.5 years (*now nearly 3 years!).
Did you have eczema herpeticum before going through TSW?
Yes, once. The doctor told me it was just eczema and that I needed to moisturise more so I slapped on the emollient and ended up spreading it to my eyes, half my face, neck and forehead. Horrendous. No pictures of this.
What has your experience of EH been like? What symptoms etc.
Initially hot, itchy bumps like hives, but not quite the same. Really painful, like cold sores so that you can hardly bear any contact. Absolute agony when it's growing, like nerve pain of the worst kind. Made me cry the last time it was so painful. Ice helped with the pain. Then it settles into the lumps for a week perhaps and then crusts over leaving tiny red pin prick scars which eventually heal.
How long did symptoms last?
Anything from 1-2 weeks to 3-4 weeks on my worst bout.
Have you suffered from it on more than one occasion?
I think I've been having minor flares of it throughout TSW but it seems to heal faster. Proper full on bouts of it 4 times. 2 during TSW and the 1st of those I think triggered by going on methotrexate as it happened a few weeks into using it.
How did you treat it?
Ice for pain. Painkillers during first agony stages. Doctors never prescribed medication as you really need to take it before it breaks out, although one time when I did get acyclovir I'm not sure it sped up healing to the times when nothing was prescribed. I just put neat tea tree oil onto the sores and aloe vera. Also lyonsleaf zinc and calendula as it began to heal. Tried to leave it alone mostly. Did wash with warm water and a flannel which I washed each time. It's very contagious so wash your hands if you do touch the sores.
It is also very dangerous if it gets into your eyes so if the sores are around the eyes always seek medical advice. They don't have much to help though as I feel the antiviral acicolovir isn't that effective. Also took L-lysine capsules as this should prevent the virus growing. Also took lots of things to boost my immune system like Echinacea.
Signs to look out for with EH?
Tingling, hot burning, itchy lumps, kind of like hives but larger. Also often feel very run down and can feel quite unwell alongside the skin symptoms. Important to rest and get as much sleep as possible.
It's also very contagious so if you live with others, separate towels. Be strict with this.
Eczema (topical and oral steroids)/asthma (steroid inhalers)/rhinitis and allergies (steroid nasal spray).
A brief overview of your steroid/immunosuppressant history.
Topical steroid use from early age (aged 6 when diagnosed with eczema) to age 30 when TSW started in September 2017. I used Hydrocortisone, Eumovate, Betnovate, Fucidin H - all used regularly from head to toe, as prescribed, including scalp treatment. When Eczema worsened in my twenties, I was prescribed stronger steroids, such as two courses of Prednisolone (oral steroids), steroid (brown) inhalers for worsening asthma and steroid nasal sprays for rhinitis (constant nasal drip) and allergies (I was probably going through TSA at this point). During a week long hospital stay etc, I was offered long term Methotrexate and Protopic in 2017 but refused (thank God!).
How long have you been going through TSW for?
4 years, 2 months.
Did you have eczema herpeticum before going through TSW?
Yes, though it was always misdiagnosed and mistreated as Impetigo. I’ve even had a doctor misdiagnose it as acne before, which I have never had a day in my life!
What has your experience of EH been like? What symptoms etc.
I’ve mostly experienced it on my face, but there have also been occasions when it has spread to my neck, round my eyes (scary and very dangerous if left untreated) ears, scalp, shoulders, back, arms and chest. It feels like an ache under the skin at first and causes your lymph nodes to rise, and you generally feel unwell/run down, then spots appear that itch and hurt, then become blisters that crust over etc. They spread very easily, and you can sometimes spread the virus before knowing it’s EH.
The spots hurt differently to Eczema/TSW skin when water is applied to them in the shower etc, so this is usually a test for me to see if it is EH when I first suspect it. When I’ve had EH, I usually feel unwell and lethargic, as if every bit of energy I have is going towards ridding my body of it. As well as the physical implications of EH, the mental ones have been just as bad - I still get vivid flashbacks of having it, as it is so traumatic to go through, and the experience heightened my anxiety and fear of getting it again.
How long did symptoms last?
Usually 2-3 weeks, but sometimes longer if it continues to spread.
Have you suffered from it on more than one occasion?
Yes, I remember having it once or twice when I was younger (though this might have been impetigo?!), but had a really bad bought of it in 2011 where it started around my jawline and caused excessive swelling where my neck blended into my jaw (scary) and it spread down my arms. I think 2011 was when my Eczema really worsened and I was probably having TSA symptoms. I have experienced EH most years since then, and some years it happens a handful of times throughout the year.
How did you treat it?
Through misdiagnosis, I was given regular treatments of Flucluxicillin and Amoxocillin antibiotics (sometimes together) up until 2019, and after 2-3 weeks it would start to get better. I was also given fucidin cream to apply to my face at one point! Since discovering there is such a thing as EH, I have since been treated with a course of Aciclovir tablets (reluctantly prescribed by my doctor who had not heard of EH) last year, and it cleared it up a lot quicker. I have also taken some Homeopathic remedies and applied Zovirax at the onset of a cold sore. I also take a course of 4 drops of oregano oil supplement mixed with a tablespoon of olive oil once a day to help fight infection, as a support. Still looking for more natural alternatives that work for me!
Signs to look out for with EH?
Feeling unwell/run down, localised aches under the skin, red spots appearing on skin, spots feeling different or painful under water (sensation not like a usual skin complaint), spots becoming fluid-filled blisters that eventually crust over, appearing in clusters and spreading rapidly.
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Thank you so much to the eleven wonderful women who have given so much information and photos from an experience that must have been deeply harrowing, which will then help others not feel so alone. Working on posts which involve others in the community has truly been one of the most heartening experiences of my life – the kindness and willingness to help others during TSW has floored me and I feel so incredibly lucky to be part of it.
Sending you all my love,
Cara x
Other posts in the series:
Let’s Talk About: TSW & The Genitals (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)
Let's Talk About: Pregnancy (here)