When I say this post has been a long time coming, I mean it – about twenty years to be exact. That was when I was first introduced to this topical immunosuppressant as a young teenager. This post is by far the largest I have ever shared in my six and a half years of blogging about TSW, because a lot desperately needs to be said. But first, I want to share a disclaimer of sorts because I am not going into this with neutral feelings on Protopic, and so it is hard for me to remain objective after seeing what Protopic has done, and continues to do, to those who end up using it.
I would also like to add three additional disclaimers:
- I am not a medical professional and anything shared in this post should not be taken as medical advice.
- This post is not intended to scaremonger, but simply to share experiences and information I wish I'd known before using it. As our iatrogenic condition continues to be ignored, and those who should be compiling all this information, aren't, we have to take matters into our own hands and do it ourselves.
- 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.
This post is broken up into sections – I want to start with some background on the drug, exactly what it is, its origins, and share some facts on it from the published information available to us at this time, then share my own experience of using it before sharing thirty other experiences from people in our beautiful skin community.
I hope you find it informative, but read with caution as the experiences (and honestly, just learning about the background of this drug) might be triggering for some.
Protopic is an ointment which contains the active ingredient, Tacrolimus (0.1% and 0.03%). 0.1% can only be used on those over 16 years of age, whereas 0.03% can be used on children as young as two. Both by prescription only.
***Side note: active ingredients are essentially the chemicals responsible for how/why a drug works. The active component of a drug is called the active ingredient.***
So what is this active ingredient, Tacrolimus? Tacrolimus is an immunosuppressive drug which is most commonly used to lower the risk of organ rejection. You may have heard of the links between Tacrolimus and the calcineurin inhibitor, Ciclosporin, because they share similar immunosuppressant properties, but Tacrolimus is much more potent (about 100 times more). This means that Tacrolimus is favoured in organ transplants as the risk of rejection is lower (it's also cheaper, too). Conversely, when Tacrolimus is used in Protopic, it becomes the weaker topical version of Ciclosporin.
Tacrolimus was discovered in 1987 from the 'fermentation broth of a Japanese soil sample that contained the bacterium, Streptomyces tsukubaensis'. To be more specific, the Japanse soil sample came from Mount Tsukuba, a 877 metre mountain located near Tsukuba, Japan, so if you ever got the whole 'Protopic comes off a Japanese mountain' spiel like myself and thousands of others have, turns out it is *technically* true ... but let's also take a moment to appreciate that someone didn't just dig into the soil of a mountain and put it in a tube that we squirted onto our skin. That's what they'd like us to imagine when we're slapping it on, but the reality of this drug is something else entirely.
Tacrolimus was first approved by the US Food and Drug Administration (FDA) in 1994 for use in liver transplantation before it was approved for medical use in the European Union in 2002 for the treatment of moderate to severe atopic dermatitis. Only three years later, in March 2005, both Protopic and Elidel were given a black box warning by the FDA due to their possible cancer risk (skin and lymphoma).
Protopic is a member of a class of drugs known as topical calcineurin inhibitors. Broken down, this means that they play around with your immune system in order to reduce inflammation. There are two types: the first is Protopic (0.03% and 0.1%) and the other is Pimecrolimus (also known as Elidel, which I will be discussing in my next post, along with Eucrisa). Protopic, Elidel and Eucrisa work very similarly and, as a result, the side effects are usually very similar, too.
The general consensus is that Protopic can be used for short-term and intermittent long-term treatment of atopic dermatitis, but it should not be used continuously on a long-term basis. The current advice states that Protopic treatment should begin as soon as symptoms appear, with each affected area being treated twice a day until the skin is clear.
The most common known side effects of Protopic in medical literature are listed as (at the skin application site):
- Stinging
- Burning
- Itching
They say that these side effects are usually mild to moderate, which only last a few days and go as your skin calms down.
Other known side effects include: acne, swollen or infected hair follicles, headache, increased sensitivity to hot and cold temperatures, flu-like symptoms (e.g. the common cold and stuffy nose), skin tingling, upset stomach, muscle pain, swollen glands (enlarged lymph nodes), or skin infections including cold sores, chicken pox or shingles.
While you are using Protopic, you may also find that your skin flushes or feels red and hot after drinking alcohol.
I am going to be sharing the side effects that the medical guidebooks and journals aren't printing yet – and it is yet, because as this drug becomes more widely used, as medical professionals desperately try to find something to prescribe that isn't a topical steroid, we are going to see an increase in other medication like Protopic being used that come with side effects they aren't talking about.
So now we've got all of that out of the way, let's talk about Protopic.
*1. Brief overview of your steroid/immunosuppressant use.
After developing a rash on my wrist at 6 months old, I was diagnosed with 'Eczema' and prescribed Hydrocortisone (0.5%). After using the mild topical steroid, the small rash spread to other areas of my body. Saying that, I don't believe I developed Topical Steroid Addiction then, but I do believe that the minimal Hydrocortisone I used as a baby triggered my rash to spread. Thankfully, my mum was very cautious and I didn't really use steroids much as a child, and even though I definitely had flare-ups, it actually seemed like I'd grown out of my 'Eczema' at around 7/8 years old ... until I went to secondary school and my 'Eczema' came back badly (I believe stress was the main trigger). Around 12, I was referred to the hospital because of my skin and saw countless dermatologists there. One in particular, who is the star of my skin show, really took an interest in my health and under his 'care', that is when I believe I developed Topical Steroid Addiction (but from medication that isn't topical steroids).
His approach was aggressive and he wanted me to use strong steroids to 'manage' my 'Eczema', but as my mum was very reluctant to use them on me, he prescribed a course of the oral steroid, Prednisone, when I was about 15. I was already using Protopic at the time (which I'd been using since late 2001 – prescribed initially by another dermatologist who was pretty insistent I used it, before the main dermatologist took over my care and increased my Protopic use) and I believe, looking back, it was a combination of the oral steroid and Protopic that I used which meant I ended up having to go through TSW. Saying that, after looking at my hospital records more closely this week, and seeing the overload of Protopic I was using leading up to taking the oral steroids at 15, it's looking more likely that Protopic is to blame.
After I'd used Protopic for a number of years and had taken the course of oral steroids, I couldn't function at all without some kind of medication and according to my notes at the hospital I appeared to be using a cocktail of stronger topical steroids. At that point, I knew using such strong medication wasn't a good idea and I remember 'weaning' myself down until I was 'only' using Eumovate (OTC - 1%) etc twice a day, every day on my chin and hands/wrists. I don't really know why, but if I just used the medication there, I was able to control my entire body. A few years before going through TSW, I was again able to wean myself down to Hydrocortisone (OTC - 1%), using it again only on my chin and hands/wrists.
Sorry I've repeatedly put 'Eczema' in inverted commas, but I am now very skeptical that Eczema even exists and it is instead a plethora of different skin conditions, along with contact dermatitis and allergic reactions. I am pretty fed up with this one size fits all treatment approach to 'Eczema' when it should be tailored to individuals and focussed on finding reasons and triggers for the way the skin is reacting and not plasters/band aids. Going back on myself slightly, I developed the initial rash as a baby after I transferred from breast milk to cow's milk, and I have found this is very common. Why doctors can't see this link and think, 'oh, hang on a minute, maybe it's the shock to a baby's system that's causing the skin to react and not necessarily a skin condition ...'
The current treatment of 'Eczema' needs to be thrown in the bin and we need to go back to basics and common sense.
2. When did you use Protopic?
According to some very confusing hospital records, it appears that I was using Protopic from around 2001 to maybe 2004/2005.
Around 13/14, when I was seen by the aforementioned dermatologist at the hospital, he was featured in a lot of newspapers about the wonder drug that is Protopic. Children and young adults in particular were having their lives transformed by this seemingly 'herbal' cream. He told my mum and I that it came off a Japanese mountain and as a girl, who had no idea this actually meant immunosuppressant with an active ingredient that is used in organ transplants, I was happy to use it. My mum was still not happy, but I don't think anyone who hasn't been to a dermatologist will understand just how worn down you can get by the gaslighting of a medical professional – there was the repeated insinuation that we weren't doing enough to help my skin. It gets to you. My mum even said at one point, 'my daughter is being bullied at school, she doesn't need to be bullied by a dermatologist'.
3. How much Protopic did you use?
After looking at my very confused notes and letters from the hospital when I was seeing the dermatologist, in October 2002 he wrote a letter to my GP that said I should use 60g a month – in August 2003, in another letter to my GP, that same dermatologist said I should use 30g a day.
According to my notes, it seems like I used Protopic all over my body – but what the notes don't show is the reality of what I used (and my mum who was very cautious with all this immunosuppressive medication), so whilst the amount stated above looks horrifying (and simply medical negligence – who in their right mind would ever think that 30g of medication a day is acceptable?!), I don't believe I actually used as much as that ... but I can't get away from the fact that I used a hell of a lot of it over a fair few years. A lot of my notes are barely legible, chaotic and confused, and I feel like I need someone like Alan Turing to help me decipher them. I will at some point, it just takes a lot from me mentally every time I look at them.
4. Did you use Protopic during TSW?
No. To be honest, even with TSW alluding to only being a withdrawal from topical steroids, it didn't even occur to me that Protopic would be an option as I always looked at any medication which suppressed my 'Eczema' as the same thing. In a way, I feel lucky that I used Protopic so young, and briefly again in my 20s, so I knew what it was capable of. Also, by the time TSW rolled around, I was fed up with of the lot of it. Years upon desperate years of trying to manage my 'Eczema' with this stuff and I was done with it.
It was also lucky that when I went through TSW there wasn't all this noise and information that there is now, and so for the most part I was able to trust and follow my gut.
5. Did you use Protopic just before going into TSW?
No. After my teens, I used it again in my early twenties (maybe around 21) very briefly, but I hated the feeling of it on my skin ... the burning ... the beetroot flush after drinking, and the herbal smell that never seemed to fully sink in and go away (almost smelled like my skin had gone stale), so I switched back to using my old pal, Eumovate (OTC), before switching to Hydrocortisone (OTC - 1%), which is the topical steroid I used just before going into TSW.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
I don't believe it has affected my withdrawal or recovery per se, but I have freckles (they are actually written in my hospital notes as lentigines - liver spots) to this day which are as a direct result of using Protopic in my teens (see photos above taken this morning). I am a redhead, so I am definitely prone to freckles and burning, but in my teens, when I was using Protopic and told to cover up, that is when I got them. Also, due to my Trichotillomania (hair pulling disorder), I have always covered my legs as a result of the marks, but regardless, I have a cluster of liver spots around my knees as if I've been worshipping the sun for years. I have identical clusters around my arm creases and on the sides of my neck, too. I used Protopic before it came with a black box warning – and now, I realise, even before it was approved for use in the EU.
Also, after speaking to a wonderful woman called Nazmi (@tsw.naz), who is part of this post, she discussed developing photosensitivity as a result of using Protopic. I have discussed before that I developed photosensitivity around 1/2 years before I eventually went through withdrawal, and I am wondering now if it wasn't the steroids that did it, and instead, my Protopic use. But we'll never know now for sure.
To end on a positive note, I am totally fine in the sun now and only get mild hives if it gets super hot over a significant period of time.
7. If you could go back, would you use Protopic?
NOT IN A MILLION YEARS ... but then again, I was a scared teenage girl who simply trusted her dermatologist, and in my twenties I was just desperate to stop using steroids and had no clue I had any other choice. I was told I had 'worsening eczema' and my only hope to 'manage' it was medication.
8. Thoughts on Protopic and your experience of using it.
I don't think anyone who hasn't gone through something similar will understand the desperation that comes with trying to find something to 'manage' your 'Eczema'. Even after knowing that Protopic gave me liver spots when I used it in my teens, and the awful burning sensation I felt when I came into contact with water, I STILL used it again because I was desperate not to use steroids and felt like I didn't have a choice. I felt completely trapped by all this medication and stuck in a vicious cycle. People will end up using Protopic, which they know is bad for them, because we have all been put in a position that no one should ever have to be in, and so we reach for (what we think is) the lesser of other evils because we have been let down as a result of not being made aware of the dangers of medication we used for our skin.
Last year, I was quite devastated to find out that the dermatologist I saw in my teens, around the time that I saw him, was very prominent in the development of Protopic trials and conducted research on his patients who were between the ages of 11 and 13 (I was around that age bracket at the time I saw him). There is a very large chance that i was essentially used as his unwitting guinea pig, which all starts to make sense when I look at some of the notes from the hospital at the time ... and also a memory of him taking so much blood from me at one appointment that my body felt strange and I could barely walk. Even to this day whenever I see something that is gory or makes me feel uncomfortable, I get the same feeling in my feet as I did back then.
That dermatologist is now as successful as you can probably get in the field of dermatology – respected, his own practice in an exclusive part of London, travels the world giving lectures on skin, a professor ... but as someone who has directly suffered as a result of his treatment, I cannot begin to comprehend how many other people have suffered, too, because of him. This is why I am against medical professionals financially benefitting from a specific drug because it will create bias where there should NEVER be a bias.
Saying all that, whilst I am very hurt and angry by how my dermatologist treated me, and for the part he played in me having to go through TSW, naming him is not going to get us anywhere because he is unfortunately just symptomatic of the culture in dermatology. He is ten a penny. We see it now, but due to the increase in social media dermatologist influencers and derms wanting to go viral, it's just going to get worse unless something is done, and fast.
Topical hydrocortisone (mild, and then moderate strength) on and off for 15 years, and then switched over to Protopic on its own for 10 years. I also used nasal steroid sprays for what I thought was hay fever (which disappeared once I started TSW).
Both my parents are medical doctors, and are fully aware of how to use medications correctly – so this is not an example of ‘patient misuse/abuse of the drugs’.
2. When did you use Protopic?
I was 16 years old, my doctors took me off topical steroids after it appeared as though I had an ‘allergic reaction’ to them, or to an ingredient mixed in with them. This allergic reaction was in fact TSW, but we were unaware of it at the time.
3. How much Protopic did you use?
I was told never to use it long term, but each time I went back to the doctor to check my skin, they kept prescribing more of it. This continued for 10 years until I decided myself that I didn’t want to continue taking it as my skin was getting worse between Protopic applications and I was getting lots of new and strange symptoms that I never had before. I also did not want to keep using something that had a black box warning for cancer, and I knew that for future pregnancy I would have to stop using it, so I decided to try and solve my ‘eczema’ at the root cause without these medications.
4. Did you use Protopic during TSW?
No, I actually didn’t know what TSW was until I’d been off the Protopic completely for a few months. I didn’t even know you could go through TSW after not having used topical steroids for 10 years, and only using Protopic in that time.
5. Did you use Protopic just before going into TSW?
Yes, for the 10 years that I was using Protopic, I thought it was keeping my ‘eczema’ under control. However, my ‘eczema’ looked and acted very differently when I was on Protopic; I started to have issues with hypersensitivity to some fabrics and heat, I had large spreading dark patches of skin, and I got hyperhidrosis (excessive sweating). I also felt very unwell during the times that I did not apply Protopic, which were usually on the weekends.
The hyperhidrosis was getting increasingly worse in my final year of using Protopic, and completely disappeared once I stopped using it. And something else to note is that during my time in TSW away from all medications, the prescription for my eyesight improved twice, to where I now no longer need glasses (except for driving as I’m only slightly short-sighted). My optometrist was confused because she said this never happens!
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
Definitely. It took me 13-18 months after stopping Protopic to see the classical TSW symptoms of widespread redness, burning, swelling and oozing. In my first year of TSW I mainly had the nerve-related issues, so I knew that something was wrong and it wasn’t just eczema. But I was still working, going to the gym, seeing my friends, travelling, socialising and attending parties. I actually thought I was quite lucky and having a mild withdrawal compared to what I’d seen in other people.
But then in my second and third year, that’s when everything erupted. I had to leave my job, I was bedbound for months, then housebound for a couple of years. I had every single TSW symptom, at full severity, and I realised I was just a very slow burner. I do believe that the lingering effects of Protopic meant that it took my body a long while to work up to the worst of my symptoms. My doctor (a consultant dermatologist) diagnosed me with Topical Steroid Withdrawal, despite not having touched topical steroids for more than a decade at that point. It’s clear that long term Protopic use resulted in a longer, more severe and slower withdrawal and recovery. I am now coming up to 4 years and 9 months into TSW, and have just recovered from a nasty winter flare at 4.5 years that caught me off guard (as I escaped the winter flare last year).
7. If you could go back, would you use Protopic?
Absolutely not.
8. Thoughts on Protopic and your experience of using it.
I will point out that while I was on Protopic, I was able to finish my education, travel, live a normal life. I am happy that I had those experiences, but it disturbs me how much Protopic can make everything seem like there is no problem. I had no idea that TSW was waiting for me, especially as my original eczema was so negligible and never affected my life.
I spent the first year of withdrawal in the worst anxiety about whether or not I had cancer, as Protopic has a black box warning for causing lymphoma, and my lymph nodes were very swollen and tender. It didn’t help that I couldn’t find any information about Protopic and TSW on any websites that discussed TSW at the time, and that I only had about half the typical symptoms. I was also extremely worried about the deep hyperpigmentation, as I didn’t know whether or not it was scarring – and again, due to lack of representation on TSW websites I had to just wait and find out for myself. It was only when I started to get the more typical TSW symptoms later on that I knew it couldn’t be anything except TSW.
It scares me that it’s pushed as such a safe alternative to steroids, when I genuinely feel that it is so much worse. What is even more frightening is the fact that now TSW awareness is slowly reaching people and doctors, topical steroids are being replaced a lot quicker with Protopic and other medications – all of which have caused significant complications for the people who have used them and come with increasingly more dangerous risks and side effects.
My doctor said Protopic was extracted from bacteria in the soil of Japanese mountains, and that it can be used on the face and on babies. This made it seem as safe and natural as a clay face mask. He brushed off the black box warning for cancer as something that never happens, and was only listed for medico-legal purposes. He did not tell me that I was using a weak version of Cyclosporine, which I was shocked to find out only after I had used it for years.
He also did not tell me about the awful burning that I would experience when I first used it. I ran to wash it off in the shower, which only made the burning worse. When I told him about this, he said “yes, that can happen, but if I told you beforehand that it would sting, you probably wouldn’t have used it”. I said I wouldn’t use it again as the burning was too much, but he just told me that I needed to “push past the burn”. He said it would take about 5 days for the burning sensation to subside, and that I should continue to use it once or twice a week for ‘maintenance’, and to keep the burning at bay. If I ever had an ‘eczema flare’, he said to use it twice a day for a week or two, and then go back to the maintenance dose. Surely enough, whenever I tried to break free from using it, and then later went back to it as my skin got worse, it burned all over again. If I used it continuously as he told me to, then it didn’t burn. So I was stuck using it. I’ve since discovered that studies show the reason it burns is because it produces the same physiological response as rubbing capsaicin (the active component in chilli peppers) into your skin. No wonder the shower made it worse.
After my experience, and seeing what thousands of other people have gone through because of these medications, I see that we are living through another example of how something used in medicine will (hopefully) go on to be banned after discovering that not only was it not helping, but it was in fact worsening the original issue and adding devastating consequences of its own. Previous examples of this include things like when doctors used to prescribe “smoking fresh cigarettes to cure asthma”, thalidomide for pregnant women, and radium.
For what started out as a tiny rash as a baby, which didn’t affect me, I cannot find any reasonable explanation for why steroids and then Protopic were pushed on me as much as they were. I would gladly have lived with the original tiny rash, which I most likely would have grown out of anyway.
Aged 7 on Hydrocortisone. Aged 12 on Betnovate. Aged 18 on Elocon. Aged 23 on Protopic for a year. Aged 25 I started TSW. Had a 2 year break when I was 16-18 where I believe I went through TSW but the dermatologist put me back on steroids :)
2. When did you use Protopic?
For a year and a bit aged 23 when my face started getting out of control.
3. How much Protopic did you use?
Not even 1 tube – half a pea size mixed with my face moisturiser once a day for 5 days, every couple of weeks or so.
4. Did you use Protopic during TSW?
No.
5. Did you use Protopic just before going into TSW?
Yes.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
My body where I used steroids has been 90% healed since October 2020 but my face where I used Protopic has suffered immensely and is still flaring now.
7. If you could go back, would you use Protopic?
Absolutely not - I was showing TSW symptoms and my derm just didn't recognise them.
8. Thoughts on Protopic and your experience of using it.
I am deeply disturbed by the effects of Protopic in hindsight - during the year I was using it I developed asthma, stomach problems, became intolerant to gluten and had severe anxiety in simple situations like meetings at work or in any situation I felt I couldn’t leave easily like the cinema or presentations. I had shingles on my face 3 times within 3 months which ultimately resulted in a serious infection. My skin barrier was ruined. If I had continued using it I would genuinely fear for the state of my health in the future. I really worry that this medication is seen as a good alternative to steroids and think much, much more research should be done on it.
1. Brief overview of your steroid/immunosuppressant use.
At age 5 I was diagnosed with eczema. I have used steroid creams on and off from 5 years old till about age 35 (30 years). I didn't use anything crazy strong and not for long periods. From ages 35-39, I didn't have to use topical creams for my eczema at all. I also was diagnosed with Crohn's disease, an autoimmune disease, at age 17 and for about 15 years I was on and off oral steroids for the autoimmune disease during flare ups from time to time. Never used Protopic at that point.
2. When did you use Protopic?
At age 39, I was having an allergic reaction to something unknown for a good few weeks on the skin around my eyes and upper lip. I went to the dermatologist who prescribed me Protopic. She said it was very safe and to use it as long as I needed to.
3. How much Protopic did you use?
I used Protopic around my eyes and upper lip for about 6-8 weeks.
4. Did you use Protopic during TSW?
I did not use Protopic when I started TSW or during TSW (Protopic is what caused me to go into TSW).
5. Did you use Protopic just before going into TSW?
Yes, as started in #4 – I used Protopic for 6-8 weeks then fully stopped using Protopic and went into full TSW.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
YES! It CAUSED my withdrawal!
7. If you could go back, would you use Protopic?
NOOOOOOO! Protopic changed my life for the worst and I would never ever ever ever use that poison again. I tell people in my world never to use it.
8. Thoughts on Protopic and your experience of using it.
This has been an extremely emotional experience and trauma in my life. Protopic took my life away for years. I started my withdrawal in 2012. When I started to taper down on using Protopic, the redness and rashes started spreading down to my cheeks and neck then down to my under arms. I realized that the medicine was making me worse. Before stopping Protopic fully, I posted in my autoimmune disease google support group about what was going on and someone in that group said it sounds like I have RSS/TSW and asked me if I used topical steroids or Protopic. It was my awakening moment then that I found out what was happening to me (I thank that person for pointing me in the right direction). I stopped Protopic fully and then my hellish journey began. Never in my wildest dreams did I think it was going to be as bad as it was with the withdrawal process. It was debilitating at points and I still had to work as being a single mom of two small kids, I needed to support them. My first 2 years were extremely painful and I got all the classic TSW physical symptoms - oedema, ooze, insane itch all day and all night, insomnia, facial swelling, sores, painful movements. From all these symptoms, of course I was severely depressed with suicidal thoughts. I did have a wonderful emotional support system with my family and some friends who really tried to understand what my pain was feeling like.
My journey was about 5 years long. I do feel like my life for the first half of those 5 years was taken from me so wrongly. But after the 2-1/2 year mark, I started seeing the rainbow after the storm. It happened a millimeter each day of healing. It finally accumulated to a point that I started getting my life back. Those first 2 years I was basically in survival mode - work, taking care of my kids and house, and rest. That was it. I didn't socialize at all and hibernated as much as I could. I seriously do not know how I survived and pushed through. But I did!
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| Theresa now! |
Unfortunately I did have a relapse and went full body TSW AGAIN after 5 years of being 99% normal beautiful baby-soft skin. I took "The Morning After Pill" (surge of hormones - progesterone) thinking it would be harmless to my body. It set me into full TSW again. It took about 2 years to see the light at the end of the tunnel. Today I am doing very well with beautiful skin. My face is the last of the healing, but doing great ... not perfect yet but almost. Last summer I was even tan. I haven't been able to be out in the sun since I started Protopic and through my hardest years of TSW.
My take away from my journey with Protopic is this: Our bodies are smart. They talk to us through symptoms. Be kind and gentle with our bodies. They do not like synthetic materials being ingested into our systems - via mouth or skin. Get to the root cause of symptoms and do NOT mask or suppress the symptoms. It made me a strong ass person for sure going through TSW. I do feel I lost those years of living, but I keep a positive spin on it ... helping spread the word with people in my world and they spread also and so on.
1. Brief overview of your steroid/immunosuppressant use.
***Note from Cara: For this first question, I have chosen to keep what Zosia sent to me in full before she answered the questions for this post as her experience, and medication use, couldn't sum up any better how Dermatology has gone horribly wrong in the treatment of skin conditions like Eczema, and why things desperately needs to change x***
I vaguely remember carrying a tub of Triamcinolone with me from late teens to early 20's, but rarely used as I was aware of them causing a rebound effect. I was prescribed the tub after a bout of contact dermatitis on my back, which went away pretty quickly.
My eczema properly came back (since childhood!) after a round of antibiotics in late 2016.
In 2017 I went to my derm saying I didn't want steroids and was given Eucrisa, which I only ended up using a few times cause it stung SOOO bad. She then put me on Dupixent in late 2017. It worked pretty well for about 4-5 months, until it gradually stopped working to the point where I decided to quit the drug. Soon after, my eczema came back. I was prescribed Protopic sometime in late 2018/early 2019 as I once again mentioned I didn't want to use steroid creams. I remember being told I could use it safely on my face!! So I applied it where I had the worst eczema, which at the time were my inner elbows, neck and eyelids.
Over the next year Protopic worked pretty well, although never fully made my "eczema" go away. I remember occasionally waking up with super puffy eyelids (early indication of TSW) and blotches of red on my face, but figured it was just my eczema spreading. Unhappy with my progress, I went on a clinical trial for KHK-4083 mid 2019. It worked like magic. My skin was 90% clear and so I quit Protopic. (Little did I know I was only suppressing the TSW from coming out).
The trial ended in early 2020, and about 4 months later my eczema started creeping back ... this time to more parts of my body that never had eczema before. Out came the Protopic! I then used Protopic religiously over the next year. First, twice a week, then every couple of days, then every day. The rashes kept spreading!! Finally sometime in early 2021 my derm said "use steroid creams for two weeks, once a day" to finally "kick" the eczema out of my system. I hesitated but ended up following his instructions, as I was desperate for relief at this point. For two weeks I had great skin, but as soon as I stopped the steroids I broke out in a huge flare. The derm told me to try the 2 week protocol again, so I did it again. Maybe 2 weeks wasn't enough to "kick" the eczema out. As usual, two weeks of clear skin, fire eruption right after. Panicking, I smeared Protopic all over my body for the next few days, with no luck. My rashes were taking over. I finally saw Heba's video (here) in Feb of 2021 and decided to quit EVERYTHING cold turkey on Valentine's Day.
A week later I decided to do NMT and a super strict diet. My skin wasn't nearly as bad as I thought it would be, so I decided that what I was doing was working and TSW would be a breeze. And it was a breeze (apart from a few flares that lasted a few days here and there) for the first 8 months. I gave up NMT and decided to live my life. Around October I got a typical flare ... but instead of receding after a few days, it started to spread ... ALL. over. my. body. Within the month I had red sleeves, a red upper chest and neck, and red splotches across the rest of my body. Everything was red! I quit all moisturizers in Dec of 2021 and have been in the worst flare of my TSW since. The spots I used Protopic the most (inner elbows, eyelids, neck) are suffering the greatest.
I actually recorded my last doc visit (with arguably the "top" eczema specialist in the US, Dr. XXX XXX at XXX in NYC) and she said:
- TSW isn't real.
- Protopic is the SAFEST drug ever.
- I needed stronger steroids ASAP because my eczema had now moved into my bloodstream.
2. When did you use Protopic?
On and off for two, non consecutive years. The heaviest usage was in 2020.
3. How much Protopic did you use?
It started with once every week, then twice a week, then once every other day. The rashes kept spreading to the point where towards the end I felt like I was slathering it on. I think I even used it daily for a little bit.
4. Did you use Protopic during TSW?
No, I quit everything cold turkey Feb 14 2020.
5. Did you use Protopic just before going into TSW?
Yes.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
Yes, I think it is the reason why my first major flare wasn't until month 8 of my TSW. I think it residually suppressed the TSW from "coming out" initially. I have now been in a four month long flare from hell and my worst/ooziest spots are where I put Protopic.
7. If you could go back, would you use Protopic?
NEVER. I wouldn't give that cream to my worst enemy! Except maybe I'd recommend it to Trump.
8. Thoughts on Protopic and your experience of using it.
It works ... until it doesn't. I have also been on Dupixent, (and more recently~end of 2019~ a clinical trial drug with a similar mechanism of action to Dupixent) and I believe those drugs also delayed the onset of my first major TSW flare.
1. Brief overview of your steroid/immunosuppressant use.
Long term use of steroids 10+ years including Prednisolone, Cyclosporine and a lot of topical steroids. After this I was given the ‘wonder cream’ (doctor’s term) Protopic.
2. When did you use Protopic?
Started using at around 24 and used for around 6 years. I was told it was totally safe with no side effects and could be used on my face every day if required.
3. How much Protopic did you use?
I used it around 3 times a week for 6 years.
4. Did you use Protopic during TSW?
No.
5. Did you use Protopic just before going into TSW?
Yes. I found TSW by Google: ‘how to get off Protopic’.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
Yes, the areas I have used Protopic seem a lot more stubborn than the non Protopic areas. For example, my face and neck are still regularly flaring 4 years into withdrawing.
7. If you could go back, would you use Protopic?
I would never use Protopic if I had known.
8. Thoughts on Protopic and your experience of using it.
When I was first given it, I could use Protopic and it would make me clear within 2 days. What I found after a short period of use is it used to remove all the life and colour from my face. It had an initial burn which could only be relieved by multiple layers of moisturisers and I would sometimes have to jump in the shower to remove the cream as the pain was too much.
Every time I stopped the cream I would go into withdrawal. I travelled to America around a year before starting TSW and my whole face was inflamed and swollen but I didn’t realise at the time I was addicted to Protopic. I am now 4 years Protopic withdrawal and struggling most days. My face is very sensitive to allergies which I never had prior to using Protopic. After speaking with Dr Sato he has seen Protopic withdrawal takes 5-7 years to get better where steroids is significantly faster.
*1. Brief overview of your steroid/immunosuppressant use.
I started using topical steroids the 80s, which ramped up in the 90s: various strength Hydrocortisones, Eumovate, Mometasone (Elocon) cream and ointment, various Betnovate preparations. I stopped using all topical steroids in January 2019.
I used approx. 2 tubes of Protopic per year between 2014 and 2019.
2. When did you use Protopic?
Stopped using Protopic in April 2019 after approx. 5 years use.
3. How much Protopic did you use?
As above in question one and only used on face.
4. Did you use Protopic during TSW?
Briefly, for the first 4 months.
5. Did you use Protopic just before going into TSW?
Yes, for the five years leading up to going through TSW.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
Definitely. My face has been absolutely the worst and has been pretty much constantly in some kind of withdrawal the whole 3 years. The line on my face follows exactly where I used Protopic. The skin above, in my hair line is so soft and clear, as are my ears, on and off. These good skin areas go into withdrawal and then heal on and off in cycles. But where I used Protopic it’s rarely healed although it does improve and regress.
7. If you could go back, would you use Protopic?
100% no.
8. Thoughts on Protopic and your experience of using it.
Worse than topical steroids although I can’t prove that. The nerve pain in my face is still ongoing and wakes me at night. Imagine having stabbing pains all across your face for 3 years. It’s not constant now but it’s still hard to live with. I think it’s toxic.
***Ruth has also written 4 excellent blog posts on Protopic which can be found on her brilliant website, here: https://whatallergy.com/?s=protopic.***
*As a child I was prescribed steroid creams for my eczema – the eczema was caused by allergies which I grew out of, but the ‘eczema’ never stopped, so I believe the addiction started in childhood. I used steroids on and off throughout my teenage years. When I was 24 I used the steroid Kenalog injection twice, then after this I found that I needed steroid creams more and more, until I was using a strong steroid on my body every other day, and hydrocortisone 1% on my face every day. Luckily I never got to the point where I was using strong steroids every single day, so I’m a relatively mild case of TSW (though I still go through absolute hell!).
2. When did you use Protopic?
I used Protopic in April 2021 for a month.
3. How much Protopic did you use?
At first I used a small amount of Protopic every few days and it did at first help my symptoms, then I needed to use it more and more to get the same result, so I ended up using it every day. I still only used small amounts as I’d read online that it can make symptoms worse, so I was very wary.
4. Did you use Protopic during TSW?
I was two months into TSW when I used Protopic.
5. Did you use Protopic just before going into TSW?
No.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
Absolutely. My skin was showing a lot of improvement before I started Protopic, then the Protopic further helped improve my symptoms. Then as I realised I was having to use it more and more to get the same results, I decided to stop using it and then my skin flared horrendously – not quite as bad as when I first stopped using steroids, but it was pretty close and I flared like this for around a month. It felt like it set my progress back by at least a month.
7. If you could go back, would you use Protopic?
If I could go back, I would absolutely not use Protopic.
8. Thoughts on Protopic and your experience of using it.
My thoughts are that Protopic is so dangerous!! Although we have a long way to go with having TSW recognised by medical professionals, at least there is some warning around the dangers of using steroids, but we don’t see this with Protopic. When the doctor prescribed me Protopic, he told me it’s safe to use on my face and around my eyes every single day for the rest of my life! At least with steroids there sometimes is a warning around not using it for a prolonged period of time, but we don’t see this with Protopic and doctors seem to be under the impression that it’s completely safe to use long term. When I was prescribed Protopic, I told the dermatologist that I’ve read accounts of literally hundreds of people online who say they became addicted to Protopic – he looked baffled and said that’s impossible as Protopic isn’t a steroid, and he told me that he knows better than them! So while we seem to be making gradual progress with steroids, there seems to be no progress with medical professionals recognising the dangers of Protopic.
1. Brief overview of your steroid/immunosuppressant use.
No regular steroid use, my mum was a very wise woman and knew how dangerous they were (if she was still around, she would stop me from starting using Protopic, I am sure of that). I only used topical steroids on two occasions, circa 3 applications when I was a teenager. There was no medical treatment of my eczema until I turned 30. My eczema was not severe, and I just learned to live with it. At the age of 30, on advice of my partner, I went to a GP with a special interest in dermatology (I only learned that he was not even a dermatologist last year) who, without performing any tests and agreeing to allergy testing only because I insisted on it, diagnosed me with eczema and prescribed me Protopic telling me to use it for as long as it was working. He told me we would worry about other options when it stopped working. In March 2020 when my body developed a tolerance to the drug, I stopped using it and went into withdrawal (I did not know that my body was addicted to the drug and would have to go through withdrawal).
2. When did you use Protopic?
I used Protopic sparingly between September 2014 and end of March 2020.
3. How much Protopic did you use?
During the 5.5 years of using Protopic I used less than 4 tubes: 1.5 of 30 g tubes and 2 of 10 g tubes 0.1% in strength. In fact, I had to dispose of the 2 of them as they expired before they were emptied.
4. Did you use Protopic during TSW?
I have not used Protopic during withdrawal, however another GP with a special interest in dermatology prescribed it to me despite me telling her that my body developed a tolerance to the drug.
5. Did you use Protopic just before going into TSW?
Yes.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
My withdrawal was caused by Protopic only, although I must add that I was put on oral steroids and a topical steroid 4 months into withdrawal and two more times in the last 2 years. I also had a round of oral steroids on their own one more time. NB It was May 2021 when I learned about TSW and that my symptoms reflected the condition. For clarification purposes, my Protopic withdrawal started at the end of March 2020.
7. If you could go back, would you use Protopic?
Not in million years, it’s a devil’s potion.
8. Thoughts on Protopic and your experience of using it.
While I know that some people have to resort to immunosuppressants to help them survive TSW, as no research about the risk of developing TSW symptoms or worsening the symptoms is out there, I think it’s vitally important to ensure that awareness about experiences similar to mine is shared. I personally am upset with myself that despite my mum setting me for success by keeping me away from dermatologists and steroids, I did not thoroughly consider how suppressing your immune system for so long to manage mild eczema could affect me. My (and other community members’) treatment by the medical community since I/we went into withdrawal was mostly deplorable. They are uninterested, irresponsible and lack the very basic ability to listen, investigate and challenge status quo.
Dominika's experience has also been featured in a lot more detail (with some of the most shocking treatment by doctors I've ever read) on the brilliant website, www.whatallery.com (here).
***Please note that whilst I have tagged Dominika's account, it is not a TSW account, with no photos etc***
*
1. Brief overview of your steroid/immunosuppressant use.
I used topical steroids intermittently since I was a child. In my late 20’s (when I think I became addicted to topical steroids) my eczema started spreading from my hands, behind my elbows and knees to the rest of my body including my face. I started to use TS of increasing strength more regularly and used them daily for at least 15 years.
2. When did you use Protopic, and how much Protopic did you use?
I used Protopic around my eyes and mouth daily for five years. I used all the topical medications as prescribed by my dermatologists.
3. Did you use Protopic during TSW?
No.
4. Did you use Protopic just before going into TSW?
I stopped using Protopic three years before fully stopping steroids. This enabled me to differentiate between the effects of Protopic and TS. While on Protopic, I had painful styes on my eyelids at least once a month. I also had cold sores around my mouth almost monthly. In my fifth year of Protopic use, my eyes started to swell so badly that half my face would swell. I went to various ophthalmologists who would prescribe combinations steroid and antibiotic eye drops and steroid creams for my eyelids to bring it under control. However soon after I finished the prescription, the swelling would return. I fortunately saw a different ophthalmologist who said he had seen this before (!) and that I was probably allergic to Protopic and I should stop using it immediately. I stopped using the Protopic that day and replaced it with TS. I immediately stopped developing styes in my eyes, the horrible eye/face swelling stopped and I have had only two cold sores in the past five years. I did not believe I was allergic to Protopic but felt I was addicted to it, so I Googled to see if that was possible and that’s when I discovered Topical Steroid Addiction and TSW. I gradually weaned off TS over the next three years and have not used any medication for my eczema in 2 years and 9 months and am still in the throes of TSW.
5. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
I believe Protopic may have affected my TSW because the skin around my mouth and my eyelids are constantly flaring and the skin always looks awful, but I can’t be sure this is just because of Protopic, because I also used TS there before and after Protopic.
6. If you could go back, would you use Protopic?
Absolutely not because of the terrible symptoms I developed while I was on it and because I suspect it is contributing to my continuous flares and damaged skin around my eyes and mouth.
*1. Brief overview of your steroid/immunosuppressant use.
I developed eczema at 3 months old and used topical steroids of varying potencies on and off my whole life till I began TSW in December 2021. Having previously used Hydrocortisone and Eumovate (Clobetasone Butyrate), I was first prescribed Elocon (Mometasone Furoate) and Betnovate (Betamethasone Valerate and Dipropionate) when I was around 10 years old and continued to use a combination of these through the years, sometimes weaker, sometimes stronger. Before beginning Protopic I tried to use the lowest potencies on my face and neck i.e. Hydrocortisone, but did use Eumovate sometimes.
I recall taking a week-long course of oral steroids which was probably Prednisolone for my asthma when I was around 9, but I can’t remember if it affected my skin or not either during or after.
I was using Hydrocortisone, Eumovate (mostly) and Betnovate on most of my body from the neck down alongside Protopic on my face and neck in the year before beginning withdrawal as my TSA developed and/or worsened. I took a three-day course of Prednisolone in August 2021 when I unwittingly went into withdrawal for the first time (it was agony and I didn’t feel ready to start TSW then due to family and personal reasons).
I have used no immunosuppressants other than Protopic.
2. When did you use Protopic?
I was prescribed it by a dermatologist in February 2020 but didn’t start using it till July 2020. I can’t remember why I felt a nervousness to use it as I had no idea of TSA/TSW or Protopic’s side effects, but for some reason I did put it off. Maybe I had a gut feeling that it was bad news...? No idea. I used it until I began withdrawal in December 2021.
3. How much Protopic did you use?
It's hard to remember with 100% accuracy but I went through 8-10 30g tubes of 0.1% strength Protopic over the 1.5 years I used it. I remember I used it a few times (no more than five) on my hands, wrists and shoulders, but used it pretty much daily on my face and neck. In the beginning it was on small patches (eyelids, small patch on my neck) but as my TSA and addiction to Protopic worsened, so did my skin. The inflammation kept spreading and spreading, and so for the last five-ish months of use I was applying it over my entire face and most of my neck, spare a patch at the back.
4. Did you use Protopic during TSW?
No.
5. Did you use Protopic just before going into TSW?
Yes, I stopped using Protopic five days before I stopped topical steroids.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
I believe it definitely has. With my steroid use I think me developing TSA was inevitable, but the time my skin was getting worse and worse coincides with me using Protopic; I think it’s very possible it accelerated the addiction. Also, aside from my other problem areas (hands, wrists, ankles and feet) my face and neck are definitely the areas most affected in my TSW. The skin is more fragile, damaged, dry and weeps/oozes more easily than the rest of my body.
7. If you could go back, would you use Protopic?
I wouldn’t touch it with a ten-foot pole.
8. Thoughts on Protopic and your experience of using it.
Along with it potentially accelerating my TSA and making my withdrawal worse, I’ve experienced a few more horrible side effects from Protopic.
The dermatologist who prescribed me Protopic told me absolutely nothing about it. I was concerned about the skin-thinning side effects of steroids (I was yet to learn about TSA and TSW) but he spent the appointment dismissing my concerns and telling me I was “vastly undertreating my eczema” by trying to use as weak and little as possible. Alongside high potency topical steroids, he prescribed me Protopic and my prescription said I was to use it “as and when required”. It also said I should avoid sunlight and alcohol.
I experienced the classic burning sensation after applying that most Protopic users describe but I persisted and it subsided after a couple of weeks. Aside from that, for the first few months I was delighted at how well it seemed to clear the eczema on my eyelids and patch on my neck. If you had spoken to me about it then I would have told you it was the next best thing to a cure for eczema! However, after a while I started to realise that I couldn’t go more than a couple of days without applying it, and after that, the “eczema” began to spread even with daily application. A year later and it was all over my face and neck.
I drank alcohol twice after starting Protopic where I flushed and felt a prickly feeling that subsided quickly. The third time I drank, which was literally ONE SIP of red wine, I went bright red and my face started burning and stinging like I’d never felt before; it felt like a thousand tiny needles stabbing my skin. It felt like a proper allergic reaction and was so scary. That was in December 2020 and I haven't tried drinking since then.
By far the worst side effect has to be the photosensitivity. About ten or eleven months into using it I realised I had developed severe photosensitivity where I applied it. Over the following months it worsened until it reached the point where five minutes exposure on a totally cloudy day would leave me burning, red and oozing, even though I've never been sunburnt in my life before this. At the time of writing, I’m almost two months into withdrawal and this hasn’t improved. I basically have to avoid going outside during daylight and if I have to, I must cover up completely. It's honestly miserable – having to hide behind a big hat, scarf, mask etc. and clamouring to get into shade even in the Scottish winter. I even feel too anxious and afraid to have the curtains open inside my flat so I just sit in the dark most of the time. I'm also terrified each time I "burn" or have this reaction that it's increasing my risk of skin cancer as there have been cases of skin cancer linked to Protopic (as well as lymphoma by the way. WHY wasn’t I told any of this by that cursed dermatologist?!?!).
I've seen some who used Protopic say they had to be careful of the sun but I have only ever come across one other person who developed the same severe photosensitivity, and so far it hasn't resolved for them through their withdrawal. I feel the most nervous and depressed about this symptom because I have no proof it's not permanent, unlike my other TSW symptoms which I know will resolve. I would also like to be able to drink alcohol again but that's much less of a big deal, I never drank much to begin with anyway.
I wish I had never used Protopic. If I could speak to my past self I’d tell her NEVER to put an ounce of trust in that dermatologist, stop using the steroid creams ASAP and rip up the Protopic prescription. My message to anyone considering using Protopic for eczema or TSW is simple: it’s not the answer. It won’t help and will probably hinder. You can save yourself a lot of time, stress and pain by staying away from it. I learned this the hard way and am looking at probably even longer before recovery from TSW and I may never recover from some of Protopic’s side effects.
I believe Protopic is dangerous, moreso than steroids. Why is a cream that burns like fire used for skin? Why is a medication that comes with cancer warnings prescribed for mild eczema? Why are dermatologists saying it’s totally safe when they know there isn’t much research about its long-term effects and there are thousands of people like myself who have suffered because of it? From personal experience I’m anti-steroid when it comes to skin complaints and eczema (it’s just not worth it in my opinion) but I think steroids do have their place in medicine for other, more serious conditions. In the case of Protopic, I think it should be discontinued and never used by anyone again. I’m deeply concerned that as dermatology and other medical professionals are slowly accepting TSW and acknowledging its existence, their response is to use even stronger drugs such as Protopic and other immunosuppressants to “treat” TSW and to start eczema patients on these scarier treatments even earlier. It feels like one step forward and two steps back.
*1. Brief overview of your steroid/immunosuppressant use.
Childhood eczema and steroid use from around age 8-10 until late teens. Minimal usage again until mid twenties. No eczema or skin issues until end of 2018 when I was 31. However, from 25 to 31 I used Fucidn-H (I didn't know the 'h' meant Hydrocortisone) when I had bug bites and infections while living in South East Asia.
End of 2018 into 2019 I developed a rash on my arms and face. It was diagnosed initially by a dermatologist as contact dermatitis from the chemicals I was exposed to at work. From February 2019 until December 2019 I was prescribed various potencies of steroids from Hydrocortisone 0.1% to Protopic and Elidel. In that same time frame I had to take time off work & saw 4 dermatologists, 2 GPs, allergists, & immunologists. 8 different topical steroids and 2 topical immunosuppressants & lots of sick leave.
In 2019 the rash started on my face and arms but over time moved to my neck, chest, and upper back.
2. When did you use Protopic?
Minimally for 6 weeks in November/December 2019.
3. How much Protopic did you use?
Not much! I barely used half a tube..! However, I had 2 tubes of Elidel given around the same time. One is completely unopened, the other is minimally used.
4. Did you use Protopic during TSW?
No. I stopped Protopic a month before stopping steroids.
5. Did you use Protopic just before going into TSW?
Yes. The 2 months directly before I started TSW.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
Yes I do, greatly! The spots I used Protopic are much harder to heal and are taking longer. For example, my inner elbow had steroids my whole life and this spot is healed, only affected if I have a big flare up and is still minimally affected. My face never had steroids on it until 2019 and then was always minimal as I was scared of their capabilities. Because of the Protopic I used (it's not a steroid after all *insert TSW knowledge eye-roll here*) my face is a mess and the most affected overall for my TSW.
7. If you could go back, would you use Protopic?
Hell to the no. It is the devils piss, created by the spawn of Satan himself.
8. Thoughts on Protopic and your experience of using it.
Regret. Immense regret. Wish I had never touched the stuff.
My partner also used my Protopic 3x. No more than a pinky tip amount for his eyebrows. He also experienced a small withdrawal after this. I remember laughing at him because he looked like he had gone and had his eyebrows waxed – that is how the redness showed up around his brows for a short time. Over two years later and he still has very flaky brows.
*1. Brief overview of your steroid/immunosuppressant use.
I’ve used mild steroids since my mid-teens and gradually they stopped being effective and I needed a stronger dose. I first got offered Protopic when I had a course of Roaccutane at 22 – I was worried the Roaccutane would affect my eczema so the derm gave me Protopic (I used it once and it burned so ditched it). Bizarrely, the Roaccutane made me very dry when I was on it but my skin was eczema and acne free for 2 years after and I had amazing clear skin. When I was 25, the Eczema crept back in when I had a stressful period in my life and I was given Protopic and Dermovate to alternate.
During the year I was on Dermovate and Protopic, I went back and forth to my GP and kept asking to see a dermatologist, only to be told no it was just eczema and I had to live with it. In the end I went privately, then got put back into the NHS by my dermatologist. They took one look at me and could see the medications weren’t working and I needed help. I completely stopped all steroid and Protopic use and started Methotrexate. I was on it for 6 weeks but reacted badly to it so I was then put on Cyclosporine and it gave me a break when I was on the strongest dose. I was on Cyclo for 9 months. The steroid withdrawal came back after, but not as badly as before. Although, there was one month when I had to move back in with my parents for 2 weeks as I needed around the clock care. It was like my body went into hardcore healing. I was like a snake shedding its skin. I’ve never seen anything like it when the skin starts peeling and flaking off. There was so much!
Unfortunately, at Christmas (3 months post cyclo) I ended up with very severe infections to the point I was nearly hospitalised. I think I would have been had it not been Christmas and staff shortages. My swabs came back showing staphylococcus and streptococcus but eczema herpeticum was also questioned although that swab was negative. I think it was so bad because my immune system was weakened from my body fighting so much and also the immunosuppressants.
2. When did you use Protopic?
I was given Protopic and Dermovate to alternate for a year at 25. Again the Protopic burnt terribly. I had a week of sleepless nights, but persevered and to begin with it actually cleared up my eczema. I ended up yo-yoing between Protopic and Dermovate as recommended by my gp at the time. I knew it wasn’t sustainable and was really scared of the long term effects. Every time I tried to stop, my next flare was so much worse! This went on for a year.
3. How much Protopic did you use?
I used Protopic on my face and arms. I went through several tubes at 1% strength. The GP kept prescribing me the lowest dose yet the pharmacist never had it in so always gave me the stronger stuff. Every time I told the GP, they didn’t understand what I was saying. In hindsight, this was complete negligence and dangerous. A pharmacist shouldn’t change your prescription.
4. Did you use Protopic during TSW?
Yes, I think my body was going through TSA and TSW the year I was prescribed Protopic and Dermovate as the Eczema got worse and worse and spread all over my body. I couldn’t regulate my temperature anymore. I’d be visiting someone and pop to the loo and look in the mirror and my face would be peeling/ flaking so much it looked like I’d had a chemical peel. Even though I’d moisturised within the last hour. That was scary!
5. Did you use Protopic just before going into TSW?
Yes.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
Definitely, but without medical evidence it’s so hard to say for definite. Anything that burns your skin so much surely has to have long term effects though.
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| Laura now! Whilst she says she is not there yet, she is able to enjoy life without worrying so much. |
7. If you could go back, would you use Protopic?
Definitely not! In hindsight, I needed stronger emollients and ointments. I didn’t understand how the skin barrier worked so didn’t use thick enough creams when I was younger. I also needed to understand and be able to manage my allergies better as my eczema is a mix of contact dermatitis and atopic dermatitis.
8. Thoughts on Protopic and your experience of using it.
I feel there needs to be more understanding of the long term impact of Protopic. If I could go back in time, I’d ask the GP and dermatologist who gave me it if they’d used it themselves and actually understood how painful the burning was. There needs to be more education about how to look after our own skin, not just blanket one size fits all short term plasters. They mask the problem. Every eczema/psoriasis/acne patient should have a diary to keep track of what is going on and work with their GP/dermatologist to holistically manage their condition. We are all so different and there are multiple reasons our skin reacts and that is how I feel things need to be treated going forward. Protopic and topical steroids just mask problems and make them worse.
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1. Brief overview of your steroid/immunosuppressant use.
Born in 1984. Started to have asthmatic bronchitis at 2, treated with steroids. Eczema appeared at 3, treated with various creams and topical steroids. All went away after 1988. From 5 to 13 years old, I was eczema free, then at 14, I started to have allergies and my eczema came back; I remember that I started using topical steroids almost immediately. Each time I had a patch on my face, I would use it and it went like that until I had a huge and painful flare in 2020 when I was 36. At the time I was 2 months postpartum, and I think hormones might have played a part, too.
2. When did you use Protopic?
I used Protopic when I was 23 as Locoid wasn't working anymore – my aunt told me about "this amazing dermatologist" who prescribed me Protopic. He did warn me about the treatment and that I couldn't use it for long. I didn't take his advice and realised how dangerous Protopic could be.
3. How much Protopic did you use?
I don't remember the prescription, the duration etc, just that it worked, and once my eczema came back, I started using Protopic like I was using Locoid. I'm not 100% sure how long I used it for, but after no more than 3 months use, I started to get small yellow spots on my eyelid. They were itchy, too, and when I had an appointment with my allergist, he said it looked like I had Herpetic Conjunctivitis, but wanted it confirmed by an ophthalmologist. Due to the urgency of the condition, with the potential to go blind, he told me to ask for an emergency appointment. I phoned and booked an appointment for the following week, but when my allergist found out when the appointment was, he literally took my hand and brought me to the ophthalmologist's office down the street where I ended up getting confirmation of the diagnosis and started a one month treatment for herpes. The allergist I saw was very critical of Protopic and because of him, he probably saved my eyesight.
When I stopped using Protopic, I went back to Locoid, and also used oral steroids, when my eczema and allergies were hard to manage, until my pregnancy and big flare in 2020. After my flare, I went straight back to topical steroids (this was all my general practitioner and dermatologist could do, of course ...). I already knew about TSW, thanks to Facebook, but I wasn't ready go go through withdrawal then, and so I waited until I set up my eShop so I wouldn't have to see a lot of people. I've been steroid/immunosuppressant free since September last year and I've still not had a flare. Was it just acute eczema? Am I going to suffer later? I don't know.
4. Did you use Protopic during TSW?
No.
5. Did you use Protopic just before going into TSW?
No.
6. If you could go back, would you use Protopic?
Absolutely not.
7. Thoughts on Protopic and your experience of using it.
I couldn't imagine back then that a cream could hurt you that much. That an authorised medicine could be on a blacklist. I think it was an excessive decision to put me on Protopic for patches on my face and neck. It was ugly, it was itchy, but I was fine. Healthy.
Knowing now about all its side effects, I think Protopic should be banned. My allergist also made a report to the health authorities).
*1. Brief overview of your steroid/immunosuppressant use.
Elocon 13 years. Protopic 13 years. Course of Prednisone 5 times over 10 years. Less potent steroid creams 10 years prior. Methotrexate for 6 months in my early 20s (which I realise now was TSW symptoms I was suppressing and not ‘severe eczema’).
2. When did you use Protopic?
I started using Protopic when I was 16 (around 2007 - stopped 2020).
3. How much Protopic did you use?
I can't remember the number of tubes I’ve gone through, I’ve gone through a handful and was only using on my face.
4. Did you use Protopic during TSW?
No, I gave up all the medication provided to me by the doctors and went cold turkey.
5. Did you use Protopic just before going into TSW?
Yes.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
Yes, the areas I used Protopic are taking A LOT longer to heal and flare up more – so much more unpredictable.
7. If you could go back, would you use Protopic?
Hell no, during the worst of my TSW symptoms my dermatologist told me to lather it on my face like cream!! Unbelievable.
8. Thoughts on Protopic and your experience of using it.
I never experienced burning symptoms when applying the creams, but I used to experience burning and stinging (like a flare) on the areas I would apply Protopic, which would calm down in the morning after applying the cream to the area the night before, but essentially, I thought the creams were helping the burning/stinging sensation. The areas on my face where I used Protopic are taking so much longer to heal. It's constantly flaring or dry and flakey – haven’t really had much of a break – makes me question whether those areas will ever heal 100%. I would not recommend Protopic to anyone – it should be avoided at all costs. For years I thought the cream wasn’t doing any harm as it appeared to be ‘working’ until it suddenly didn’t. Took years to see the side effects.
*1. Brief overview of your steroid/immunosuppressant use.
My usage was sporadic but long – 40 years. Topical steroids – every strength, Protopic, asthma inhalers, eye drops, and 1x injection from a sports injury.
2. When did you use Protopic?
I started using Protopic in 2016.
3. How much Protopic did you use?
I used it for four years, only during the summers on my neck.
4. Did you use Protopic during TSW?
No.
5. Did you use Protopic just before going into TSW?
No.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
Yes, it has affected me, and the symptoms were worse. But I also think by the time you were prescribed Protopic, those were the most recalcitrant areas so it could have been a compounding effect of using too much TS over time and a potent immunosuppressant. I don't think this point has been made enough in our community.
7. If you could go back, would you use Protopic?
No, I would not use it, but I wouldn’t have believed in TSW, so I have no regrets using it. For me, I had no side effect at any point, so it was an effective way to ‘control’ eczema.
8. Thoughts on Protopic and your experience of using it.
I wish I had side effects so I could have stopped it earlier. I am concerned about how much Tacrolimus has been pushed as an acceptable alternative when it has a cancer risk. There have been 297 fatalities between 1994-2021 in the UK. The majority (156, ie, 52%) of them classified under “Death and Sudden Death”. See Yellow Card Interactive Drug Analysis Profile here: https://info.mhra.gov.uk/drug-analysis-profiles/dap.html?drug=./UK_EXTERNAL/NONCOMBINED/UK_NON_000662566342.zip&agency=MHRA. Had I seen this statistic, I would have reconsidered using it but I was not warned of anything by the dermatologist.
I don’t think the question is about using/not using Protopic. If you are in TSW yourself now, I think the fundamental question is, are you relying on something external to you, to rescue you? Are you looking for this and that, buying/trying everything anyone recommends? I think we are in this living nightmare because we’ve relied on everything but ourselves. TSW could be a time spent to look deep within and marvel at how our body can better fix itself without our interference. The body is constantly aiming for homeostasis. Trusting our body is important and having the right mental outlook.
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1. Brief overview of your steroid/immunosuppressant use.
Used mild Hydrocortisone since I was a young child only on inner elbow. Managed with this until I was 18 when eczema began spreading. Was prescribed higher dosage of cortisone cream for my body and Elidel for my eyelids. Eczema went away. At 20, ‘eczema’ spreading uncontrollably, prescribed Protopic and Eumovate.
2. When did you use Protopic?
August - September 2020.
3. How much Protopic did you use?
Enough to cover my arms and legs, neck and face, twice a day.
4. Did you use Protopic during TSW?
Yes, but was unaware I had TSW, thought I was treating severe eczema. Had stopped using steroids earlier that summer as they weren’t working. Stopped Protopic when I learned about topical steroid and Protopic Withdrawal. Protopic had stopped working, too, so was experiencing some form of addiction to that as well.
5. Did you use Protopic just before going into TSW?
Yes.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
I believe it has affected my healing time during my withdrawal, especially on the thinner areas of skin where Protopic was deemed to be “safer” than steroids e.g. face, neck and hands. Although I used both steroids and Protopic on my body, my body is nicely healed in under a year, about 90%, while those 3 areas are only slowly starting to recover at 13 months TSW.
7. If you could go back, would you use Protopic?
Absolutely not.
8. Thoughts on Protopic and your experience of using it.
Protopic was prescribed to me by my GP when I told them my Elidel ran out (another immunosuppressant). The first night I put it on, it felt like hundreds of fire ants were crawling under my skin, it was unbearable. Upon research I found out this was “normal” and would subside after a few applications, but at the time I was willing to go through any pain to get clear skin, and it worked, until the eczema came back after a couple of days of not using the cream. This is what finally gave me the push to accept my fate and go through withdrawal. I was told Protopic and Elidel were safe for the face, while steroids weren’t. Unfortunately the areas I used Protopic are taking longer to heal than where I used steroids. (Btw I only used Protopic for a couple of months and my face is still very damaged after a year of withdrawal).
*1. Brief overview of your steroid/immunosuppressant use.
In the beginning of 2021 I started to have a really red and irritated neck. Also my forehead and eyelids were irritated. I have had eczema all my life, on and off. I used to go to a chinese doctor who had helped me in the past with chinese herbal medicine and acupressure. On and off I would only use the herbal medicine when it got worse, but now it didn’t seem to help. I then remembered a fellow student in the past years ago who was talking about Protopic and had positive results. It also isn’t a steroid, so I thought it was safe. I went to a dermatologist and she confirmed it was safe to use even on my face. She warned it would burn the first couple of applications and that I couldn’t drink any alcohol because you could turn really red, and I should be cautious with being in the sun because of the chance of skin cancer. I was willing to take this miracle ointment because I trusted her.
2. When did you use Protopic?
July till September 2021 (3 months). After my holiday in September, I decided to stop because while using it I would get bumpy skin and dry patches on places I never had eczema before. That didn’t feel right.
3. How much Protopic did you use?
As adviced twice a day. Later on, once a day, and then on and off again twice a day etc. Sometimes a week with no usage.
4. Did you use Protopic during TSW?
I already experienced TSW symptoms whilst I was using Protopic, which was already after 2 months of usage when I had my follow-up appointment at the dermatologist. She said it was part of the eczema cycle, but my gut feeling was that this was something different. She suggested light therapy instead.
5. Did you use Protopic just before going into TSW?
Yes, I used it in the last week of September, because I wanted no skin issues on my holiday. But I remember I used it on my back because it was really dry, a place where I never had eczema before.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
I have only used Protopic, no other topical steroids. So it definitely affected my withdrawal.
7. If you could go back, would you use Protopic?
NO NO NO NO NO! I really regret going to the dermatologist and blame myself very much for it. I can’t believe how easy it was to get this dangerous medicine. It is not even a medicine, it just makes things worse!
8. Thoughts on Protopic and your experience of using it.
I wouldn’t recommend Protopic to anyone, this ointment should be forbidden!
Every time I used it (again after a while) it burnt my skin. And sometimes, while on Protopic, the skin on my face was so flat of colour, all natural redness was gone. It didn’t feel natural at all even though it was the skin I wished I always had because it was so flawless.
Now, in my 5th month of TSW I have experienced the worst withdrawal symptoms. During my wintersport holiday, the air was so dry and I took 2 baths, which might have worsened my symptoms. I went from red skin and dry skin to excessive shedding every day. Also the red skin tends to grow down my torso to my legs. The affected skin is damp hot while my body is shivering from the cold which is really annoying. The amount of skin flakes I shed every morning is really disturbing and gives me anxiety. Physically I am a wreck, falling apart, and mentally and emotionally it is a rollercoaster, too. I feel sadness, regret, anxiety, anger, ugly, not myself, gross, pain, depressed, low in energy, hot/cold and how could I forget itchy.
*
1. Brief overview of your steroid/immunosuppressant use.
Age 0-16 different kinds of steroids increasing in potency. Age 16-25 immunosuppressants (Elidel and Protopic, but mostly Protopic).
2. When did you use Protopic?
I started using Protopic when I was 16 (when the steroids stopped working) and used it until I was 25.
3. How much Protopic did you use?
I used Protopic daily; 2-3 times daily on my face, neck, hands and arms.
4. Did you use Protopic during TSW?
Without knowing, I started TSW at the age of 16 when I switched from steroids to immunosuppressants (I did not have any TSW symptoms) however my true TSW journey (and symptoms) started when I stopped using Protopic at age 25.
5. Did you use Protopic just before going into TSW?
Yes.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
I believe that I would have gone through TSW at the age of 16 and been done many years ago. I believe that I would not suffer today if I did not use Protopic. Moreover, I believe that the “true” TSW I am going through now will take longer due to Protopic.
7. If you could go back, would you use Protopic?
If I could go back I would never use Protopic. However, it felt like a magical cream at the age of 16 when looks mattered so much, but I regret it now.
8. Thoughts on Protopic and your experience of using it.
When using Protopic, it felt great that I finally got something that could hide my “eczema” (which was actually the start of TSW - red patches on my face and neck). I remember that I was thanking my dermatologist for giving me something that worked. I did not have any TSW symptoms for the 9 years I used Protopic. When I stopped using Protopic after 9 years, I had almost all the TSW symptoms which is nothing like the small red patches at 16. Protopic definitely prolonged my healing!
*1. Brief overview of your steroid/immunosuppressant use.
I've had eczema my whole life. My mum was very careful and preferred to use more natural products on me, but as I got older, and wanted the eczema to go away quickly, I went to my doctors who gave me a mild steroid. My aunt then took me to a Chinese doctor who prescribed me this little white cream, which I now realise must have contained steroids because when the Chinese doctor closed down and stopped selling the cream, my skin went (unknowingly at the time) into withdrawal. I then went back to the doctor who prescribed me stronger and stronger steroids (this was from the age of 14). I am now in my thirties. I used Protopic for just 2 weeks at the beginning of January 2022.
2. When did you use Protopic?
During TSW. After a bad flare where I was signed off work in January 2022, I went to my GP and was prescribed Protopic. They told me it was 'non-steroidal' and safe to use – I had already told her about TSW and not wanting to use steroids again because of their addictive properties.
3. How much Protopic did you use?
I only used it about five to ten times over a two week period in January 2022, mainly on my wrists.
4. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
I have found my wrist is worse where I used it and healing is slower there than the rest of my skin, but luckily for me, I was always wary of using Protopic as it looked very similar to steroid creams. I then spoke my cousin who said that if I was concerned, I shouldn't use it because I had come so far, and after I saw someone's TSW page where they were talking about it being addictive and just like steroids, I threw it in the bin.
5. If you could go back, would you use Protopic?
No.
6. Thoughts on Protopic and your experience of using it.
I’m disappointed in my GP as I feel she lied to me and betrayed my trust. Yes it isn’t a steroid cream, but it’s still something that can cause your skin to become addicted.
*1. Brief overview of your steroid/immunosuppressant use.
I used topical steroids (Elocon/Mometasone) occasionally for 20 years. I used maybe a tube a year or so.
2. When did you use Protopic?
In 2020 for around 10 months.
3. How much Protopic did you use?
I used it once or twice a week. I had 2 tubes with different potencies and haven’t finished either of them.
4. Did you use Protopic during TSW?
Yes.
5. Did you use Protopic just before going into TSW?
No. I stopped using steroids and got signs of TSW, so I was prescribed Protopic for my “worsening eczema”.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
I think it might have prolonged my withdrawal. I haven’t used steroids for the past 2 years and had a little use of them in the pas, but I still have some areas that aren’t healed and they are exactly the areas I used Protopic on.
7. If you could go back, would you use Protopic?
No. I could have saved myself so much suffering and would probably be done with TSW by now.
8. Thoughts on Protopic and your experience of using it.
I was using a tiny bit of steroids for 20 years, but not every day, as I had only occasional signs of eczema. In 2020 I stopped using steroids because I got perioral dermatitis. So my “eczema” got worse (now I think it was the beginning of TSW) and I was prescribed Protopic. It was burning and itching at the same time, so much that I almost couldn’t sleep, work or concentrate on anything. I was just crying the whole day after applying it, waiting for the burning to stop. My dermatologist told me I needed to use more of it (after that I never went back to her). It was the only cure that I had so I was suffering but continued using it.
One day I got a horrible bumpy rash on my face and neck, so I stopped using Protopic and went into full TSW. Now, after one year of stopping Protopic and two years from stopping the steroids, the only areas that are not healed are the ones I applied Protopic on … My skin cycles from red to flaky every day and I don’t know when it’s going to end. I guess it’s Protopic Withdrawal. I didn’t know anything about Protopic and it was presented to me as a safe alternative to steroids. I complained to my dermatologist about the insane burning and she told me “You need more Protopic”. An alternative for her would be steroids that caused Perioral Dermatitis which she was trying to cure me from …
I think it’s a shame that Protopic is still prescribed as a safe drug, considering all the patients’ complaints about burning and the damage it does to the skin, not to mention the black box warning.
*
1. Brief overview of your steroid/immunosuppressant use.
Pre-TSW I used steroid creams and Protopic for around 2 years consistently. The steroids gradually increased in strength but the most used most probably was Elocon, and then Dermovate. The Protopic stayed at the 0.1% strength.
2. When did you use Protopic?
I used Protopic from June 2016 - August 2018. Usually whenever I had any redness, mostly on the face.
3. How much Protopic did you use?
I would use it in short courses, usually every fortnight for the recurring rashes/redness I had from RSS/steroid addiction.
4. Did you use Protopic during TSW?
I stopped using Protopic and steroid creams at the same time, then a few weeks later, moisturisers. I've used no immunosuppressants or medicines during TSW.
5. Did you use Protopic just before going into TSW?
I did use Protopic just before going into TSW, probably within 2 weeks of starting it.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
I believe Protopic has vastly affected my withdrawal, I actually have a theory that my purely steroid withdrawal was/would have been around 8 months. My body has been 90%+ healed since then, and only my face and a few patches that I used Protopic on have remained an issue 3 years on.
7. If you could go back, would you use Protopic?
Like most, if I could go back I definitely would not have used Protopic at all.
8. Thoughts on Protopic and your experience of using it.
Personally, from my perspective, people should be as wary or moreso of Protopic than steroids. In addition to lingering TSW symptoms it's given me extreme sensitivity to the sun and prolonged my withdrawal much longer than it could have been. I actually did not suffer the burning sensation when using it, therefore I may have been quicker to reach for it and use it on my face regularly.
*1. Brief overview of your steroid/immunosuppressant use.
My mum started using Hydrocortisone on me as directed by my GP when I started nursery (my main trigger has always been stress). Initially I just had a few red, small, itchy patches on my inner elbows. This eventually spread to my hands, wrists, chest, neck and face. The doctor would move me onto stronger topical steroids every few years. When I was 18, my usual routine included using Hydrocortisone, Elocon and Eumovate on my face, neck, hands and wrists every few days.
2. When did you use Protopic?
When I started uni (18 y/o), steroids became way less effective at calming my skin, so Protopic was prescribed. I hated using it so only tried it for around 3-6 months.
3. How much Protopic did you use?
I was told I could use as much Protopic as I wanted, and that it would help where steroids didn't, so I would use it like a moisturiser on my face.
4. Did you use Protopic during TSW?
I still used steroids alongside Protopic, but looking back, I had symptoms of Topical Steroid Addiction since I was about 13 or 14.
5. Did you use Protopic just before going into TSW?
No, I still used steroids (mainly Elocon, almost daily at this point) on my face and hands for about 6 years before TSW.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
Yes. I mainly used Protopic on my face. When I went into TSW, my inner elbows, hands and wrists flared massively after a few days of not using steroids (I hadn’t even used steroids regularly on my inner elbows for years). However, my face took about 5 months to flare properly. I feel like my Protopic usage temporarily suppressed the skin on my face from going into full blown withdrawal flares.
7. If you could go back, would you use Protopic?
No. I only used it because my dermatologist convinced me it would really help, and was better than using steroids. I was also told there were no side effects from using Protopic. I never felt like it actually helped my skin. Occasionally it would look less red after an hour or two of applying, but my skin still felt really sensitive.
8. Thoughts on Protopic and your experience of using it.
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| Left - Dee's arm one month into TSW. Right - Dee's arm recently! |
The main thing I remember is the intense burning feeling after covering my face in Protopic. I would scrape all my hair off my face as the slightest feeling of something touching my face after applying Protopic would make me itch uncontrollably. If I (or anything) touched my face I would scratch until I had scraped all the cream off, and then have to wash my face, reapply, and try again. I’d usually sit next to an open window for an hour or so to let it soak in, as cold air was the only thing that helped with the burning.
Overall; not a nice experience, and at best, it would make my skin feel a little less sensitive and look a bit more calm for a day or two.
I know everyone is different, and if it works for someone else then great, but in my experience it’s just another attempt at a “quick fix”.
Also, I wish I’d been told about the risks and side effects before usage. I was prescribed it when I was at uni and over summer time. I wasn’t made aware of the risks of drinking alcohol or being in sunlight whilst using Protopic.
*1. Brief overview of your steroid/immunosuppressant use.
2009: Age 14, I was treated for eczema on my eyelids with Locapred (topical steroid). It worked well, but then in 2015 – a very stressful year for me on many levels – I had a small eczema patch on a finger on my right hand. I treated my hand eczema with Locoid (topical steroid).
2017: The eczema spread on both hands and I had a few patches on my neck+face. I was treated with Diprosone (high potency topical steroid) for body parts and Protopic (here it comes) for the face, alternating with Tridesonit (other name for it: Desonide, a topical steroid).
2019: Things are worse. I start having a red sore area on my upper lip, red around the eyes as well.
I am prescribed Takrozem (Protopic) again. I don't use much cortisone then, only "when i need it".
2020: I get unusual red patches on my face near the eye area.
April 2021: I get severe red patches around the eyes and that's when I discover TSW. I put cortisone on it for a few weeks then go blank and start my TSW on May 11th.
2. When did you use Protopic?
From June 2017 to end of 2020 (3y).
3. How much Protopic did you use?
3 tubes, one per year really.
4. Did you use Protopic during TSW?
No.
5. Did you use Protopic just before going into TSW?
No I stopped using Protopic around the end of 2020/early 2021, so a few months before, as I just couldn't bear the burning, itching sensation it gave me.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
Now that I think of it, my eczema was getting worse just with cortisone, but it's when I started using Protopic that I started to have more and more patches near my face, and more often, more red.
7. If you could go back, would you use Protopic?
A big NO! It was given to me as the only option to stop cortisone, but if only I'd known then I could have started TSW.
8. Thoughts on Protopic and your experience of using it.
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| 14.01.22: 8 months into TSW and Anna has seen so much progress! |
I decided to see a new dermatologist and after two meetings he prescribed Protopic. He was careful when prescribing it, saying it was a bit experimental if I recall correctly. But the thing is it was reallyy efficient despite the (horrible) burning pain! Like in one night POUF! no eczema. So it did enable me to have a good life for a few years, I would just patch it up with cortisone or Protopic ... but then it just got harder and harder to put on and it was painful, like the burning sensation was still with you even the day after.
I started to be more sensitive/allergic to things, just washing my hands was painful. So now I don't know if my TSW is actually a Protopic Withdrawal – probably is!! I haven't seen the doctor who prescribed it to me and maybe I will just to let him know how it all went to (TSW) hell..
On a more positive note I am now 9 months into TSW and I see more and more progress!
*
1. Brief overview of your steroid/immunosuppressant use.
I used steroids from time to time (not often at all) for 6-7 years for small patches of eczema/dry skin. I then got TSA after using more steroids after an eye infection. I used a lot for a year, before finding out about TSW and stopping completely. I was also prescribed Protopic during this time, used it a few times.
2. When did you use Protopic?
I used Protopic when my ”eczema” got worse and I was desperate.
3. How much Protopic did you use?
Not much – from what I can recall on my chest, neck and back? Maybe face also. A few times.
4. Did you use Protopic during TSW?
I did not use Protopic during TSW.
5. Did you use Protopic just before going into TSW?
I used it a few months before discovering what TSW was.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
I think it has prolonged my TSW and made it worse, since I’ve been in TSW longer compared to people who only used steroids. Also, I think it made me swell up more than others in TSW, my face was SO swollen and my eyes swollen shut in the beginning of TSW.
7. If you could go back, would you use Protopic?
I would NEVER have used Protopic if I could go back.
8. Thoughts on Protopic and your experience of using it.
Avoid at all costs! First of all it was really expensive, second of all it was superscary to use. After I put it on the skin it felt like my skin was burning. This was in the middle of the winter so it was cold outside, so I tried to go outside to cool down, but nothing would help the burning. Felt like my skin was on fire. It really didn’t work either, the redness just spread to my back. And it was so weird because I was so cold in places where I didn’t put it on. My feet were freezing. I think Protopic is why my TSW has been going on for so long, it just breaks down the skin's ability to function.
*1. Brief overview of your steroid/immunosuppressant use.
- Childhood use of topical steroids like Elocon.
- 1-2 years of Protopic use at age 17.
- 8 months of topical steroid use unknowingly (disguised as herbal cream).
2. When did you use Protopic?
When I was 17 (I’m 30).
3. How much Protopic did you use?
1-2 tubes.
4. Did you use Protopic during TSW?
No.
5. Did you use Protopic just before going into TSW?
No.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
Yes, my TSW was the worst on my face which was the only area I applied Protopic. I had raw patches that oozed and they were hard to heal.
7. If you could go back, would you use Protopic?
Absolutely not.
8. Thoughts on Protopic and your experience of using it.
It’s marketed by doctors as a steroid alternative. They assure you it’s safe to use long-term but ultimately, the withdrawal is similar. Why does it burn when applied on the skin? Are the side effects worth the red rash?
1. Brief overview of your steroid/immunosuppressant use.
Before TSW, I used topical steroids only occasionally and very carefully throughout childhood. As a teenager, I stopped as I figured the symptoms correlated with stress and I could actually manage that with daily exercise and dance, with the latter later turning into yoga and meditation. I also noticed that the skin didn’t like fried foods, which are inflammatory. So I just paid extra attention to having a super healthy vegetarian diet, which my skin loved and made me feel great. Imagine a lot of colorful veggies and fruits everyday, healthy oils, and otherwise a good balance. Sure, I flared on and off, but it usually went away with one or the other tweak. The flares functioned like a barometer for stress and nutrition, so they were quite informative.
During my early thirties, I developed a tiny rash where the glasses touch the nose. That was ultimately treated with topical steroids, which did not seem to help much, so I used it for a bit as prescribed, then stopped. It just stayed there and at some point, started to grow until my entire face was swollen and flaky. I think that also the body was affected, but was that TSW already? I don’t know and doubt it. But at some point in 2016, I got transferred to a dermatologist who immediately prescribed a cocktail of Prednisone, Protopic for the face, antibiotic and anti-fungal pills, and topical steroids for my arms. Things got better but from then on, it was really hard to keep the balance and microbiome happy, so I got more rounds of oral steroids and was eventually asked to use Protopic for life – because it was safe, supposedly. Now I am wondering if the initial tiny rash I had was fungal, and the anti fungal drugs helped, and I didn't need the other medication, but who knows – I got so many meds at the same time!
2. When did you use Protopic?
I used Protopic between late 2016 and early 2019. When I was first prescribed it in 2016, I am pretty sure that the dermatologist only told me to use it on my eyelids, but, later on, he told me to increase the area on which I should use it as the redness upon stopping had started to spread.
3. How much Protopic did you use?
At one point, I used it (almost) daily and I think twice a day, but am not 100% sure anymore.
4. Did you use Protopic during TSW?
The moment I started TSW was also the moment I stopped using Protopic.
5. Did you use Protopic just before going into TSW?
Yes, I used Protopic just before going into TSW.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
Although dermatologists think Protopic is safe, I would bet it affected my withdrawal. Why? When I used it, it worked like magic with almost immediate effect. No burning. Only a lovely face. But as soon as I reduced the amount or tried to stop, the area on which I had used it turned bright red. When I told my dermatologist, he said, well, then you have to apply it on those areas again. The next time I tried to wean off, the area that was bright red was bigger. Again, I was told to use Protopic on it. Ultimately, the entire face was red and the conclusion was I have to use it for life. When I stopped using Protopic and started TSW, the redness spread from the face to the neck and shoulders. It looks okay now, but the face and the areas closest to where I used high potency steroids (e.g., left elbow) are the ones where the skin is still healing.
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| Janina kindly provided this excellent collage of her skin at different stages. It says it all, really. Just incredible. |
I would not use Protopic again.
8. Thoughts on Protopic and your experience of using it.
From my experience, I think dermatologists are currently probably underestimating the potential risk of side effects from Protopic. Of course, they could tell you to pay attention with the sun due to the risk of developing cancer and to wear sunglasses when you are using it around the eyes. That side effect is extreme, so it is likely salient and scares them. But they should also pay attention to the possibility of withdrawal effects and especially look at or listen to patients describing how symptoms change when they try to wean off or reduce the amount they use. Just like with topical steroids, when the symptoms get worse every time the drug is stopped, that should be a bright red flag (pun unavoidable). I think the lesson from Topical Steroid Withdrawal should be that dermatologists who are currently optimistic about the promising alternatives to steroids look seriously at the possibility of similar withdrawal effects. To be honest, I am not sure if they are.
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1. Brief overview of your steroid/immunosuppressant use.
Steroid use on and off from baby "ezcema" age initially. Stopped for many years, then Betnovate on and off in my 20s and maybe some Hydrocortisone. Moved to the US in 1999 (29 years of age), and at some point in my 30s I was prescribed Tacrolimus (Protopic). I was then prescribed Triamcinolone 0.1% ointment, known as Kenalog (steroid). Then re-prescribed Tacrolimus as "eczema" was getting worse, but it soon stopped "working". Then prescribed Mometasone (steriod) in 2019 and was told to use as needed. Did so until summer of 2021.
2. When did you use Protopic?
I used Protopic (Tacrolimus) whenever my skin flared on my face, neck and elbow creases.
3. How much Protopic did you use?
I used just a teeny bit in each area but for a prolonged (several years) time frame.
4. Did you use Protopic during TSW?
No.
5. Did you use Protopic just before going into TSW?
I did not use Protopic just before going into TSW, "just" steroids". I last used Protopic in probably 2018 (my chart notes are a bit messed up as I changed doctors). I went into TSW in June of 2021.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
I am not sure if it has affected my withdrawal or not. I may have been going through Protopic Withdrawal when I had issues with the Protopic, then stopped, and I tried many different moisturisers and sun creams and shampoos to find something that didn't hurt – everything hurt.
7. If you could go back, would you use Protopic?
Absolutely not!!
8. Thoughts on Protopic and your experience of using it.
Protopic was great when I first used it – my skin looked great – although, I did burn even more than usual in the sun (I'm a redhead!). But, when it started to burn when using it I knew it wasn't good. I did not know anything about the black box warning.
My recall on my use of Protopic is not based on my chart notes as the doctor who first prescribed it (she was my favourite doctor ever and just following her medical teaching looking back), retired, and then I had two different doctors there, and then I had to go to a different doctor's office altogether as our insurance changed, but I think I was on Tacrolimus for several years and had it renewed a couple of times. I did find one chart note in 2013 that said do not refill in big red letters, but I feel like I got it again at some point. If I knew then what I know now, I would have avoided Protopic. Whether it has made my withdrawal from steroids worse or not, I'll never know, but the fact that my skin burned when I used it was enough of a warning sign for me to stop using it. Fast forward to 2021 and I met with a dermatologist just to see what they would say even though I knew at this point I was in TSW. He recommended I use Hydrocortisone over the counter, as it is just a mild steroid, and Tacrolimus. I explained how that had burned my face in the past so I didn't want to use it, and he said that yes he heard it could burn a bit upon application, but that some patients would put a cold compress on the location to numb it and then put the ointment on. I just nodded and ended the appointment and then emailed him the next day and politely declined his treatment option. Neither he, nor my doctor from earlier mentioned the black box warning that I have read about when using this medication.
*1. Brief overview of your steroid/immunosuppressant use.
So I’ve had eczema my entire life. Like many others, mine started when my mom stopped breastfeeding and introduced other food supplements. I immediately started getting eczema all over my body. I can’t remember not ever having to use some sort of medicated cream. Over the years the dosage and strength increased. It would work for a while then come back. It would also flare around stressful moments in life. In 2014 my skin was really bad and the dermatologist I went to at the time had me on Protopic, Elocon and another immunosuppressant cream (I can't remember the name) which I used on rotation. I remember my skin falling off and burning. My skin became super sensitive to everything, especially water. I was never told how long to use it for – they just said to use it twice daily or as needed and the only thing they told me was that my skin would be sensitive.
2. When did you use Protopic?
From 2014 for around seven years.
3. How much Protopic did you use?
I used it on rotation with the Elocon and the other immunosuppressant cream that I can't remember the name of. It was tricky as they told me to use it if I have a reaction, but to keep switching between the different medications. Honestly it's so confusing as they didn’t give me much information. Even though it was years ago, I remember her saying with Protopic, if it burns or gets sensitive to sunlight and water it’s normal, which always made me uneasy. I would get angry when I would use it because I knew it would hurt and sting when I took a shower.
4. Did you use Protopic during TSW?
No.
5. Did you use Protopic just before going into TSW?
Yes.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
Yes I believe it did affect my skin, the way my skin burns. I used Protopic in specific areas and those are the areas that are now worse during TSW.
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| Shauntaé sharing so much hope! |
No.
8. Thoughts on Protopic and your experience of using it.
With Protopic, I would say it gives you a false sense of healing. It heals your skin really fast, so you think you’re almost in the clear, but the addiction kicks in quickly so as soon as you start to taper off of it your withdrawal kicks in.
I would advise anyone to take a different route if they can from all steroids and immunosuppressant creams and ointments. It’s not worth it. What you see is just physical symptoms. There’s the emotionally draining aspect of how it affects your relationships with friends and family, how it’s a burden on your life, how you want to hide away from the world or stop yourself from going out because you are embarrassed and insecure about your skin flaking and falling all over the place. Or having to carry a huge bag of 'just in case' creams, wearing gloves in the summer or wrapping up your skin, the comments from people about your skin, the judgement and assumption you're doing nothing about it, self-esteem, lack of sleep and insomnia from being in so much pain and itchiness and over heating at night. The bleeding, cracking and oozing and the financial burden. Never ever again!
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1. Brief overview of your steroid/immunosuppressant use.
I've had eczema since I was a baby and used steroids on and off throughout high school. The only immunosuppressant I've used is Protopic.
2. When did you use Protopic?
I started using Protopic in late high school, along with topical steroids still, but my use of both was pretty minimal. In college I only used Protopic.
3. How much Protopic did you use?
Consistently for about 1-2 years. I used it because I didn't want to use steroids anymore, and I had been told by my dermatologist that Protopic was safe to use very generously on my face.
4. Did you use Protopic during TSW?
No.
5. Did you use Protopic just before going into TSW?
Yes.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
I'm pretty sure I'm in withdrawal from Protopic, not steroids. I haven't used strong steroids in years, and over the past year I have probably used OTC Hydrocortisone maybe five times in total. However, last summer (2021) I started noticing that my neck and lip were requiring more and more Protopic to have the same effect. I remember thinking that maybe since the tube had gotten kind of old that maybe it had just lost some of its potency ... I realise now that this doesn't really make sense hahaha and it was definitely that my body was addicted to it to some extent. I haven't used Protopic or steroids since last summer. As for withdrawal symptoms, I'm lucky in that I don't seem to have very many widespread effects, and that it has mostly just affected my lip and neck where I used the Protopic a lot! I've had extreme flaking almost constantly on my lips, but I will say I have noticed that any flare is less often and lasts a shorter amount of time now.
Whilst I know I'm lucky in that my flares are in smaller areas and not across my whole body, it has really affected my life and my confidence. I just want people to know that even if they are only using Protopic in one small place it can really ruin your skin.
One of the biggest symptoms of using Protopic is that my skin is just so sensitive to everything. Water, simple pressure (kissing my bf is a no :( ), and obviously I am not allergic to something like WATER, it's because my skin is so hypersensitive because of the Protopic use.
7. If you could go back, would you use Protopic?
I'd like to say I would go back and avoid using Protopic, but it was extremely helpful when I needed it. I wish I'd been more careful with it, and I wish that I'd been warned about the side effects and potential for addiction etc.
8. Thoughts on Protopic and your experience of using it.
I recently learned in nursing school that Protopic is an extremely potent immunosuppressant used for organ transplants (to be fair, it's not exactly the same formula that they use for the ointments, but it's still Tacrolimus) and I don't see how my moderate eczema could have needed that. At the same time, when I was a middle and high school kid (early college too tbh) dealing with facial eczema flares, I would have done ANYTHING to get rid of them and not have to feel self conscious going to school, so I don't really regret that I used it. I just wish I'd been better informed about other ways to handle my eczema, too.
Also, I was NEVER told about how much Protopic will MESS YOU UP if you're using it and you drink alcohol!!! When I was using Protopic, I noticed that whatever I drank, my lip and neck would get extremely red and hot (I flush when I drink anyway, but this was extreme and way more than the normal alcohol flush). I always was just kinda like "oh well, my eczema doesn't like alcohol" but then I read it's actually a known side effect of Protopic and I was just never told. I guess that's partly on me for not looking into it more, but you think my doctor would have mentioned that. I don't really drink anymore because it obviously is terrible for my skin and health, but I do occasionally and I don't have this problem anymore since I stopped using it.
Now I am hoping that with time my flares will get less and less. I love seeing everyone's stories on Instagram because it gives me hope that my skin will be better than ever when withdrawal ends!
*1. Brief overview of your steroid/immunosuppressant use.
I used steroid creams from 3 to 6 years old. After that I was symptom free until 2009 when I used Momegalen (mometasone furoate - a medium strength topical steroid) for a week, and again in 2020 for two weeks. After that I used Protopic.
2. When did you use Protopic?
I used Protopic exclusively from July 2020-September 2021 and also briefly in 2009 and 2015.
3. How much Protopic did you use?
I used 2 tubes (60g and 30g) between 2020 and 2021, twice a day, on affected areas such as my face, neck, décolleté, crook of arm.
4. Did you use Protopic during TSW?
No.
5. Did you use Protopic just before going into TSW?
Yes about 5 weeks before TSW.
6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
I have noticed that with Protopic the eczema has gotten progressively worse and spread all over my body to places it had never been affected before. It was whilst I was at a skin clinic that I was told about TSW and then never used it again.
7. If you could go back, would you use Protopic?
No, never again! Instead I would go to a skin clinic that works holistically without cortisone and immunosuppressants.
8. Thoughts on Protopic and your experience of using it.
I would never use Protopic again, this drug should be banned or needs better education especially about the side effects. These months in withdrawal are and were the worst months of my entire life, marked by brief suicidal thoughts. I couldn't work for 6 months and spent most of my time at home, which caused a high level of mental stress with sleep disturbances due to open, weeping, itchy wounds everywhere. Never again Protopic!
And lastly, two final (anonymous) accounts from those who used Protopic
Person 1
I used steroids pretty much my entire life. I got started on Protopic (I used a generic version just called Tacrolimus) because I had a bit of eczema on my upper lip and they told me that it was totally safe for my face! Soon, I quickly had eyelid eczema which I never had before. They advised me to keep using the Protopic, and it worked, but I noticed if I didn’t apply it around once a week it all came back strongly. I used for about a year before it slowly stopped working. I didn’t know about TSW at this point, and my derm advised Dupixent. I started Dupixent in March 2020. Everything cleared up, but 5 months in, the eye side effects of Dupixent were so severe I had to come off it. Slowly everything came back with a vengeance, specifically on my face and neck. I was prescribed Tacrolimus again and I used it for another 3-4 months before things just weren’t working anymore. I was prescribed a round of Prednisone pills, which really set off the TSW now that I’m looking back at it. I woke up with chills, my hair falling out in clumps, and eczema all over my face and neck. At this point I did some research and slowly learned about TSW.
I officially quit all steroids & Protopic in May 2021 and since then it’s been an absolute nightmare. I did a bit of NMT, then quit, and now I’m doing it again as lotions are far too painful to use.
I can very clearly see that the areas I used Protopic are by FAR the most damaged. I mostly used it on the right side of my face, and you can see the skin in those areas is thinner, more irritated, bruised, etc. I still ooze and crust. I can barely open my eyes in the morning or my mouth to eat. My body is doing pretty okay considering the circumstances, it’s really my face/neck and my right elbow and right shoulder (all areas I used Protopic thinking it was safe).
I highly regret using it, and I was told by my derms over and over it was safe. All the areas I used regular steroids have already healed, but the recovery from Protopic is taking far longer. I hope I get my quality of life back soon!
Person 2 (25-34) *This account can also be found in my TSW & THE GENITALS post (here)*
*I'm currently 33 years old, and I started using tacrolimus ointment when I was 28. I had developed a dry red rash on my penis and went to numerous doctors before seeing a dermatologist. The doctors tested me for STDs (the test came back negative, and I was tested again to be sure) and prescribed me triamcinolone, which was only mildly effective, and tried treating me for fungal infections, which didn’t help, before I saw the dermatologist. I was also in a long-term relationship at the time, and my partner was fine.
I had a biopsy taken, and the results didn’t really show much except for a lack of melanin. My dermatologist diagnosed me with vitiligo with inflammation and prescribed me 1% tacrolimus ointment. I wanted a second opinion, so I saw another dermatologist, and she said it was genital psoriasis. Protopic was deemed to be the solution to both problems.
I used it for about 5 years, and over time it was becoming less effective and my condition was spreading. I kept having to use more of it, and I was applying it daily, sometimes twice a day. I was worried something else was wrong with me that was only being masked by the Protopic, so I decided I was going to stop using it in February 2022. My dermatologist was pretty dismissive of my concerns, assured me it was vitiligo, and prescribed me desonide. I saw a urologist during this time also, and he didn’t have any answers for me either. I used the desonide some, but I didn’t want to put anything on it, so I stopped everything. It was about two weeks later that my psoriasis got really bad on my penis, and it was very red and bumpy. Over the next month, it got much worse: red, bumpy, swollen, oozing, and scabbing. I had pain, trouble urinating, and the folds of my skin were fusing together. I didn’t really know what was going on, I thought I had some disease that was repressed by the Protopic, and now it was back with a vengeance. I was just determined to leave my body to fight it. I only just realized that it was TSW that I was going through.
After about 2 months off the tacrolimus and steroids, I started to see improvements. It would get better for a while, then worse, but the first two months were by far the worst. I got a new dermatologist during this time, and he never mentioned anything about TSW. He didn’t know what it was, or what to do, and just told me to put Vaseline on it, which I did for a month then stopped. It’s now November 1, 2022, and my condition is doing quite well. I’d say it’s better than it was before I started taking the tacrolimus. I think I’m pretty much over the TSW now, and I’m just dealing with the original psoriasis like symptoms. I have started eating better, drinking less, and I quit smoking. Currently, I’m thinking that cigarettes caused my psoriasis or made it worse. I was never a heavy smoker, I just smoked moderately, sometimes once a day, sometimes none, sometimes up to around 3 on the weekends. I’m honestly quite embarrassed that it seems like I have gone through all this suffering for an occasional cigarette. Anyways, I’m feeling optimistic that eventually I can go back to completely normal, but time will tell. I feel very fortunate that I didn’t use Protopic in other places, and it has been a fairly fast recovery.
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A few weeks later, X contacted me to say that his skin is flaring right now and he’s feeling pretty demoralized as he thought it was over. He said, I mean, I know a lot of other people have it much worse, but it just really sucks to have this issue where I do as a man.
A little point I wanted to add is that whilst symptoms vary and range from full body to more isolated areas, suffering is suffering, and the mental toll of it can be devastating, no matter how small the area. But, to anyone reading, just look at what can happen with time, and how quickly things can change. Hold on x
* * *
Thank you so much to everyone who shared their experiences with this drug so openly and honestly. Whilst TSW symptoms can be so varied, and recovery times are so different, when it comes to the influence of Protopic, there seem to be patterns forming that cannot be ignored any longer.
Bottom line is this: Protopic should simply not be in circulation as a drug, either for 'Eczema' or for those going through TSW who need to use something – hell, it can cause TSW.
Again, I would like to take a moment to say that whilst I totally understand there will be people in this community who need to use something, and a withdrawal from all forms of immunosuppressant medication simply isn't an option (I hands down wouldn't have been able to go through TSW if my mum hadn't supported me emotionally and financially), I am concerned that as only the dangers of topical steroids are allowed to be shared and recognised, medical professionals will be forced to turn to these 'non-steroidal' 'safe' options like Protopic which might end up being worse than if someone had just stuck with topical steroids (remember, I'm not a medical professional and only sharing my non-medical opinion).
I have shared many times now my concern over the name, Topical Steroid Withdrawal Syndrome, which was thrust into this community a few years ago during a time when we knew the problems stretched further than topical steroids. If we are really getting down to it, I shouldn't technically be in this community if we are going by the name alone as, like I said earlier, I believe I had to go through TSW because of a mixture of oral steroids and Protopic (mostly Protopic). And so, by calling an iatrogenic condition, Topical Steroid Withdrawal Syndrome, for the people who have just used Protopic (or for example, an oral steroid, which I am noticing is more and more common), they might not get the urgent medical information which also applies to them because they think TSW only applies to topical steroids.
I think it's probably too late now to take TSW out of medical literature etc., and it has become so deeply entrenched within our community, but I don't believe it's too late for the the actual name of our iatrogenic condition to change. We currently have three names in circulation: there is Red Skin Syndrome (which was widely used before concerns were rightly raised as to it discriminating against other skin tones), there is Topical Steroid Addiction and now, Topical Steroid Withdrawal Syndrome.
Why does the condition have to specifically name topical steroids?
Can you imagine if there was just one definitive name out there instead of three weak and inaccurate ones that left the door open for others that have suffered because of medication that isn't topical steroids to walk through and join us in recovery.
We are one beautiful skin community, so let's not break it into pieces when it should be a whole.
Sending all my love and healing if you are suffering right now.
It gets better.
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: 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)
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