*
Welcome back to another post in my 'Let's Talk About' series, sharing the topics surrounding our iatrogenic condition that desperately need to be discussed.
Just like with my Protopic post, before I write another sentence, I'd like to start with some disclaimers:
- I am not a medical professional, and anything shared in this post should not be taken as medical advice.
- I think I have probably made my feelings clear on where I stand with these non-steroidal alternatives, so whilst I have never used Elidel ('just' Protopic), it is hard for me to remain objective when presented with what all this medication has done, and continues to do, in the treatment of eczema, other skin conditions, and TSW.
- This post is not intended to scaremonger, but to share experiences and information, because the only information out there right now is the insinuation that if something is non-steroidal, it is completely safe, and so people use these alternatives blindly believing they'll be totally fine when they would probably have been better off sticking with a topical steroid – trust me when I say that I don't write this lightly as I know how damaging steroids can be (first-hand), and I am certainly not offering medical advice here.
- To those who need to take some form of steroid or immunosuppressant as TSW simply isn't an option for them, please know that this post isn't meant to judge those who need to use this medication, or something similar, and if anyone is judging you, that is simply wrong. I just believe that people need to know all the facts so they can make an informed decision on what medication is right (or wrong) for them. Our community was formed because we didn't know all the side effects and suffered because of it. It all comes down to informed consent.
The structure of this post is very similar to the Protopic one and will be broken up into sections. I will be starting with Elidel; offering some background on the drug, exactly what it is, and some facts on it from the published information available to us at this time. I will then share experiences from those who have used Elidel, before following the same format with Eucrisa.
Just like I said in my Protopic post, I hope you find this informative, but do read with caution as the experiences (and even just reading the background of this medication) might be triggering for some.
ELIDEL (Pimecrolimus)
What is Elidel?
Elidel is the brand/trade name for Pimecrolimus, which is the generic name for it.
Pimecrolimus is an immunomodulating agent (something that 'stimulates or suppresses' the immune system) and part of a class of medicine known as topical calcineurin inhibitors. The other medication that is part of this dysfunctional family is Protopic (Tacrolimus). It is available as a topical cream and used to treat skin conditions like eczema in people who have not responded to other medications like topical steroids (this point is mentioned in literally every resource I found on Elidel).
Taken from the US Food and Drug Administration (FDA) website (here), Elidel (Pimecrolimus) cream 1%, sold by the pharmaceutical company, Novartis, was approved for use by the FDA on 13th December 2001 for 'short-term and long-term therapy in the treatment of mild to moderate atopic dermatitis in non-immunocompromised patients 2 years of age and older, in whom the use of alternative, conventional therapies is deemed inadvisable because of potential risks, or in the treatment of patients who are not adequately responsive to or intolerant of alternative, conventional therapies'.
Around the same time as Protopic, in 2002, Elidel was approved for medical use in the European Union for the treatment of moderate to severe atopic dermatitis. During my research into this medication, I came across this article from the website, The Pharma Letter (here), and I thought I'd share an extract from it as it perfectly sums up the state of things – that people are a disposable but valuable commodity and profit comes first:
With a US launch anticipated early this year, Elidel will be one of the first new treatments for eczema since topical corticosteroids were introduced almost 50 years ago, said Novartis in a statement.Specifically, Elidel is approved for the short-term and intermittent long-term treatment of mild-to-moderate eczema in patients over two years of age who do not respond well to, or may have side effects with, conventional treatments. In a note to clients, analysts at Swiss broker Julius Baer commented that the approved label for Elidel is slightly less advantageous than they had hoped for (ie it has been approved by the FDA for use in children aged two years and older, rather than those over one year).Recognizing this disappointment, Novartis said that it was committed to the development of the drug for use in infants, which make up a sizeable sector of the eczema patient population and for whom "the need for new therapeutic alternatives is significant." However, Julius Baer does not see this as a serious impediment to the prospects for the drug, noting: "we retain our 320 million Swiss franc ($193 million) sales forecast by 2004," they said.Other analysts also commented that Elidel is not a blockbuster product for the treatment of atopic dermatitis, as the global market for products treating this condition is currently valued at just 1.1 billion Swiss francs. However, Elidel has clear advantages in terms of its side-effect profile, as it is free of the adverse events usually associated with steroid drugs, such as skin atrophy and growth retardation in children.
In March 2005, Protopic and Elidel were given a black box warning by the FDA due to their possible cancer risk (skin and lymphoma), but eczema organisations like the NEA (National Eczema Association) are trying to dilute concerns surrounding these findings (see the article they wrote about black box warnings, just one day after my post on Protopic *here*). Thanks to Lia (@tsw_sojourner), who was part of my Protopic post, for sharing the article, Association Between Topical Calcineurin Inhibitor Use and Risk of Cancer, Including Lymphoma, Keratinocyte Carcinoma, and Melanoma (here) which says that lymphoma risk was elevated with the use of Topical Calcineurin Inhibitors. I have already discussed in my Protopic post (here) that in my teens I had to go to the hospital to get photos taken after developing liver spots as a result of using Protopic, so I massively roll my eyes at the attempt to suppress such serious side effects.
The most common known side effects of Elidel in medical literature are listed as:
- Burning or warm feeling (at the skin application site).
- Mild infections (including flu and other viral infections like the common cold).
- Headaches.
- Swelling in the nasal passages and at the back of the throat, which can cause a bunged up nose or sore throat.
All symptoms are said to subside after a few days.
More serious side effects that are reported, but allegedly rare, are:
- Serious infections (signs of infection include: high temperature, swollen lymph nodes and a persistent, sore throat).
- Allergic reactions (which includes dizziness, trouble breathing, irritation and swelling).
Something interesting to also mention is that during clinical studies, there were apparently reports of skin warts in children, but interestingly, no warts were reported in adults who used Elidel.
It is very hard to find an article online that doesn't mention Protopic in the same breath as Elidel, which makes sense, I suppose, seeing as they were literally developed around the same time ... approved at the same time ... in the same class of drugs (that they are the only members of) ... topical immunosuppressants ... and, after reading people's experiences with them, share very similar side effects.
With that being said, I will pass it over to the wonderful people in our community who have kindly shared their experiences with Elidel:
Jess (@jessie.tsw)
18-24
*1. Brief overview of your steroid/immunosuppressant use.
Throughout my childhood, I used Locoid and Advantan very occasionally for the inside of my elbows and backs of my knees, but my eczema was pretty well controlled. I have used seretide inhalers and steroid nasal sprays for as long as I can remember (I had no idea either contained steroids). I began to get patches of eczema on my face in 2013. From this point I began using steroid creams such as Eumovate 0.05% cream on my face sparingly until I was given Elidel in 2017 and continued to use Locoid and Elocon for the eczema on my body.
2. When did you use Elidel?
I was given Elidel during my second year at University (2017). This was the first time I ever saw a dermatologist for my skin. I think I used it on and off for about 6 months but later developed really bad light sensitivity and finally realised it was the Elidel causing it. I then only occasionally used it until this last year (2021) when I saw another dermatologist and she prompted me to use it again. I think I used it on and off for 2 months, but this time avoiding the eye area (because that’s where it burned last time, not because my dermatologist told me to avoid that area).
3. How much Elidel did you use?
Can’t recall exactly how much but maybe 2-3 tubes worth between 2017 and 2021.
4. Did you use Elidel during TSW?
I used it twice during my first week as I didn’t realise initially that it contributed towards TSW as I was told it was a safe alternative to steroids.
5. Did you use Elidel just before going into TSW?
Yes, the 2 months prior to going into TSW.
6. Do you believe that Elidel has affected your withdrawal, and if so, how do you believe it has?
Yes, once I started using it the eczema on my face spread and began to worsen. I believe it is what kicked me into TSA. This is when the eczema began to change from normal dry eczema patches to hot red uncontrollable skin.
7. If you could go back, would you use Elidel?
Absolutely not.
8. Thoughts on Elidel and your experience of using it.
I think it is terrible that Elidel is now being promoted as an alternative to topical steroids and that doctors are claiming to be incredibly safe. At least with steroids I was aware that overuse can possibly lead to thinning of the skin so I was very cautious about my applications, but with Elidel I was told I could use as much of it as I wanted as often as I wanted. When I first started using it I developed really bad light sensitivity where sometimes people would have to walk me home because I couldn’t open my eyes and it burned so badly. Once I realised it was the Elidel I stopped using it immediately.
Around 4 years later when I saw another dermatologist, she highly recommended I start using Elidel again since I kept insisting that the steroids were no longer working. When I told her that it really burned and that it gave me terrible light sensitivity she told me ‘you just have to push past the burning and eventually it will get better’. I completely regret ever using Elidel and it terrifies me that more and more people are using creams like Elidel as the medical community start realising the dangers of topical steroids.
Amy Nicole (@mummy2oakley)
25-34
*1. Brief overview of your steroid/immunosuppressant use.
I have had eczema on and off since I was a baby but recently, in the last year, I’ve used steroid creams and also tablets on and off for the last 18 months. I've used other immunosuppressant tablets for the last few years, too, and Dupixent (which didn’t work for me).
2. When did you use Elidel?
January to September 2021.
3. How much Elidel did you use?
I used it pretty much everyday, but if not everyday, definitely every week!
4. Did you use Elidel during TSW?
No.
5. Did you use Elidel just before going into TSW?
No. It started to stop working and not be as effective so I began to question it. I couldn’t stand the burning when I applied it and the sensitivity to light and heat (even when I would open the oven). I didn’t know about TSW until probably about Sept 21 and that’s when I stopped Elidel. I then used more steroids on my face and body nearly everyday and Protopic cream, too! I stopped using steroids etc in December 2021.
6. Do you believe that Elidel has affected your withdrawal, and if so, how do you believe it has?
I believe I’m in withdrawal from steroids and Elidel/Protopic as I used them all round my eyes and lips and that’s where I now have redness, burning, itching, flaking, and much worse than before I used all those creams!!
7. If you could go back, would you use Elidel?
I would never use Elidel again and even though it gave me some relief at first, I wish I’d never used it!
Michele (@mazzommw)
55+
*
1. Brief overview of your steroid/immunosuppressant use.
Mild eczema since I was a child, but not treated with steroids until I was a teen. Continued use of topical steroids, oral, and systemic for well over thirty-five years, with Elidel being the main topical used in the last 7 years. Used these treatments very judiciously. In fact, I think I've been in TSW for the last 15 years because I was always going off of the medicine or using a very little amount.
2. When did you use Elidel?
Although I was prescribed Elidel by my derm, it really became front and centre when I started Dupixent in 2018. The allergist told me to use Elidel on my eyelids when my face and eyes continued to flare after starting Dupixent. I was reticent, but he assured me that "it wasn't a steroid". He was uninformed and I was fooling myself. Stopped Elidel and all topicals and orals in Oct 2019. Stopped Dupixent in March 2020 after two years of use (2018-2020).
3. How much Elidel did you use?
Again, a tube would last me a year. Applied very judiciously and only on the face and eyelids. Kept trying to stop, that's why my face/eyelids were constantly flared for years – even when on the medications.
4. Did you use Elidel during TSW?
No, I went off of all topicals in Oct 2019 and then off Dupixent in March 2020 after two years of use. No use of Elidel since Oct 2019. I started TSW in Oct 2019 and remained on Dupixent for six additional months. Have been off of everything since March 2020. Yay me!!
5. Did you use Elidel just before going into TSW?
Yes. Limited Elidel use for 7 years before TSW.
6. Do you believe that Elidel has affected your withdrawal, and if so, how do you believe it has?
My main topical for years has been Elidel so I truly believe that it has contributed greatly to my TSW.
7. If you could go back, would you use Elidel?
Absolutely not. The Dr gave me very bad advice to continue Elidel while on Dupixent. Especially on my eyelids!!!
8. Thoughts on Elidel and your experience of using it.
Steroids and Elidel. Both have caused a severe TSW experience for me. Two years later and my eyelids are still constantly flared, itchy and peeling; I rarely have a "normal day". I am making progress for sure, but still have a way to go. I do believe the use of Elidel on my eyelids has caused constant issues with my actual eyeballs which remain dry and irritated. I am under the care of an optometrist who is understanding.
Lena (@lena.goes.tsw)
18-24
*1. Brief overview of your steroid/immunosuppressant use.
Topical steroids on and off from January 2020 until October 2020 (including Hydrocortisone, Mometasone Furoate, Prednicarbate).
Oral steroids for 12 days in May 2020 (Prednisolone).
Elidel from August 2020 until November 2020.
2. When did you use Elidel?
From August 2020 until November 2020.
3. How much Elidel did you use?
Twice a day.
4. Did you use Elidel during TSW?
No.
5. Did you use Elidel just before going into TSW?
Yes. I stopped topical steroids in October 2020 and continued to use Elidel until November 2020. When I stopped Elidel, I immediately went into a terrible withdrawal.
6. Do you believe that Elidel has affected your withdrawal, and if so, how do you believe it has?
While using Elidel, my TSW symptoms did not show. Only one day after stopping Elidel, my withdrawal syptoms started to show. I think that Elidel suppressed my TSW symptoms and did not help with weaning off of them. I feel like the areas where I applied Elidel are now way more affected by TSW than the areas where I solely put topical steroids.
7. If you could go back, would you use Elidel?
No.
8. Thoughts on Elidel and your experience of using it.
Elidel might help with small flare ups when you have atopic dermatitis but in my experience it is not suitable to treat or help with TSW. In my case, it only suppressed the TSW symptoms for as long as I used it and I immediately went into TSW when I stopped Elidel. I already had TSW symptoms in July 2020 that were then treated with topical steroids and Elidel. These symptoms were not nearly as severe as my symptoms in November 2020 when I finally stopped everything. The only difference between these two points was my Elidel use. From my point of view, it might be that Elidel even worsened my TSW symptoms once I stopped using it. I would not recommend using it.
Lilyanna (@lilyannar)
35-44
*1. Brief overview of your steroid/immunosuppressant use.
Baby to 27 years old use of topical steroids (stopped breathing as a baby and was injected with steroids as treatment in ER. Coincidentally developed eczema right after the steroid shot and then continued TS and oral steroids treatment. My belief is that the steroid shot I had was the beginning of my downfall.
I discovered TSW when TS and oral steroids were no longer able to to hide my condition. Mt first attempt at TSW was when I was 27 years old, but due to several hospitalisations, I succumbed to pressure to use steroids and immunosuppressants after 3 years of TSW.
From 30 - 32 years old, I used immunosuppressants (Methotrexate and Cyclosporine), but knowing the following treatments would not work, I began my 2nd attempt of TSW at 32 years old. Treatment: NMT. Total steroid use, almost 30 years.
2. When did you use Elidel?
This was prescribed when I was 10 years old due to my ‘eczema’ spreading to my face. Looking back, it was definitely the beginning of my TSW journey, but the medicine was able to push it under the surface for a little bit longer.
3. How much Elidel did you use?
As per doctors orders, whenever I felt the need to. I would be prescribed bags full of Elidel and TS as the doctors saw it was covering my body in its entirety.
4. Did you use Elidel during TSW?
No.
5. Did you use Elidel just before going into TSW?
Yes, I never used steroids on my face, only ever Elidel for many years (17 years).
6. Do you believe that Elidel has affected your withdrawal, and if so, how do you believe it has?
Seeing as I never used steroids on my face, my face was hit really hard.
7. If you could go back, would you use Elidel?
No.
8. Thoughts on Elidel and your experience of using it.
It’s all a Band-Aid effect. All TS and Elidel did was push my skin condition deeper into itself until it could no longer handle it and it pushed back through all the barriers to come to surface in full force.
Sunpreta (@tsw_healin)
0-5
*
***Sunpreta is sharing the experience of her cousin's sister who used it at three years old (although Sunpreta is going through TSW, too). This poor child's story is not just about Elidel, but sheer medical negligence (it's honestly heartbreaking), and it shows the impact Elidel can have and why it should be avoided during TSW and in the treatment of 'eczema'.***
1. Brief overview of your steroid/immunosuppressant use.
My cousin's sister was diagnosed with eczema when she was only three months old and was prescribed Fluocinolone 0.01, and we used it as prescribed. When we look back now, her rash was actually just a diaper rash, it wasn't even eczema in the first place, but we used the creams as prescribed. When she turned one her "eczema" returned, so we went to the docs and they again sent us back with topical steroids. We used them on and off for around one year, as prescribed, and later when the creams stopped working, they gave her Clobetasol and told us to use it for two weeks, and when the rash reappeared, they told us to use Tacrolimus (Protopic). We did everything they said, but the burning whilst using Protopic would make her cry for hours. As a result, they asked us to keep it in the refrigerator and then use it until the skin was "okay" using it.
2. When did you use Elidel?
Suddenly, they told us to switch from Protopic to Elidel (we still don't know why) when she was around three years old. At this point, her body was burning red. We used the creams as prescribed, along with the Elidel, but at every monthly visit they would advise us to use more Elidel. She used it for roughly 6-7 months.
3. How much Elidel did you use?
We emptied 5 tubes and STILL have 3 sitting in our cupboard.
4. Did you use Elidel during TSW?
No.
5. Did you use Elidel just before going into TSW?
We used it just before stepping into the withdrawal process.
6. Do you believe that Elidel has affected your withdrawal, and if so, how do you believe it has?
Yes. We creamed her so much in Elidel that I think it made her entire withdrawal process so much longer.
7. If you could go back, would you use Elidel?
I wouldn't recommend Elidel to my worst enemy. I think Elidel is much worse than any steroid cream. Undoubtedly it made her skin clear when we first started using it, but over time, we needed to use it more and more to get the same effect until she was using it EVERYDAY.
8. Thoughts on Elidel and your experience of using it.
It was a very difficult time, and sometimes this gaslighting scares me to a point where I can't breathe. Destroying someone's health for money is too develish to be real.
Tamara (@chronically_tam)
18-24
*1. Brief overview of your steroid/immunosuppressant use.
I got prescribed steroids when I was only one years old. During childhood, my eczema disappeared. Around my teenage years, I got mild eczema (only during summertime) and used steroids again. It got to a point where my skin was so bad that they put me on immunosuppressive medication (Ciclosporin). It was only a short-term solution and made everything worse. After that, I used Dupixent, but when my eyes got really bad (side effect of Dupixent), I was put on Elidel.
2. When did you use Elidel?
Last year, during the time I was on Dupixent.
3. How much Elidel did you use?
Not much more than a tube.
4. Did you use Elidel during TSW?
At the time I didn’t know that the thing I was experiencing was TSW (after Ciclosporin use). So looking back, I did use it during TSW.
5. Did you use Elidel just before going into TSW?
No.
6. Do you believe that Elidel has affected your withdrawal, and if so, how do you believe it has?
Definitely! The areas I applied this cream on are the worst affected to this day.
7. If you could go back, would you use Elidel?
NO!!! I would try to avoid any medication/salve possible. My experience is that all these things made things so so much worse. I even got more allergies, which resulted in tube feeds.
8. Thoughts on Elidel and your experience of using it.
I told my dermatologist about my concerns regarding steroids and her reaction was to use Elidel instead as it was SAFE to use. To this day I can’t understand what is safe about this. The only side effect, according to her, was a burning feeling when applying. The burn was so bad, especially on my eyelids. Numerous times I tried to take it off with water, but it only made it burn more. The burning should have been a warning sign. No way burning should be considered okay and not harmful. Even the best specialist in my country for eczema thinks it’s safe to use steroids and non-steroid salves and medication. This seriously needs to change.
Andrea
35-44
****Note from Cara: Andrea's experience with Elidel is fascinating because it shows exactly what this medication is capable of on its own. Like I said above, it's difficult as so many of us have used a cocktail of different steroids and immunosuppressants so it's hard to be able to offer categorical proof that a specific drug that isn't a topical steroid can cause withdrawal symptoms, too. Andrea's experience shows that it's possible, even when Elidel is used sparingly in the short-term x***
1. When did you use Elidel?
I was prescribed Elidel at the end of October (2021) when I rushed to my dermatologist with a sign of perioral dermatitis near my mouth. I was not using any steroids so I have NO idea what triggered it.
2. How much Elidel did you use?
I began using it sparingly on and off over the following 3 months.
3. What has been your experience of using it?
In early Feb when I realized it was never fully working AND that it could have a withdrawal effect, I stopped cold turkey. At that point, I had the worst flare ever!! Red and painful. My skin was irritated and inflamed in all the exact areas I used the cream.
Thankfully, in the PD support group, someone helped me realize my issue was likely demodex mites!! (Because I had spots near both eyes and it traveled). It definitely made sense. I instantly began sulfur/tea tree oil regimen and within days, my skin cleared!! I still don’t know how my PD started, but possibly the masks. Or hormones? It’s been 3 weeks and I’m still randomly seeing spots pop up, but I’m 90% better. I’m also taking oral ivermectin once a week, but next week will be my 4th and last.
4. If you could go back, would you use Elidel?
I will NeVeR, ever use Elidel again!!!
Lacy (@lacyhough)
45-54
*1. Brief overview of your steroid/immunosuppressant use.
In my late teens I developed what seemed like contact dermatitis on the palms of my hands. I was a manicurist at the time so I figured it was from the chemicals I was working with. I soon had a few spots on my face as well. I went to a Dermatologist and that’s when the topical steroids began. I was 18 years old.
2. When did you use Elidel and how much did you use?
My Elidel use didn’t begin until years later. Probably because it was new on the market as a ‘non steroidal’ treatment. Being too trusting I thought I’d give it a try on my hands. I filled the prescription but soon found out I was pregnant with my son so I held off using it or any other topical steroid. This was about 9 years ago.
My skin flared badly all through my pregnancy. Even to the point that my obstetrician would ask why my skin was rashed. I had small wounds on my hands, arms and feet when I was delivering. After I finished nursing my son I started to dabble in applying Elidel to my hands. Because it was on my hands it for sure touched my face. I might have applied it sometimes to my upper lip but I thought I was being careful not to apply ‘too much’. I used it for about a year before TSW.
3. Did you use Elidel during TSW?
I did not use it during TSW.
4. Did you use Elidel just before going into TSW?
Yes I stopped it just about a month before when I ran out.
5. Do you believe that Elidel has affected your withdrawal, and if so, how do you believe it has?
I believe it affected my TSW in the way that it is a systemic drug. I experienced full body TSW for the first year. My entire body was covered in rash except the soles of my feet.
6. If you could go back, would you use Elidel?
If I could go back and I knew that it would’ve caused what it did, NO!
7. Thoughts on Elidel and your experience of using it.
I wish the black box warning was made clearer. I wish I would’ve been more diligent in my research as I am now. I think physicians and pharmacists should show photos of people going through TSW and have more information available when someone is prescribed steroids or non steroidal treatments for skin issues.
Olivia (@oliviamurrayactress)
35-44
*
1. Brief overview of your steroid/immunosuppressant use.
No eczema to speak of as a child (small patch behind ear as a baby). My brother was badly affected by eczema. I was the lucky one who had no skin issues at all.
Teens: Mild rash on one arm at about 14 (it was so unusual I drew a picture of it in a diary!). Went to doctor and suspect that they gave me some mild steroid. I started the journey on steroids at that point and used the cream occasionally and when the rash appeared (not that often).
20s: Some stress triggered rashes appeared on neck / back / eyelids – prescribed steroids. Started to go up the steroid ladder. By late 20s started to get eczema on hands which became increasingly severe. Eventually using the most potent steroid on hands (Dermovate).
30s: Hands now classed as severe eczema – no other areas really troubled me – the hands issue had been going on for a decade and increasingly not managed even with Dermovate. The only other patch (arm crease) ‘managed’ with occasional use of steroids.
By my late 30s, after getting ill in 2014 with amoebic dysentery, I started to have patches of ‘eczema’ on my face above lip and other unusual (for me) areas – e.g. legs. I was convinced it wasn’t eczema because of the delineated appearance etc, but didn’t know what it was. Neither did the doctors, and I had a plethora of tests and various courses of oral steroids as well as the usual topical steroids (different ones for different parts of my body). I was now under Guy’s Hospital and was offered, but declined, Azathioprine as I was wanting to try to conceive. Things settled slightly for a period with steroids etc. I now realise these signs were TSA. I left my full time job as a lawyer and went part time, then took a sabbatical, then finally left and started to try to build a freelance career.
Early 40s: During pregnancy, I was reluctant to use as many steroids (even though doctors said I should and that it was fine for the baby – something I have since found may not be quite as straightforward as implied). So without realising it, during pregnancy, I started to experience TSW – particularly during the third trimester. The obstetrician was shocked by the state of my hands and arms and told me to go back on Dermovate or that oral steroids were going to be needed. I reluctantly relented. The symptoms were slightly (though definitely not fully) suppressed during birth and for a few months thereafter. Things started to get worse over the first 6 months postpartum and I finally discovered the TSW community and realised my appearance and patterning was pretty much identical to many other TSW sufferers. I stopped steroids properly on 1 June 2020.
2. When did you use Elidel?
Not sure when was the first time, but I was definitely using it in 2015. Generally during this period I would use steroids off and on to control / mitigate occasional flares or before important events. For the face flare-ups (which were a new thing for me, since late 2014) I did use Elidel – I was prescribed Pimecrolimus (Elidel) 1% “to face” Jan 2015 “as preventive max 7 weeks”. I was told to not use it if going in the sun. It seemed to have some success, but I was also prescribed steroid cream to (“sparingly”) use on the face (Clobetasone 0.05% cream) at the same time in January 2015 and (also to the face) Daktakort (2017 /18). At this time I was also being prescribed steroids for the body (Mometasone 0.1% and Elcon and Dermovate for the hands).
3. How much Elidel did you use?
See above – but it’s the usual story. Initial prescription limited (to, in my case, 7 weeks) but when flares came back eventually I recall it would be resumed as an option for another limited period. There were also occasions when the GPs weren’t that familiar with the medicine so I would request it and they would look it up and then prescribe.
4. Did you use Elidel during TSW?
With hindsight, I exhibited signs of TSA in late 2014 – so in that sense, yes. But I didn’t knowingly totally stop steroids and commence TSW until 1 June 2020 by which point I had not used Elidel for a few years (as I had not used it when trying to conceive or when pregnant).
5. Did you use Elidel just before going into TSW?
See above. Not really – although I was using it when showing signs of TSA without realising that’s what it was.
6. Do you believe that Elidel has affected your withdrawal, and if so, how do you believe it has?
I don’t think it’s a particularly strong factor in my withdrawal given the many other steroids I was using in the run up to my official TSW start date.
7. If you could go back, would you use Elidel?
No.
8. Thoughts on Elidel and your experience of using it.
I was always quite cautious with it (partly because I didn’t, after a while, find it very helpful and partly because I didn’t like the idea of the photosensitivity issue). I would certainly have done more careful research had I been aware of TSW and been looking into these non-steroidal alternatives – I would then have come across the reports of issues with these calcineurin inhibitors.
Victoria (@vics_skinjourney_)
18-24
*1. Brief overview of your steroid/immunosuppressant use.
I used topical steroids irregularly during teenage years, then no steroids for about 4 years after that as my eczema “disappeared”. As of 2020, I had a reaction (unknowingly) to the washing powder I was using. I used Hydrocortisone on my face & neck for 6 months until that stopped having an effect. At that point I was prescribed Elidel which I used for 6 months before discontinuing.
2. When did you use Elidel?
Started using Elidel in April 2021 and stopped October 2021.
3. How much Elidel did you use?
Very small amounts, x2 daily for about 3 days straight, every 1-2 weeks. Application to face & neck.
4. Did you use Elidel during TSW?
No. I started using Elidel on my face & neck when Hydrocortisone stopped working. I was still using steroids on other parts of my body.
5. Did you use Elidel just before going into TSW?
I stopped using Elidel 3 weeks before I stopped using all steroids.
6. Do you believe that Elidel has affected your withdrawal, and if so, how do you believe it has?
Yes. Rash on my neck has spread even more during my TSW. Also have new areas of patchy, red skin on my face where I hadn’t even applied Elidel or steroids.
7. If you could go back, would you use Elidel?
Absolutely not. If I had known that it causes withdrawal then I’d have never touched it.
8. Thoughts on Elidel and your experience of using it.
I was prescribed Elidel by my dermatologist in March 2021 while at the same time on a 6 week course of Prednisolone and starting Ciclosporin. After I finished my course of Prednisolone in April 2021, the rashes started to reappear, particularly on my face & neck. At first I was reluctant to use Elidel, but I was desperate & knew I never wanted to use steroids again on my face. I followed my dermatologists advice, he told me it was completely safe and that I could use it everyday for the rest of my life. The only warning I was given was to be careful in sunlight after application as I could develop skin cancer. After just one day of application, I was amazed as by the next day the rashes were gone. As time went on, the rashes were spreading to new areas on my face. By month 5/6 of using the cream, it was getting to the point where I couldn’t even go a day without using it and was not having the same “skin clearing” effects.
SD
25-34
*1. Brief overview of your steroid/immunosuppressant use.
I remember starting to get patches of eczema on my wrists and upper lip at around age 4 and was prescribed steroids (not sure what class but I think Betamethasone Valerate 1% or something) and used a steroid nebulizer for my asthma from 4-9ish (though I don't ever remember having any asthma attacks and I don't have asthma now). From aged 12 onwards, my eczema was barely there and I used the creams sporadically when I flared. At 16, I started Protopic and Elidel when I visited a derm and told them my concerns about steroid skin thinning etc. Around that time, I was also using Hydrocortisone 2.5% for my body. I think I dabbled in Hydrocortisone 2.5% a little bit daily to keep my eczema at bay and thought it was like a "magical vaseline". I NEVER thought about any side effects because NO DOC or DERM ever warned me about taking breaks and I even remember thinking I would be OK using it every day for the rest of my life (LOL). So I pretty much used steroids and Elidel/Protopic at least 4-5 days a week since I was 21. Then, aged 24, I started to have worsening eczema symptoms and knew something was off, and even came across TSW, but didn't think it could be me (I was probably in denial). I had a new Derm who kept on prescribing me stronger steroids (told me to use Clobestasol for a week or two) telling me I needed it and it would be completely safe for my skin, and even introduced me to Eucrisa, which I used for 3 days and hated it! Looking back, I think my TSW started in 2016, but it took me until 2019 to realize what was going on and to completely go cold turkey.
2. When did you use Elidel?
I began using Elidel in 2008/2009 ish.
3. How much Elidel did you use?
I used it quite sparingly because it was so expensive (which I'm glad about) and between Elidel and Protopic in their 30g tubes, I would say for the 10 years that I used them, I probably went through 3 or 4 tubes total, not even!
4. Did you use Elidel during TSW?
Nope.
5. Did you use Elidel just before going into TSW?
No, I stopped Elidel about 2 years before going into TSW and was weaning off Protopic before TSW in 2019.
6. Do you believe that Elidel has affected your withdrawal, and if so, how do you believe it has?
I do :( Unfortunately, I used mostly Elidel/Protopic on my face, and compared to others that just used steroids on their face, my face was just terrible and I had so many problems – lots of oozing, crust, flakes, pimples, and acne!
7. If you could go back, would you use Elidel?
EFF NO.
8. Thoughts on Elidel and your experience of using it.
I'm just disappointed in the Derms, really. I would not touch or recommend Elidel, Protopic or Eucrisa to anyone. There's not enough information on long-term side effects and its mechanism anyways. If I were to go back, and HAD to use something on my face, I would choose an OTC cortisone over Elidel/Protopic/Eucrisa (but really, I would like to have just stopped using steroids much earlier in my life).
Audrey (@Audrey.pavik)
18-24
*
1. Brief overview of your steroid/immunosuppressant use.
I had eczema, but my mom was always skeptical of topical steroids so she held off using them on me for a while till late middle school/early high school when my eczema started to get worse. I had also been getting the allergy shot since I was in elementary school up to high school. My Freshmen and Sophomore years were very stressful and that was never taken into account that stress could be causing a bad flare up, but my allergist insisted on me starting topical steroids; Desonide and Triamcinolone. My back during this time was the worst – always itchy, red, and hives.
2. When did you use Elidel?
Around my junior year of high school my eczema was getting worse again and they were trying to get me approved for Dupixent, but because I wasn’t 18 yet, and it was a fairly new drug, I started Elidel instead.
3. How much Elidel did you use?
I used it as prescribed at first, which was to use it for two weeks then stop, and if it got worse, to use it again. I would use a little dash of Elidel on my flared up spots which were mainly my arms, wrist, thighs and behind my knees, and it would bring down the redness and itchiness a lot. In my senior year, when I noticed symptoms had moved to my neck and parts of my face, they said I could use Elidel on my face, because it’s not a steroid and they were already telling me to put a steroid around my eyes, I don’t remember the name of it. Dupixent (which I was finally prescribed) was also a huge help so I wasn’t using the Elidel as much. Unfortunately I started using Elidel again in August 2021 because I noticed my skin was getting worse. My breaking point was when Dupixent stopped working and the Elidel wasn’t working how it used to, so I went back to my allergist and they recommended Prednisone, which I took. My skin cleared up in 2 days and it was great and I was comfortable for that week, until my skin got even worse after that and so I stopped using everything – Elidel, Dupixent, the Prednisone, on January 15th because that is when I discovered TSW.
4. Did you use Elidel during TSW?
No.
5. Did you use Elidel just before going into TSW?
I used a little bit of Elidel before TSW but it didn’t help much.
6. Do you believe that Elidel has affected your withdrawal, and if so, how do you believe it has?
I’m not sure if Elidel has made my withdrawal worse. It could be everything I’ve been using for the past 6 years, but it also could’ve been my breaking point. My doctors made Elidel sound like the miracle drug because it had no steroids in it and that it was the better option.
7. If you could go back, would you use Elidel?
If I could go back, I wish I known the side effects of all these medications, but I would probably still use Elidel over the steroid creams.
8. Thoughts on Elidel and your experience of using it.
My thoughts on Elidel now is that it's just as bad as the steroid creams. Thinning of the skin was a big side effect and its crazy how doctors throw these medicines left and right knowing all of these symptoms.
Silvia (@silgonque)
35-44
*1. Brief overview of your steroid/immunosuppressant use.
I started using steroids when I got really bad bronchitis. Got a rash after that, but never connected the two. After that, my skin was kind of sensitive (which it had never been before). Some years later, I went to an allergy doctor who pumped me full of Dexamethasone and prescribed TS and Elidel.
2. When did you use Elidel and how much Elidel did you use?
I used Elidel somewhere along the way when I was being treated by that allergy doctor. I didn’t use much – maybe a couple of tubes (compared to the amount of Dermovate I did use) but some of it was on my face.
3. Did you use Elidel during TSW?
I didn't use Elidel during TSW.
4. Did you use Elidel just before going into TSW?
I used it right before.
5. Do you believe that Elidel has affected your withdrawal, and if so, how do you believe it has?
Yes, for the amount of time I’ve been in TSW I think it did affect it. I’m well over two years in and there doesn’t seem to be an end in sight and the itching and oozing are at an all time high.
I don’t have a lot to say about Elidel specifically because I was also using steroids at the time, so I don’t think I’ll ever be able to tell the difference between the effects of one or the other.
Something I'd also like to say is that I think it's taken me a really long time to heal because I didn't use steroids/Elidel my whole life – I started using them in my mid-twenties, I think, and stopped at thirty-three, so it's not like I'd been using steroids etc. my whole life like other people in TSW.
Jo
45-54
*
1. Brief overview of your steroid/immunosuppressant use.
Childhood eczema, no issues beyond the age of around 5/6. Generally atopic – allergies, hayfever etc. but not causing major issues. Mild “eczema” around eyes / nose in late 20’s/ 30’s/ 40’s (I am 48 now) treated with Hydrocortisone, but over time getting progressively stronger. I was also given topical Clindamycin & Protopic when I was living in USA. I would use sparingly & only needed occasionally. No issues until pandemic – I was using Hydrocortisone 2.5% on my face and would flare every time I stopped, so used constantly. Had a period of clear skin January 2021 and stopped Hydrocortisone, but then I started getting burning and redness, and could not even tolerate water on my face. I started getting infections, too, so I was given antibiotics & Elidel.
2. When did you use Elidel?
I used Elidel from approximately March-Nov 2021.
3. How much Elidel did you use?
I used Elidel daily, but it didn’t really seem to make things better and I was still flaring and had red rings around my eyes – one of the main signs of a flare starting. I was also given a low dose of Doxycycline at this time. I stopped Elidel in early November and had an EXTREME flare – looked liked I’d had a serious allergic reaction. My skin was scarlet, I was swollen, and my eyes were swollen shut. Multiple courses of antibiotics were given, and a skin swab showed I had staph and an antibiotic resistant enterococcal infection (just prior to this the doctors had implied I needed counselling as there was no problem except “allergy”). This infection ended up putting me in hospital over the New Year. I was given a short course of Prednisolone, which helped for a few days, but symptoms returned, with the burning sensation & rash now spreading onto my forehead and around my hairline. I ended up back in A& E late January and went back on antibiotics for a staph infection. A skin biopsy taken also showed an eosinophilic reaction in my skin & blood, which can also be a sign of parasites. My skin also showed a high population of démodéx mites, which I think might be contributing to my symptoms as they can cause a skin reaction in high numbers (and also hair loss of eyebrows and around the scalp). I'm currently awaiting allergy tests and the doctors want to put me on oral & topical steroids again to get rid of the facial rash. I'm on my knees with it to be honest, its impact my on my life is extreme and I am in constant pain.
4. Did you use Elidel during TSW?
I used Elidel at the start of TSW.
5. Did you use Elidel just before going into TSW?
Yes.
6. Do you believe that Elidel has affected your withdrawal, and if so, how do you believe it has?
I think Elidel has made the situation much worse, I believe this is due to the immunosuppressant nature of the drug.
7. If you could go back, would you use Elidel?
I would never use it again and I feel let down by the doctors I have encountered.
8. Thoughts on Elidel and your experience of using it.
What I have experienced since using/stopping these drugs is WAY WAY worse than any of the issues I had before.
Before bringing the experiences with Elidel to a close, I wanted to share some shorter testimonials from two other incredible people in our community related to their experience of using Elidel:
Brie (@sweetbabybreezus)
I used Elidel for maybe a week, right before I went into withdrawal. My derm wouldn't give me oral steroids anymore and I was begging him for something to help me since I had just started a new job and was basically the face of the company. I remember trying it in my car on the way home from work because I was so itchy. Right after I applied it, my skin started to BURN and sweat and I had to pull over to try to wipe it off with water and whatever I had in my bag because I was crying from the heat. Obviously not the best way to apply these creams, but I was used to steroids soothing the itch and Elidel was something else. I think I managed to get another round of Prednisone from my derm after that Elidel incident and that forced me into withdrawal a week later.
Shauntaérose (@shauntaerose)
*Shauntaé has also shared her experience with Protopic (here)*
Elidel was introduced later in my life as the other creams that were prescribed throughout the years stopped working. I started using it around the same time I started using Protopic, Elocon and some other medications. The dermatologists suggested I use all these different types of creams depending on how my skin was reacting, but said just to use all of them.
My skin at the time was what I thought was one of the worst flare ups I’d ever seen, but then I used the medication and it got better and cleared up, until I stopped using the creams and then it would flare up even worse.
I didn’t understand at the time that this was just adding to my TSW that I am going through now. I roughly used this for 7 years. When I'd go to the dermatologists, they'd reassure me that taking all of these medications was the right thing to do.
Elidel gave me false hope. It went on my skin smooth and didn’t burn like Protopic did. It offered a short sense of calm and healing; until my body adjusted and built resistance to it and the doctors suggested using it more frequently.
I mainly used this on my hands, arms, back, legs and neck. Family and friends swore by it and said it worked wonders for their skin, but like many other creams I'd tried in the past this was another that just added to the years and time it would take me to detox it out of my system. I wish I never used it because it just didn’t work like I was lead to believe it did.
EUCRISA (Crisaborole)
What is Eucrisa?
Eucrisa is one of the brand/trade names for the non-steroidal topical medication, Crisaborole, which is the active ingredient in Eucrisa, used in the treatment of skin conditions like eczema. If you weren't aware, active ingredients are the chemicals responsible for how/why a drug works. The active component of a drug is called the active ingredient. Eucrisa is an ointment which comes in 2% strength and is available in 60g or 100g tubes.
Eucrisa belongs to a class of drugs known as phosphodiesterase-4 (PDE-4) inhibitors. PDE-4 inhibitors are relatively new and work by suppressing the immune system, which in turn reduces inflammation. Apparently there is some confusion over how these drugs work to achieve this (dear god). There are currently three PDE-4 inhibitor drugs that have been approved for the treatment of skin or lung diseases: Crisaborole, Apremilast (used in the treatment of psoriatic arthritis) and Roflumilast (used to treat Chronic Obstructive Pulmonary Disease *COPD* which is a chronic inflammatory lung disease).
For a little bit of background on it, Crisaborole was developed by Anacor Pharmaceuticals for the topical treatment of psoriasis. When Pfizer acquired Anacor Pharmaceuticals in 2016, the drug was touted to be the next big thing, with projected sales of $2 billion dollars a year, but the drug turned out to be not commercially successful, making 'only' $147 million in sales in 2018 and $138 million in sales in 2019.
Eucrisa was only approved by the FDA in 2016, followed by Canada in 2018, with the official website for Eucrisa (here) proudly declaring that it is 'the first FDA-approved topical prescription treatment for eczema in over a decade', followed swiftly by the well-worn statement that it is not a steroid, which has now become the unofficial international stamp of safety.
In March 2020, Under the brand/trade name, Staquis, Crisaborole was approved for use in the European Union for people aged two years and over with 'up to 40% of their body affected by atopic dermatitis', although it was rejected by the UK's National Institute for Health and Care Excellence (NICE) over 'unreliable clinical data' (see article *here*). Saying that, Staquis, was approved by the Therapeutic Goods Administration (TGA) in Australia for the treatment of mild to moderate atopic dermatitis in patients two years of age and older.
According to the official Eucrisa (US) website, it can be used 'from nose to toes' in adults and children as young as three months old. The only place they say you can't use it is your eyes, mouth and vagina.
The most common known side effect of Eucrisa in medical literature is listed as pain at the skin application site, which might feel like stinging or burning on the skin. Disturbing that some doctors suggest keeping Eucrisa in the fridge, which might help prevent stinging, even though the drug’s manufacturer recommends storing Eucrisa at room temperature. Rare side effects reported are allergic reactions.
In my research, I came across this article on Medical News Today (here) on Eucrisa. Under the section, 'Long-term side effects', they discuss a clinical study which followed the long-term safety of Eucrisa for mild to moderate atopic dermatitis (AD) in adults and children aged 2 years and older, and after 48 weeks, the most commonly reported side effects included:
- Worsening atopic dermatitis (*coughs loudly TSW*).
- Pain in the area the ointment was applied.
- Infection in the area the ointment was applied.
Researchers somehow concluded from these findings that Eucrisa was a safe long-term treatment option for most mild to moderate AD sufferers ...
On that note, here are some experiences from members of this beautiful community who would disagree with the researchers claims.
Anna
25-34
*1. Brief overview of your steroid/immunosuppressant use.
Used steroids as a child, off and on, and was also part of eczema trials (I took part in around 3 of them), but always used them for the suggested amount of time. I was eczema free for about 5-7 years as an adult before I started using a low dosa steroid on the corners of my mouth (now, looking back, it was probably contact dermatitis and not eczema). I ended up using steroids every other day for seven years. I was in TSA and didn't know it when I started getting rashes in places I had never had them before in 2020. I also had a very bad wound on my foot that I treated with Protopic.
2. When did you use Eucrisa?
I used Eucrisa in middle of 2021 for a few months.
3. How much Eucrisa did you use?
I only used about half a tube in only one spot: in the middle of my upper lip, right under my nose.
4. Did you use Eucrisa during TSW?
No.
5. Did you use Eucrisa just before going into TSW?
Yes.
6. Do you believe that Eucrisa has affected your withdrawal, and if so, how do you believe it has?
Absolutely. My upper lip is my problem area on my face and is continuously dry with small painful cracks in the middle right where I used the Eucrisa. Very flaky and red as well.
7. If you could go back, would you use Eucrisa?
Absolutely not.
8. Thoughts on Eucrisa and your experience of using it.
Eucrisa burned the first month or so when applying it and I should have stopped then. I now know it can be just as damaging as steroids (in my opinion).
Woman
18-24
*
1. Brief overview of your steroid/immunosuppressant use.
I used Mometasone on my face twice in October 2021 for persistent rashes I've been having on/off the past year as moisturizers were no longer doing anything for me, about 5 days each. The first time I stopped Mometasone, I noticed my rashes were gone, but my face kept flushing and stayed red where I applied the steroid. This is when I came across RSS/TSW. The rashes appeared a week later, so I used the Mometasone for around another 5 days, hoping that was all I needed. Again, they came back so I asked for a non-steroidal option. I was prescribed Eucrisa to use with Hydrocortisone for two weeks. I only used the Eucrisa.
2. When did you use Eucrisa?
I used Eucrisa in November 2021 for two weeks, as instructed.
3. How much Eucrisa did you use?
The smallest amount possible. Less than a pea size for my entire face. My tube still looks untouched.
4. Did you use Eucrisa during TSW?
I'm still not sure if I'm going through TSW or a Eucrisa withdrawal, or both. I was informed by several dermatologists that I should not have used Mometasone on my face, even though my GP who prescribed it said it was "mild" and "for the face". Although I used Mometasone for a very short period, I think it's possible that it was too much for thin, sensitive face skin to handle.
5. Did you use Eucrisa just before going into TSW?
See answer above.
6. Do you believe that Eucrisa has affected your withdrawal, and if so, how do you believe it has?
Possibly. I believe it suppresses the symptoms, similar to a steroid since it's not a cure, just a treatment, making things worse once you come off of it.
7. If you could go back, would you use Eucrisa?
No. I wish I researched more into the withdrawal effects of these topical drugs that act like steroids. I also found out I was allergic to an ingredient in Eucrisa. I wish doctors and dermatologists did tests on me first before giving out all these prescriptions right away.
8. Thoughts on Eucrisa and your experience of using it.
Same answer as above. Also, I noticed Eucrisa worked well on my face the first two days. After that, it did nothing and only made my face worse. I wish I'd stopped it when I saw things going downhill rather than forcing myself to stick through it for the remainder of the two weeks.
Andrea (@andreawellness)
25-34
*1. Brief overview of your steroid/immunosuppressant use.
I used topical steroids (of different strengths ranging from OTC 1% recommended by a derm to Clobetasol) on and off from ages 6-29. The only immunosuppressant I used is Eucrisa.
2. When did you use Eucrisa?
I was 29 when I used a total of 2 tubes of Eucrisa (probably over the course of ~2 months or less). I remember only getting it twice and it burned a lot upon application. And didn’t help reduce my “eczema” at all.
3. How much Eucrisa did you use?
Not a lot, just used a little mainly on my worst spots such as the skin around my eyes and above my upper lip.
4. Did you use Eucrisa during TSW?
No.
5. Did you use Eucrisa just before going into TSW?
Yes. I used it a few months before going into TSW.
6. Do you believe that Eucrisa has affected your withdrawal, and if so, how do you believe it has?
It is possible that it may have worsened and prolonged my withdrawal but not by a lot. I didn’t use a lot of it. So it might not have made a big difference but there is no way of knowing unfortunately.
7. If you could go back, would you use Eucrisa?
No.
8. Thoughts on Eucrisa and your experience of using it.
I would not recommend using immunosuppressants of any kind. Something that burns so badly cannot possibly heal or fix anything. Suppressing symptoms with doctors’ prescriptions is what got us into TSW so I would not use it.
N (@nvsea23)
55+
*1. Brief overview of your steroid/immunosuppressant use.
I used topical steroids (first Clobetasol and then, primarily, Triamcinolone) for six years from October 2014 – October 2020. I used Eucrisa from November 2020 – May 2021. I was also prescribed oral steroids (prednisone/methyl prednisone) numerous times over this time period.
2. When did you use Eucrisa?
I used Eucrisa from November 2020 until May 2021.
3. How much Eucrisa did you use?
Over the six-months, I used about three tubes, primarily on my legs, arms, hips and a small area on my back.
4. Did you use Eucrisa during TSW?
Yes, now looking back, I was using Eucrisa while going through TSW, but I did not realize that I was actually going through TSW at the time.
5. Did you use Eucrisa just before going into TSW?
No, I believe that I started to go through TSW before I started to use Eucrisa.
6. Do you believe that Eucrisa has affected your withdrawal, and if so, how do you believe it has?
Yes, I do believe that Eucrisa has greatly impacted my withdrawal. It has made the whole process worse in that my experience using it has led me to feel that the strong potency of this category of topical immunosuppressants causes a level of damage that seems to exceed that caused by long-term topical steroid use. Additionally, areas where I used Eucrisa healed the slowest.
7. If you could go back, would you use Eucrisa?
If I could go back, I would absolutely not use Eucrisa.
8. Thoughts on Eucrisa and your experience of using it.
The first thought that comes to mind is that Eucrisa is truly a dangerous drug. It made my already disastrous skin condition, declining mental health, and bleak outlook on life so bad that I did not want to live anymore.
Some background context: In 2014, I developed a small rash on my upper arms. It wasn’t really anything big; just very itchy and, probably more important to me at the time, it just didn’t look very good. I went to an allergist because I thought perhaps it was from something I was allergic to, but allergy testing did not reveal anything significant. When the rash did not improve, my allergist recommended that I see a dermatologist. The dermatologist did a skin biopsy and prescribed Clobetasol and then Triamcinolone, both of which I had never used before. That was the start of a seven-year decline into what I was told year after year was “just worsening eczema” that continued to spread over my entire body and that my condition was “incurable.”
Over this time period, I saw more than 25 doctors, most of whom wanted to put me on one of a number of medications, such as Dupixent, cyclosporine, or hydroxychloroquine. After researching each of these drugs, I refused to go on them. I continued to use Triamcinolone ointment and, on average, was prescribed a one-pound jar four/five times per year. I should note that there were brief periods that I would stop using it because I did feel at times that steroids made my skin worse, but I was always told otherwise by doctors. They cautioned me that I could get worse if I stopped using them all together, so that scared me enough to keep using it.
In November of 2020, when my skin was at its worst, I went to see a highly regarded New York City allergist who told me that she had many patients similar to me (diagnosed with atopic dermatitis) that were seeing good results when switching to Eucrisa. Looking back, I’m not really sure why, but I put my faith in her and decided to try it. I was just so desperate. I stopped using the topical steroid and started using Eucrisa. I saw little improvement when I started using it and the burning sensation caused by it made it dreadful to use, but I kept using it thinking that at some point I may see improvement.
However, after six months of using Eucrisa, I had started to have a reaction to it (similar to inflamed, itchy contact dermatitis). I didn’t know what to do, so I started to use the steroid again to try to counteract the reaction, which only made things worse. I was at my lowest point and a total mess. So, in desperation, I searched “Can you be allergic to Eucrisa or Triamcinolone ointment?” That’s when I first learned that there had been many reported cases of severe allergic reactions to Eucrisa and, even more importantly, I learned about TSA/TSW for the first time.
Over the next week, I immersed myself into reading about TSA/TSW and looking at Instagram accounts of people who were documenting what they were going through. I bought your book. I watched Heba Khaled’s video (here), and I came to realize that this is what indeed had been happening to me for the last seven years. I realized that I did not have “incurable chronic eczema” or any other rare skin condition. It had become clear to me that it was actually the long-term topical steroid use, and then using Eucrisa, that had finally pushed my skin (and mental health) over the edge. I stopped using both Triamcinolone and Eucrisa in May 2021. Since then, I have not returned to any of my doctors. My attached photos show the progress that I’ve made in 10 months (above).
I do not believe that I can say anything that’s more profound than what has already been clearly documented and eloquently described by so many brave people in the TSA/TSW community. I am just one more person, just one more voice, just one more “burden of proof” added to those who have shown evidence that TSA/TSW is real and how our lives have been so greatly impacted and forever altered by this clearly preventable iatrogenic condition.
EUCRISA & ELIDEL
Amanda (@mandanstey)
25-34
*1. Brief overview of your steroid/immunosuppressant use.
I began the use of steroids when I was very young as I was born with pretty bad eczema that persisted until I was about 12 or 13. I remember having tubs and tubes of steroid creams everywhere when I was younger, slathering them on mainly my face and hands and occasionally my body. My eczema was always worst on my face and hands though. My eczema disappeared right before high school except for my hands. This was always manageable though (with steroids although it never completely went away). The most recent ones I can remember using and sticking with were Elocon & Lyderm.
My eczema came back on my face at the end of 2019, as well as in the form of stress rashes on my torso. When a dermatologist finally diagnosed it as eczema in January of 2021, she supplied me with samples of both Elidel & Eucrisa for my face. She told me to use them both and see which one I liked better and then she'd write a prescription for one. They were so expensive, too. I used both interchangeably with neither really truly helping. They might have helped a bit with the redness and surface level inflammation, but my skin was never clear when using them. They burned so badly that I eventually just ditched them. I went through a week long withdrawal from these creams. My face was extremely swollen, hot and red. I could barely even see out of my eyes. When the swelling started to go away I was left with skin that looked like it was decaying from the inside out. I literally looked like a corpse. It didn't get as dry as it does during TSW but the inflammation was so bad it just took a bit for it to go back to normal. My eczema of course returned after the withdrawal. I told my dermatologist about it and she said it wasn't possible. I wasn't using steroids on my face at that time, just my hands. I went to my regular GP & he told me to purchase a OTC Hydrocortisone cream for my eczema and said it was fine to use everyday on my face. I also still had my stronger one (Lyderm) for my hands at this point. The OTC worked for maybe a day, but my eczema always returned. I got desperate and used Lyderm maybe twice a week for 2 months as it was really the only thing that was clearing my eczema, although it still came back. At this point I was very aware of the dangers as I was doing research, but didn't have any other options available to me at the time, and I was just listening to my dermatologist & GP. Eventually the steroids stopped working for my eczema everywhere on my body, and I threw all of my steroids creams into the garbage and expected the worst. This was April 18 of 2021. TSW began for me exactly one week later on April 24th.
2. When did you use Eucrisa & Elidel?
I used Elidel & Eucrisa interchangeably for about 2 months from December 2020 - February 2021.
3. How much Eucrisa & Elidel did you use?
I used 1 large tube of Eucrisa & 4 or 5 smaller sample tubes of Elidel.
4. Did you use Eucrisa & Elidel during TSW?
I didn't use these during TSW no.
5. Did you use Eucrisa & Elidel just before going into TSW?
I used them a couple months before going into TSW.
6. Do you believe that Eucrisa & Elidel have affected your withdrawal, and if so, how do you believe they have?
I don't believe they've had much effect on my TSW, no, although they did have their own withdrawal symptoms that were very similar, but much less lengthy in my experience. They were probably adding to my inflammation overall as well as suppressing my immune system to make me more susceptible to TSW. But I was using a strong steroid on my face which is a highly absorbable area which I do give the most credit to in terms of TSW.
7. If you could go back, would you use Eucrisa & Elidel?
If I could go back, no, I'd never use these immunosuppressants as they didn't help at all really. But when you are desperate and only know to trust these doctors of medicine and skin ... you do it. I have since turned to a clinical nutritionist who specializes in healing eczema and I will never look back.
8. Thoughts on Eucrisa & Elidel and your experience of using them.
My thoughts on these and key components I didn't realise at the time of use is that they are simply bandaid solutions, not cures to eczema. They don't reach the root cause, and by using them we are only weakening our immune systems and clouding our judgement in determining what the actual root cause of our eczema is. They burn like hell so they're not pleasant to put on, and they're so thick and slimy. They're awful. I don't have a positive review of them at all, especially because I experienced a withdrawal.
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Thank you so much to everyone who took part in this post and shared their experiences so openly <3
Even with everything I've learned in the six and a half years that I have been talking with others in this community, and my own experience of living with chronic skin/iatrogenic conditions for over twenty-five years, it is in these posts that I have felt my last remaining vestiges of respect for the world of dermatology ebb away, and I am now left with this empty feeling of disillusionment, disappointment and despair for a field of medicine that has ended up doing more harm than good. Yes, there are good dermatologists out there, but what has disturbed me recently is the realisation that most of us go into a dermatology appointment as if we are Marie Antoinette about to meet her fate at the guillotine. Just like my other community-based posts, this post is filled with accounts of medical negligence, gaslighting, and diagnoses that beggar belief – and this isn't rare, but common. The thing that is rare is finding a dermatologist who will actually listen and support their patients. I am truly disgusted and appalled at what has been allowed to happen in dermatology.
I have said this many times now, but I am deeply concerned with the way TSW awareness is going and I fear we aren't making progress, but just creating even more problems from the need to create more band aids that don't heal, but exacerbate symptoms, and I am very scared what we will be seeing in ten years if this approach to non-steroidal medication doesn't change. In our desperation to get people off topical steroids, we could be endangering people even more.
I see dermatologists and eczema associations talking about this being 'such an exciting time in dermatology', but I think it couldn't be any worse, with an impending sense of doom, because this method of swapping one drug for another cannot continue as people are infallible and simply cannot withstand such potent medication for a lifetime. It has a shelf life and is a ticking time bomb waiting to explode if we don't do something about it.
If we take a step back and look at these non-steroidal medications more closely, they have only been in circulation for twenty years – that is nothing, especially when compared with the fact that it took well over fifty years for the dangers of topical steroids to be acknowledged (and we're not completely there yet with them either ...). I pray we won't have to wait as long as that with these non-steroidal medications which don't necessarily equate to 'safe'.
I truly hope that in future we can learn from the mistakes of the past and not add to them. The treatment of skin conditions like eczema (whatever the hell 'eczema' is ...) should be focussed around finding answers and root causes and not just creating customers for pharmaceutical companies.
Sending love and healing,
Cara x
Other posts in the series:
Let’s Talk About: TSW & The Genitals (here)
Let’s Talk About: Eczema Herpiticum (here)
Let's Talk About: Protopic (Tacrolimus) (here)
Let's Talk About: 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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