I’ve written a lot and read a great deal about Topical Steroid Withdrawal (TSW) but have seen very little discussion about the effects of long term use of Protopic, a topical immunosuppressant.
I stopped using topical steroids on the 20th January 2019 so it’s two years since I started this journey. In April 2019 I decided that I was equally as addicted to Protopic as I had been to the steroids so I stopped using that as well. I had weaned myself off it gradually so that I was using it once every two weeks to a month, but after that time it would start to deteriorate and become even worse that it had been to begin with.
I first used Protopic to calm the constant redness and inflammation, like a butterfly pattern on my face, and huge inflammation on patches of my face. Little did I know that these were signs of TSA which I believe Protopic initially masked well.
I never used Protopic on the rest of my body, only very limited experiments which just didn’t seem to help like it did on my face.
I used it really sparingly and one tube probably lasted me 6-8 months, if not longer.
Protopic withdrawal symptoms
It’s really hard to pinpoint what might be caused by Protopic and what by the steroids, but I barely used topical steroids on my face, not even hydrocortisone. I did on my neck and décolletage and these areas have been very badly affected by TSW.
But these are the things I think happen due to Protopic:
- Intense heat – rising up the face to the scalp. So hot it feels like you’re standing in front of the oven and not moving away. It prickles and feels very unpleasant. This wakes me at night and often happens the minute I put my head on the pillow and snuggle down to sleep. This used to distress me greatly but I’ve learned how to ride these out now.
- Eczema herpeticum – Or the herpes virus, getting into cracks on my chin, jaw and sometimes forehead and brow causing intense debilitating pain. This was so painful it often left me in tears. It would be incredible painful for a day and night and then I’d wake and it would be settling in. It would then crust over and eventually peel, flake off and be back to normal (what is normal?) after a week.
- Cheek creases – I don’t even know where to start. It appears to me that the worst areas on my face are where I concentrated application of the cream So I would run my fingers down both cheek creases, nose creases, across my forehead etc. The most pain and worst affected inflammation, oozing, crusting and flaking seems to be worse where Protopic would have been smoothed most often.
- That flaky glue skin – you know at school when you got the Copydex glue all over your fingers and it would go hard and peel off? That’s what the skin on my face has been like. Almost like my skin crusts, hardens and turns into a layer that feels like plastic. This then comes off in giant flakes
- Normal flaky – in between these ridiculous glue like flake offs are the normal flake offs, Sometimes twice a day, sometimes just at night, sometimes in the afternoon, often not every day but at the moment, back to relentless. It’s a constant inflammation, harden and crust and then flake situation.
- Insane itching – My whole face would be so itchy sometimes that I couldn’t even do simple tasks. Even brushing my teeth was difficult because I was so insanely itchy I though I would go mad. My eyebrows mostly fell out due to incessant rubbing.
- Damp not oozing – my skin would just feel damp, like I was sweating but I wasn’t. I read just today on one of the resources listed below that we should not wipe off the ooze and we should also not remove flakes. I have been removing flakes all the way through and I’ve bathed off the ooze when I could. Have I been doing it all wrong? I just found it gave me some comfort, albeit short lived where my skin felt vaguely normal and I could go out, be on Zoom and see people and not feel like a complete monster.
- Nausea – I have no idea if this is related but I wake up every morning and feel like I have a hangover. This is getting better and usually fades as I get up and wake up, but it’s not a nice feeling to wake up and feel crap from the minute you wake up.
- Eyes glued shut – Literally glued up. Painful to open, and it can take me half an hour to unglue them. I use a cotton hankie to press over my eye. I can them dab off excess eye bogies and eventually get out the white gum that seems to cement up my eyes each night. Paper tissues make it worse.
I think that’s all for now! But maybe these are normal TSW symptoms… I’d love to hear your thoughts.
Please don’t use Protopic
What I would do to have back that red early TSW skin on my face and start a natural healing journey.
But it is what it is, and so you see the many faces I’ve woken up to over these two years of healing.
Some good days. Some bad. Most flaky.
And so, here ends my warning.
I started using Protopic in March 2014 so I was applying it to my face regularly for five years before I quit in April 2019.
It is clearly just as addictive as topical steroids, although my sister managed to wean herself off fairly quickly, my dermatologist assured me that it was completely safe to use twice daily and he was worried about my continuing to use it.
A great introduction to TSW here:
Further reading:
Check out Skins of Rose – Topical Steroid and Protopic Withdrawal
Also Everything Eczema about Protopic
Anyway thanks for reading. I do try not to go on about TSW too much, but if just one of you tells a friend about this and they think twice about using either topical steroids or Protopic then I’ve done my job.
Anyone else going through Protopic withdrawal? Is it different to Topical Steroid withdrawal? or similar?
I recently stopped using Protopic after using it on and off for about 6 months. It has been about a week since I stopped using and my skin is extremely red, itchy, burning, painful and flaky.
I am wondering how long to expect this stage to last?
Any thing you found to help with the healing? So far I have only used coconut oil.
Any help would be greatly appreciated
Hi there, it’s so hard to answer this. I stopped using Protopic 2 years ago after using it for over 7 years. I’ve no idea whether I’m still healing from topical steroid withdrawal or protopic withdrawal. It’s so hard to know what to say. It goes through cycles from inflamed to burning, itchy, painful and them flaking off. Over and over again. It takes time. I would suggest checking out ITSAN the charity for steroid withdrawal and also Scratchthat
https://www.itsan.org/
https://scratchthat.org.uk/
I’ve done so many things to try to help, from ice packs to using natural emollients to try to soothe. Ultimately it’s a case of trying to see what helps you and riding it out. Some people find No Moisturiser helps. I am finding that too hard. There is am amazing community online on Facebook and Instagram so I’d suggest getting on there and just learning from others. Sorry I can’t give you an answer. There needs to be more research done into this. However you could perhaps try tapering. Slowly reducing the time between uses. How frequently are you using it now? Gradually extend the numer of days but don’t go cold turkey. I’ve heard from my sister that this helped her. She went onto the very low dose one too, there are two strengths. Good luck. I msut try find out more and blog about this one.
Since replying to this I now have an FAQ page which I’m building on all the time. Check out https://whatallergy.com/tsw
I’ went through tsw ten years ago. It took 5 years to be clear. I then had five years clear skin. Three months ago I inadvertently used a hydrocortisone containing product twice. TSW came right back. I’m now on dupilumab with pro topic for the eczema around my eyes. I’m suspicious of Protopic but could find nothing about additctiin to it til I found this. Blog. I’ve used pt about six times so far. I think I’ll have to stop. So depressing. It’s supposed to have a different mechanism to steroids.
Was your sister atopic? Did she use steroids too? Are you still suffering and how many years has it been for you?
I am so disheartened. Especially after I’d been through tsw until my mistake earlier this summer – now I seem to be back to square one 🙁
Hiya Elle, I am so sorry you are going through this. We need more recognition for this condition so that we can have NO STEROIDS on our medical notes. I’ve heard from so many who have been put back into withdrawal after using topical steroids by mistake. So cruel. My sister is also atopic yes and she has not had the awful withdrawal I’ve had. Hopefully this time around it won’t last so long. It can’t last so long! Can it?
I dont know how long I am due to suffer this time around. I had red skin over my entire body (just like the first withdrawal), and that was from using hydrocortisone TWICE. I think that once we are addicted we can never ever ever use TS again. YOu’d think this flare would not last long, but so far, its been pretty awful and just like it was ten years ago after I quit a lifetime of steroid use!!
I now have protopic and am on dupilumab (from using hydrocortison twice – can you believe it!!) Everything I read from fellow AD sufferers suggests that they used PT after or in conjuction with TS,. The “protopic withdrawal” symptoms people describe sound just like TSW – which takes YEARS, so could easily be confused with PT withdrawal.. I dont know what to think, 🙁
There is no research currently into any of this so it’s really impossible to categorically prove any of this but my face was the absolutely worst affected area and that’s where I used protopic. I didn’t use protopic anywhere else as it didn’t work. I used quite strong topical steroids all over the rest of my body over 40+ years but was very wary and always used sparingly. The most cruel thing seems to be that it’s not linear, the time to heal seems impossible to predict. I’m not as about 2.5 years in and seeing great improvements finally, but I used protopic for about 7+ years and maybe longer. I wish you healing and hope your journey to healing is not too awful. Get all the information you can, although sounds like you are a pro. We are all a research experiment here.. Keep a diary and photograph your progress. It’s the only way we can learn. Thanks so much for the comment.
HI Ruth
did you use protopic and topical steroids at the same time?
Hi Elle, yes I probably did. I had Elocon in the latter stages which my doctor told me was much safer than the usual topical steroids. I used Protopic on my face only, it didn’t work anywhere else, and Elocon very sparingly on the rest of my body if I had a flare. I think I was naturally tapering both but ultimately went cold turkey at the beginning of 2019. NO idea how you can tell what’s caused by the steroids or whether any of the withdrawal or healing is from damage done by protopic. I’m wish I could be more certain for you.
Protopic is Evil….DON’T USE IT! I have only used it on my face twice a day for 7 months…..during that time my face 4 different times became fiery red as if I was having an allergic reaction. I would put ice on my face and it would go away. After the 4th reaction….went on the internet and realized it was Protopic. I did stop March 1st this year cold turkey in which I had a rebound affect. I went to the derm and he of course gave me a low dose steroid for my face. Used Steroid March, April, and May would clear up but as soon as I would stop the steroid came right back. June and July started to tapered down and stopped the steriod July 13th. Week six off of everything. Today going through PW/TSW……all the symptoms just like Ruth. I wish there was more I can do to educate the world how bad this cream is.
It’s awful. I’m so sorry you’ve had to go through this too. It will slowly improve. I’m still healing x together by talking about it we can hopefully stop others using it too.
Hi Th ere I’ve always had rosacea since I was 19 the first time I ever consulted a dermatologist and used anything on my face was rozex cream which made my skin crystal clear. And then when I moved to gulf I started getting flare ups and I was given steroid cream. Whixh I used only for 7 days twice. Till date I get flare ups and yesterday been to dermat and was prescribed tacrolimius . Please advise
Oh gosh I am so sorry… these skin creams are so damaging. Steroid creams are a short term solution so you’re right to stop using them. However I think I am still in withdrawal from tacrolimus or Protopic as we call it in the UK. It too is just masking an immune response. Your body is trying to tell you something through your skin. The problem is, we don’t know how to understand what it’s telling us and it can be like being a detective finding out. I wish I hadn’t used it to be honest. I used tacrolimus for about 7-8 years and my skin is still healing from that 2.5 years later.
Hi there, i have used protopic on and off, very sparingly for 7+ years, and wasn’t until getting pregnant with daughter made face “eczema” so bad. Not sure if hormones but rash is triggered by the SUN. of course, I grab protopic to help but not sure if it’s a merry-go-round effect. I think my immune system is shot from pregnancy, and possibly my adrenals. Not sure if it could be PW due to the fact that I used very sparingly. Never went through even 1/2 a tube in 5 years. Thoughts?
Well it definitely sounds like you’ve used super sparingly which must work in your favour. I’m going to apologise up front and say I ‘m not doctor. I’m now 2.5 years in withdrawal from using Protopic on my face so it’s still a work in progress. Hormones could well play a part in this. I am boosting my adrenals and lymphs with tonics from Dr Morse and hopefully I will heal from this. Ultimately I think this stuff is bad for us. Wish I’d never used it.
Please don’t use Protopic when you go out to the sun. It also says to avoid sun when you’re using it. It further burns your skin and dramatically increases chances for skin cancer.
Best of Luc
Thanks for the heads up Luc, I did know this. It’s horrible cream, I am now 3 years into withdrawal from it and it ruined my skin. Not because of the sun. I found even one second in the sun and it felt like such a high burning on my face… I was wearing wide brimmed hats and hiding in the shade permanently. Such a worry really.
Hi. I have had pretty bad psorasis and/or eczema on my neck. Used steroid creams at the start which as you say, were a short-term solution that caused probably more harm than good. Recently used Protopic and have had to stop after 3-4 applications due to a bad allergic reaction. I’m not having any withdrawal symptoms or issues as I haven’t been on this stuff for years. I’m worried that my doctor/the derm is going to put me on a similar type of cream. Any suggestions on what to tell them? Can you direct me to the community/research on natural alternatives? I’m so anxious about it all
I would suggest you check out Cara Ward’s blog. She has written one about Protopic, which I don’t think you’ll have a problem with after such a short use. https://tswcara.blogspot.com/2022/02/lets-talk-about-protopic-tacrolimus.html
And one about Eucrisa and Elidel which are similar so your doc may prescribe one of these: https://tswcara.blogspot.com/2022/04/lets-talk-about-elidel-pimecrolimus.html
I’d be very wary of anything at the moment that suppresses your immune system. There are Biologis and Jak Inhibitors coming along and also oral immuno suppressants – my experience caused me to get shingles and just delayed my withdrawal so not sure I’d recommend them either. For natural alternatives I’m also on that same mission. I use Balmonds and Lyonsleaf and love them so much. You can get discount codes here: https://whatallergy.com/affiliates/
And hopefully as i heal from TSW I’ll be able to work out what my skin really needs. TSW is so intense and random it’s hard to tell what’s going on at the moment when the skin cycles in flares all the time.