We hear a lot about topical steroid withdrawal, but little about Protopic withdrawal so there is hardly any research existing about what happens if a person decides to stop using Protopic. This is my analysis of my own usage and withdrawal from Protopic so far… and counting…
I can’t even prove that the problems I’m having with excessive burning, inflammation, crusting and flaking on my face is caused by Protopic at all because I began my eczema journey using topical steroids so these symptoms could just be TSW. You can get withdrawal from only using Protopic though, and no topical steroids. Read Dominika’s story – Protopic can damage the skin just like topical steroids can.
The withdrawal process is confusing because you have symptoms on parts of your body where you never had eczema before and never used steroids, this is a common observation between topical steroid withdrawal patients AND those trying to stop using Protopic. It is an iatrogenic full body reaction and can and does cause inflammation and withdrawal symptoms randomly and everywhere!
How much Protopic did I use and for how long?
I had to ask my doctor’s secretary to run this report for me because I couldn’t remember. We don’t record when we get prescriptions, nor how long a tube lasts, how often we apply and where we apply it on the body each time. Maybe we should, it would make understanding a lifetime of use of topical steroids easier to understand.
According to my records I was issued 11 scripts of 0.01% Protopic between Mar 2014 and July 2017 and 1 script of 0.03% strength Protopic in June 2014.
I believe the 0.01% is stronger than the 0.03% script.
- 2014 – Started off using it twice a day, morning and night.
- 2015 – Began to use less, every other day.
- 2016 – Weekend maintenance dose – once a weekend
- 2017 – Weekend maintenance dose – once a weekend
- 2018 – No Protopic issued – this year I was tapering and I did not use up all the medication I was prescribed.
- That’s 5 years use in total
- Approx 2 tubes per year by my estimation
- 2019 in April I quit Protopic for good after tapering to once a fortnight, then once a month, but it had started to stop working as I did this, so I would periodically boost back up again.
I was told it was completely to safe to use as often as I wanted
I was told by my dermatologist that Protopic was completely safe.
That it wouldn’t harm my skin like topical steroids could.
That he was happy for me to use it more often. He often told me I should use more.
But I continued to question this and try to reduce my usage.
It just never felt quite right.
I’m due to visit my dermatologist in February 2022 so let’s see how that goes. I’d love to be able to walk in with significant healing to show.
So where are we now?
Currently about 2.5 years Protopic free
My face is where I used Protopic, nowhere else and its by far the worst affected area. Although the elephant thickened skin is present on the elbow creases, backs of knees and now inner groin and thigh as well us underarms.
In October last year things took a turn for the worst and my face has been flaring ever since. It has thankfully just begun to become more manageable this January 2022 and long may that last.
It’s still flaking and shedding, but no longer oozing, dripping and crusting with such ferocity. To have such a dramatic decline so far into my withdrawal journey has been hard to take but I see it as all healing. It’s got to heal deep into the skin layers and that healing journey is not linear, nor is it gentle and logical.
It’s a rollercoaster and it’s a complete head F**K!
Can you wean off and taper Protopic usage?
I get asked so often, ‘how can people withdraw, wean and stop using Protopic?’ (and also Elidel and other topical immunosupressent creams) and I really don’t have the answers. All I can do is continue to share my experience because I know I’m not the only one quitting this immuno-suppressant as well as the topical steroids. They are both immuno-suppressants when you get down to it.
Are topical immuno suppressants worse than topical steroids?
Are topical immuno suppressants like tacrolimus worse than topical steroids? We don’t know. No one is monitoring this. No one is researching it. No one is listening.
What I do know is that the narrative around Protopic and Elidel is that they are completely safe to use anywhere on your body. We are told to use on our face, and to use as often as we like. Contrary to the advice for topical steroids where even the most gung ho dermatologist will urge caution and usually tell you not to use on your face.
NO one warned us about addiction
But we are out here conducting our own live research project. What happens when you say no.
What happens when you stop?
Because no one ever said to any of us, if you use these you will be hooked. You will never be able to stop using them because your skin will be damaged so much you’d be crazy to even try.
No one told us this could happen.
I’d love to hear from other Protopic users who have quit. What was your usage? How long have you been using Protopic? How long have you been in withdrawal? Have you healed from using Protopic?
I am shortly going to be reporting Protopic to the Yellow Card Scheme, which is a system in the UK where we can report damage done to us be medication. I would urge you to do the same for both immuno-suppressants and topical steroids if you have not already done so. We have to report this issue for things to change.
You may also enjoy
- Let’s talk about Protopic and Tacrolimus by Cara Ward on the ITSAN website
- Cara’s blog of Protopic case studies sharing different tacrolimus users stories is a MUST READ!
- How to report Topical Steroids using the Yellow Card Scheme
- MHRA recognise TSW as a real condition – but not Protopic Withdrawal!
- My TSW – Frequently Asked Questions page
- TOPICAL STEROID WITHDRAWAL – HEALING NATURALLY – NO MORE TOPICAL STEROIDS – NO MORE PROTOPIC
I was prescribed Tacrolimus 0.1% for my constant face and neck flare ups. I have had eczema since infancy, I started getting it around my eyes and on other parts of my face during puberty and it has come and gone over the years. But the past year I’ve had pretty much constant face flares (around my eyes, forehead and above and below my lips). I was never told not to use my betnovate on my face so I was using it on these areas (and have been I think for years). After stopping using benovate on my face I asked my gp for something non steroidal and he prescribed Tacrolimus (protopic) but he knew very little about dosage and weening off it. I have done tonnes of research on it and so far it has been my saving grace. I know my skin is dependent on steroid so I use betnovate as infrequently as possible on the rest of my body. I tried stopping steroid before Christmas and I only lasted 3 weeks before I caved. So far I’m using Tacrolimus 2 days a week at most. I only used it for 1 week straight, twice a day, to calm down the initial persistent flare and since then I’ve been fine. Hopefully I’ll change to the 0.03% further down the line. And then hopefully I’ll be able to slowly ween off steroid and protopic all together at some stage.
I forgot to say- I was prescribed tacrolimus in December 2021 just before Christmas, so it has been 1 month since I started it.
Definitely keep on weaning off if you can, use sparingly… it’s not nice if you’re on it long term
Thanks so much for your comment, Can I ask how long you used topical steroids on your face for?
I hope not too long. And how long did you use Protopic for? keep on weaning and researching. There are loads of support groups on Facebook and loads sharing their journey on Instagram too. You might like to check out my TSW FAQ at http://www.whatallergy.com/tsw for loads of resources that could help you. Good luck!
In all honesty I cannot remember how long I used steroids on my face for. I remember at age 11 I used my mum’s steroid ointment (very potent) on my face as I was experiencing red patches around my eyes. She leaves her steroid ointment within reach of the rest of my family, and we are an eczema prone family. It makes me so angry to think back at those early memories. I am nearly 22, so I’ve probably been putting it on my face for around 11-12 years- rarely to begin with- then this past year weekly, until I quit in December 2021.
I have since lectured my younger sister and my mother on TSW and Protopic but they are both experiencing bad facial eczema and have used steroid ointment for years. I reckon my mother has been going through TSA/TSW since the 80s…
I’ve been using Protopic on my face and neck only for under 2 months now, I have also been battling a fungal infection over a lot of my body that I managed to clear up in two weeks but the topical treatments made my body eczema flare so badly I had to use hydrocortisone 🙁
Onwards and upwards now.
It’s definitely a battle, as you say and I’m so sorry you’re going through this. I wonder how many people just plough using more and more and don’t know they are addicted and that now they’re stuck in this cycle of never being free of drugs now – or going cold turkey into hell. I think Protopic actually might be worse than the topical steroids but I’m not sure I can prove that. Stay strong, and know you are not alone. Thanks for the comment. I wish I could tell you what to do for healing and relief. There is a whole community of us out here going through what you are. Check out https://whatallergy.com/tsw/ for info
Hi Ruth,
Thank you so much for sharing your experiences on Protopic.
I am on the verge of starting it on the reccomendation of my Dermotoligist.
My story is unlike most people on this thread as my skin was as near to perfect until January this year when i developed a bad reaction to Olay Regenerist Max Retinol
It started on my forehead with red patches which initially i wasn’t too concerned about as Retinol can provoke a skin reaction for a while but it wasn’t going away & more red patches appeared in my cheek & corners of my mouth.
I went to my GP in May who said it could be Lupus & prescribed Betnovate which cleared the redness after 3 days,Magic!!! Not. They returned once i stopped using the cream..
Went to Dermatologist July 1st who also is convinced it’s Lupus & took a biopsy from the worst patch. She prescribed Eumovate for morning & Protopic for evening for 8 weeks. I told her it all started after using the Retinol but she seemed adamant even though my blood test came back negative.
i used the Eumovate Saturday morning & the redness was better next day. I decided i would nt use it or the Protopic & just moisturise & hide the patches with tinted sunscreen & concealer until this morning when i awoke with red angry patches ALL over my face even in my eyebrows & under my eyes…
I honestly don’t know what to do as to whether to start the Protopic & keep using the Eumovate..If i knew i could use them short term until my face clears i wouldn’t be too bothered but i am afraid the patches will keep returning without the creams..
I feel so conscious of my face..i am wearing baseball hats to hide under..
Hi Pamela, I am sorry this is happening to you, particularly on your face, it seems so cruel doesn’t it. Short term use should be safe if you can start to reduce usage and wean quickly once skin has healed. But if you are having rebound flares, that’s a worrying sign. My sister used Protopic for just a short time and was able to wean back off it successfully. I would suggest speaking to your dermatologist again and maybe seeking a second opinion from someone who understands topical steroid withdrawal. I have loads of resources you can read on my FAQ page at https://whatallergy.com/tsw/ And as for using Eumovate on your face, I’d be very worried about that. I can suggest some natural emollients that I use which you can find here: https://whatallergy.com/affiliates/ I love Balmonds and Lyonsleaf. I also use creams made by B Natural and The Wild Nettle Co.
I’m SO glad I found your blog & IG Ruth! The Dermatologist I see through our Public Health System here in South Australia was none too happy when I said at my appointment last week that I didn’t want to use any more steroid creams because I suspect I’m suffering from TSW, to which she replied, there’s no such thing (there was more to the conversation but I won’t go into that now) and prescribed Protopic and whole body UV light treatment. I mentioned how the Derm I used to see there had prescribed Protopic at some point in time, and that the information sheet enclosed with it was rather large and didn’t have a word of English on it! From memory, I used it once, it made my skin worse so I never used it again. I can’t find the tube, but found the box it was in which tells me it was prescribed in January 2019 & has a use by date of January 2022. Having only recently discovered TSW, I’m still reading everything I can, putting it all together and in doing so I’ve had a bit of an epiphany. Every persons story I’ve come across so far starts with having eczema as a child, and therein my epiphany lay! I don’t think I’ve ever actually had eczema, I never had it as a child and the first Derm I saw in 1980 when I was 16 said the rash I had was Nickel allergic contact dermatitis (from the pendant and bracelet I was wearing), prescribed Celestone M cream to apply 2 to 3 times a day. I suspect that all along, I’ve just had a Nickel allergy that presented as eczema! Patch testing I had in 2013 confirmed the Nickel allergy along with a couple of other things, but that’s when the Derm I saw gave me a sheet about Nickel in food and I was able to make a significant difference just by switching from leaf tea to teabags.
I am really glad you found my blog too! and please don’t use that protopic. it’s evil stuff. I wish I never had, but am doing well on my healing journey now. Seeing definite progress. So fingers crossed. I think what it begins with is allergies that are poorly diagnosed, and cause eczema, and that none of just have eczema. There is always a cause, but by using the topical steroids we are stuck in a never ending addiction to them. It’s a cruel and terrifying experience, especially when so many doctors tell us to our faces that we are wrong. I’m so sorry your derm is not receptive. I just don’t understand where the duty of care went and why so many doctors seem to just refuse to even consider that a patient might have a point and know their body is struggling with medication. Thanks so so much for your lovely comment. It makes all this blogging seem more worthwhile.
Hi,
Ive been using protopic for about 5 years – only on my face and only obce a day. The dr did suggest cutting down to once or twice a week but to be honest, if i didnt use it my face would be a mess. My friends did comment about how much better I looked. I never usrd topical steriods on my face.
For the last four months I have started having a flare up every month. After the third month of this i went to the drs who prescribed antibiotics. I’d recently had a diagnosis of blepharitis so they were wondering about rosacea.
Ive just been back again and been prescribed antibiotics again. Interestingly this dr seemed a bit unimpressed that id been prescribed protopic at all and was wondering about something like TSW in relation to protopic. ( How i wish I’d seen this blog before I went!!!)
I can relate to many of the symptoms you’ve mentioned on your blog and the photos are startling similar to those ive taken if myself – puffy red skin, splits, sticky eyes, swelling and redness that completely matches the areas where i used tacrolimus.
Now I’m wondering where to go with all this. I dont use protopic when my skin is as bad as it is at the moment so maybe this is the point where i start to consciously withdrawal. I’m pretty sure that if i go back to the Dr’s she will refer me. But from what ive read here that doesn’t fill me with hope either. What are the real alternatives for controlling eczema????
Well firstly I’m really pleased that your one doctor didn’t think you should be using Protopic, in my opinion it’s done so much damage to my skin but I can’t really prove that as I also used topical steroids, although not on my face. However this withdrawal appears to affect areas badly even when we used no steroids on those areas. I am just working my way through withdrawal which goes in endless cycles of inflammation, hardening and crusting and then excessive flaking. As for how to manage eczema naturally, I really don’t know for sure if anything I am doing is helping. However I have written a FAQ area which should answer some of your questions https://whatallergy.com/tsw/ and I would urge you to look at ITSAN and Scratchthat charities for support and guidance. The community on instagram is also amazing. How did you find my blog out of interest? Was it a google search?
I have only ever used protopic on my face,never cortisone and whenever I taper off I get stuck in a cycle of progressive leathering 4-5days, flaky 4-5 days, incredibly soft 3 days, hot/red/bothered 2 days, leather, flaky, soft, etc… I am taking cyclosporine now. So I can’t imagine what it would be like without it. I also can’t find research on protopic withdrawal.
Hi Loli, this is protopic withdrawal, and I’m going through it too. Sadly there is no research. We are the research. One massive science experiment not being observed by the people who need to see it because they refuse to admit it’s a problem. I’m here with you though. If you check the Protopic section here https://whatallergy.com/tsw/ I’ve pulled together what I can find on the subject. Cara Ward has also written two very detailed blogs with case studies from lots of others going through this that I think you’ll find some comfort reading. Do you also get incredibly hot and sweaty? or kind of damp and oozy? Finally, you are not alone and that’s the only piece of comfort i can offer you. I’m not at 3 years and 3 months and finally finally feeling some relief
Hi Ruth,
I was prescribed Protopic/ Tacrolimus last year and used it in intervals (probably two or three) and then used it probably once a week and kept stretching the days in between doses. It came to a point where I just realised that Tacrolimus did not do anything for my skin if I didn’t constantly apply it. It’s almost two months since I used it last and I don’t intend ever to use it again. I only applied it to the skin above my upper lip where I’ve always had eczema but I noticed that after not using it and allowing to let my skin heal on its own it became very flaky, leathery and oozed a little (thank god for masks, I got really self-conscious but I am working on not hiding my face!) Now it’s so much better, even though it’s still dry and cracks appear from time to time but Protopic s definitely not the solution.
Thanks for spreading awareness about TSW and Protopic withdrawal!
This is so frustrating to hear, but I’m so glad to hear it’s getting better. We really do need to talk about Protopic more as the current TSW awareness is really just for topical steroids, not immuno suppressants. I think they’re so dangerous and damaging for skin. Thanks you so much for your comment and may you continue to hear. keep away from that Protopic!
Hi Ruth
Hope all is well with you. I’ve recently been diagnosed with atopic dermatitis mild on my face and my dermat prescribed me elidel cream (pimecromilius) for 5 days x 2 times and then continue with my skin care regime I.e. Qv gentle face wash ; QV day cream with spf 30 & QV night cream . I’ve noticed while I was using it my skin became very clear and I stopped using it on 5th day . Today is the 10th day and I’m noticing some dryness and redness ad also burning ( which last for 5 seconds) when I apply my day and night cream .
I did my own research and I came across your blog and many other. Can u guide me as I know if I visit my dermat again he will prescribe me with something more stronger. I just wanna live a healthy life with no depression . I live in Australia.
Thank u and waiting for ur reply
Hi Azhar, firstly I have to stress, I’m not a doctor. If you worry that your dermatologist isn’t going to give you the advice you think you want it could be worth exploring whether there is an alternative derm who has more natural approaches. I live in the UK and can only point you towards English providers but all of them support patients worldwide. Check out Jennifer Fugo on social media and she also has a podcast and website (US based) and also Rebecca the Eczema Expert. She is UK based. Maybe alternative therapies can help you. For myself I am now 4 years off the topical steroids and topical immuno suppressants. It’s taken me a long time and some horrible symptoms but I’m able to manage my skin better now and the for the first time am able to understand better how the whole body from gut to brain, affects the skin health. It’s going to be a long detective journey to work out all your triggers and then to also accept that sometimes this is just no rhyme or reason to why skin can flare up.
Starting with the immuno suppressant creams. I didn’t take Elidel but I believe Protopic is very similar. It worked really well for me too at first, so I just began to taper off immediately. Start by reducing really slowly. Again I’m no expert. Start putting less of the elidel on each time, and also to avoid creases, around mouth and nose etc. Reduce it day by day, and use it less and less over time. My sister was able to tape off in this way. She went to once at the weekend and then gradually extended the time slowly. Cold turkey from these creams can be really hard to do. Again I’m not a doctor, but what worked for me was keeping a food diary and working on my gut health. You have to do this by trial and error because no two people are the same. Could certain foods be causing inflammation in your gut that then shows on your skin? it certainly was for me. My mental health has also had a MASSIVE impact. If I’m anxious, I’m itchy. Every damn time. This can be harder to work on but can have quite good outcomes. Working on distracting yourself from the itch and finding good management techniques for getting you through itch attacks is key. I believe it is 100% possible to manage your skin without these creams. All they do is supress the bodies natural response. We need to start listening to what the inflammation is telling us. Please do speak to your derm, even if you think it might be a hard conversation because we need to have this difficult conversations until they start listening to our concerns. I wish I could be more help and give you the answer but for you, now the hard work starts. Please do keep in touch and ask me anything else. I will always try to help but I’m just bimbling along without any medical training so what do I know? Good luck and sending you calm skin and the peace to find the right path for your skin. xxx
Oh my dear Lord have Mercy! I was addicted to Topical steroids for almost 10 years as an olderish adult. My dr. told me I needed to get off, in January 2020. This has been the very worst thing that has ever happened to me in my entire life! I went through all the tortures of topical steroid withdrawal from January 2020 to December 2020, when I went back “for some sort of relief’. My dr. took one look at me, and said OMG, you need steroids! I said, No! This is steroid withdrawal! I do not ever wanna go through this again! She sent me to a dermatologist who put me on protopic………..tubes and tubes of protopic! I said, well how do I get off of this? She said, when you are better, just stop using it….yeah right!!!!! I stopped using it and WHAM BAM!!!!!! Same terrible tortures. I am now into month 5 of my third withdrawal. I sit and scratch all day everyday. I am a walking skin cloud, shedding constanly, crying daily, feeling just absolutely nuts! These drugs should be illegal! The only good thing that has come out of the torture so far, is I have finally lost the weight, that I had been trying to lose for years! I am taking so many supplements and herbal things from my two Chinese doctors. Thank God for them! But I still feel and look like crap, every single day…….going on 3 years now. If I could go back to the beginning, of having a little non-itchy rash on my face and neck…instead of seeking medical help, I would go straight to the Chinese Dr. I see now for acupuncture and herbs. I just wish I could see the light at the end of the tunnel, but still not there. If I could recommend anything to anyone……..never use topical steroids and never use protopic….get acupuncture and herbs…..they will work way faster and not have the torturous withdrawals. Effff my life! Is what I say often, almost daily. I waste my life by sleeping long hours on the weekends, and bathing for hours and hours and hours! Looking forward to feeling normal again one day!
I know, don’t we all wish we could turn back the clock to that initial rash? I’ve learnt so much about how to manage itching and rashes through TSW.I am now approaching 4 years TSW and in April next year 4 years protopic free. I don’t know if protopic caused an withdrawal as I’d also used topical steroids (very carefully at the advice of my dermatologist) so who knows. It really as been the worst thing i’ve ever been through. I wonder if I’d have really done it i’d know it would last 4 years! I can see a light at the end of the tunnel now though. Things that helped me, letting go and letting it be crap, resting and being gentle with myself, trying not to blame myself. Dead sea salt baths, tea tree oil, Lyonsleaf balm and Balmonds skin salvation and body oils. I am at the point now where I think some of it is just eczema and I can finally see what helps and what doesn’t. TSW is so intense it’s just too confusing to know what’s going on. i wish I could help you. I am sending healing vibes and sending you hope. It takes time and patience. And lots of screaming into a void. Take care and ask for help from loved ones. Do you have people who support you? I found the TSW community on line really supportive.
Hi
I have seen a comment on this thread from someone named Pamela that really resonated with me. If you read this please do get in touch if you can because I really think this side effect of Retionol (even in such minimal doses) really needs to be highlighted more. I am also going to log my experience on yellow card.
I bought and took over the counter Retinol tablets in December 2022. Immediately i felt my skin react but i thought this was a ‘purge’ and continued use cautiously. In total i probably used it a handful of times, maybe around 10.
However since then my skin has flared up – in particular on my face and under my eyes. My skin is tight, itchy, dry and swollen.
I was prescribed Hydrocortisone and used for around 5 days and then here and there and if settled slightly. But I haven’t used again as I don’t want to become reliant on steroids.
2 days ago I’ve had another flare up. My eyelid and under eye are red and swollen and today I have been advised to take anti histamine and then to use Protopic. I am nervous to start this because I don’t want to become reliant.
Do you have any advice?Shall i just wait it out?! It’s really awful because i’ve never experienced anything like this and it’s sooo uncomfortable.
Hello Hello Sana, gosh this is so complicated. I used Protopic for years so my experience is very different to yours. My sister used it and managed to taper off really quickly. What’s important to understand is that ALL these treatments are suppressing your immune system, so you have a choice. Can you handle trying to manage without suppressing? That takes time, lots of small things, bandaging, damage limitation, reducing inflammation etc. OR you give this a go. It’s not without risks but if you start to taper off quickly you might be OK. I just feel like my face is wrecked from it, deep deep wrinkles and lines, and a cycling TSW which could be from topical steroids, though never used on my face. It’s so complex. Trust your gut instinct and know you are not alone, whatever happens we are going through this challenge together.
Hi Ruth,
I’m fairly certain i’m going through TSW after quitting steroids in March. I quit steroids as I got perioral dermatitis on my face. GP prescribed zineryt which BURNT my face off and left me with terrible eczema on my face, although not sure if it was eczema. I’d questioned the solution the GP gave me asking if this would agree with my eczema prone skin and they said it was safe to use. It was full of alcohol and burnt like hell. I rang the GP and they said to persevere for a week which I did and it subsided a little but left me with terrible dryness and sensitive skin. I went to a private dermatologist who stopped me using that solution as it was killing my skin and switched me to elidel for my face and protopic for my body. I have been using them March 2023 – end of June 2023. Every time i tried to wean off the elidel on my face it was come back red, which i googled and seemed to be like red skin syndrome. I was on holiday getting sensitive to the sun and decided to stop using the creams completely as i was also getting constant shivers/muscle spasms throughout the day – which i now know to be called “zingers”.
My face is in terrible condition now. Oozing, crusting, flaking, swollen and red. My body is red too and soooo itchy. I’m trying no moisture therapy on my body and thats helping to relieve the itch and redness. I’m also trying CAP treatment, red light therapy, salt therapy and hyberbaric champers in an effort to speed up healing naturally (and all have positive results from research i’ve done). Nevertheless, my face gets me very down as it looks deformed and scary so I avoid socialising completely. I got referred to an NHS dermatologist who insisted on steroids. I said no. They put me on antibiotics as they thought my face was infected. I agreed and went back one week later no different. Today they want me to use protopic on my face for one month every day and then wean off it. They also gave me information on oral immnosuppressants if i want to explore that option too.
My question is, can should i use protopic on my face to ease my TSW on that area?
Do you think I’ll be able to wean off and not have as bad a skin as i do now?
Should i avoid immno’s altogether (in the back of my mind i’m thinking the worst effected places right now are my face which is where i applied immno elidel for 2 months so surely protopic will be the same/worse?)
Do you have any experience with oral immnosuppressants?
Thanks,
Vicky
I feel so sorry this is happening to you too, and it’s happening to me also. Initially protopic worked well on my face but never helped the rest of my body, so I only ever used it on my face. It was almost like a miracle, it made me look so young and my skin was amazing, but I could never seem to wean down well, I think I used it for too long, but started going to weekend only, then stretching that. When it was longer than a week the cracks began to appear. I don’t think anyone is talking about protopic withdrawal but I quit both topical steroid and protopic and i swear it’s the protopic that has ruined my face for so long. I am now at 4.5 years and have had some periods of really good skin this year. currently going through a mild flare, just on my face. I think protopic may be more nasty than topical steroids.
I also tried methotrexat immuno suppressants for about 9 months, at which point I got horrendous shingles and had to stop taking them. They wanted me back on them when I’d healed, which took about 2 months but i refused. In my opinion suppressing the immune system is not the answer. Sounds like you are doing all the right things, for me it was all about accepting, and going with it. Doing as much as I could to maintain some form of comfort and life. It’s so hard because I hear good and bad stories from others on Dupixent and other new treatments like Rinvok, and essentially, I don’t think they cure TSW, they just maybe help a bit, but come with horrendous side effects themselves in some cases. Just know you are not alone, that you MUST be aware of infection and get that treated if and when, but that you CAN heal naturally. there is such poor understanding of this condition it makes me so angry. The years of being gaslit and put on stronger and stronger steroids and more and more drugs, I wish I’d never used anything and would be give anything to go back to the original eczema.
So I’ve been using steroids creams for about 20 years, twice a day, everyday, non-stop. Was only told about the dangers of steroid creams last year. I went cold turkey and lasted about 1 and half months before it became too much for me (Full body flare, flaking, body temperature all over the place, legs swelled up massively, the oozing spread from my legs to my upper body, felt incredibly unwell) i got admitted to hospital.
Had to start steroid creams again…..
Dermatologist gave me protopic saying “It’s not dangerous like steroid cream, glad I did my own research before covering myself in that stuff”
Unfortunately I also have Crohn’s disease so avoiding steroids/ immunosuppressants is impossible for me. I’ve realised I’m quite a extreme case of TSW, cold turkey sadly isn’t an option so I’m going to try and taper down incredibly slowly and hope that helps. It may take years but I’m willing to give it a try and help my skin.
Thank you for this website! Wishing you all the best.
I wish you all the best, I do believe there has to be a way of tapering. And it has to be a good thing if you can limit your use and allow your skin to begin to heal. You are a little trapped aren’t you with steroids in your other medication too. I really think Protopic might be worse than topical steroids. my face is by far the worst affected part of my body and that’s the place I used the protopic. Wish I never had. It’s caused so much damage but I can’t prove it as they just tell me it’s worsening adult eczema.
How do you know it’s Protopic withdrawal and not steroid withdrawal if you have also used steroids before? Withdrawal symptoms can appear anywhere; even the areas you have not applied the medication on. It’s also possible that it was not withdrawal at all but instead a bad flare. You can’t rule this out especially if you have not found your trigger and you’re still exposed to it. Steroids, tacrolimus, etc. are all for treating eczema symptoms. They don’t cure it. So, it’s expected that if you stop the treatment while still exposed to the cause to experience the same symptoms if not worse.
I’m just worried that people will stop using the right medicine for them just because someone claims that the medicine that should treat them caused the symptoms to get worse.
Hi Koko, of course, you’re right. I will never know what the damage is that has been done to my face. I am kind of supposing that it’s the Protopic as my face was by far the worst affected, and only in a mask like shape, exactly where I used Protopic. I don’t want people to miss on treatment that could work well for them, however I do feel strongly that no one should use this topical immunosuppressant of often and for as long as I did with no tapering at all. My dermatologist just said, use it as much as you like, it’s completely safe. And when I tried to taper off, I was left in such a state. Not just the condition I had before but a complete breakdown in cycling withdrawal. The skin on the face is weaker, thinner and more sensitive so it’s totally possible that what I’m experiencing is just TSW but since I can’t go back and not use protopic I’ll lever know. Not for sure. However I do know others who NEVER used topical steroids, just protopic, and they too experienced a focused withdrawal where the cream was used.
I suppose I could have had a five year flare on my face, but I just feel the TSW cycles are so different to the eczema flares I used to get. The incessant day and night long bone deep itch, red burnt skin like sun burn, then crusting and flaking. Eczema is not at all like that.
Thanks for your comment though, I do love a debate.