Going through topical steroid withdrawal (TSW) is hands down the hardest thing I’ve ever decided to do. I was going to write ‘done’, but it’s not done yet. At nearly 4.5 years in now I’m still experiencing TSW symptoms:
- Inflammation on my face, called red face syndrome
- Facial swelling that cycles into crusting and flaking on my face
- Loss of all my eyebrows again for the fourth time. I don’t like how I look without eye brows.
- Collagen stripping and deep crevices, like wrinkles but not the same as they itch deep inside
- I don’t like how i look in the mirror. I look ill, old, red, puffy and it makes me so sad.
- Red sleeves, typical of TSW. These I can handle, wrap, bandage and treat until the cycle passes.
- Open oozing wound on chest (this has just closed up and stopped oozing as of today so let’s celebrate the small wins!) When you’re just pleased your boobs have stopped oozing that says a lot about the general effort of every day life with TSW.
I can handle the rest of my body because I can cover, bandage and hide it much more easily.
The face is often the worst affected area in TSW
It’s just my face that breaks my heart. And please don’t comment below, but you look fine, fab, pretty… whatever… I may look all those things to you but how I feel about my appearance is very real and cannot be dismissed with some kind comments.
I see people staring, double takes and looking for just that little bit too long. I get lovely comments on posts on facebook saying things like, “are you flaring again? what caused this latest flare?” or “you look so much better”. Should I take these comments better than I do? because both annoy me. I know I’m flaring so please don’t ask me about it. If I want your advice I’ll ask you. And the compliments are so difficult to explain… sometimes I’ve spent hours deflaking in a dead sea salt bath and it’s the only day I’ve felt good enough to venture out… so what you don’t see is the carnage going on at home behind closed doors. It’s then very hard to be honest that things are not ok.
Find anything else to discuss with me, but unless I mention it, don’t make it my appearance… good or bad. I know this sounds messed up but I think I am very sensitive, and very proud to be sensitive. It gives me so much empathy for others. Just maybe take a few seconds before writing/speaking and avoid the elephant in the room!
Why it’s so hard going through TSW
It makes me feel triggered in so many ways. Seeing others heal, seeing people doing better, feeling a need to share but an overwhelming apathy that it’s boring to be still going through this. How does it help anyone to hear it’s still not healed?
- Why is this still happening to me?
- Why haven’t I healed yet?
- It triggers others who can’t believe I’m still going and approaching 4.5 years in TSW
- I get direct messages and comments from shocked and horrified people that I’m still not healed That’s not easy to hear.
- It is exhausting
- I have lost so much income and struggle to pay my bills because normal work is too hard
- Sleep is affected and disrupted
- Daily life is often a struggle
- I worry every day what my skin will be like
- It hurts
- I’ve forgotten what normal life is like because every day is consumed from the moment I wake to the moment I sleep with managing my skin.
Positivity has got me this far so it can get me all the way
Safe to say, I am usually a very positive person but I’m finding things hard at the moment. Probably compounded by a lack of finances so I am not eating quite so much fresh produce because my food budget each week is tiny. I have to spend on my essential dead sea salts and favourite safe skin care products, but otherwise can’t buy anything extra. However I am finding confidence in small joys and tiny improvements
- Learning how to manage itching and minimise damage from scratching is my super power
- Self care and self love are now my favourite hobbies
- I try to walk and do some yoga stretching every day – it really helps
- My skin can heal so it will heal again
Here’s some random pics of how my skin looked before and during TSW
Healing from topical steroid withdrawal is not linear, I have seen some incredible healing only to relapse again. But I know I will heal. I’ve seen others heal and know it just takes time.
A total lack of any support
It’s harder because if you’re going through TSW you don’t get any support or recognition, apart from a few people who have been diagnosed.
- No diagnosis
- Dermatologist refuses to discuss
- No support or advise from anyone in the dermatology profession
- No support from the NHS now since I’ve stopped using any mainstream medication, I now have to buy everything myself
- £1000’s spent on natural skincare, dead sea salts, bandages, tubular bandages, gauze, tea tree oil, ear cleaning procedures, therapy, all out of my own pocket.
- No support from my previous employers who basically made it uncomfortable and impossible to stay working – asking for help and telling my boss I was struggling resulted in one of the most humiliating meetings of my life. I decided to leave because I was then so poorly, not sleeping and bandaged up most days, crying in the loos. There was no support there and I decided to find rest and self care by leaving the job. It’s a long story.
- Lost income as I don’t and cannot now work full time
I am feeling a bit sorry for myself this week if I’m honest. It’s increcibly hard going through this on my own.
How long does it typically take to heal from TSW?
It can take anything from 6 months to 10 years. There are so many things that can impact healing and we just don’t know enough about the condition yet. How much, what potency topical steroids, how often used, where used, how long used for… it’s endless and no one was monitoring or recording things. I can’t remember at all now what exactly I used but I know I was very sparing in my use. Something always made me feel uncomfortable using the creams.
Fellow TSW survivor Kelly took ten years to heal. My friend Nina has been through 8 years in TSW and is still healing. There are so many of us in the 3+ years stage and I would call all of us long haulers. If you’re a long hauler please share what helps you get through this in the comments below – I could do with some cheering up.
Thanks to everyone who has been there for me xxx
I have some wonderful people who look out for me, help me and support me. I really am eternally grateful. I am doing OK too, I trust and hope that I will heal, because every year I think it’s easier. My healing crises are not as bad each time, but this one is pretty tough. I just don’t want to be seen, to witness the double take at my red, swollen or crusty and flaking face. I just want it to end.
And right now there is no end in sight. I think not having any idea how long it will take you to get better is one of the hardest parts of this healing journey.
Grateful for every silver lining and small victory
But having written all this down I do now feel a little better. I have a wonderful TSW whatsapp group which is a safe place to vent and share and they honestly keep me sane. One guy, Gav commented today – every second, minute, hour that you managed to not scratch is a win… so yes. there have been so many improvements. I am not itching all day and all night any more and can get a good amount of sleep so TSW can take my face and my eyebrows again it is likes. I am here for the long haul.
Hi Ruth,
I’m a long-hauler: 4 years (after using steroids for 19 years from the age of 15) and still waiting for my ‘healing’. I write this because I was searching for someone who could tell me when this might end even though I know it’s not ‘linea’ . I hate that not linea thing. It doesn’t help me measure the hope in the process. I thought it would be about 4 years when I started but here I am with a hot, red, sore face feeling so low. I am considering anti-depressants at this point to lift my mood. I am tired of managing this condition, tired of feeling crap and ugly and losing my natural fun outgoing self to this shit show of a recovery!
Sorry. One of those venting days.
Whilst I try not to be a victim and have a victim mentality, today I feel like a victim. I want to feel like a victim and feel sorry for myself. There are days when I think I can’t go on anymore and I cry. What’s the point. WILL I EVER HEAL?! I can’t grow old like this, will I look haggard for the rest of my life?
Okay, I need to shake this off now, I need to get a grip, be more positive….. I can do this.
I felt encouraged that you mention someone had to go a full 8 and 10 years before being healed… there it is, there is my hope. My question is, did those ladies experience what I am now or am I stuck forever?
Thanks for writing all your thoughts down, I now feel less alone.
I manage same as you, Dead Sea salt, collogen and omega 3 supplements, Avene balms, vaseline, good diet and sleep. Excruciate when I can. That’s all I can do x
Gem
Hi Gem, thank you so much for reaching out. It’s so tough. I’m now over 4.5 years and just had an incredible few months of such good skin. However i would look in the mirror and know that some deep creases and saggy bits/wrinkles could still perhaps heal? Well it seems the redness, itchy and flaking cycle must happen to continue healing and I’ve gone into another healing crisis. I’m trying to reframe it in my mind from being a flare (which is negative and out of control) to a healing crisis. Like this has to happen for me to heal.
I have heard that you CAN work out how long you will take to heal by knowing the strength of steroids used, frequency and how much you used. However who one earth can ever really know that? I used them on and off, with long periods without, for 35+ years. I’m 50 now who knows how long it will really take. I have also heard it could be one month for ever year used but that would mean I should be healed by now so we’ll leave that one on the table. There are so many factors.
I’ve tried so many things, from oxygen therapy and UVB to regression therapy and hypnotism. All of these things did help but are all so expensive and time consuming they’re not things I can continue to do, you know? I feel more now like accepting that it’s just random and frustrating is more peaceful and kinder for me as a way of coping. I try to be grateful for all the things that are good now, like even though I’m flaring I am able to work, I still go out with flaky or red face, I’m able to enjoy my life more. Don’t get me wrong, I have times when I just want to hibernate and stay inside so I don’t have to face the double takes, the eyes looking for a bit too long. the feeling invisible as people often ignore me and don’t know what to say. It’s tough. I do feel also like my life is on hold and I will never meet anyone, because who wants to be with someone who is constantly struggling, flaking, restless at night, itching, urgh. It’s a lot. Hang in there. You are not alone and you are doing so well. I feel like the end is there, somewhere and hopefully it won’t be too long. Follow your heart and trust you gut on what to do and what to try. But I feel acceptance and maybe forgiving our younger selves, this is not our fault. Sending healing vibes your way.
Hi there Ruth,
I’m very sorry to hear the pain and anguish you’re going through. I know what it feels like. I myself was a topical steroid user (clobetasol) for 18 years, having gone cold turkey on them in September 2023. I began my own painful recovery then, and while I’m not completely out of the woods I have made remarkable progress: elasticity has returned to my skin, flaking has all cut disappeared, my skin doesn’t break and bleed if I scratch it the way it did while taking corticosteroids. During my recovery, after the initial few months I had no flares and it became a relatively linear, albeit slow healing process.
While I cannot be certain why my own healing journey has gone differently to many other sufferers who seen to be caught in a loop of flaring, I’m reasonably sure, and hopefully my experience might prove useful to you.
At the same time that I began tsw I read the book “Ultra-Processed People” by Chris Van Tulleken. I also started listening to podcasts from Zoe Science and Nutrition where they largely speak about ways to improve your health through diet.
Influenced by these, I eliminated everything ultra-processed from my diet. The only food I’d eat would be food I’d cooked myself. I no longer ate from takeaways, and cut out alcohol, soft drinks, anything but water. If I was away from my home I’d get by on fruit and nuts until I got home to eat a proper meal. My snack food became 100% peanut butter and sliced apples (which I ended up eating by the tub nearly).
Absolutely nothing else would pass my lips other than these foods, which may seem extreme but I had been so long tormented by eczema and steroid addiction I felt it was a justifiable course of action. I also eliminated sugar.
I now believe that I have a reaction to either ingredients or a process used in the manufacture of ultra-processed foods. By cutting them out of my diet completely I enabled my body to heal. All of this might be specific to me, or you may be aware of these sources of information already, but I hope it may be of some use to you.
Sean
Hi Sean, this is so encouraging for others going through topical steroid withdrawal. I’m doing so well now, at just over 5 years, and I don’t consume processed foods either, they definitely affect my skin too. Not sure what ingredient but its not worth the Russian Roulette. Elimination diets have been so helpful for me too. Good luck with your healing and thank you so much for sharing.
I am a long hauler too. I had used on me or used steroids for about 39/40 years.
I am 8 years in. It was fairly good but I’m having a flare at the moment. It’s centered on my upper body. Fullish body…but we can ignore that.
I find lymphatic drainage massage helps…if I find time to do it.
I don’t care bout the red.. its mostly just the flaking that kills me.
Good luck.
Hello Melanie, thanks so much for your comment. It’s lonely out here as a long haul TSWer. You just feel like you aren’t trying hard enough, or would get better if you just ate better, cut this out, cut that out and tried this thing or that. All praise to the fuller body! It’s got you so far and it carries you around. Working on loving my body, fat, skin, blemishes and all, just as it is. Not easy. For me it’s the pain. If my skin didn’t bother me, or feel painful, tight and itchy I could deal with it all. This current flare is a so hard to deal with, I get this EH blister kind of rash all over my beard area on my face ( I don’t really have a beard, I just call it that) and its painful, wearing and so hard going to work in a school looking like that. But I will keep going and keep trying. I wish you all the best with your healing too and truly believe we can all get to a better place. I’d settle for just eczema. I know mine isn’t that as it’s like a mask where i used the protopic. I’m trying red light therapy now, with a little break because I’m scared to use it just now as it is so flared. Take and much love in TSW. Rx
I used elidel for ages. Very carefully as I had worse reactions while using steroids through the decades. I did have issues with it eventually but they went away quickly. I have had an eyelid nearly cracked through to my eyeball in years. But that saying we forget as the years go by that other factors enter. My daughter who suffers from adult acne recently said she tried a rosacea cream on the spots on her jawline and it worked.
Anyway that’s not what I wanted to say.
In the beginning I was horrid. My legs had such severe edema I had to buy edema shoes. Was horrible. Finally I went for lymphatic drainage massage and it started to clear.
Now recently last couple month my neck and chest were flaring and then I full out flared. Even on my face. I got to freak out the ppl at work!
So I went back to doing my own lymphatic drainage massage and it’s healing rather fast. Faster than expected. And my arms are lobster pot red…or for me..purple anymore.
I tried a different one with slow circles over the neck and groin and the usual everywhere else.
I remember on the boards the long haulers used to say about that and dry brushing. And fter spending bout 300 on stuff this time…I can honestly say the lymphatic drainage massage is the win.
Ita twice a day…25+ min. Not for the faint of heart.
What I found interesting is the tsw gave me a new way of looking at addiction. As I wasn’t mentally addicted. And my poor body when through hell while my mind watched.
Give it a go. Its free.
I put on an audiobook and count about 40 swipes or circles.
Let me know how you get on. Took a couple days to show, but it was my arms and neck that cooled down first.
What a great idea, thanks so much for the advice. I will look into this, but I’m not sure it’s what I need. I will do some research though, thanks so much. I don’t know how you can tell if your lymphs need draining?