TSW (Topical Steroid Withdrawal)

[Kat]

I read that it's best to stop Topicals cold turkey and that by continuing to use even the smallest amount it's keeps the reaction active in your system. The websites were pretty adamant about not tapering. They make a case for cold turkey much better than I can state. Interesting reading.

Yes, I read the same. I want to think it's ok to use sparingly (with all the docs prescribing it and of course not if you have TSW) but it is definitely a concern. But... I know it's best just to not use any more and I hate that as it was the only good relief I was getting from itching.

I had never heard of this and it's something I have not experienced or considered I knew the steroids can thin the skin, but I've never experienced peeling
Is it caused by overuse? Or wrapping to strengthen the efficacy.
My derm used to wrap me in coal tar, but as far as steroids are concerned I was told not to apply in the folds of the skin as this will intensify the effect, I suppose the same as wrapping in film .
I will always keep a tube of dermovate for emergencies but I can understand if you have this reaction not using again

For me the peeling wasn't bad, it was more just an easier removal of scales (which is hard to explain). I feel that there is a place for steroid use as I have benefitted from them, BUT knowing that something like TSW exists it raises the question of "how much is too much?" And of course for each person I would imagine that is different. There are most likely people who have used a lot of topical steroids and never had TSW, and those who have used very little that develop it. I'm not willing to say I won't use topical steroids as I have had 3 doctors whom I consider good to prescribe it this past year and I've never had a problem using them. But from reading the info on TSW, the symptoms are very similar to many other skin problems, red scaly itchy skin so if you already are having those symptoms, how would one necessarily know?

Yet, when the only way to guarantee not developing TSW would be to stop all steroids...... it does make me question the pros vs the cons. Definitely a talk I plan to have with my doctors.

[kh924]

I intend to do the same Kat. I'm going to ask why he didn't tell me about TSW, especially because he wanted me to continue to use steroids long after 2 weeks over an extensive area of my body AND occlude it. I swear Dr's prescribe something they know will give you side effects just so they can then prescribe you something else an so on and so on

[kh924]

Hi everyone, wanted to give a quick update on this thread as well. Have not used any topicals whatsoever since I stopped in September and will never, ever you go back on them. I am 100% convinced that topicals made my condition worse, as well as tanning beds. I think I definitely exacerbated my initial flare by tanning too often and getting sunburned on my torso and then applying loads of topical steroids and wrapping myself and cling wrap to try to make the burning go away. I'm interested to hear how others are doing with their topicsl steroids and if anyone has jumped off them and seen improvement after stopping topicals

[Andrew LG]

Hi everyone,

I read this thread a couple of weeks ago and I thought I would share my story as a contribution to the community. I was diagnosed with psoriasis about 4 years ago, and was prescribed Dermol. At first my psoriasis was restricted to a small area on my wrist - a spot of skin aggaravated by a watch strap. Within a a couple of years my psoriasis spread to other areas - my elbows, ankles, and my scalp. I tried different treatments but Dermol seemed to be the most effective. 

Then a couple of years ago I started to get rashes flaring up around my eyes which I thought was just another psoriasis breakout. I started to apply Dermol around my eyes (against the label advice), and this seemed to manage okay.

A few weeks ago I was doing some reading on the web And stumbled on this forum, and this thread. I realised that there was a possibility the relentless spread of psoriasis to other parts of my body, and the constant rash around my eyes may in fact be partly due to my topical steroid addiction and that I had all the symptoms for Red Skin Syndrome. 

I decided then to go cold turkey and stop using topical steroids altogether. The first ten days were dramatic. My psoriasis didn't flare up too much - but the skin around my eyes became intensely red, itchy, and burning. At first I used coconut oil, but then changed over to a moisturising cream.

Now, just over two weeks later the red, itchy burning skin around my eyes has almost totally cleared up. For the first time in several years I am not using topical steroids, and I am not suffering from Red Skin Syndrome. My psoriasis is still a thing (of course) but I am so pleased to have put the topical steroid addiction past me. I hope this post helps to anyone else out there suffering similar symptoms. 

All the best,

A.

[jiml]

Hi Andrew and   to the club and thank you for sharing your story with us. I’m sure it will help others who are also suffering the effects of steroid withdrawal to read of your experience

Jim

[littlestar17]

Hi everyone,

I read this thread a couple of weeks ago and I thought I would share my story as a contribution to the community. I was diagnosed with psoriasis about 4 years ago, and was prescribed Dermol. At first my psoriasis was restricted to a small area on my wrist - a spot of skin aggaravated by a watch strap. Within a a couple of years my psoriasis spread to other areas - my elbows, ankles, and my scalp. I tried different treatments but Dermol seemed to be the most effective. 

Then a couple of years ago I started to get rashes flaring up around my eyes which I thought was just another psoriasis breakout. I started to apply Dermol around my eyes (against the label advice), and this seemed to manage okay.

A few weeks ago I was doing some reading on the web And stumbled on this forum, and this thread. I realised that there was a possibility the relentless spread of psoriasis to other parts of my body, and the constant rash around my eyes may in fact be partly due to my topical steroid addiction and that I had all the symptoms for Red Skin Syndrome. 

I decided then to go cold turkey and stop using topical steroids altogether. The first ten days were dramatic. My psoriasis didn't flare up too much - but the skin around my eyes became intensely red, itchy, and burning. At first I used coconut oil, but then changed over to a moisturising cream.

Now, just over two weeks later the red, itchy burning skin around my eyes has almost totally cleared up. For the first time in several years I am not using topical steroids, and I am not suffering from Red Skin Syndrome. My psoriasis is still a thing (of course) but I am so pleased to have put the topical steroid addiction past me. I hope this post helps to anyone else out there suffering similar symptoms. 

All the best,

A.

Hi, how much did you use? was it just on your eyes? i have been using steroids like betnovate and hydrocortisone for 15 years but only recently in the last 6 months started using them on my face. I am now going through TSW and going through hell and its only been 1 week. I had swollen and a red face which no longer burns but peels lots. Its difficult to know how far along i am, but did anyone else have the same? how long did it take before the redness/peeling stopped?