TSW (Topical Steroid Withdrawal)

[Kat]

I had never heard of TSW until recently when I accidently stumbled upon a site. Steroids is something that I have always been cautious about when prescribed, but have had them by shots, orally, as an inhaler and in creams and oils so I found the information on topical steroid withdrawal informative.

I'm not putting links or info here as anyone interested can do a search but wanted to share the info for anyone using steroid creams and/or oils such as myself that had never heard of TSW.

[jiml]

I had never heard of TSW until recently when I accidently stumbled upon a site. Steroids is something that I have always been cautious about when prescribed, but have had them by shots, orally, as an inhaler and in creams and oils so I found the information on topical steroid withdrawal informative.

I'm not putting links or info here as anyone interested can do a search but wanted to share the info for anyone using steroid creams and/or oils such as myself that had never heard of TSW.

That's very scary Kat I've used steroids all my life but have always been careful and used them sparingly.
I had never heard of this but it's certainly a wake up call as it seems it's not that rare. Thanks for posting it.

[kh924]

Kat, I think it was in one of your posts that you mentioned TSW. I did a but of reading up on this and, WOW.

In my Acitretin week 4 post I note that my skin shedded and peeled in the prior weeks far worse than before. I thought it was from the Acitretin doing it's job but now I'm inclined to think it was due to topical steroid withdrawal. I had been buttering my body up in topicals off and on the last few months - my entire back and stomach, and occluding the steroid with cling wrap. My skin would feel softer the next day but I didn't always feel like going through the hassle of putting the gooey stuff on and trying to wrap myself up. It was during these short breaks when my skin would absolutely burn like it was on fire and I would itch and shed beyond belief...to which my reaction was "I had better put more of that steroid cream on to calm this down". VICIOUS CYCLE.

I haven't used any topicals at all for the last 2 weeks. Coincidentally, my skin is significantly clearer. I don't know if it's from the Acitretin, from not using steroid cream or a combination of both. I'd be interested to hear from others what their experience was like when they stopped using topicals.

I won't ever put that on stuff on my body again. EVER. I'm thankful that my exposure to the stuff has been pretty minimal compared to others. This really makes me angry - my doctor wanted me to cover myself in topicals twice a day and when I asked him about stopping after two weeks he told me not to. Grrrrrr...

[Kat]

Kat, I think it was in one of your posts that you mentioned TSW. I did a but of reading up on this and, WOW.

In my Acitretin week 4 post I note that my skin shedded and peeled in the prior weeks far worse than before. I thought it was from the Acitretin doing it's job but now I'm inclined to think it was due to topical steroid withdrawal. I had been buttering my body up in topicals off and on the last few months - my entire back and stomach, and occluding the steroid with cling wrap. My skin would feel softer the next day but I didn't always feel like going through the hassle of putting the gooey stuff on and trying to wrap myself up. It was during these short breaks when my skin would absolutely burn like it was on fire and I would itch and shed beyond belief...to which my reaction was "I had better put more of that steroid cream on to calm this down". VICIOUS CYCLE.

I haven't used any topicals at all for the last 2 weeks. Coincidentally, my skin is significantly clearer. I don't know if it's from the Acitretin, from not using steroid cream or a combination of both. I'd be interested to hear from others what their experience was like when they stopped using topicals.

I won't ever put that on stuff on my body again. EVER. I'm thankful that my exposure to the stuff has been pretty minimal compared to others. This really makes me angry - my doctor wanted me to cover myself in topicals twice a day and when I asked him about stopping after two weeks he told me not to. Grrrrrr...

Kelly, I've had a bit of the same experience. I started (per doctor) with topical steroids and was told to use 2x day. I thought since it was peeling off more that maybe that was a good sign. I will admit that I do like the scalp oil as my scalp gets so dry and itchy it was the only thing that gave me relief and I'm "suppose" to use it 1x day. After reading about TSW, I thought whoa! I've used a bottle of the body oil plus was on a med pac and had a steroid cream as well! For my scalp I'm moisturizing with a conditioner, just leaving it on and massaging it in (my hair is shinier lol) and that helps a little. I won't say I won't use steroids (they have their use) but I haven't used any in a couple of weeks. IF my scalp gets so bad again that I can't stand the itch and I'm having to scratch it, I would use the oil because I've already had numerous infections (probably from scratching). But yes, the TSW is scary stuff and not something needed on top of the psoriasis!

[Caroline]

I haven't used any topicals at all for the last 2 weeks. Coincidentally, my skin is significantly clearer. I don't know if it's from the Acitretin, from not using steroid cream or a combination of both. I'd be interested to hear from others what their experience was like when they stopped using topicals.

I won't ever put that on stuff on my body again. EVER. I'm thankful that my exposure to the stuff has been pretty minimal compared to others. This really makes me angry - my doctor wanted me to cover myself in topicals twice a day and when I asked him about stopping after two weeks he told me not to. Grrrrrr...

Kelly (& Kat),
This is indeed what I conclude time and time again, with all new members. They all go through the same path at the dermatologist. And those dermatologists, or other doctors, don't seem to learn.
The path via Steroids, creams and e.g. also MTX, is "wrong", just plain wrong, but they don't seem to know. And also don't seem to learn this in school, I explicitly call it school, as it can hardly be called University by making so much mistakes. (my frustration)

What I understood of Steroids is that they increase the making of new skin. Am I correct?
BUT Psoriasis is already an immune problem with expresses in ……. right, creating increasingly more skin-tissue. So while we already have the problem of increased skin production, we increase this again by using steroids
Now am I stupid or not, but this is going into every logic I can imagine.

Dr. Kunst, the improver of my type of medication, has said it to me, and it is also known in practice, if you stop with a psoriasis treatment, normally the psoriasis comes back in increased form. Unfortunately

[Fred]

This is indeed what I conclude time and time again, with all new members. They all go through the same path at the dermatologist. And those dermatologists, or other doctors, don't seem to learn.
The path via Steroids, creams and e.g. also MTX, is "wrong", just plain wrong, but they don't seem to know. And also don't seem to learn this in school, I explicitly call it school, as it can hardly be called University by making so much mistakes. (my frustration)

I don't think that it's because they don't know, it's probably more down to the protocol that they have to follow.

What I understood of Steroids is that they increase the making of new skin. Am I correct?

Well if you look here: Dovobet Ointment you will see under side affects the mention of Dry Skin, Eczema, and Psoriasis amongst others listed in Adverse Reactions.
So you are probably right (for a change)

if you stop with a psoriasis treatment, normally the psoriasis comes back in increased form. Unfortunately

Yes this is usually true, especially with something like Dovobet. One should wean themselves off it slowly, as stopping abruptly could make it worse.

For myself I always keep a tube of Dovobet handy as it can soon get the job done, but you must learn to use it properly and I think that is where a lot of people go wrong.

[Kat]

I haven't used any topicals at all for the last 2 weeks. Coincidentally, my skin is significantly clearer. I don't know if it's from the Acitretin, from not using steroid cream or a combination of both. I'd be interested to hear from others what their experience was like when they stopped using topicals.

I won't ever put that on stuff on my body again. EVER. I'm thankful that my exposure to the stuff has been pretty minimal compared to others. This really makes me angry - my doctor wanted me to cover myself in topicals twice a day and when I asked him about stopping after two weeks he told me not to. Grrrrrr...

Kelly (& Kat),
This is indeed what I conclude time and time again, with all new members. They all go through the same path at the dermatologist. And those dermatologists, or other doctors, don't seem to learn.
The path via Steroids, creams and e.g. also MTX, is "wrong", just plain wrong, but they don't seem to know. And also don't seem to learn this in school, I explicitly call it school, as it can hardly be called University by making so much mistakes. (my frustration)

What I understood of Steroids is that they increase the making of new skin. Am I correct?
BUT Psoriasis is already an immune problem with expresses in ……. right, creating increasingly more skin-tissue. So while we already have the problem of increased skin production, we increase this again by using steroids
Now am I stupid or not, but this is going into every logic I can imagine.

Dr. Kunst, the improver of my type of medication, has said it to me, and it is also known in practice, if you stop with a psoriasis treatment, normally the psoriasis comes back in increased form. Unfortunately

My understanding (which admittedly is still limited) on the topical steroid withdrawal is that your skin becomes addicted to steroids in that your body becomes dependent on the steroids. The symptoms are very similar to eczema or psoriasis and you can have flare ups with TSW. The difference if that if you stop steroids, eventually you can be able to be cured of TSW (although the process can take some people years) and with most if they ever use a steroid cream again, it's right back to the "addiction". I would imagine (again, my knowledge is limited) that if someone with a skin problem developed TSW, it could be hard to tell as the symptoms could mirror the disease they are being treated for. So it makes me wonder.... if someone is being treated for eczema or psoriasis using steroids and then put on meds, if they are not clearing up and still using the steroids, could it be the body's addiction to steroids that is keeping them from getting better?

I don't think I have TSW, and I'm not anti steroids, but I do think it's something to be very aware of.

[kh924]

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.

[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.

[jiml]

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