Hi there, I have been on countless biologic drugs for my skin. I suffer from Generalised Pustular Psoriasis (GPP) some have been great for my skin and others not so good but I am really struggling with side effects. Has anyone else suffered from severe side effects? I don’t know what to do. Do I stick with the drugs and suffer the side effects or do I try less effective measures and potentially end up in hospital again? Thanks x
Posted Tue 18 Jan 2022 15.48 by Steview A P sufferer for over 30 years, through good and bad times.
Hi Laura, just my opinion for what it's worth.
I suppose it depends how severe the side effects are I.e minor nausea, fatigue etc or major problems for organs. Plus everyone reacts differently.
From my POV, up to now I am suffering little side effects on biologic, over two years in. The previous thirty years though I put up with side effects of various systemic meds for the main reason to have a sort of normal quality of life, never 100% clear of P though.
What I am getting at is, what is worse, living with side effects or being covered in P? Now if you have to stop for medical reasons then that would be different. Good luck.
Hi Laura
I take acitretin and have suffered varying degrees of side effects at different times over the last 12 months the effect on my hair being the most upsetting. However this time last year I couldn’t use my hands due to the pustules and cracked skin so the side effects have been worth it for me as at times I was so low I really wondered what the future held.
Everyone needs to make their own decisions .
Hope you find what suits you best ☺️
Posted Tue 18 Jan 2022 18.31 by Steview A P sufferer for over 30 years, through good and bad times.
@ Paddy, dovobet is a strong steroid ointment. Long term or over use an cause problems to your skin becoming thin and therefore more susceptible to injury at the most minor abbasion. Also if you apply to healthy skin it could cause burning or irritation to that area.
Posted Wed 19 Jan 2022 14.50 by OhNo_NotAgain?
@Paddy, I have been using Dovobet for several years with no ill effects at all. However, I apply it sparingly and as far as possible only to the patches of psoriasis not to healthy skin, although there is always some "overlap" but I have never experienced burning or irritation of any skin from using it.
Dovobet contains a combination of steroid and a synthetic vitamin d analog.
If you do not have it here is a link to the EMC product Summary and to the patient leaflet (2 tabs): https://www.medicines.org.uk/emc/product/1609/smpc
I have had plaque psoriasis to varying degrees since 1980, and used a combination of topical steroid and topical coal-tar treatments. Most (if not all) steroids are recommeded not to be used on the face or genitals, as those areas are particulary susceptible to thinning of the skin, and the skin is already thin compared to other parts of the body.
Back in the 70s and early 80s one the most commonly prescribed steroids for the skin was "betnovate", and there was a condition often referred to as "betnovate face" where people had nevertheless used betnovate on the face and over time it had thinned the skin, causing the blood below the skin to show through more readily than normal.
Sometimes a doctor might specifically advise to use a steroid for a limited time on the face or other sensitive area, but they usually advise to use it sparingly and under regular check-backs from the doctor. The patient leaflets advise against it to try to dissuade people from using steroid like this without medical supervision.
3 years ago I had an outbreak of guttate psoriasis all over my trunk. After discussion with my GP I decided not to use dovobet as it would have been a laborious task to spot treat each spot of psoriasis and I did not want to slather steroid over all the skin, althoug many peoiple do so with no ill effects.
Posted Sun 23 Jan 2022 03.26 by Mary1968
Hello LauraHM
I was getting bad side effects from the medications.
I particularly noticed these as I was getting older, more so than I was a child.
After 40 years of using different kinds, and experiencing headaches, pains and thinning skin. I just thought that was how it was.
Then one day I noticed my skin was almost transparent through the thinning from steroid creams, and there and then, I stopped all medications as a result. And have never used since.
I didn't know any better, as my doctor told me there was no other options. And I am still kicking myself for putting all my trust him
After much trial and error, I eventually cleared with diet and supplements
Then again, some people don't care about any side effects as long as the product is working, so depends what camp you fall into.
Posted Fri 28 Jan 2022 13.27 by Samuzza
De: daivobet and other steroids, Does thinning skin recover once you stop using the medication?
Does MXT have less side effects than biologics?
Cheers 🙏
Posted Fri 28 Jan 2022 14.01 by Steview A P sufferer for over 30 years, through good and bad times.
@ Samuzza, from my experience of long term use of steroids, mtx and more recently biologics.
1. No
2. No
Although it may depend person to person or what meds one is comparing.
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