Personal Story & Seeking advice

Posted Wed 27 Sep 2023 14.50 by Harrymlee

Hi, I am 28M who was diagnosed with psoriasis about 7 years ago after coming back from holiday. I was told by a dermatologist, my psoriasis was caused by an infection and despite going on a course of antibiotics it has persisted to stick with me for this time. Not sure what other’s experience is like with a dermatologist but after seeing 4 different ones, there want to rather mask the issue instead trying to fight it head on. The most effective treatment I have had to date is UV Light therapy. I had done it over a winter leading into the summer and my psoriasis was almost clear for a year! However it came back the following winter. I have recently seen a dermatologist and they have recommended to try non-biological treatment in the form of methotrexate, ciclosporin or Acitretin. Looking up the side effects and risks, I am not convinced on trying them out. Has anyone got any experience taking either drug? And also what was the outcome? Lastly I am in two minds about going private and seeking an specialist help as I am not sure whether it would be any different to the help I would receive from the NHS. Sorry long read but any help would be appreciated.

Posted Wed 27 Sep 2023 14.57 by PrincessDi

I took methotrexate and it cleared me completely, and I was in bad shape. The only thing was the doc wanted a liver panel done every month to watch for liver damage and it just became unaffordable. I've been on 2 different biologics, Enbrel for about 7 years and now Humira for 6 years. I live in the US and had to change due to insurance, I have had no issue with either one and have stayed clear, my scalp was probably the worst cause there was no covering that up.

Posted Wed 27 Sep 2023 15.48 by andrea
have had p for too many years

Hi I’ve been on methotrexate for 10 years. 95% clear. I started on low dose working up to 17mg. Apart from feeling tired I feel great. Every one is different so some don’t tolerate it. You won’t know until you try. Light therapy is a great booster which I still do during the early spring as there are a few spots on my legs. I have a phototherapy unit at home . Keeping your skin exposed to the sunlight is beneficial but still use sunscreen. I also take 3000 iu Vitamin D & Omega 3. Wishing you all the best.

Posted Wed 27 Sep 2023 21.41 by Margaret W

Hi, I have been injecting with methotrexate for the last nine weeks for scalp psoriasis. Side effects a bit rough initially but since taking daily folic acid much better. The scale on my scalp is improving and there are signs of new hair growth. Everyone’s different but give it a go

Posted Thu 28 Sep 2023 16.12 by Steview
A P sufferer for over 30 years, through good and bad times.

Hi Harrymlee, sorry to hear about your current flare up. We can all react differently to treatments so I am only giving opinions on my experience of taking all three meds you mention. Acitretin - I took this for probably too long t.b.h. but I was never fully clear of P for the duration. The side effects were the nasty aspect to this drug. The only benefit over the other two being it isnt an immunosuppresent. Cyclosporine - This was a really effective treatment but only a short term med (a year or so). Again suffered side effects but different to Acitretin. Methotrexate - Again never fully clear. Stuck on it for ten years with decent quality of life. Yes there were side effects but put up with it for the sake of the benefits of the drug. Again my opinion if I had all the choices again and my P was severe, I would go for Cyclo, followed by Mtx. I wouldnt even consider Acitretin. Good luck, and hope whichever you choose works for you.

Posted Fri 29 Sep 2023 19.27 by Berry (edited Sat 30 Sep 2023 06.44 by Berry)

I envy anyone who was diagnosed years ago! This seems like something that would be hard to get an accurate diagnosis for... I'm still searching for answers, myself, and planning to ask my primary care Dr. about psoriatic arthritis when I see her next.

Posted Tue 3 Oct 2023 20.03 by Yacht

I never go near methotrexate, cyclosporine or acitretin. Way too many horror stories out there (e.g. liver damage). They are "old school" meds. Some are chemotherapy. For psoriasis, they are low-efficacy, high-toxicity meds. For example, oral MTX only has about a ~10% chance of full clearance. A hard drug, for a soft result. Not worth the risk (for me). Doctors (in the UK) like them because they cost pennies. They are very cheap. That is why they still get pushed by the medical community.

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