Advice Please

Posted Thu 4 Jan 2024 09.14 by Raquel100

Hi I had my first ever flare up of psoriasis last year which affected my whole body and scalp. It was so bad it affected me mentally and I had serious sleep problems because of the itchiness. I was given various creams, shampoos and foams by my doctor but nothing helped. I was seen by a dermatologist fairly quickly and was given 3 choices of meds. The first was Ciclosporin which I was told I could use for max of a year. Following this another steroid which I could take for life or a vitamin A type supplement which was fairly weak. I went with the Ciscloporin and it had amazing results almost totally cleared up everything. However I have just had a really hectic couple of months including a house move and have just lost track of caring for myself and stupidly missed loads of my doses. It has now returned with a vengeance. My scalp is horrendous and I have itchy sores all over my body. Ive just had a blood test and Im waiting to be seen again. Does anyone know what I might be prescribed and can anyone please recommend anything that I can try to stop the itching while Im waiting? I feel awful ps. The sterioids side effect is facial hair so I have to keep waxing my top lip - I’m a real catch these days 😂😂

Posted Thu 4 Jan 2024 10.17 by S.
40years

Hi Raquel100! So sorry to read the above, it sounds really distressing. You wrote "I was seen by a dermatologist fairly quickly and was given 3 choices of meds." Weren't you offered sun lamp treatment? Obviously, everybody (and every body) is different, but after years of trying different creams and lotions, I tried UVB light treatment and it really worked. First at hospital and then I bought my own machine. It's quite an expensive item, but the best purchase I've ever made. I was wondering when I read your post why doctors DON'T recommend this treatment more often and then the light bulb went on. (PLease if anyone can tell me why I'm wrong, I'd love to hear) Perhaps it's my cynicism, or even paranoia, but I don't think doctors/NHS use light treatment as often as they could/should because there's NO money in it for the pharma industry. It might be slightly more expensive in terms of labour hours and maintenance, but when a tube of cream is costing the NHS (US!) a minimum of £50 per tube of cream, then it should be a no brainer. Rant over. Re the itching (and stating the bloomin' obvious) cut your finger nails as short as you can, then you won't be able to start scratching. Nivea do a nourishing/hydrating cream with lavender, which is very soothing. (I suppose any natural cream which contains lavender would probably have the same effect.) Avoid hot baths, which can at first feel soothing, but just dry your skin out and make it worse in the long run. Drink lots of water! Hope the above helps and your condition soon improves. PS Having just moved house, I know exactly how stressful it can be and how easy it is to get out of the habit of "self-care", but sometimes you've just got to put yourself first.

Posted Thu 4 Jan 2024 13.07 by Steview
A P sufferer for over 30 years, through good and bad times.

Hi Raquel100, sorry to hear your current situation. Any oral or injectable meds for psoriasis require regular checks and also for it to stand a chance of working one should stick to the recommended instructions on taking the tablets. Sorry if that sounds critical, not trying to be. Anyway depending on severity of your P, the derm could suggest numerous alternatives to cyclo. Starting with light treatment Other systemics could include methotrexate, acitretin (the Vit A you mention) and apremalist. After those biologics are next which if they work and no negative reaction could be on them for life. As for something to help now, keep moisturised of course, antihistamines and for your scalp maybe betnovate scalp application and a coconut oil based treatment. Good luck @ S I suppose there are many reasons to be sceptical of the NHS and decisions they make but there is normally a lifetime limit for exposure to UV for fear of skin cancer. That will be the reason that Docs don't particularly recommend you taking into your own hands. When administered in controlled conditions the nurses record your exposure plus if there any adverse reactions can consult or advise accordingly. DIY light treatment there is no professional control. Good luck

Posted Sun 7 Jan 2024 11.45 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

I think the difference between UVB and PUVA for NHS is more to do with patient compliance and labour - UVB is really a three times a week thing which is quite disruptive, particularly when you factor in travel time and parking etc. My PUVA treatment is a 45 minute drive away so it's really a two and a half hour chunk out of the day. Three times a week would be a big commitment. Definitely more practical to do it at home.

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