PSORIASIS !!

[soriasis]

Does anyone have any experience with either phototherapy or methotrexate for psoriasis?

I have it horrendously all over my scalp. I can’t sleep at night because it hurts so much, it cracks and bleeds and it’s absolutely awful. I get big chunks of scalp falling off at work which is obviously embarrassing and it leaves my scalp red and raw and bloody too. I’ve tried every topical application -both steroidal and non steroidal- and according to the dermatologist we’ve exhausted all options now.

does anyone have any experience with phototherapy for the scalp? Apparently it might not work as effectively because my hair is so thick over the area? Or other drugs like methotrexate? I’m absolutely desperate for this to be better but nothing is working and it’s destroying my life. Apparently it’s a grey area whether I should be trying these more harsh treatments as the psoriasis isn’t severe over my body- it’s only on my scalp and ears and upper neck area whereas other people have it much more widespread. Although the areas I do have it on are really severe and I’ve had 6 hours sleep over the last 2 days because it hurts so much to lie on!

any experience or knowledge would be welcomed and appreciated x

Sorry to hear this @soriasis. I am in the same boat. Its truly awful. Sorry I don't have any solutions for you but I'm watching with interest in case mumsnet comes to the rescue again 🤞🤞🤞🤞

I know several people with Psoriasis (including myself - plus Psoriatic Arthritis - and DP). One is absolutely fine on MTX, one is unmedicated other than the occasional dab of steroid but used to have light therapy when he was a child and one (me) didn't get much relief from the MTX but it not working well led to going onto Biologics, which have been lifechanging.

In the meantime, though, sometimes an im steroid can help immediately to calm things down a bit whilst the MTX starts up - if at all possible, ask about injecting MTX rather than trying the oral route first, as it has fewer side effects and a lower dose is more effective by that method. And follow their instructions to the letter.

Have you tried Betacap? Only thing that's ever worked for me. Not perfect but no one would know I had scalp psoriasis unless I told them.
Phototherapy won't work on the scalp unless you shave your head and methotrexate damages your liver with longterm use.

yeah I’ve used it, it unfortunately made no difference at all.
Yeah that’s what I was worried about re phototherapy- my hair is thick and will completely block it but obviously I don’t want to shave it either x

I usually soak my scalp with Betacap, let it dry, then wash my hair with Polytar shampoo and use a scalp massager.
After rinsing off the shampoo, I apply a conditioner then use a headline comb to remove all the loose skin before rinsing. It's time consuming but worth it.

*headlice

I had a similar issue in my late teens and was about to start methotrexate. Apologies if you have already tried this but I was prescribed diprosalic scalp application (steroid) (which I had tried unsuccessfully before) but this time put it onto my scalp every 12 hours for 48 hours and in between covered with a shower cap. Ended up with hair looking like medusa. Washed it out after the 48 hours and over the next week my scalp completely cleared up. Ever since just used it for top up doses occasionally but has never recurred in the same way.
Hope this helps!

thats great to hear you got something that worked for you! It’s such a horrible condition isn’t it.

unfortunately betacap and coal tar shampoo made no difference to mine but thank you anyway x

Thank you so much for the suggestion! Unfortunately I’ve tried it and it didn’t help the psoriasis but really appreciate the suggestion and glad you got something that helped yours! Thank you anyway!

I'd certainly try phototherapy first as MTX is not a nice drug (but good for sone I understand).
I have psoriasis in my scalp too, (as well as my body) all over, started as small patches on either side as a teen. The best it's ever been was when I took two 2 week holidays to sunshine one summer. It literally disappeared for almost a year. I certainly didn't shave my hair either.
Good luck I really hope you find a good solution

There was a thread on here not too long ago with this exact problem. Let me have a look and I'll try and link it

https://www.mumsnet.com/talk/am_i_being_unreasonable/4713926-psoriasis?postsby=psoriasisstruggle

I have psoriasis (mainly my scalp and feet) and psoriatic arthritis. I started methotrexate for the PsA and that has pretty much cleared up my psoriasis as a result too. I get the old red patch and a bit on my feet but nothing like I used to - and that's really only if I have to miss a methotrexate dose or very stressed.

I have pre-filled injections for methotrexate as the tablet form didn't really suit me.

My sister has psoriasis pretty much all over her. She tried phototherapy and all creams known to man. She avoided methotrexate for years. Eventually she did go on methotrexate injections and the difference is amazing. Her quality of life and overall health is so much better. She has liver function tests every 6months and so far all is well in that regard. She's sorry she didn't go for it sooner.

No advice on treatment but try moo goo products. They do work. Some CCGs have them in their formulary for prescription.

I've had psoriasis for 25+ years - scalp and body. My scalp used to be covered and I could pull out chunks of skin.

It sounds like you've tried all the usual topical options.

In your position now I'd try natural treatment before anything more invasive. Stop all sugar, alcohol, dairy and wheat products. Use gentle products - like the moo goo stuff a previous poster suggested. Get as much kefir/kombucha etc into your body. Get outside and exercise as much as possible.

I genuinely think from everything I've learned over the years there is much to be gained from lifestyle changes than topical drugs or ingesting strong meds.

Wish you all the best.

Sending you sympathies OP.
I have scalp psoriasis which went away during pregnancy, but my little one was born a couple of months ago and now it's back with a vengeance. Not helpful when you're already sleep deprived and dealing with a postpartum body.

My GP prescribes betacap but is otherwise unhelpful. I saw that Philip Kingsley has a service where you can go to see a tricholologist and was thinking of booking in. Apparently they apply a treatment - which I assume is just removing existing, but it would give me a clean start to treat maybe? I don't know. Interested if anyone happens to have been before I spend about £400 on the appointment.

In the same boat. I sometimes feel like my life is ruined as it affects everything even what to wear and no sleep..
I’ve tried lots of lots, not much helps at all apart from washing my hair everyday to get a couple of minutes respite before it dries and itches again.
But best so far is to put salicylic acid vaseline ointment on my scalp overnight, then wash it out (you need to put fairy liquid in dry hair to wash it out, then shampoo!) Of all shampoos I’ve tried it’s Kérastase Spécifique Bain Anit-Pelliculaire that works best, it contains salocylic acid and you only need to use a tiny amount. I use weDo conditioner, on my scalp and on the hair. Comb through with a lice comb before hair is dry and just after it’s dried. It is so time consuming, but I’ve tried so many things..
The shampoo is expensive but worth it. When I first got scalp psoriasis 5-6 years ago I lost so much hair, and I had infections all over with yellow spots. It was awful!!! Luckily I have thick hair. I sometimes use Roots mintboost from Lush in the evening if I really can’t stand the itching, because it does soothe it straight away even if it’s just temporarily. Sorry for the long post..

I also trest myself to go to a really good hairdresser (who actually has scalp psoriasis herself, although not nearly as much), so at least my hair looks ok on the outside as I wash it every day. She is understanding, and it makes me feel a little bit better as it’s such a embarrassing condition to have (apart from the pain!!).

I am similar OP, tried everything over the years with no improvement, and unfortunately my consultant said phototherapy isn't usually very successful on the scalp. He also said that usually it comes back when you stop the sessions so he doesn't recommend it. I was on the waiting list for phototherapy initially, but then my consultant said it's 6-10 weeks of sessions 3 x per week. When I looked into it further you could only book 2 weeks worth of treatment at a time and it was 'first come first served' for taking time slots. You can't just sign up to a regular appointment for the duration of the treatment. As a single mum I just couldn't commit to doing that with taking so much time off work, juggling childcare for kids at random times, plus affording the travel to the hospital 50 mins each way 3 times a week. So I decided to go for the tablets instead which I'm about to start, got everything crossed.

Anecdotally a family member has it all over his body, he cut out gluten and it has drastically improved.

Photherapy isn't great for scalp psoriasis as it doesn't really penetrate hair. The guidance for methotrexate is that it can be used for severe localised disease not responding to topical therapy. You are well monitored on methotrexate and if you tolerate it can be on it long term. I'd take it in your position, it will give a much better chance of long term clearance. If it doesn't suit you then you can stop.

I’ve tried Moo Goo and it didn’t help either unfortunately but thanks. Also tried natural/dietary/lifestyle changes. Again, no help unfortunately. That’s why my dermatologist said we’ve exhausted all other options now x

I have Crohns and psoriasis. Neither was considered severe enough for a biologic drug. Then I had a severe flare of my Crohns a few years ago and lost most of my colon. To control it I was put on a biological drug called infliximab. Glorious side effect - my psoriasis disappeared. It has started coming back a bit now but for 4 years was totally gone. I have an infusion of the infliximab every 8 weeks. Maybe ask your dermatologist about this?

My husbandd has psoriatic arthritis and was put on methotrexate. The psoriasis cleared up a great but made him feel really ill and damaged his liver