Is there any hope? Need to hear from you

Posted Wed 21 May 2025 14.28 by P sufferer for over 20 years

Hi, I've just joined this group and spent some time reading through some of the forum. I'm hoping some have positive stories, and some who have found something has cleared their P up for a decent amount of time? Please let me know. I'm not sure if this is the right place to post so please let me know if I should add it somewhere else. For reference, im from the UK, under the NHS, female, aged 43, active, no other underlying conditions that I know of. So, it started when i was aged 17. I had tonsillitis, and then a short time after that, I fell over and scraped my arm. The scrape didn't heal and got worse, more red and it started to look thick, I started to get some red spots around it that spread further down my arm. I went to the GP who diagnosed, (I think ) Guttate Psoriasis. It spread everywhere really fast, new ones just kept coming and the older ones grew bigger. Covering arms, legs, torso, bum, scalp, ears, everywhere. Tried numerous steroid creams, ointments, coal tar products, things to put in the bath, and scalp shampoo, gels etc. Nothing worked. I went for UVB light treatment that cleared my full body. I was just left with some flat marks where the stubborn scales had been. I went on my first girls holiday loving life, that my P had finally gone and the sun was amazing clearing up some of the flat marks that turned the same colour as my suntan! A few years later it came back. But I think it was plaque psoriasis that I got this time. Tried all the lotions, ointments, cool tar again but it was relentless and lasted a long time, a lot of time and energy applying these things. I vaguely remember trying Dithranol i think it was callled, which was applied in the hospital. And some years later i was prescribed it at home. It came in different strengths. Looking back it wasn't right as I spent hours applying it to all the dots all over me. I went for 2 more rounds of UV B light therapy over a 3 year period when I had my two pregnancies as they said it was the safest option. The treatment didn't work as well the 3rd time though. I was discharged after having the agreed UVB course but still had P there. Not what I'd hoped after my first experience being fully cleared. Fast forward several years and putting kids first I just got on with it. I alway had active P, it was always there, always getting new ones. Getting skillful in hiding, what to wear, excuses if I didn't have an outfit, feeling anxious about being asked to do something that meant some skin would show knowing I just wouldn't do it. I spent £1000 on a home UVB light machine in desperation. It kept the P at bay for a while but never cleared it. Then I feel I over used it, so I stopped. This was about 10 years ago. About 3 years ago I was prescribed Enstilar. It was amazing, why didn't I get this sooner? Within 2 - 3 weeks it was gone!! I couldn't believe it. The freedom of wearing a t shirt and feeling confident was an amazing feeling. But it didn't last. The P started coming back again. I've been putting out fires the whole time. And that's where I'm currently up to with treatments. I did try the blueberries a couple of years ago but saw no difference. I had a dermatology appointment yesterday and I explained the Enstilar does take then away when new ones come, but I really want to stop them from coming. They offered light treatment again, but I won't go again for fear of skin cancer. (I also used sunbeds in the late 1990s). They are referring me to hospital for Methotrexate. I'm booked in for blood tests and a chest X ray. I feel uncertainty as it's a risky drug. Is it worth it? Will it be trial and error and need to try drug after drug?. Will I ever have clear skin or do I resign myself to thinking this is how I will always be? Has anyone been in a similar situation / stage and offer any hope? Any advise much needed please. Thank you

Posted Wed 21 May 2025 14.41 by OhNo_NotAgain?

If you are put on Methotrexate, you will be given regular blood tests to monitor how your body is tolerating the methotrexate. I would not regard it as a "risky" drug but some people cannot tolerate it.

Posted Wed 21 May 2025 17.48 by Lazydays

Hi there, I have had psoriasis on my scalp for over 30 years and then on my elbows and legs when peri menopause hit. It nearly cleared in my legs after a few years but my scalp never cleared up. Sometimes it was extremely inflamed. I started Methotrexate for Psoriatic Arthritis and my scalp cleared completely within a couple of weeks. My legs too but they were taking a bit longer. Methotrexate didn't however agree with me and I couldn't tolerate it. I have switched to Salazopyrin and it is returning in small patches on my scalp. It's much better than it was so I'm happy with that. I would suggest you try Methotrexate because it could work out well for you, wishing you all the best!

Posted Thu 22 May 2025 18.47 by P sufferer for over 20 years

OhNo_NotAgain? Thank you for your reply. May I ask do you have any experience with Methotrexate? If so, how did you feel on it, and what happened with your Psoriasis? If not, have you used anything that has cleared you up? Thanks

Posted Thu 22 May 2025 18.53 by P sufferer for over 20 years

Lazydays, thank you for your reply. That sound like the Methotrexate was good for your scalp and legs then, two weeks seems really good news to see a big improvement. May I ask what you mean about not being able to tolerate it - Did you feel sick, or were you being sick? No energy? Or were your blood checks not good? How long were you on it for? I hope the Salazopyrin suits you better Thanks

Posted Mon 26 May 2025 15.24 by Lazydays

Hi there, yes the Methotrexate caused me to have nausea for about 4 days after taking it and because I was taking it every Monday I only had a few days before the nausea would start again. It caused other digestive issues and some fatigue so I got in touch with my rheumatologist and described my symptoms and she said to stop immediately and try Salazopyrin. I will see how it goes! Hope things get better for you soon.

Posted Mon 26 May 2025 15.34 by P sufferer for over 20 years

Acrazydoglady Thank you for your message and those links. I will re-read these as there is a lot of information to take in, but it all sounds really interesting, much appreciated. I'm so pleased you've found something that's worked for you with 97%!

Posted Mon 26 May 2025 15.40 by P sufferer for over 20 years

Lazydays Thanks for your reply. I can imagine 4 days of having nausea, then taking more Methotrexate to have more nausea was tough. I've read some people saying if you can get past the first few weeks that it gets easier. If I go on Methotrexate and feel like that, it will be hard to go to work. I've had my chest XRay now and getting bloods done in 8 days, then just waiting. I'm going to look to change my diet / add healthy things in for the time being and have an open mind about the Methotrexate (if I'm suitable for it).

Posted Mon 26 May 2025 16.45 by Lazydays

Yes that's the way to do it, have a open mind and go for it. My pharmacist said that they have lots of customers who have no issues and have been on it for years. Best wishes.

Posted Sat 31 May 2025 12.51 by ChatsterH

hi there, i have had a similar journey. I 'got' psoriasis (though it was a dorman genetic condition that I had always had apparently) in my early 30s. I'm now 58. I managed it with topicals and it would go into remission periodically. 7 years ago i suffered a personal trauma and my psoriasis was triggered int major activity. I started off at the GP with more topicals including Instillar, cold tar, 5050 petroleum gel, various steroid cream, moisturisers etc. These didnt work. so I was referred to the Churchill Hospital in Oxford - it took only 6 months in fairness - for light therapy. In the meantime i rented a UVB machine for over a £1000 for a few months, which didnt work. The list therapy when I got it did work to begin with. I started off at 14 seconds and built up to 7 minutes. I was travelling 2 hours 3 times a week for this therapy. In the end Id had 33 treatments and had to stop as I felt the light therapy was actually now making things worse. i felt burnt. I went back to the churchill consultant who was going to put me on Methotrexate, but i have a really unhelpful needle phobia. At 58 I'd never had a single blood test until Last october as the consultant couldnt put me on methatrexacte or anything that strong until my bloods had been done. I had to be sedated. I was having dental work done at Guys hospital in London at the time and needed to be sedated for that so with a bit of joined up thinking they kindly agreed to do the blood test at the same time. Bloods came back clear but with methotrexate you need to have weekly blood tests and I think it was decided that this wasnt practical so in december last year they prescribed another med - a tablet - which required less monitoring. Ive just tried to find in my notes what that tablet was but cant but basically that treatment did not agree with me at all. I had taken myself off to iceland for new year 2024/5 to go to the geothermal pools for my P which was great but i was very very self conscious in the changing rooms and in the pools as i looked like a crinkly aged rhynoserous. I felt everyone was starring. My Psoriasis is all over my body, thick, crusty bleeding and flaking...anyway i became really ill in iceland with horrendous fatigue. i was genuinely frightened. I got back to heathrow and didnt feel able to drive home - i was on my own - so checked into the sofitel at T5. They took one look at me and called an ambulance. To cut a long story short i was admitted to the severe psoriasis unit at Guys hospital in London for 3 weeks in January this year. I was treated continuously throughout the days with Betnovate - a steroid and 50:50 paraffin oil. It helped a bit but this treatment was just to calm things down whilst they did lots more blood tests (i've had to get over my needle phobia though I am still given valium), 14 in total whilst they tested me for everything under the sun before they could prescribe the next level treatment which is biomeds. I'd never heard of them but they are a creatively new and very expensive technology that doesnt just suppress the immune system it targets the development of white blood cells which are in fight or flight mode hence over reproducing. Psoriasis. Along the way there was a problem they found with my liver so I had to be referred to the liver department for them to give approval of my bloods with use of this new drug and then they found out i've got a para protein pre cancerous antibody in my blood so had to be referred to the Haematology department for them to approve the new drug.....and FINALLY, 2 weeks ago, all the boxes were ticked, it had been approved at the very highest level that I could have this drug. Its called RISANKIZUMAB. Google it. I had one jab two weeks ago and already my psoriasis is the lamest its been in 7 years. My partner said 'its like a christmas miracle'. Thats also how feel. I have the next jab in 2 weeks time and then after that every 4 weeks. The consultant - one of the 7 i've seen - said this drug will change your life. and ...so far it has. PS. whilst i've been going through all these tests and jumping through hoops I found great relief from ibuprofen gel topped with Vicks Vapour Rub. I think the pain killer and the menthol in the rub certainly worked for me in terms of getting to sleep at night and giving me general relief during the day. Not read this back so apols for any grammatical errors. Cathy x oh another PPS, get your GP to write a referral letter to the severe psoriasis unit at Guys. They WILL help you.

Posted Sat 31 May 2025 12.56 by ChatsterH

Apols for the typos but you get the gist. also the RISANKIZUMAB was given 2 weeks ago, next dose in 2 weeks and then the treatment will be one injection every 12 weeks, not 4 as i said above. Good luck on your journey. I really feel for you having been there myself.

Posted Sat 31 May 2025 22.16 by P sufferer for over 20 years

Thank you ChatsterH for sharing your story, you really have been through it haven't you!! This drug sounds amazing, I've never heard of it. Thank you for letting me know about it. I hope it continues to improve your Psoriasis, and I'll definitely bear this in mind. I have a feeling because of the price they start working through the cheapest ones first, but it's good to know that we don't have to stick on one and there's other things to try. A little bit of hope. P is such a complex condition that has a big impact on our lives. Hoping we get there one day. Lots of luck

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