Posted Tue 18 Apr 2017 1.13pm by neas83
I've had psoriasis for 12 years now since I was 22, initially it started out on my elbows and knees, but as my father has it I knew what it was and have lived with it for 8 of those 12 years with creams etc.
The last 4 years it has kicked things up a notch (not a flare up so to speak, but a gradual decline) where now I am covered 20-30% of my body in Psoriasis Feet, Face, Ears, Scalp, Back Belly, Armpit (really annoying) etc etc.
I tried UVB, didn't work at all, the creams don't work more than a few days and its takes too long to be effective.
So now for 2 months I have bee on 15mg of Methotrexate. So far no difference other than my psoriasis has got worse in the meantime.
So for people with Severe Psoriasis, what were your timescales? I'm ultimately hoping if it doesn't work to go onto Biologics as my dermatologist tells me I qualify for biologics.
Oh and I also have psoriasis Arthirits affecting 3 joints. Great!
So I'm assuming I will be taken up to 25mg of methotrexate to see if it has any impact, and then I guess they may try a different non-biologic systemic and then finally cave in and give me a biologic?
Posted Thu 20 Apr 2017 6.18am by Jim1982
That sounds awful, sorry to hear that. i've had this awful condition for about 5 years now (am 39). Its all over my body but really flares up on my forehead and cheeks. I find i get strange looks when i'm out in public which is great for self esteem! Have tried all kinds of creams topical and steroids. Have had UV treatment, none of which has any lasting impact, generally comes back worse if anything. Am going to keep trying though, am convinced theres something out there to at least keep it under control. Funnily enough one of the best creams was my girlfriends oil of ulay cream! There is definitely something out there for everyone I think, hard to stay positive though but need to try!
Posted Thu 20 Apr 2017 1pm by neas83
I think at the stage I am at, the coverage is significant to warrant around 15-20 minutes of 'creaming' each day and due to my job I can't do it on work days as it stains my shirt. So I was just doing it once a week after a bath but am now on methotrexate so hope I get put on a biologic really.
Posted Fri 21 Apr 2017 7.04am by Jim1982
Totally know what you mean, creams etc are all well and good but not very practical. Let me know how you get on, fingers crossed
Posted Thu 18 May 2017 12.58pm by neas83
So, a quick update. I took the methotrexate for 8 weeks, got terrible hangovers for 2 days after taking it and no improvement shown.
Now I'm on ciclosporin, but man is the nausea bad!, I feel like I'm going to throw up. I will try take the anti-sickness tablets to see if it helps.
Anyone else have really bad nauseue and indigestion?
Posted Sun 18 Jun 2017 11.52am by Roofire
I'd had a little bit here and there from my twenties onwards. But in my early thirties, I had a severe virus and was bed bound for a couple of days, it was from that point onwards that my P really started developing and becoming chronic.
GP prescribed various topical creams, with limited success. After fighting for a referral 7 years ago. I've been through years of UV therapy, methotrexate, then acitretin. I am now about to embark on biologic treatment. Fingers are crossed.
Posted Sun 15 Oct 2017 11.24am by Ivor
Covered from neck to ankles (Oct 2017). Very sore. Previously UVB phototherapy cleared it for 4 years. Just started this again.
Posted Sun 15 Oct 2017 10.41pm by neas83
Hi Ivor. I have moved on myself in terms of treatment. I tried methotrexate, made me hungover and affected my bloods, so derm moved me to cyclosporin after 2 months. I tried cyclosporin... refused it as it made me nausease at work so couldn't function and took time off work.
Finally tried acitretin which did have no side effects but did absolutely nothing for my psoriasis.
After 6 months from first dermatologist appointment I am not on Cosentyx (finished 4th dose) and am 90% clear. Remaining patches are clear colour with a few bits of skin left. Im hoping i will be 100% clear soon. Even with current progress nobody would suspect I have psoriasis, it really does work.
I have a good dermatologist, but we had to go through the old drugs first before NHS would put me on better drugs. Basically if the drugs are contraincated/not tolerated they have to try something else., and in general that means trying 3 things first before biologics are an option. .