Looking to hear peoples experiences with Severe Psoriasis and their timelines

Posted Tue 18 Apr 2017 1.13pm by neas83

Hi All!

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

Hi neas83

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
32. Covered from neck to ankles (Oct 2017). Very sore and itchy. Due to start biologics in Feb 2018.

Feel free to read my timeline in the post I wrote today at:

https://www.psoriasis-association.org.uk/forums/topic.aspx?ID=1388

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. .

Posted Sun 22 Oct 2017 10.53pm by Jussy (edited Sun 22 Oct 2017 10.54pm by Jussy)

I have suffered with this condition since I was 24. I am now 53. My first sign was a small patch on my neck. In about the first year patches appeared on my elbows and knees. Over time spots appeared lower legs lower arms. One year in my 30’s I was sitting around a pond and got bitten bad below my knees and feet. This turned into psoriasis. Those bitten areas joined up and have created large areas below my knees. Both Of my lowers legs is nothing but psoriasis no normal skin. Been to specialist countless creams and lotions, but I coped with it , until I hit menopause. Huge flare up. Swollen ankles , more patches appeared on my knuckles, palms. Nails pitted. Red sore and swollen and scratching it until it bleeds. I also have arthritis but told it’s osteoarthritis. So that’s my timeline. Think it’s time to sort this mess out. Terrible miserable disease. All I use now which stops soreness and itching syclic acid.

Posted Tue 24 Oct 2017 1.30pm by Annatella

I first developed P in 2011 (I’m 43 now), it started with a small red patch, was told by the GP it was a funnel infection! As more patches developed I was told it was eczema and was treated for that but didn’t respond to the treatment, I then had a small biopsy which came back inconclusive! Anyhow as this was all going on the patches began to spread taking over most of my body. I was prescribed cetraben and dovenex which didn’t really do anything. I asked for light therapy but was told no as it was severe enough! I then developed P arthritis in my foot was seen by a dermatologist and reumatologist and then I was prescribed light therapy. The light therapy was effective for a period of time but then it started to come back but it was maintained with dovenex this time. I was in remission for about 2 and half years with only minor patches. About 2 months ago it started to come back fortunately I had a holiday booked to menorca and the sun cleared it up, since return from holiday I have a had a massive flare up, my skin is very red and angry looking. Have been to the Drs today and asked if I could be referred to the dermatologist but the Dr feels it’s not severe enough just yet!!! I’ve been prescribed dovobet (which I’ve never tried before) and I hope it works. I told the Dr that I’m worried I might get P arthritis again and he said “if that happens you will be referred”! Why do I have to wait?? It doesn’t make sense.

This is my timeline of this horrible skin condition.

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