I had my first bout of psoriasis when I was in my late twenties (about 1999 - 2001 ish), but wasn't diagnosed with PsA until September 2007. I had been getting aches and pains for ages but thought they were just everyday things until I noticed the little finger on my right hand was sort of 'wandering' (the best description I can think of) away from it's neighbour...it wasn't twisting at that point, just pointing less than straight ahead.
Also (this would be about 2005) I had a swelling developing on my left wrist. The doctor said it was a ganglion which would go away, but no avail. I was sent to a specialist to see if he could drain it with a big needle...nothing! Next step was an ultrasound scan which was also inconclusive.
During these months my aches were getting worse, especially in my knees and across my collar bone. My fingernails were pitting and I was getting weaker so I went again to the doctor and asked if I maybe had PsA (I had been looking in medical books). He said it was possible and further tests confirmed it.
First I was put on methotrexate which was quickly discontinued as it sent my liver function doolally. They then tried sulfasalazine which made me really sick. The only meds they offered me then was naproxen for pain relief but,as you know, it plays havoc with the stomach and ended up giving me gastric problems (pre-ulcerative lesions the doc who stuck the camera down my throat said).
In 2009 I moved to Canada and heard an ad on the radio for PsA sufferers who wanted to take part in a trial of a new drug. I jumped at the chance, especially as I would get paid! I passed all the requirements and agreed for them to use my DNA for whatever they wanted and started this drug which I can't remember the name of (I'll dig the paperwork out and add it later) but it was one of the TNF family.
The transformation was fantastic and I improved literally overnight. My skin cleared and my joints were pain-free; I felt like I had had a body transplant!
There was a little blip when I developed iritis (inflamation of the iris) which meant I had to avoid bright light (basically stay indoors) for 2 weeks.
I was on the trial for about a year until I had to return to the UK where I told the doctor and they eventually agreed to start me with Enbrel (etanercept). That was April 2013 and while it had some positive effects it didn't hit the pain as hard as the trial meds and the doctor putme on several painkillers until at the minute I'm on 50mg Zomorph twice a day. It takes the edge off the everyday pain, but flares like I had two weeks ago when my knee went bezerk mean I have to break into me liquid morphine stash and double dose everything else (don't tell the doctor!!!).
The thing about this PsA is I can tolerate the pain (mostly)...what I HATE is the constant tiredness which doesn't go away no matter how much I sleep!
Well, that's the bare bones of it. Drop me a line if you want to know any specifics!
Welcome, OCS! Your story sounds so familiar in so many ways: the mystery symptoms, the aches and pains, the self diagnosis, etc. Many of us have been to that rodeo too. I hope that you will find this a good place for support and information. We have a group for our UK members which you may wish to join. Go to GROUPS in the green band above and scroll down until you find Cuppa House. Ask to be let in and it will happen.
Would love to know what drug trial you were on.
Great first post! I hope you will enjoy the conversation and the companionship here.
Gee your story sounds familiar! I can relate--my psoriasis started in my 20s just like you 'cept early 20s. Then the off and on health issues started in my 30s until finally got a PsA dx in my 50s. I would also like to hear what drug trial you were on. I'm sorry to hear Enbrel didn't work so well for you. :-( So far it's working for me (7.5 months) but I have complained on here quite a bit about my bad back and a couple other aches and pains. But, the fatigue and weakness those were also for me very troublesome symptoms of PsA, and I hope you get on a biologic that works better for those symptoms. It'd be so interesting to know what that trial was--sounds like a miracle "pill" --well, except for causing the iritis. They all seem to have a downside! Good luck though!