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My advice; don't wait and don't be fobbed off

I have had Psoriasis most of my life (originally diagnosed as childhood eczema then corrected to scalp & skin Psoriasis at age 17), then about 10 years ago I had a problem with what the doctor said was 'recurring tendonitis' in my right foot.  She told me if I lost weight it would help.  I lost a lot of weight and it made no difference - if anything it was getting worse and by then I had torn my left achilles tendon and my right one seemed to have come out in sympathy!  I'd had problems with my left knee for a few years but thought it was a delayed reaction to a car accident.

No-one joined up the dots and no-one had even mentioned psoriatic arthritis to me.  When I returned to the doctors to ask her about the condition of my nails and small pits in them, she told me very matter of factly that it was a complication of psoriasis.  I began to read up on it and everytime I got a new ache or pain I would google "... and psoriasis"  and almost every time I found forums full of people with the same set of symptoms as me.

Eventually I developed plantar fasciitis and my doctor did blood tests and conceded I had psoriatic arthritis.  I was put on naproxen and co-dydramol.  However, it has taken me about 5 years to get a referral to a rheumatologist because my surgery is a teaching practice and they like to refer within the surgery to doctors with 'special interests' in that area of medicine!

Us Brits are not known for being pushy so I guess I let myself get pushed around, and it was only when I went in at the beginning of this year with a 2 page list of my symptoms and how they impact my life, that I finally got my referral.

Finally now I am getting treatment and hope to be put on methotrexate soon.  Worryingly, my delayed diagnosis does not seem to be that rare, and my disease is now advanced with joint damage.

My advice?  Don't wait and don't be fobbed off.  Fight for a referral as early as you can because this is a rapidly progressing disease which will steal your mobility and your quality of life within a few years.

Secondly, get informed by joining patient forums - we know more about this disease than the medics and research in this area has been lacking so its up to us to tell the doctors and consultants what other patients could expect.

Submitted by a 40 female living in England

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