Apologies for a long post!
To recap diagnosed anti-ccp positive RA in 2016. Put on triple therapy then leflunomide. Bad reactions to all. Left without treatment for 8 months then kicked off clinic as didn’t show inflammation only fluid in fingers on an ultrasound. Complained got seen by consultant rather than registrar and here we are with a diagnosis of psoriatic arthritis.
Thought I would just mention a few things in case they help others.
I was told that I could not have RA in my knees and elbows if it wasn’t in my fingers as it attacks bigger joints later my pain was dismissed as fibromyalgia. The doctor picked up that I had tendonitis but just said it was weird I had it - all this should have been ringing warning bells.
I was not asked whether I had pain in my back and I didn’t mention it because I’d had it for years and didn’t think it was part of this but it was.
The first doctor leapt to what seemed like the obvious answer as i had a slightly raised anti-ccp and a grandmother with RA. They asked me nothing about what my other relatives had and when my symptoms didn’t quite match instead of investigating further they dismissed me as just in chronic pain.
When I complained of pain in certain areas and said back in Jan 2017 do you think I have psoriatic arthritis I was dismissed out of hand and told no because I didn’t have psoriasis - well guess what you don’t have to.
The consultant I got after complaining was brilliant. He said we need to start investigating further. He said given my symptoms then my query of Psoriatic seemed logical. I tested positive for the genetic marker and my MRIs show something going on. It’s not 100% clear so I can’t qualify for biologics but he said we now recognise that seeing hard to determine symptoms is not something we should dismiss.
He said and I like this. You don’t need a consultant to diagnose bog standard obvious inflammatory arthritis you need me for cases like yours when I’m like a police investigator where I piece together all the little bits of evidence to come to a likely conclusion.
It seems psoriatic arthritis is poorly understood and under diagnosed and some people with sero negative RA might well be in this category.
Anyhow now back on a very slow build up of one of the dmards.