Finally a diagnosis 18 months on of psoriatic arthritis which consultant says can be misdiagnosed as sero negative RA

[helzbelz2]

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.

Xxxxxxx

[helixhelix]

Good for him....and for you in persevering. I wish more rheumies thought of themselves as detectives.

[helzbelz2 in reply to helixhelix]

I’ve been very impressed with him. Never judgemental and believed what I said as well as being honest

[nomoreheels]

Hurrah, a Specialist that looked at you holistically! Hopefully now you'll start your treatment (what is it?), see if you respond & if not then maybe you'll be jumping through the hoops to biologics! A lot of this seems so commonsensical, a lot was discussed here but it wasn't as blatantly obvious to your previous troupe. This one sounds like a keeper!

[helzbelz2 in reply to nomoreheels]

Back on sulfazalazine on a very slow build up. Apparently consultant says he’s had every request for biologics for PSa patients turned down. He’s definitely a good consultant. He always spends 45 minutes with me and didn’t dismiss my symptoms whilst being realistic about what they might be

[nomoreheels in reply to helzbelz2]

It sounds as though it needs to work then if he's been unsuccessful getting approval for PsA. Fingers crossed. I like a Rheumy who doesn't rush you out the door, mine's like that.

[Nettac]

Good for you! I had the same problem getting diagnosed despite glaringly obvious symptoms of PsA. Four of my toenail fell off, I have psoriasis in my ears and scalp, and at the time of seeing Gp I also had agonising bilateral achilles tendinitis. Did I also mention both knees were swollen, and I could hardly stand or get up from a chair?

It's taken an age to be diagnosed. Pants really. I think I was just written off as a nutter... Only partly true

[helzbelz2 in reply to Nettac]

It’s amazing isn’t it. They dismissed my agonising bilateral elbow tendinitis and knee swelling as in my head and not arthritis linked

[LizzieR]

Welcome to the PSA club Helzbelz2! I"m glad you finally have a diagnosis and I hope you get a treatment that works soon.

I'm furious at the idea that he's had every request for biological s refused. I was put almost straight on them- seems post code lottery-ish as well as everything else. X

[Someonesmother]

Same here, 5 1/2 years of registrars mucking me around. I have no psoriasis and no none in my family does either. They are trying that diagnosis on for size so I could get access to cosentyx which has helped. Hope you get some treatment that works now. Good luck