Another day - another diagnosis

[Helzbells]

September 2016 diagnosed with anti-ccp positive RA. Put on methotrexate, hydroxycholquinine, sulfazalazine, leflunomide and allergic to all of them. Didn’t qualify for biologics and suddenly hey presto nothing wrong could be seen. The pain remained and was excruciating but the new diagnosis - nothing wrong despite what had been seen earlier. Good bye you’re off the clinic.

Complained and got moved to the lead consultant’s list. Great guy who’s honest and listens. Upshot MRIs and more blood tests - I am positive it seems for the genetic marker for Ankylosing Spondylitis and although they can see no obvious inflammation in my lower spine something is going on in my thoracic they just can’t see what.

Inflammation keeps coming up especially in my hands. Got occy health consultant to take photos and email my consultant as invariably it goes down when I have a clinic appointment. Today however my consultant said the photos showed it and the fact another consultant had seen it proves it.

Can he give me a definitive diagnosis - not yet as he thinks it will play itself out one way or the other. The raised anti-ccp was probably a red herring, but the genetic marker much more significant, the changes in my spine though not definitive yet plus the location of the pain such as tendinitis in the elbows and the rapid flares in my fingers all point to a more likely diagnosis of one of the psoriatic forms of arthritis. Only time will tell but there is enough of a pattern even without ultrasound showing it to suggest some sero-negative inflammatory process going on. So steroid injection today and if I respond to that it’s back on a very slow build up of sulfazalazine to go with the gabapentin.

The funny thing - last year when I did the hospital arthritis course and they went through the symptoms of the different inflammatory arthritis types I said you know I think my symptoms fit better with psoriatic arthritis rather than RA but I was told it couldn’t be as I didn’t have psoriasis but turns out you don’t have to!

[Fi23]

Good luck with the new diagnosis, steroid injection and new treatment programme. I too have "psoriatic" arthritis but between everyone I've seen at the rheumatology department some consultants are happy to call it Psoriatic arthritis whilst others refer to it more generically as "inflammatory arthritis" ! Either way... it sucks... as three years ago my GP just presumed it was reactive arthritis that would last 3-6months at the most!! Things are more stable for me since starting on biologica and just for the record I also don't have any psoriasis! My mum and gran did though...

[Helzbells in reply to Fi23]

Hi thanks for that. I don’t qualify in my area for biologics though the consultant would like to prescribe them. It seems my dad had psoriasis on his scalp which was misdiagnosed for many years as dandruff

[LizzieR]

Oh Helzbells you've had a tough time. I hope you have a better year x

[Ruth12345]

Goodness me what a roller coaster and such an emorional input from youas well as physical. You are a rolemodel.

[Jesnaskah]

Oh my gosh!! How frustrating!! I feel for you, I'd be so stressed out. I'm trying to figure things out on my own when it comes to myself. Not fun nor is it easy, but at least I know exactly what I'm feeling. It's so much harder when docs aren't on board with us. They just can't relate, unless they experience it.

I'm wishing you the best!!!

Jess