Being diagnosed

Nim

I first noticed my hands were swollen in 2015, my GP dismissed it as anything to be concerned about. I went back again about a month later and he referred me to rhumotology. They initially diagnosed me with fibromyalgia. 2016 things got worse with my inflammation they monitored it saying it’s nothing to worry about and gave me naproxen. November 2019 joints in neck were so painful I couldn’t lift my arms and my fingers started to swell and two are now deformed. Went to A and E they did nothing. February 2020 my knees started to get really bad swollen and I started to struggle to walk. I was limping. Had steroids injected which helped. March 2020 was due to see my rhumotology consultant but covid hit and appointment was cancelled was given a phone appointment told me to start a dmard, hydroxychroqine. Spelt wrong sorry 😐 anyway they haven’t worked so stopped was put on sulfazasifine had an adverse effect stopped. Was supposed to start methotrexate but was under investigation for my breast so I’ve been on steroid tablets. So from being told it fibromyalgia it’s now seronegative arthritis, vasculitis and inflammatory arthritis 🤷🏽‍♀️ Crazy! Why did it take so long

Cimca

That is quite dreadful to have been effectively fobbed off for so long. I can only sympathise and hope you get better care going forward. Good luck

stickywicket

I can understand your frustration. To try to answer your question, I'm sure the NHS's difficulties caused by covid played a part. But, also, sero-negative forms of inflammatory arthritis are harder to diagnose than sero-positive ones (The clue is in the name), Rheumatoid arthritis is usually, though not always, sero-pósitive and, in my long experience of RA, OA and these forums, doesn't usually co-exist with vasculitis. So diagnosis, for you, was never going to be easy even without covid.

This is what the NRAS (National Rheumatism and Arthritis Society) says about rheumatoid vasculitis https://nras.org.uk/resource/rheumatoid-vasculitis/

I hope it will be of use and that your breast problems can be sorted so that you can go back to finding the right meds for you.