Newly diagnosed with Palindromic rheumatism

Nickicoley
Nickicoley Member Posts: 4
in Living with arthritis

hi everyone, I find myself looking on here for answers since being diagnosed so thought I'd introduce myself and tell my story. I'm 52 and somehow have the diagnoses of Palindromic rheumatism purely by chance. Recently I visited the GP with palpitations. Discovering I had very high BP (180/115) I was immediately put on medication and told I couldn't take any kind of ibuprofen. I explained this was an issue and I took it regularly to get through workdays as my joints were painful, which I had put down to a physical job, and also described an issue I had where from nowhere a joint would swell and b real painful, but within 24 hours that joint would be fine yet a different joint would be swollen and painful. This could occur several times in a week going from joint to joint, then nothing for a couple of months. This had been occuring for 2 or 3 years, but as it's impossible to get a GP appointment I didn't bother, how could I say I had swollen joints but be fine when I eventually got there?? So from this comment the GP ordered a blood test,which comes to a question I have not found an answer to from anywhere . My results showed anti CCP antibody level of 331, and also rheumatoid factor 237. I know these levels are above normal, and sound scarily high, but I have no idea if in the realms of RA and Palindromic rheumatism they are actually that high? From my results I was diagnosed and started hydroxychloroquine,which was a horrendous experience due to allergic reaction, and have recently started oral mtx which is causing nausea but I'm giving it a fair chance to see if it settles. I was told that the PR could evolve to RA and I suspect that could be the case as the random swapping joint pain stopped soon after diagnosis before any treatment began but I now have persistent pain in hands, wrists, feet and toes, almost like a crappy pain. Is this what RA pain can feel like ?? Everything came at me as a bit of a bolt from the blue and still think I'm think I'm in a bit of denial. I've only had one consultant appointment since this began and no idea when I have another. I've seen a couple of the nurses in clinic but now just having the blood tests every 2 weeks so I'm really grateful for this site as people on here seem to understand. I am finding that anyone I need to speak to especially at work to explain why I might not be on top form seem to put in into the category of " your getting older, everyone gets aches and pains " . Im now just taking the approach of taking everyday as it comes and keep marching on and see what happens 🤔

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