Hello all
I have a "palindromi"c version of RA. I get bouts of very severe pain in one limb (leg, arm, hand for instance) which only lasts about 48 hours - perfectly OK between bouts which on average occur once a month.
Do the various medications on offer work? Grateful for any advice from other similar sufferers.
ATB, Gussmithy
I have this too and it became very debilitating until I found the right medication. For me, it is the top amount of methotrexate. If I drop just to 22.5mg I flare back up, but 25mg injected keeps it at bay. My consultant says the treatment options for RA and pallendromic rheumatism are the same and it’s a case of trial and error until you find something that works. Sending sympathy as it’s horrendous pain, I hope you get it sorted effectively.
I have sero positive RAwhich started in a palindromic style as you describe - especially in hands/wrists but other joints too - joints would ‘blow up’ very quickly. My rheumatologist says it’s just anther form of RA - and eventually a more usual bilateral form developed though I still het random flares. Has been treated as any other RA.
I never have high inflammatory markers - don’t know if that’s relevant to the palindromic form
This is what I have been diagnosed with. I was being treated with Hydroxychloroquine Was doing really for well for 10yrs Then I started to react to the meds, I had stroke like symptoms. My rheumatologist disagreed & wanted me to continue on them. I wouldn’t. He said he could offer me nothing else as my bloods are normal even though scans of my joints, especially my hands show a different story. So it’s interesting that you’ve been treated differently.
I haven’t been on meds or seen my rheumatologist for 20 months now. My hands & feet have changed shape & are so painful.
there has been a bit of confusion because i have a "primary generalised O/A' diagnosis as well, and bloods are never impressive - but I have been treated throughout as RA - it's pretty obvious visually when flaring , and on on scans
Yes I have this also , just had a painfully flare in my wrist , the only good thing about having PA is it usually only lasts 24 hrs then it goes.but treatment the same as RA .I take 15mg Methotrexate, Hydroxychloriquine and a Jak inhibitor called Filigotnib.it is mostly under control
I’ve had this for 30 years.it’s awful! My rhuemy recently upped my Arafat. So far it seems to be helping.
Yes, I have (or had this)
I'm well controlled on RTX and Methotrexate now.
At first I had milder symptoms of RA, which I ignored, before developing PA, the same sudden-onset severe-pain symptoms as you mention, and with increasing frequency.
I believe my rheumatologist eventually muttered something about PA morphing into RA. Treatment with the usual DMARDS was not effective until I tried RTX.
Although the general symptoms of RA are controlled, I still suffer mild versions of the sudden-onset PA pain. Nothing nearly as bad as it used to be thank goodness. I found the very severe pain hard to deal with - pain killers really failed to touch it until it subsided on its own.
One of the issue I had was getting seen by a rheumatologist whilst I was at my worst. Taking photos of the affected joints is useful - mine were very swollen with a tell-tale area of redness. I noted down dates and severity of pain - doctors like marks out of 100 - and concrete examples of how badly it's affecting you.
Hope you get some treatment that reduces its severity.
I have sero negative palindromic inflammatory arthritis which my consultant said is another form of RA. I’m taking Hydroxychloroquine and Sulphasalazine which doesn’t stop the pain completely but seems to keep it at a manageable level most of the time. I may be switching to methotrexate and I’m nervous about doing so but we have to find the right combination of meds etc to make this awful illness bearable. I’d check with your consultant to see if there is something else right thing for you. Best wishes x
My Notes Reveal Palindromic Rheumatism
Wee question for those with palindromic rheumatism
Palindromic Rheumatism
Anybody with Palindromic Rheumatism out there?
