Anyone NOT have RA in their hands?

Sometimes I feel like I'm the only one. My rheum and rheum nurse study my hands with great effort but barely poke around my other joints and happily declare "your hands look good". Well, erm YES! I only ever had very limited hand involvement. These days, I usually only get pain in one finger where there is a bit of joint damage.

Bizarrely, my hands responded to treatment very well but other joints, not so much. Has anyone else seen an improvement in some joints but not others?

6 Replies

  • I'm the same as you when controlled. The only time I had any swelling on my hands was when I was without meds for 3 months. It really bugs me too when my Rheumy only looks at my hands & says good, good & doesn't check anywhere else because there are other joints included in the DAS 28 & they've not been checked since my first appointment to reinstate my meds. This was all new to me as I'd had the DAS44 performed at my appointments abroad which includes all my problematic areas, specifically my feet & obviously gave a better overall picture of swelling, pain, where is affected & what needs attention or a even a med review. I know blood results are included but that's only part of the calculation. Grrr! So no, you're not alone crashdoll & don't think it's acceptable.

  • I've been told that unless my RA comes back in my hands the way it was when I was diagnosed then I won't be able to get the next level of drugs (i.e biologics). And yet my RA was far more painful in wrists, shoulders, ankles, neck and knees for the first year.

    But I've never had my knees or other joints x-rayed - just my hands. I often felt in my own case that it was the way swelling settled and actually became visible in my hands that counted then and still counts now even though my autoimmunity seems to have gone in completely different direction - it stays there in their heads that my hands matter most?

    But the pain in my knees and all other synovial joints - particularly my wrists was often far more intense and I'm sure if they had ever used ultrasound then plenty of inflammation would have been found in them too. Both my sons had broken wrists from school playground and both went undetected for too long because they showed no visible swelling. Some peple swell obligingly others don't - some have RA in hands some just don't - seems fairly obvious to me!

    So I do get really frustrated when my rheumy ignores my chronic and severe (to me) nerve pain - mostly in feet and legs - and just focuses everything on my hands still. That said they were very bad for about a year but Methotrexate did seem to really help both my hands and wrists - maybe the smaller joints were easier for it to address re inflammation?

  • Twinkle: I agree that perhaps the smaller joints do respond better to medication, although my foot joints (also small ones) have not responded to anything except anti TNFs.

    My understanding was that rheums tend not to focus on pain, although it is an important part of the picture. I suppose, it's more that they don't look at pain in isolation.

    I'm perplexed at your rheum's suggestion that you wouldn't get anti TNFs without hand involvement because a.) I didn't and b.) the NICE guidelines (and all other guidelines) are very clear and they say nothing about RA in hands. Perhaps he was saying that as a frame of reference, some rheums still feel that RA has to be very aggressive for anti TNFs which I disagree with. Recent research is all pointing to better outcomes for people who start on the biologics earlier.

  • I think my rheumy is pretty old school and extremely cautious in the way he approaches rheumatic diseases. He did say that if my feet continued to swell and be painful then he would consider going against DAS28 criteria for me "rules are fine but it is knowing when to bend them that is important" or something like that?

    I just wish he would consider me to be a patient with some broader type of automminuty than just RA going on - as well as highly allergic. I can't see that leaving me off immune suppressant drugs in the hope that nothing bad happens - or else until my hands flare again - is a very scientific approach but there we go. Joints may not be eroding (not that he would know!) but many nerves are certainly dying while all the concerned shrugging and head scratching goes on

    I totally agree that Biologic drugs are not used early enough for many people and society pays for this through sickness and disability benefits - never mind health and care for those of us rendered useless by uncontrolled disease. But it is all just about health board/ authorities saving money - short term thinking. Grrrr!

  • nomoreheels: Interesting, thank you for sharing. I am fortunate that despite my limited hand involvement, my DAS score was still high enough. My rheum once admitted that the hands (and wrists) are the easiest joints to examine compared to other joints such as foot joints, which are well buried, and ball and socket joints (e.g. hips) that are impossible to assess without imaging.

  • Similarly I was surprised when my last score was in the low disease activity bracket (although she prefers to say controlled!) with the only physical check being on my hands. I agree that for a Rheumy the hands are the easiest joints to examine but having had the DAS44 would somewhat challenge examination of the hips. My Consultant knew just how far to push mine before expecting some resistance & he could certainly tell with manipulation when to order imaging if my right one in particular. My ankles are constantly swollen & tender so were always examined as he was concerned about the possibility of nerve damage & in the past year now have no feeling at the end of big toe on my right foot & even though recorded my feet are still not checked. To a degree I can accept she relates my shoulder problems are likely due to cervical spondylosis but, again, were always checked for changes being included in the DAS44 so if there are changes during to RD now could she determine that? Grumbled on enough now, it's just that it really frustrates me when the only part that isn't particularly troublesome except from weakness & an iffy grip are the only joints that are examined & you counted towards my score so, in my view, could make it an inaccurate one.

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