New problem in my hands: Hello Friends, Over the... - PMRGCAuk

PMRGCAuk

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New problem in my hands

AliDeJ profile image
17 Replies

Hello Friends,

Over the last two weeks I have noticed a change in my hands. Mostly the right one, but a little in the left as well. They are stiff and painful when I move them. If I hold anything for a while (e.g. keys, while walking, or a handrail on a bus ) it hurts to let go. I'm having trouble with the computer mouse now.

It's not carpel tunnel. I've had ops for that and it was different. I suspect osteoarthritis is progressing as I already have it in the first knuckles (primary nodal).

I reduced to 12mg of pred 9 days ago. Any other ideas? I see my Rheumy later this month.

Thank you

Ali deJ

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AliDeJ profile image
AliDeJ
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17 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

From what others have said in previous posts, I think the answer may lie in your last paragraph - it could be a signal that you have dropped too low on your Pred. I’m sure PMRpro said in post either earlier today or yesterday that her hands are one of the first things to “play up” when her dose is too low!

You could try going back to previous dose (you don’t say how much you tapered) for a couple of days and see if that makes any difference.

OR

Do ordinary painkillers help? If so, then probably not PMR.

AliDeJ profile image
AliDeJ in reply to DorsetLady

Thank you Dorset Lady. I'm now on a slow taper of 1mg every two months from 15 mg in April.Originally on 40 mg in March 2017 but having flares at 11.5 mg twice and then back to 20 or 15 mg. I was so well over the summer on 14 then 13 mg.I do have pain in buttocks, stiff legs and mid back pain again which I consider PMR symptoms for me. However, the hands are a new development. I so want the taper to work this time as I really don't want methotrexate. I'm thinking that maybe these pains are just Osteoarthritis which steroids have been masking and I'm wrong to interpret them as a flare.

Thank you for your kind response.

Sorry, no clue, but bummer! Sending healing thoughts!

AliDeJ profile image
AliDeJ in reply to

Thank you for your kind thoughts.x

PMRpro profile image
PMRproAmbassador

If it started BEFORE the reduction then it shouldn't be the dose change - but did you taper over a long time? My hands stiffen like that if I flare but that is rarely due to lowering the dose, just a proper relapse of the a/i bit. I think it is one version of PMR.

Though "I do have pain in buttocks, stiff legs and mid back pain again which I consider PMR symptoms for me" - that sounds like too low a dose of pred. You can't force a taper - and you can say NO to mtx. I tried it for 4 weeks and said a firm NO WAY - I felt awful.

AliDeJ profile image
AliDeJ

Thank you PMR pro. What do you mean by the a/i bit? Sorry for being a bit slow...I'm wondering if it could be three weeks of physio-exercises which have done this to my hands: press-ups against a table top to help a rotator- cuff problem. The shoulder is getting better, but maybe the hands don't like the impact?

It's a horribly muddled picture. I wish I could interpret better!

PMRpro profile image
PMRproAmbassador in reply to AliDeJ

PMR isn't the disease - it is the outward manifestation of an underlying disorder and there are a lot really. In our case, where everything else like cancers and inflammatory arthritides have been ruled out, it is an autoimmune (a/i) disorder that makes our immune sytem unable to recognise our bodies as self and so it attacks it as if it were "foreign". While the activity of that bit remains stable you are able to reduce the dose of pred down to a certain level, the lowest dose that is enough to manage te inflammation it creates. But in some people the activity of the a/i bit may increase from time to time - and then you have a flare even without reducing your dose and need to increase the dose to become symptom-free again.

However - yes, if you have been using your hands and wrists differently they are likely to protest. Mine would if I had been told to do that! Even carrying a bag can set my hands off. And there is no evidence it is OA. Just part of the PMR. Ask the physio if there is any way to adapt the press-ups - resting on the entire forearm perhaps?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to AliDeJ

If you’ve been over-exercising and doing repetitive movements then that could be the problem. I found when I first did some Pilates moves my wrists because very sore. Now my wrists have strengthened and I don’t seem to have the same problem.

It sounds like a combination of things. Could also be return of OA pains, you can try anti-inflammatory gel, so long as not too much, or too regularly.

mtrafter profile image
mtrafter

I am having similar symptoms, tight fingers and wrists my fingers crack when I straighten them after holding a book, tablet,gardening fork etc. I have just tapered to 5.5 by Dead Slow 5 wk method. My arms and legs also feel tight and achy and have been having mild headaches over last wk. Not sure if Im just adjusting to new dose, and some arthritis is becoming more obvious on lower dose.

AliDeJ profile image
AliDeJ in reply to mtrafter

Hi mtrafter. Very similar symptoms...the finger joints don't move smoothly, hurts to lift one leg over the other when I cross my legs. I wish I knew what was going on. I hope it becomes clearer for you too.

gifford7 profile image
gifford7

I have a somewhat similar problem with my right hand; swelling, stiffness, fingers tend to curl. This is the hand impaired by my GCA induced stroke last year. As I tapered below 10mg pred to 7, the problem got worse. i tried going back to 10mg and much of the swelling went away. My rheumy said it might be RS3PE; the usual remedy is 15-20mg pred.

However there is a tradeoff in subjecting the whole body to higher doses of pred for one impaired hand. My rheumy said to continue the downward taper and he could treat the hand with steroid injections if i desired[not tried]. I am now at 7.5mg pred for 2 weeks with a fair amount of fatigue; plan to stay there a couple more weeks. Get my CRP ESR tested in a few days. I do wear a hand/finger splint at night.

AliDeJ profile image
AliDeJ

Sorry to hear about your GCA induced stroke and its aftermath. It seems that a higher dose of pred helps with many symptoms, but we don't want steroids unnecessarily, do we? We'd rather know the truth behind our symptoms and live with that. Maybe your blood tests will show what's going on, maybe not. I am sorry to hear about your fatigue, it's awful. I hope you know better days soon.

PMRpro profile image
PMRproAmbassador in reply to AliDeJ

The trouble is that such symptoms are very often the sign you are absolutely at the borderline dose to manage the inflammation. If you ignore that and even there is only a tiny bit of left-over inflammation it will eventually build up and left to its own devices will cause a flare. Which will need more pred to sort it out.

Pred may or may not be good or bad - but unmanaged inflammation is definitely bad. Long term it can cause all sorts of probems - even some forms of cancer become more likely.

gifford7 profile image
gifford7 in reply to AliDeJ

Had my bloods done yesterday and they are in the high normal range; CRP=7.5mg/L & ESR=16mm/hr. I increased my pred from 7.5 mg to 10mg today and messaged my rheumy. Apparently my body needs between 8 & 10 mg to minimize hand swelling & fatigue & hi normal bloods.

mtrafter profile image
mtrafter

I had my bloods done earlier this week all in normal range. I think PMRpro is right in that I may be at the borderline dose to manage the inflammation. I will go back to 6mg tomorrow for a few days and see if that helps because the panadol I took a few hrs ago has made no difference.

piglette profile image
piglette in reply to mtrafter

If the Panadol made no difference it really points to PMR pain as painkillers are pretty useless for PMR.

daworm profile image
daworm

I had trouble like that for months...stiff, pain, plus swollen in the morning...went away for the most part...I’m trying to stay at 9mgs...

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