Has any one with pmr had awful pains and stiffnes... - PMRGCAuk

PMRGCAuk

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Has any one with pmr had awful pains and stiffness in the pip joints in their hands

valrene
valrene

Had pmr for 4years managed to get of steroids last October with the help of Leflunomide which I’m still taking, in Dec started waking up in the mornings with stiff painful pip joint in fingers, ask Rheumy if it’s part of pmr he said no it’s osteoarthritis, sent me to physiotherapist just came home from there she can’t really tell until I have some more hand x-rays next month, carry on with paracetamol and capsaicin cream which have no effect at all, physio wanted to know what I have done different for the pain to suddenly start then thought about it I’ve stopped taking steroids a few weeks before the stiffness and pain started.So really wanted to ask all of you knowledgeable people out there has anyone else’s hands had pain and stiffness with pmr.

36 Replies
oldestnewest

Well I have painful fingers and a weak grip. I always put it down to Osteoarthritis. I did a lot of keyboard work in the past. I think that Pred probably helps arthritic pain somewhat, although it isn’t prescribed for it. My arthritic knees have revealed themselves painfully now that I am on low dose Pred.

Hi Sheffield Jane my Rheumy thinks it’s osteoarthritis but didn’t think steroids helped osteoarthritis, will have to wait for hand x-rays to see what’s going on, thank you for your reply really don’t want to go back on steroids if it is caused by pmr.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to valrene

It doesn’t per se. But dependingon what the dose is it can mask it. I started very high for GCA and all OA pain disappeared completely - however as I got down to the lower teens of Pred it came back with avengence!

valrene
valrene in reply to DorsetLady

Thank you Dorset Lady the physio said the steroids could of been masking the pain, oh well if it’s not one thing it’s another joys of old age I suppose, don’t know what’s worse the pain of pmr or osteoarthritis.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to valrene

That’s a very good point!

Wish we didn’t have either. Have to admit though once diagnosed my GCA (no PMR) pain was well controlled - maybe just lucky.

And at the moment my knee and hip OA pain has been resolved - but have problem shoulders - so not entirely pain free - but enough to enjoy life again!

Take care.

valrene
valrene in reply to DorsetLady

😂😂 yes we have to laugh and get on with it no good being miserable all the time, take care.

Constance13
Constance13 in reply to valrene

Both are a bl..dy nuisance! Only thing is PMR usually goes into remission - OA doesn't. Thought I'd just cheer you up.😏😂

Yes, I did, early on. It was so bad at the beginning that I had to phone my husband from the front porch because I couldn't turn the key in the lock. I also had to stop driving because while I could handle the wheel, I couldn't depress the door button to get the door open!

Once the pred took hold it pretty much went away unless I tried to lift something too heavy, or turned my hand the wrong way.

Sounds like you might be seeing the beginning of a flare..

valrene
valrene in reply to GOOD_GRIEF

Good Grief thank you for your reply, that’s what I’m really afraid of don’t want to go back on steroids but would love to see if they help.

GOOD_GRIEF
GOOD_GRIEF in reply to valrene

No one loves taking medication, but useless suffering is useless.

PMRpro
PMRproAmbassador in reply to valrene

You can take them for a week or two and stop if they don't make any difference.

valrene
valrene in reply to PMRpro

Still have some steroids did think about seeing if it would take the pain away, I could try 5mg for 2weeks would it be ok to stop them straight away or would I have to reduce again, thank you for the help PMRpro.

PMRpro
PMRproAmbassador in reply to valrene

You do run the risk though that 5mg may not be enough to deal with the built up inflammation if it is the PMR returning. Even when I started on pred it took a few months for my hand pain to go as tenosynovitis hangs about - but then, that was after 5 years of untreated PMR. But yes, you don't have to retaper after a week or so on 5mg.

PMRpro
PMRproAmbassador

Quite a few people find low doses of pred also manage mild OA quite well. But I had a lot of hand pain with PMR, tenosynovitis, and it went entirely with pred. It could well be that the low dose you were taking at the end was enough to manage it - you wouldn't be the first to discover that 1mg of pred kept PMR at bay!!!

valrene
valrene in reply to PMRpro

Thank you PMRpro, my mum had pmr she found it really hard opening jars or anything using her hands, my hands started getting weak about 2years ago so presumed it was pmr, Rheumy said it doesn’t affect the hands. Physio wondered if the steroids masked the pain, will have to wait for some more x-rays on my hands to be done to see what’s going on.

PMRpro
PMRproAmbassador in reply to valrene

Your rheumy is wrong. Obviously needs to do some reading!! And listen to his betters ...

Breconblue
Breconblue in reply to PMRpro

Yes, the last Rheum I saw ( privately ) said OMR doesn't affect anything below elbow !

PMRpro
PMRproAmbassador in reply to Breconblue

All I can say is I hope he develops it in all its glory!!!!!

What? I've never heard that one!! What a tw.t!

Hi there, yes, thepip joints of my 5 th fingers only, no other fingers....worse am, better when day goes on, it is PMR. I know. Me now on 1 mg. And ok ish....Succes

I developed PMR just under a year ago, while I was being treated for another condition and ny GP thought it was part of that. I was in a lot of pain in my hips and shoulders but when I woke up one morning with my hands like claws the GP took notice and did blood tests. The pain and severe stiffness eased very quickly with pred but even now I can't quite close my hands into tight fists. Wringing out cloths, for example is quite uncomfortable. (I now spin them in the washing machine!)

I think I was lucky! My hands speeded up my diagnosis.

valrene
valrene in reply to Omanain

Hi Omanain that is exactly what happened to me waking up one morning with hands like claws, the pain trying to wring out cloths or lifting kettles or saucepans, the pain is in every pip joint on both hands, which made me think it was pmr, when pmr first started in my legs Rheumy said it was osteoarthritis sent me to a physio where they looked at my x-rays said there wasn’t any sign of osteoarthritis in my knees went back to Rheumy he still wouldn’t have it, luckily my Rheumy nurse got another higher up Rheumy to look at me after 5 months of being in awful pain he diagnosed me straight away within 2 days of pred felt like dancing, so until I’ve had more x-rays in 3weeks time I’m not convinced it’s osteoarthritis that’s why I asked this group who have been through this there selves if any one had the same with pmr.

O have GCA not PMR but I developed pain and stiffness in my hands. I was told it was arthritis. But when I stopped taking Alendronic Acid it 90% improved

valrene
valrene in reply to Hellyowl

Hi Hellyowl my Gp took me off of those a long time ago so I know it’s not that, thank you for replying.

Omanain
Omanain in reply to valrene

No-one has ever suggested that mine is osteoarthritis, my GP, the rheumatologist and the nurse specialist all see to accept it is part of PMR.

valrene
valrene in reply to Omanain

That’s good to know Omanain, my Rheumy only felt the tops of my finger pip joints couldn’t feel any lumps so just said it’s the start of osteoarthritis, I now have swelling at the bottom of my fingers palm side it’s burning and very painful, have been in constant pain since Dec Rheumy just told me to take 8 paracetamol a day and rub in capsaicin cream and ibuprofen gel which I have been doing for 6weeks now with no relief at all.

PMRpro
PMRproAmbassador in reply to valrene

A few mg of pred has far fewer longterm risks that the maximum dose of paracetamol! That lot must be costing you a fortune for it to achieve nothing.

I have rheumatoid athritis and Osteo but the rheumy said I have RA my hands ect .It was a scan not an x ray that confirmed it . Something to do with sinovial fluid Sounds similar .Although PMR brought all kinds of pain and stiffness but it's easy to assume everything is PMR .I did ,and it wasnt that ,the Rheumatologist said the steroids mask other things . Be mindful of that . .mydr.com.au/arthritis/arthr...

When I started to feel ill ( but before my shoulders and neck joined the pain party) I had typical carpel tunnel symptoms -unpleasant tingling , little electric shocks , couldn't grip a knife , couldn't wring out clothes, couldn't lift the kettle . My GP was even talking about an operation . Then 7 months later he did the right blood tests and bingo , PMR ! Since I've been on prednisone the carpel tunnel symptoms have disappeared .

I've had osteoarthritis for years and I thought "no big deal". Until a couple of years ago when my hands (which hurt like yours) changed and I started feeling my basal joints in thumbs started rubbing together. It was painful and the sensation of joints rubbing together was nauseating. I've had one surgery on my right hand where they ran a tendon in between my basal joint (only worked for a couple of months) . Then 11 months ago I had the basal joint and 3 other carpal bones in my left hand completely removed. They did a tendon grafting and it took me months to learn to use my hand again. Before I had the 2 surgeries, my left shoulder hurt and both hips. Now I have pain in both shoulders and both hips.

After all I've just said, it's hard to distinguish OA from PMR without xrays. When I got pmr I had total head to toe xrays and found out that for now, my joints are okay in shoulders and hips. That pain is from pmr. I hope this helps. I'm not going to worry about OA until I start feeling the grinding pain. I do know that either pmr, people experience joint pain as well as the muscular.

Good luck. I hope things improve for you.

I had terrible joint pain ( the joint in the base of the fingers) last year when I got down to 3mg dose. I waited too long to visit rheumi ( was on trip to Europe) and by the time I got back I had to up the dose to 9mg before the pain was gone. Besides increase in dose, I did some stretching/flexing of the fingers that helped immediately.

Simplified version of the flexing is to grab the finger with the other hand, pull the joints apart and then twist it in both direction as far as it is comfortable.

Credit goes to PMRpro for the suggestion ( there was a post on internet with description, but I don't have link any more)

I had osteo in hips and hands before PMR. The prednisone helped both conditions. Am down to 6.75mg daily. I hope to go lower soon and expect the osteo pain will return. Then I will start back on Tylenol to try to lessen pain. To lessen pain in hips I am exercising for flexibility as well as trying to regain strength in muscles. They have been weakened by the PMR inflammation and a more lethargic lifestyle.

EdithWales
EdithWales in reply to Noosat

I have developed Osteoarthritis and spinal stenosis, the pain in my legs and hips is dreadful. I am tapering to 7mgms for GCA

Like you I am on the exercises and I hate it. I think it’s such a difficult tension between taking it easy and looking after ourselves to doing so little the muscles get weaker.

Take care

🥂🥂

Yes I get very stiff hands and can't make fists in the mornings , still looking at other diagnosis with the doc tho

best wishes

Carolyn

Hi yes I have very stiff fingers can't curl them much in the mornings can be very frustrating but they loosen up in an hour or two . All the best hope they improve

Hi my hands cramp up like claws and if I do anything my wrists swell up like balloons. My rheumatologist said it’s not PMR as it doesn’t affect your wrists and hands.

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