Stiff fingers

[valrene]

Hi all

Wrote awhile ago about stiff finger pip joints, Rheumy said it’s oa had x-rays no sign of oa or anything else, not on steroids now only 20gm of Leflunomide, Rheumy said in letter just carry on with paracetamol which don’t help at all and I will see Rheumy nurse in 4months time, so another 4months of constant pain and stiffness because he doesn’t know what is causing the constant pain in all pip joints on both hands, has any one else suffered this stiffness in hands with no sign of oa, could the pmr be causing this, Rheumy said pmr doesn’t affect your hands xxx

[SnazzyD]

Gout??

I think there will a shout of consternation from those who have said on this site that their hands were affected.

[PMRpro Ambassador]

Your rheumy is wrong - PMR affects the hands, casuing synovitis and tendonitis, expecially if you develop RS3PE syndrome as well. And Leeds have done a study on it ...

Leflunomide doesn't "cure" PMR ills, maybe just allows a lower dose of pred.

[valrene in reply to PMRpro]

Thank you PMRpro I know I posted a few weeks ago before x-rays Rheumy was quite adamant that it was oa, 4 years ago when pmr started he wouldn’t diagnose me left me in pain for 5 months until my Rheumy nurse asked another rheumatologist to look at me he diagnosed me straight away, 2 days on 20mg pred I felt like dancing, taken me a few years doing the slow method to stop taking pred, my Gp said it’s no problem to stay on 5 mg as it’s a maintenance dose. Think I will see my GP ask his opinion as I do feel a few mg of pred will help the pain and stiffness, after 4months on paracetamol which don’t help at all then him telling me to carry on taking paracetamol for another 4months and not helping is a waste of time, will ask Gp also if I can transfer to another Rheumy as I’m not sure how to ask for a second opinion. As you said Leflunomide doesn’t keep pain away just the inflammation in blood vessels and it’s just another nasty drug. Thank you for your help xxx

[PMRpro Ambassador in reply to valrene]

That GP sounds worth it - the rheumy not so much. I wouldn't have stuck with him!

[valrene in reply to PMRpro]

That’s what I’m thinking PMRpro, making an appointment to see him as soon as I can as I’m starting to get aches and pains over the last few days in my joints again.

[jinasc]

Hang on................has your PMR gone into remission?

Leflunomide is a steroid sparing agent, not a replacement..........at all.

If it was then we would not be given pred at all for PMR or GCA.

Paracetomal won't touch the aches and pains caused by PMR and it does not touch the pain for OA either.

I would be asking to see another Rheumy..................

[valrene in reply to jinasc]

Thank you jinasc for your reply, did wonder if I’m starting a flare, did tell Rheumy that paracetomal doesn’t touch the pain and stiffness in my hands but he just doesn’t listen, have stomach ulcers so am stuck which pain killers I can take, before pmr was diagnosed 4years ago I was given so many different pain killers but nothing worked only pred, will see Gp and get another Rheumy, thank you for your help xxx

[Hidden]

I have had stiff fingers, a trigger finger and is in my thumbs in particular, that predates PMR by years. I then got swollen, not just stiff fingers which were just before DX of PMR. So like others I definitely had some hand problems with onset of PMR. Now I have golfers elbow and housemaids knee that comes and goes. These could be pmr/pred. It's really hard to determine what causes what.

[valrene in reply to Hidden]

Hi Poopadoop my pmr started in my knees down Rheumy said it was oa until I had x- rays physio said there was no sign of oa it was inflammation causing all my pains Rheumy still wouldn’t say it was pmr, so pmr can be in your knees, legs ankles and feet, just didn’t know about hands.

[Hidden in reply to valrene]

I think pmrpro put a link to research that confirmed hands the other day. It may be one of the threads about OA. Basically it's inflammatory so probably riddled with it 😂

[valrene]

Thank you DadCue just had my carpal tunnel ops, now have 2trigger fingers and stiff pip joints, Rheumy sent me to physio said it was oa, physio was surprised Rheumy didn’t offer me steroid injections for the trigger finger to take the pain away, referred me to my Gp now for injections xxx

[jinasc]

I know this sounds whacky.................but buy a tube of Flexiseq (it is bio-mechanical) and use it on your hands (it is supposed to be for OA on knees) however some of us when using it your knees as you had to sit for 10 minutes to let it sink in - the joints on our fingers became more flexible. One Lady, who had not been able to knit for 10 years, was able to knit baby clothes for her first grandchild. It is expensive............but it does work.

ARC developed it and you can read all about it on their website.

[valrene in reply to jinasc]

Thank you will read up on that now.

[polymy]

Your Rheumy is quite wrong. Pmr has always affected my hands right from the beginning. Fingers very stiff and pain in the pip joints. Before going back on a Pred after being in club zero for 3 months I couldn’t even bend my fingers in the morning.

[valrene in reply to polymy]

Thank you polymy at last somebody with exactly the same symptoms as me, did the pain and stiffness go with pred and how many mg did you take, I’m so grateful to every member who replied but to have someone have exactly the same in their pip joints actually proves my theory all along that it was pmr especially after having x-rays and no sign of OA in them.

[polymy in reply to valrene]

The stiffness went after a few days on 20mg of pred. Right from the start my hands have been involved. Have had scans and they don’t show RA which is what the rheumatologist thought. I still get a lot of cramp in my fingers.

[valrene in reply to polymy]

Hi polymy still have some packets of steroids at home have been on the verge of taking 5mg to see if that would be enough to take pain away, so pleased the pain went with pred for you, I’m just so grateful to you for replying with exactly the same symptoms, sorry you have this awful disease, just good to know pmr can affect our hands, just a bit frightened to start pred again. Rheumy sent me to physio who told me I’m not exercising making a fist enough that’s why my fingers are so stiff, don’t think they realise how painful it is.

[patriciawhite]

PMR had this effect on me also now Rheumatoid athritis ,Have you had your hands scanned ,That's what defined the diagnosis for me of RA .It took forever to get any one to scan ,Rheumatology dept in the end did it .

[valrene in reply to patriciawhite]

Hi patriciawhite when I saw Rheumy 3weeks ago he had no idea what was causing my symptoms sent me for x-rays if no joy from them would send me for an mri scan, next week after x-ray he sent me a letter saying no sign of OA would see me in 4months time, carry on with paracetamol, he was so insistent that it was OA, hopefully asking for a second opinion, thank you.

[patriciawhite in reply to valrene]

The Rheumatologist said after I told her my GP had laughed and said ''It looks like you punched a wall '' She wished she has seen them all red swollen and knuckles looking like I had indeed punched a wall .The advice she gave was (1) Steroids mask other things (2) If it happens again take a photo so she can see what I was talking about (3) Xrays do not show the fluid damage and she ordered a hand scan . That determined for me at least That it was Rheumatiod atheritis and I can't remember the exact but reference to synovial fluid ect .Hope this helps .Quote me if you want .Thats fine .I would have never taken a photo because I would have felt ridiculous but she did say .It helps her see what I am talking about .Some times these things have calmed down by the time she sees me .

[valrene in reply to patriciawhite]

That’s what I was hoping would have is a scan to definitely determine what was wrong with my joints, so pleased you managed to get a proper diagnosis, had a reply from polymy with exactly the same stiffness and pain in the pip joints, I’m not on steroids any more but do now believe it is PMR.

[yogabonnie]

Since PMR and prednisone I have had trigger fingers and one very painful one that swells up sometimes. I find..oddly enough..and easily enough.. that if I eliminate all sugar it stops hurting in a day or two. who knows! easy solution!

[valrene in reply to yogabonnie]

Did read that pmr can give you trigger finger and carpal tunnel which I have had done, I don’t eat anything with sugar as steroids gave me type 2 diabetes, do agree with you though think to much sugar aggravates pmr.

[daworm]

I absolutely have had stiff, swollen fingers...they don't swell any more but they are stiff every morning for about an hour then everything loosens up..."Rheumy said"..hahaha..Rheumy don't know crap....you should be on prednisone if you have PMR???

[valrene in reply to daworm]

Hi daworm Rheumy won’t put me back on steroids, think I will see my Gp as last year he said to stay on 5mg pred as it’s a maintain experience dose, take 20mg Leflunomide PMRpro said Leflunomide won’t help pain of pmr only keep the inflammation down, really think this group has more knowledge of pmr than my Rheumy.

[PMRpro Ambassador in reply to valrene]

Given the choice between 5mg pred and leflunomide that isn't managing the pain I know what I'd be on!! Leflunomide can be nasty too

[valrene in reply to PMRpro]

I was just thinking the same PMRpro Leflunomide can do some serious side effects to the body, just can’t believe after 4months of continuous stiffness and pain Rheumy is making me wait another 4months to see not him but my Rheumy nurse, he said I’m an awkward patient as I don’t fit into all the pigeon holes of symptoms, over the 4years I’ve had pmr which he got the hump because the senior Rheumy diagnosed me, as my Rheumy nurse knew I was struggling after 5months in pain managed to get me an appointment with the head Rheumy he said pmr straight away, all mine kept saying it was OA, but was proved wrong with knee x-rays and now hand x-rays, how do some people get into positions of being a Rheumy, without much knowledge of the disease, you are all so helpful on this site after suffering so much yourselves would make a better Rheumy than mine 🤣🤣🤣

[PMRpro Ambassador in reply to valrene]

Just lazy doctors usually who do appear in all fields - and I suspect that there is an added component in that they are taught at med school that they are there to cure. Then they choose rheumatology because at the back of their minds is a thought it must be quite easy as there is little emergency work and so fewer disturbed nights and weekends. But then they discover that they CAN'T cure - and no-one explains to them that their role here is to help patients achieve the best QOL they can while living with a chronic and potentially crippling disease.

[valrene in reply to PMRpro]

You are spot on there, all along have felt he hasn’t got the knowledge of pmr, now with my hands he is just ignoring the problem hoping it will go away, all he has said 4years ago and now with my hands I’m certain it’s OA.

[daworm in reply to valrene]

I’ll take the pred over this drug...one of the side effects is joint disorder..do you have RA? It’s an RA drug...

en.m.wikipedia.org/wiki/Lef...

[valrene in reply to daworm]

No I tried methotrexate but upset my liver so Rheumy put me on Leflunomide for pmr, think I’m his guinea pig 🤣🤣

[daworm]

How can so many "Rheumys" have no knowledge of what goes on with PMR???

[PMRpro Ambassador in reply to daworm]

They think they are better informed than patients and haven't had it themselves...

[valrene in reply to PMRpro]

Always said wish they could live with the pain for awhile they would soon be looking for pain relief.

[PMRpro Ambassador in reply to valrene]

I know a couple of doctors with chronic conditions - and they say it has changed how they relate to patients a lot.

[valrene in reply to PMRpro]

That’s great to hear.

[Merlina]

Yes- I have stiffness in my hands and fingers that I attribute to pmr. I think I'm learning the difference between pmr and oa pain. My rheumy says 'huh'. My dx is atypical pmr, so.....2 1/2 yrs in and still many questions.

Good luck.