hi all
I am at week three of my PMR journey, and have been taking steroids at 15 mg then increased to 20, I am now taking 25 mg to see if that is any good. I seem to be improving in some ways. In other ways I feel I am worse. My hands and fingers are unbearably painful and I can barely hold a cup do any of you have the symptoms.
how do you manage the pain in your hands and fingers?
With love to you all
It does sound as if you might have more than just PMR. Have you talked to your doctor?
Hi JessJess21, I also have same problem with hands & fingers, pain also radiates up inside of arms. I saw a new Rheumatologist recently and he thinks it is more likely Rheumatoid Arthritis I have and not PMR. This all kicked off for me after having covid for 1st time in January. He wants me to reduce steroids and start Methotrexate. xx
What's the matter with starting the MTX and THEN reducing steroids? It is a common approach in PMR - not saying it works, but it does cover the inflammatory arthritis aspect of misdiagnosis!
Agree totally, but this was the regime Rheumatologist has suggested.
Just wondered WHY they are doing it that way round. Unless they are determined to see the disorder without pred in all its glory! Not considering that the poor patient has to suffer on the way!
The point is that non-steroidal immunosuppressants (eg. methotrexate, hydroxychloroquine, azathioprine, etc.) usually have to be taken for many weeks before they take effect. Coming off prednisolone too quickly, too soon, could cause a major relapse.
This sounds just like my RA symptoms. Hydroxychloroquine was my Rheumatologist's go to for me. It took 3 months to completely settle but has worked since 2020.
The question I have about this is why can't they definitely diagnose it to be RA? I have similar arm, finger symptoms and my Rheumy is not clear on what it could be. My bloodwork does not show RA and when she looks at my hands she does not see RA. But she is suggesting hydroxychloroquine for me down the road if my symptoms continue and I continue not to be able to get off Prednisone.
so did you have PMR first and then it morphed into RA?
Inflammatory arthritis, especially LORA, can start identically to PMR to all intents and purposes - seronegative for RA and no erosion in joints to be seen early on and no distinguishing features have been identified at this stage. Clues may be that the response to pred isn't as clear as they like to see in PMR and then the patient struggles to taper the dose.
There are doctors who insinuate that PMR morphs into RA - I don't think it does, it is a misdiagnosis which isn't really their fault but they don't want to suggest that they might have got it wrong!
I also have very painful fingers. X-rays show nothing untoward. It’s like a dull ache and just the smallest movement sends an electric shock type pain shooting through my fingers and sometimes accompanied by a clicking sensation. Doctors have no answers. I am seeing Professor Hughes on Monday and will be mentioning it to him and see what he thinks.
I had awful hand pain with PMR which took a few months to disappear altogether on 15mg pred but did improve fairly quickly. I struggled to hold anything, dropped loads of things and the final straw was struggling to hold a wine glass!!
However - given the difficulty you are having getting things under control. I think a rheumy needs to look further for an alternative, Do I gather you are only under your GP? I think you need an urgent referral for query inflammatory arthritis. Sorry. But there is a range of medications for that these days, not just pred.
I don’t know this will help, but my hand problems are mainly OA (diagnosed when I was on about 6mg, when they had worsened considerably), & hypermobility (they subluxate & dislocate at will…wrist & fingers/thumbs). In the mornings I cannot bend them they are swollen, it takes time to go away. My Dr thinks I have inflammatory arthritis & referred me to a different hospital…but it’s two years ago, & I think they’ve buried the referral! They used to email every two months & ask if I still wanted the appointment, but that’s stopped now. I have more pressing issues so will leave it…for now. I use Flexiseq, which helps a bit, but I think you need to use it regularly & I only turn to it when they’re worse!
You do realise that one email possibly got lost, you didn't reply and you were bumped?
Yes. But I don’t have the energy to do anything about it. Trying to get David back to health after pneumonia, sepsis & acute kidney injury, plus Covid still raging, & all 11 other diseases are in uproar. Plus the vertigo, which is dreadful…can’t walk in a straight line & need to grab the furniture as I drunkenly wander! Oh, & I stopped propanolol as the side effects were dreadful, & the essential tremor has come back twice as bad! The C.Diff I caught in hospital visiting has rumbled in a bit, too. Just want to get a holiday where we can both relax…while dealing with claim for our two lost weeks in Italy! S x
I use Flexiseq, which helps a bit, but I think you need to use it regularly & I only turn to it when they’re worse!
Yes you do… that’s the main point of it… 😊
I know, & I wanted to make the point to others reading it!! But with stuff to put on every toe since my big toenail lifted off completely 6 weeks ago, & stuff for mouth, & badly splitting open skin, & dreadful head sweats…not to mention still suffering with Covid after 21 days, fatigue is dreadful & the other 11 diseases are all in uproar! Oh, & vertigo is the main one affecting my life atm! Sometimes something gives & the consequences aren’t great! S x
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