Are painful swollen hands and fingers a PMR flare?

Posted by deborahinmaine @deborahinmaine, May 15 11:56am

I got off prednisone for PMR after almost 3 years in April. In February I had woken with swollen painful hands and fingers. Because of how I sleep it was diagnosed unseen as carpal tunnel. Finally saw my rheumatologist and she thinks it could be a PMR flare,didn’t look like carpal tunnel. That makes sense to me but she has put me back on only 3mg. of prednisone. I have no strength in my hands and can’t make a fist. Very limited in what I’m able to do.
When first diagnosed with PMR and in terrible pain this same rheumatologist started me on 5mg. of prednisone which did nothing.
Finall got up to 20mg. And got some relief.
Has anyone else had issues with your hands during or after being on prednisone for PMR? I also just found out there is osteoarthritis in my hands.
Thanks!

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@dadcue

Giving her adrenals a chance to produce cortisol depends on why she was put on a "maintenance dose of prednisone." An endocrinologist would do this if it was likely that her adrenals won't restart or won't produce enough cortisol again. If she has "permanent adrenal insufficiency" taking a maintenance dose of a corticosteroid is how that is treated.

She might not need Prednisone for PMR anymore. She might still need prednisone if she has adrenal insufficiency. I'm afraid rheumatologists "give up" sometimes when people can't taper off prednisone. It seems strange to me but people are willing to take Prednisone for the rest of their life If it relieves their symptoms of adrenal insufficiency --- their quality of life might be better. I don't know if that is the best outcome overall.

I had to stay on 3 mg without tapering for 6 months before my adrenals increased their production of cortisol. It might take someone else less time or more time. There is no way to predict how long it might take. One year is frequently the time frame that is given. If it doesn't happen in a year, it might be considered permanent ... I don't know.

My quality of life got better when I got off Prednisone. Fortunately, my adrenals weren't permanently suppressed.

Tylenol doesn't treat inflammation and swelling. It is not an NSAID. Tylenol can ease mild-to-moderate pain and bring down a fever. Unlike NSAIDs, it does not treat inflammation and swelling. Probably just a coincidence that the swelling went away but tylenol might have relieved the pain. Whatever happened - it was a good thing.

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Yes I was surprised about her comment on Tylenol relieving her pain and swelling. I agree with you that it was probably a coincidence for the same reason— it is not a NSAID. Personally I have found Tylenol great for a fever. If you have ever taken an opioid for pain, it usually has Tylenol in it because it actually helps an opioid drug to work better. So it does give good pain relief when combined with another drug. Tylenol by itself has limited pain relief , at least for me. I think it’s great that it worked for her. I have to rely on other meds like prednisone for inflammation cause I can’t take NSAIDS….

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I have had PMRFor Six months. I am now down to 7mg of Prednazone reducing by every two weeks. I still wake up in lots of pain every morning. Is this normal. I started out at 35 mg, and the pain is always there. I also take two Tylenol in the morning .

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@bunnybear

I learned years ago in nursing school that Tylenol was not anti inflammatory but then I read somewhere a couple of years ago that new research showed it did have anti inflammatory properties. All I can say is, at the high dose on the “Tylenol for Arthritis” bottle it most definitely did. Nothing else could explain that result at the time. Oh, and I now live in Plano, TX near Dallas. I have decided to see an Endocrinologist to evaluate both my adrenal situation and my long term use of levothyroxine. My daughter saw one she really felt gave her great information and I will make an appointment with him. It will probably take months to get in though.

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So now I'm really curious ... Why have you been on a 5 mg maintenance dose of prednisone for 12 years? That isn't what rheumatologists want to happen to PMR patients. Most rheumatologists want their patients off Prednisone in a reasonable amount of time --- usually 2 years or less for PMR patients. After 2 years, rheumatologists start trying methotrexate, leflunomide or other medications.

I was given a biologic called Actemra (tocilizumab) because I was unable to taper off prednisone for 12 years after PMR was diagnosed. I needed much more than 10 mg of prednisone most of the time. I usually flared whenever I tapered to 7 mg. My rheumatologist said a 3 mg dose for the rest of my life might be okay. However, he thought I needed too much Prednisone to keep my inflammation in check. That was the main reason why the biologic was tried.

The biologic worked ... I was off Prednisone a year later. I have been Prednisone free for 3 years.

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@dadcue : In Sacramento, I went to a Rheumatologist highly recommended by more than one other MD. Took forever to get in to see him. This was in about 2011-13 or so as I recall. He ruled out other causes and although I’d never had a high sed rate and other labs were WNL, by the time I got in to see him I was over the acute attack I’d had, and he recommended 10mg I believe due to ongoing pain (although it was far less than when previously I couldn’t even raise my hands above my head w/o excruciating pain). Then he tapered me off. I’d read in the literature that not everyone who has PMR has the typical markers like a high sed rate). After that, every time I started getting the upper arm pain I associated with my initial onset of PMR I would go see him and he’d restart me on 5mg/day. This happened 2-3 times and then I just stayed on that dose for a couple of years. That original Rhumy retired and a second Rheumatologist in the same location remarked that she did not object to that being a “maintenance” dose. When I moved to New Orleans, the Rheumatologist I saw there in 2021 immediately started reducing my prednisone but I couldn’t get below 3mg. and developed pseudo gout in both hands. I haven’t yet seen the new doctor here in Plano/Dallas TX but intend to see an Endocrinologist as well since I am on long term thyroid medication. I hope I have outlined all this correctly but it has been a long time ago and I am no spring chicken (85 and in relatively good health). Thanks for all the input.

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Thyroid problems seem to add another dimension to PMR. I didn’t have any thyroid problems to contend with.

I told my rheumatologist that I couldn’t taper off prednisone after 12 years. I tried and “failed” many times. My rheumatologist didn’t pressure me but it was expected that I keep trying.

I had the same rheumatologist for 12 years. We still communicate once in a while.

When I retired, I went to a new health care system. I was surprised when the new rheumatologist said he knew all about me at our introductory visit. He was a colleague of my other rheumatologist. He said he wanted me to try something new. That was when he asked if I was wiling to try a biologic medication that wasn’t even FDA approved for PMR.

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@bunnybear

I learned years ago in nursing school that Tylenol was not anti inflammatory but then I read somewhere a couple of years ago that new research showed it did have anti inflammatory properties. All I can say is, at the high dose on the “Tylenol for Arthritis” bottle it most definitely did. Nothing else could explain that result at the time. Oh, and I now live in Plano, TX near Dallas. I have decided to see an Endocrinologist to evaluate both my adrenal situation and my long term use of levothyroxine. My daughter saw one she really felt gave her great information and I will make an appointment with him. It will probably take months to get in though.

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Your mention of taking Tylenol (Panadol/Paracetamol) for swollen painful hands was timely for me. For a week I've had red puffy hands with more pain and was dreading the possibility of rheumatoid arthritis developing on top of PMR.

So I took one OsteoPanadol (modified release, 665mg) at bedtime last night and woke this morning without hand redness or puffiness, for the first time in a week. The pain is back to my PMR ache baseline, not completely gone, but much better. My doctor recommended Osteopanadol but I rarely take it. Maybe I should have listened. I now have another tool to deal with this nasty ailment and will use it without hesitation. The qualifier is that what helps us may not work the same way for others.

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@dadcue : What was the biologic called and can it be obtained without a prescription? Thanks.

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@bunnybear

@dadcue : What was the biologic called and can it be obtained without a prescription? Thanks.

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The biologic was called Actemra (tocilizumab). It is FDA approved for several autoimmune conditions. It was FDA approved for GCA about 7 years ago. My rheumatologist was reading the research studies when Actemra was approved for GCA. He thought Actemra should work for PMR. He had to get authorization to prescribe it to me.

https://creakyjoints.org/acr-2019/tocilizumab-actemra-giant-cell-arteritis-prolonged-remission/
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@bunnybear all the Biologics will not only require a prescription, they require the prescribing physician to document that you don't have any active infections. So you will get Blood work and a TB test at a minimum.

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I have only had issues with my hands swollen and painful when I had flares of either my osteo or reactive arthritis. With the osteo I had extreme pain that left me with heberdens nodes which are bony lumps in the finger joints.

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