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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@art43

Here is a helpful reference to osteoarthritis. https://www.arthritis.org/diseases/more-about/osteoarthritis-of-the-hands

It appears that what we are all experiencing is OA symptoms that were previously suppressed by our normal production of cortisol. If we were treated with prednisone for PMR, our adrenals stopped producing cortisol. As we taper off prednisone, our adrenals may be slow to resume cortisol production, and the decreasing prednisone dose is insufficient to control the OA discomfort. This can be expected to continue until we are off the prednisone, and we are producing sufficient cortisol again. If we never resume sufficient cortisol production, you may need to consult an endocrinologist. There are treatments other than prednisone that are preferred in that case. Best of luck on the difficult journey.

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I want to be sure I state as often as necessary that I suddenly developed these exact same symptoms and have never taken prednisone or any steroids. This must be from the PMR.

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I did not have hand pain early in my PMR treatment. That was five months ago at 30-40 mg pred. As I tapered down, the hand pain (no swelling) appeared. My rheumy didn’t have much to say, but the orthopedist I just saw felt it was “inflammatory” rather than OA. He said that pain across the first (large) set of knuckles is usually from an inflammatory process, but if the pain was in the smaller two sets of joints along the fingers, it would most likely be due to OA. Does this make sense to anybody? I have also had cramping (spasms) in my fingers and thumb at times, and wrist pain.

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@prestol

I did not have hand pain early in my PMR treatment. That was five months ago at 30-40 mg pred. As I tapered down, the hand pain (no swelling) appeared. My rheumy didn’t have much to say, but the orthopedist I just saw felt it was “inflammatory” rather than OA. He said that pain across the first (large) set of knuckles is usually from an inflammatory process, but if the pain was in the smaller two sets of joints along the fingers, it would most likely be due to OA. Does this make sense to anybody? I have also had cramping (spasms) in my fingers and thumb at times, and wrist pain.

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I still get hand spasms (cramping) that are painful. I have been off Prednisone for 3 years and my rheumatologist thinks PMR is in remission.

Otherwise, I would agree that my hand stiffness was caused by inflammation during PMR. I still have osteoarthritis because my rheumatologist says I have osteoarthritis in my hands and everywhere else they look.

I have also been diagnosed with inflammatory arthritis in addition to PMR. These two conditions aren't mutually exclusive. These two conditions aggravate each other.

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@janetilley

I am in much the same situation. But I’m tapering slower. I started at 20 mg four months ago and now at 9 for three weeks.
Painful mornings but I’ll stay on schedule as I’m anxious to get off Pred.
But you might go a bit slower also.

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My PMR first started manifesting in my hands and wrists on New Years Day. Everyone thought it was carpal tunnel but it was bilateral and then it spread. I had no strength and couldn’t close my hands. It soon went to my biceps, then shoulders & hips etc. Soon I couldn’t do anything! I was started on 15 mg. of prednisone and methotrexate. I’ve since titrated down to 5.5 mg prednisone daily and take 20 mg methotrexate once a week. I can slightly feel PMR in my hands and wrists but I can deal with it and try to ignore it - keeping busy in my garden.
I fall asleep every time I sit down.
I want to get off prednisone because it gave me type 2 diabetes! I’m extremely strict with my diet and have gotten off insulin. It’s also affected my teeth and I’m sure my bones are under attack. My rheumatologist wants me to go on kevsara, but I’m not wanting to be on an expensive drug that I have to stay on for years! My hair is thinning from methotrexate.
I think the doctors just experiment on us with all of these dangerous drugs that carry their own list of warnings of life threatening conditions that just cause us even more issues. I was very healthy and then something suddenly went wrong and caused my body to start attacking itself and I want to know what that is!

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@tuckerp

unfortunately you will have to guide your Dr's. I had carpel tunnel. I just kept pursuing until they sent me to a Dr that did the electro treatment. Not sure whats it called. That is a definitive test. They can also test for RA. I think the test is reasonably accurate if your off prednisone.

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Its called a nerve conduction test - which evaluates the carpal tunnel by applying an electrical signal to the median nerve that traverses the wrist. If the speed across the wrist is impeded in its ability to carry that signal from above the wrist to the palm, it’s likely carpal tunnel.

As you likely know, the tests for RA are some lab data consistent with increased inflammation, exam features, and some assumptions based on experience. So Art plus Science.

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One side affect from osteoarthritis is getting bone spurs (nodes) in joints of your fingers—extremely painful when they are forming, but once they have formed the pain usually goes away and you are left with the deformity in you fingers. I have it in 2 of my fingers and I think I’m getting another one as my fingers and hands have been very painful this last week. 🥲 Rubbing a topical, Aspercreme, on my fingers helps with the pain.

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Bottom line is that we are all not getting any younger and osteoarthritis seems to develop as we age.
And PMR is considered an arthritic condition, as listed in the Mayo Clinic guide to Arthritis.

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@pb50

When i had my onset, it was in hands for two days, then it was shoulders, hips, ankles and was excruciating, accompanied by profound weakness. I couldn't sleep because if I rolled over my shoulders screamed. I had to put my shampoo bottle between my knees to squeeze because my hands were too weak.
My new Rheumy a few weeks later was inclined toward PMR but something made her give me a trial of Humira - and i had improvement in less than a week.

The point is that our maladies are more similar than different. I still occasionally get a period of the shoulders/hips thing and my Rheumy gives me 20 mg of Prednisone to taper down. But what I live with every day is RA. So do I have both or just some weird variant? Who knows - or cares. But you are correct that treating RA with Remicade won't do anything for the PMR symptoms. That takes Prednisone.

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I’m curious. Did you test positive with lab work for RA and have all the symptoms?
Each time I get tested it’s negative. So far we thought it was PMR but the new pain in my wrists, hands, fingers makes me wonder.

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I have always tested negative for RA. I do have reactive arthritis that is an inflammatory type arthritis that mimics RA. I did test positive for the HLA B27 gene which makes you more prone to these autoimmune diseases.

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@vandyms1974

My pain began in my hips and after time migrated to my shoulders also. I NEVER had pain in my hands nor my wrists. One NP diagnosed me with RA! Did not believe that with no finger nor wrist involvement. When I got to my current doctor, he diagnosed PMR. On 3.5-4 mgs per day to control the inflammation and pain. Going on two years now and no remission in sight. Praying for that!
Any minor illness causes a flair and I now have afib. Caused by MPR or pred?? Who knows.
Hope this helps.

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Any minor illness causing a flare sounds like reactive arthritis. That’s usually how it works but I would ask your rheumatologist about that. I have been very lucky that I have had some good doctors taking care of me.

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