1. < Polymyalgia Rheumatica (PMR)

PMR Flare up: Any suggestions on what to do?

Posted by bevletsgethealthy @bevletsgethealthy, Dec 18, 2022

Having bad wrist and hand pain. PMR Diagnosed Aug/ 22 starting dosage was 15 mg. Was tapered down to 10 after 2 months. Started having the hand and wrist pain and swelling at 10mg. I am back up to the15 mg. and the pain and swelling is not subsiding. Any suggestions on what to do?

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megz | @megz | Oct 26, 2023
In reply to @pjnewm "30 to 40 but not enough and thus 50. I’m an orthopedic surgeon" + (show)
@pjnewm

30 to 40 but not enough and thus 50. I’m an orthopedic surgeon

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That's a very very high dose of Prednisone for PMR. It usually responds well to much less. Are you dropping it again within a week or two?

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1sunny | @1sunny | Oct 26, 2023
In reply to @pjnewm "30 to 40 but not enough and thus 50. I’m an orthopedic surgeon" + (show)
@pjnewm

30 to 40 but not enough and thus 50. I’m an orthopedic surgeon

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It might have been good to mention you MD license .

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bradninchgirl | @bradninchgirl | Oct 27, 2023
In reply to @dadcue "Are you prescribing prednisone to yourself? Did you diagnose yourself? When I was first diagnosed with..." + (show)
@dadcue

Are you prescribing prednisone to yourself? Did you diagnose yourself?

When I was first diagnosed with PMR, I ignored what my rheumatologist told me because I thought I knew everything about tapering off prednisone. I had a 15 year history of recurring uveitis along with reactive arthritis. My ophthalmologist frequently prescribed 60 mg for uveitis. My ophthalmologist would adjust my dose upward if needed until the uveitis responded. I was then allowed to taper myself off with instructions to call if I had difficulty with tapering. I could always taper off quickly in a month or two so I rarely had a need to call.

In retrospect, I didn't know anything about PMR but I thought it would respond to prednisone the same way as reactive arthritis and uveitis did ... wrong! The treatment for PMR is "long term" as in years instead of months.

I got off to a bad start because I thought I knew everything. I got a "non compliant" label put on me because I kept increasing my dose. My rheumatologist started me on 20 mg but I increased it to 50 mg because it worked better than 20 mg.

My rheumatologist wanted me to find a "stable dose" of prednisone that worked to control my PMR symptoms. The stable dose I eventually found was 40 mg but my rheumatologist said it was too high a dose for PMR. My rheumatologist would have liked something less than 30 mg.

I refrain from giving medical advice due to my training as a nurse. However, I suspect something else is happening. It might be PMR and something else. In my case, it was a "full range" of things in addition to PMR according to my rheumatologist.

I had the same rheumatologist for 15 years after PMR was diagnosed. We found ways to work together. I eventually got off prednisone but it took a long time and an entirely different treatment plan.

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Medication is only one facet of treating PMR. I can't say this often enough: Diet. Be careful what you eat and research the foods you need to keep away from. Best of luck and wishes for success. It is possible to get over this even it may not feel that way right now.

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2 replies
cpd54 | @cpd54 | Oct 28, 2023
In reply to @bradninchgirl "Medication is only one facet of treating PMR. I can't say this often enough: Diet. Be..." + (show)
@bradninchgirl

Medication is only one facet of treating PMR. I can't say this often enough: Diet. Be careful what you eat and research the foods you need to keep away from. Best of luck and wishes for success. It is possible to get over this even it may not feel that way right now.

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My pain is almost non existent when I follow an autoimmune protocol diet. It’s very restrictive and hard to comply with for long periods but when I “fall off the wagon” I can tell !!!

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1 reply
seniormed | @seniormed | Oct 28, 2023
In reply to @pjnewm "30 to 40 but not enough and thus 50. I’m an orthopedic surgeon" + (show)
@pjnewm

30 to 40 but not enough and thus 50. I’m an orthopedic surgeon

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If you respond and can taper soon it would be informative to check
your IL-6 level and consider a biologic like Actemra.
MEDLINE research and your rheumatologist colleague should help you with the decisions.

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DadCue | @dadcue | Oct 28, 2023
In reply to @bradninchgirl "Medication is only one facet of treating PMR. I can't say this often enough: Diet. Be..." + (show)
@bradninchgirl

Medication is only one facet of treating PMR. I can't say this often enough: Diet. Be careful what you eat and research the foods you need to keep away from. Best of luck and wishes for success. It is possible to get over this even it may not feel that way right now.

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I agree medication is only one facet of treating PMR. Diet is another important facet. The treatment of PMR should be multifaceted.

Whenever I asked my doctors a question about "why things happen," the inevitable response to my question was the problem was "multifactorial."

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trimomlewis | @trimomlewis | Oct 28, 2023
In reply to @pjnewm "Has anyone had to increase their prednisone dose to 50 mg per day for a flare?" + (show)
@pjnewm

Has anyone had to increase their prednisone dose to 50 mg per day for a flare?

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What is an "autoimmune protocol diet"?

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1 reply
DadCue | @dadcue | Oct 28, 2023
In reply to @trimomlewis "What is an "autoimmune protocol diet"?" + (show)
@trimomlewis

What is an "autoimmune protocol diet"?

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The following link explains the autoimmune protocol diet.
https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet
I do think diet is important but it adds another element to an already complicated situation. Most of my pain happened for no reason at all. My pain was more like voodoo and dark magic if you ask me.

My immune system is just deranged. Fortunately, my doctors believe me and help me as much as they can. I don't completely understand the various inflammation pathways. The medication I currently take seems to stop my inflammation.

I had a recent rheumatology visit that became a "teaching session" for a medical student, resident doctor and a fellow. I asked the staff rheumatologist how he knew so much about me. To my surprise, he informed me that he had the same autoimmune condition that I have ---reactive arthritis and uveitis. The staff doctor wasn't old enough yet to have PMR.

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josie20019 | @josie20019 | Oct 28, 2023
In reply to @cpd54 "My pain is almost non existent when I follow an autoimmune protocol diet. It’s very restrictive..." + (show)
@cpd54

My pain is almost non existent when I follow an autoimmune protocol diet. It’s very restrictive and hard to comply with for long periods but when I “fall off the wagon” I can tell !!!

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Where did you get the autoimmune diet? I’m willing to try it!!

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1 reply
cpd54 | @cpd54 | Oct 28, 2023
In reply to @josie20019 "Where did you get the autoimmune diet? I’m willing to try it!!" + (show)
@josie20019

Where did you get the autoimmune diet? I’m willing to try it!!

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Lots of websites to choose from. Just Google and choose the one that works for you. I also had a food sensitivity test done and some foods that are allowed on a AIP diet didn’t agree with me so I don’t eat those either. I basically eat meat, vegetables (no nightshades or high oxalate greens) and limited fruits.

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