1. < Polymyalgia Rheumatica (PMR)

What is the goal when first diagnosed with PMR?

Posted by sloped483 @sloped483, May 21, 2022

A couple of months ago I was diagnosed with PMR and was prescribed methylprednisolone 4 mg twice a day (equivalent to 10 mg of prednisone). Two months later into my treatment I'm still experiencing mild aches and pains.

A month into taking methylprednisolone my CRP and ESR showed no inflammation but a week later at an unrelated ER visit my blood work showed high CRP and ESR.

My two questions are:

Is the goal of prednisone treatment to simultaneously be pain free as well as normalizing CRP and ESR inflammatory markers?

Or is the main focus to just normalize CRP and ESR inflammatory markers?

Thanks.

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suetex | @suetex | May 24, 2022
In reply to @aspine "Hi, nkdonohue Fifteen to 20 mg of prednisone is a common amount to start treating PMR...." + (show)
@aspine

Hi, nkdonohue
Fifteen to 20 mg of prednisone is a common amount to start treating PMR. Actually, success in ridding one of the pain is part of the diagnosis for PMR, as there are no definitive tests for that purpose. Usually, the prednisone gives very fast relief - by which I mean 1, 2, or 3 days. If the steroids don't work, the doctor should keep looking for a different disease. Alternatively, if nsaids or pain killers DO work for him, that is also a clue that it is not PMR.

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I totally agree. Steroids seem to work very fast and NSAIDs hardly or not at all if it is PMR. I would look for another cause. Hope for the best for you both.

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johannab | @johannab | May 24, 2022

I had no relief for a flare at 20 mg so my PCP jumped me to 40 two weeks ago. I am pain free when seated and sedentary. Pain returns to hips and legs and abdomen with any exertion. My doc wants me to stay at this level for a few more weeks and see if PMR pain with exertion recedes by itself.
Thus the taper (when I do start) will start at 40 not at a higher place to come down from.

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marilynredder2367 | @marilynredder2367 | May 24, 2022
In reply to @sloped483 "Here's the thing with me and bumping up my prednisone, which I would love to do..." + (show)
@sloped483

Here's the thing with me and bumping up my prednisone, which I would love to do but am a little afraid due to previously being exposed to Hepatitis B from one of my many tattoos.

I got over the HB virus and am completely immune from ever getting it again and my liver has been healthy since then but if my immune system ever becomes suppressed/compromised in any way (i.e, steroids, chemotherapy, biologics, etc) then I have a greater chance that my Hepatitis B will reactivate with the possibility that it may cause irreparable harm as serious as liver failure.

My rheumatologist is aware of this and I think is the reason why she only started me on 4 mg of methylprednisolone twice a day. Also, my hematologist is aware as well but he's a little more concerned about me being on any steroid at all and even went as far as to suggest that I speak to my GI about a prophylactic HBV antiviral medication while on a steroid. I have read antivirals can be hard to be on.

So I see my rheumatologist in two weeks and I see my gastroenterologist in four weeks and hope some sort of consensus comes out of both in how to treat my PMR effectively without reactivating my HBV.

I have other health issues but PMR just complicates things for me.

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It sure does. So sorry. I can’t imagine living with the pain of PMR.

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suetex | @suetex | May 25, 2022

I do not know where to post this question but this is a very well informed group and maybe someone can shed light. Has anyone had balance problems with their PMR? My rhuemy says "No" and all my other docs are stumped. (Primary, Nuerologist) Had MRI of brain, no stroke and numerous circulatory test. No vertigo, no postural effect, just when feet are weight bearing. Started about 6 weeks after treatment for PMR, the 2nd time. Last bout of PMR was 30 years ago, no balance changes then. Now, I walk like a drunken sailor and can not stand for any length of time because I waver so it is very fatiqueing. I can ride horses ok so I am grateful for that. But my Spanish Mustang is very suspicious of me. (He wants a strong leader.) I am having someone work with him and pretend to be a bumbling mounter (that's me.)

I think my legs are sending bad signals to my brain, or maybe just one leg. Any ideas?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | May 25, 2022
In reply to @suetex "I do not know where to post this question but this is a very well informed..." + (show)
@suetex

I do not know where to post this question but this is a very well informed group and maybe someone can shed light. Has anyone had balance problems with their PMR? My rhuemy says "No" and all my other docs are stumped. (Primary, Nuerologist) Had MRI of brain, no stroke and numerous circulatory test. No vertigo, no postural effect, just when feet are weight bearing. Started about 6 weeks after treatment for PMR, the 2nd time. Last bout of PMR was 30 years ago, no balance changes then. Now, I walk like a drunken sailor and can not stand for any length of time because I waver so it is very fatiqueing. I can ride horses ok so I am grateful for that. But my Spanish Mustang is very suspicious of me. (He wants a strong leader.) I am having someone work with him and pretend to be a bumbling mounter (that's me.)

I think my legs are sending bad signals to my brain, or maybe just one leg. Any ideas?

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@suetex, My PMR is currently in remission but I do remember having about the same balance problems when it was active as I do now so I'm not sure the balance problem was related. I also have other conditions like neuropathy that I'm sure can cause balance problems. I do have problems standing for any length of time and walking any distance so I try to exercise daily on my exercise bike and do some resistance training to help build strength.

Have you looked into any exercises to help with your balance?

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1 reply
Teri | @tsc | May 25, 2022
In reply to @nkdonahue "My husband was recently diagnosed with PMR. He was a very active, fit 63 year old..." + (show)
@nkdonahue

My husband was recently diagnosed with PMR. He was a very active, fit 63 year old mountain biker before the symptoms began. Over a short period of time, we showed all of the classic symptoms of PMR. The GP prescribed prednisone. He took 15mg prednisone for several weeks with little improvement of his pain, stiffness, fatigue and difficulty sleeping. His rheumatologist recommended trying 16mg methylprednisolone/Medrol which is metabolized differently than prednisone. The 16mg dose is roughly equivalent to 20mg of prednisone. The rheumatologist thought it might possibly work better for him. Although he is very slowly seeing his symptoms decrease, he is nowhere near back to normal after taking the methylprednisolone for 11 days.

Has anyone in the Mayo connect community had such a slow response to the corticosteroid treatment? Did you eventually become symptom free so you could begin the weaning process?

We meet with the doc again on Wednesday. She requested a CT of my husband's chest, abdomen, and pelvis to rule out other possible diagnoses.

Thanks in advance for your thoughts.

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Hi @nkdonahue, PMR is supposed to respond to the appropriate dosage of prednisone dramatically. If it doesn 't, the chapter on PMR in Cecil and Goldman's textbook of medicine tells physicians to pursue alternative diagnosis - hypothyrodidm, malignancy, infection or connective tissue disorder. Have the doctors screened you husband for Giant Cell Arteritis, which requires a higher dosage of prednisone? Symptoms are terrible headache, difficulty seeing, scalp tenderness, difficulty chewing and jaw pain, a dry cough? I hope that helps.

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1 reply
suetex | @suetex | May 25, 2022
In reply to @johnbishop "@suetex, My PMR is currently in remission but I do remember having about the same balance..." + (show)
@johnbishop

@suetex, My PMR is currently in remission but I do remember having about the same balance problems when it was active as I do now so I'm not sure the balance problem was related. I also have other conditions like neuropathy that I'm sure can cause balance problems. I do have problems standing for any length of time and walking any distance so I try to exercise daily on my exercise bike and do some resistance training to help build strength.

Have you looked into any exercises to help with your balance?

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Boy, have I! Lots of sessions of PT and sessions with the PT Doc. Nothing really helps. No neuropathy that can be found. Had really strong legs when all this started. (Riding and posting for hours on end.) Can't relate it to anything accept an inflamed achilles tendon just prior (by a few weeks) the balance problem started. I was about 6 weeks into the PMR treament. (Which had gone 4 years undignosed.) So grasping at any connection that seems abnormal. Thanks for your input.

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nkdonahue | @nkdonahue | May 25, 2022
In reply to @tsc "Hi @nkdonahue, PMR is supposed to respond to the appropriate dosage of prednisone dramatically. If it..." + (show)
@tsc

Hi @nkdonahue, PMR is supposed to respond to the appropriate dosage of prednisone dramatically. If it doesn 't, the chapter on PMR in Cecil and Goldman's textbook of medicine tells physicians to pursue alternative diagnosis - hypothyrodidm, malignancy, infection or connective tissue disorder. Have the doctors screened you husband for Giant Cell Arteritis, which requires a higher dosage of prednisone? Symptoms are terrible headache, difficulty seeing, scalp tenderness, difficulty chewing and jaw pain, a dry cough? I hope that helps.

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Hello Teri,
Thank you for the message. The doctor did look at his thyroid function and checked for symptoms of Giant Cell Arteritis. Those two have been ruled out. CBC didn't indicate infection. He is schedule for a CT in about 10 days to rule out malignancy. Today, the doc presented two options: increase the dose further since there has been some improvement with the 16mg of methyl prednisolone OR cut back on the Rx for a couple of days and do an MRI of the shoulder to check for indications of rheumatoid arthritis. His RF is a little bit elevated. We agreed that it seems like there is some gradual improvement and that trying the higher dose will give us information that we need - so he's going to increase to 24mg of the methyl prednisolone. We hope this will take out all of the symptoms of PMR. Fingers crossed...

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