What is the goal when first diagnosed with PMR?

Posted by sloped483 @sloped483, May 21 8:44am

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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Hi @sloped483, In my non medical opinion based on my 2 occurrences of PMR, the goal when diagnosed is to treat the PMR "pain" with prednisone or whatever medication is being used and taper off as soon as the pain is no longer an issue when you are off of the medication. The CRP and ESR are just indicators and do not necessarily mean you can't taper off of the drugs (just my opinion) but it would be a good question for your rheumatologist. Here are a couple of references on the topic:

— Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: a four-point guidance: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911650/
— Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: https://academic.oup.com/rheumatology/article/58/5/921/5285558

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@johnbishop

Hi @sloped483, In my non medical opinion based on my 2 occurrences of PMR, the goal when diagnosed is to treat the PMR "pain" with prednisone or whatever medication is being used and taper off as soon as the pain is no longer an issue when you are off of the medication. The CRP and ESR are just indicators and do not necessarily mean you can't taper off of the drugs (just my opinion) but it would be a good question for your rheumatologist. Here are a couple of references on the topic:

— Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: a four-point guidance: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911650/
— Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: https://academic.oup.com/rheumatology/article/58/5/921/5285558

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Thanks for the reply.

My CRP and ESR were both high at time of diagnosis along with crippling aches and pains where I had extreme difficulty walking, moving my arms and neck, and blew up my elbow where I have osteoarthritis. But it seems my inflammatory markers are fluctuating and am not sure if this is normal.

So I guess the goal is to be pain free irrespective of CRP and ESR levels? Yes, no?

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@sloped483

Thanks for the reply.

My CRP and ESR were both high at time of diagnosis along with crippling aches and pains where I had extreme difficulty walking, moving my arms and neck, and blew up my elbow where I have osteoarthritis. But it seems my inflammatory markers are fluctuating and am not sure if this is normal.

So I guess the goal is to be pain free irrespective of CRP and ESR levels? Yes, no?

Jump to this post

Yes! PMR pain is the pits.

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On the correct dosage of Prednisone, my pain completely disappeared (20 mg). It was fairly non-existent at 15 mg; now down to 14 mg starting today. Trying to taper. The goal in my opinion is to reduce the inflammation (which is what the Prednisone is for) that is causing the pain. Let your body be the guide. Maybe you need a higher dose? Sounds like it, but you need a Rheumatologist. There are many ups and downs to Prednisone and PMR and it's an individual journey. Wishing you all the best.

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To quote an asthma specialist, " Symptoms trump numbers!" I'm beginning to think that this is true for most diseases. We wouldn't even know if we had an high ESR or CRP without the pain and stiffness, right?! My ESR has been normal the whole time and I also have Crohn's, so go figure. Hopefully, your Dr. will listen to you and not focus on the numbers. Best of luck.

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Hi, Sloped 483,
From what I've been seeing, your dose is low (comparable to 10mg of prednisone) for a starting dose. The most common dose is 15 to20 mg of prednisone to begin. You should ask your doctor to up the dose and see what it does for you. That pain is an indication of inflammation. And it sounds like the inflammation has been allowed to build up (higher numbers than before) because you're not on enough pred. to get rid of it. Once the pain is gone, you can start planning on how to reduce (very gradually) the amount of prednisone (or whatever). But that's a conversation for another day.

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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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@milld835

On the correct dosage of Prednisone, my pain completely disappeared (20 mg). It was fairly non-existent at 15 mg; now down to 14 mg starting today. Trying to taper. The goal in my opinion is to reduce the inflammation (which is what the Prednisone is for) that is causing the pain. Let your body be the guide. Maybe you need a higher dose? Sounds like it, but you need a Rheumatologist. There are many ups and downs to Prednisone and PMR and it's an individual journey. Wishing you all the best.

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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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My response to the initial 20 mg Prednisone (Jan. 5, 2022) was like an overnight miracle. The next morning, I was finally able to actually move right shoulder, arm and hand over to the nightstand and had to think "gee I just did that". It had been 5 months of agonizing pain. From neck all the way down to upper thighs. I could not use the toilet because sitting was excruciating (got a riser seat). Eventually, I was symptom free. Now I'm weaning, very slowly. Starting again yesterday at 14 mg. because at 13.75, the pain was returning. So Neurologist upped it to 15 mg. for a couple of weeks. At 14 mg. feeling very tired, a few manageable aches and pains. Mood swings not so great. I think the word "normal" is highly overrated. I was also a fairly active, young 71/72. My goal is to be almost that active again and I will…slowly. All the best ~ Deb

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@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, 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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@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.

Jump to this post

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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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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