Do I really have PMR?

Posted by englerbarb @englerbarb, Aug 31, 2021

Hi. First of all, I’m so glad I’ve found this group! I was diagnosed with PMR 4 days ago and started taking 20mg Prednisone 3 days ago. I already feel so much better and am hoping for no, or few side effects. I’m wondering if any of you who have PMR had normal inflammatory markers at the time of your diagnosis. I found out today from my doctor that mine are normal, so she thinks it might be something other than PMR. Do any of you have experience with this too? I’ll be going back to the lab to get more testing done in another week and a half. If I don’t have PMR, why would the prednisone work for my pain and what else could it be other than PMR?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Hi @aspine, Thanks again for the private messages. I do think posting your experiences in discussions also helps other members who may have the same experiences or similar questions. I'm glad to hear that your bloodwork has come back into the normal ranges. I had never really thought about the possibility of anyone having a "mild" case of PMR but that is actually a very good question. Here's some information from the Arthritis Foundation that mentions maybe why your rheumatologist is talking about using other treatments for PMR.

"They are the mainstay of PMR treatment. The dosage for PMR is low and symptoms will improve quickly with treatment. The dosage will be lowered further once symptoms improve. Occasionally, mild cases of PMR are treated with nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen and naproxen, to ease symptoms." -- Polymyalgia Rheumatica - Arthritis Foundation: https://www.arthritis.org/diseases/polymyalgia-rheumatica#:~:text=They%20are%20the%20mainstay%20of,and%20naproxen%2C%20to%20ease%20symptoms.

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with normal sed rate and crp i doubt you have pmr unless you were already in remission at the time of the tests..also there are other inflammatory and non inflammatory conditions where you would feel better with steroids

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@munchie

with normal sed rate and crp i doubt you have pmr unless you were already in remission at the time of the tests..also there are other inflammatory and non inflammatory conditions where you would feel better with steroids

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Between 15-20% of all PMR patients have normal sed and crp. I am one of those and there is no doubt I have PMR.

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@kmeikle1

Between 15-20% of all PMR patients have normal sed and crp. I am one of those and there is no doubt I have PMR.

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can you cite the literature since i think this # is a bit high..also it is found in people without other symptoms such as fever

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The 15-20% figure is often used by members in another forum (healthunlocked/pmrgcauk) that I find very informative. I'll keep looking for their source material. I did find one study that states up to 22% have normal ESR at the time of diagnosis though it's rare to have both normal ESR and CRP (https://www.rcpe.ac.uk/sites/default/files/quick.pdf).

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@johnbishop

Hi @aspine, Thanks again for the private messages. I do think posting your experiences in discussions also helps other members who may have the same experiences or similar questions. I'm glad to hear that your bloodwork has come back into the normal ranges. I had never really thought about the possibility of anyone having a "mild" case of PMR but that is actually a very good question. Here's some information from the Arthritis Foundation that mentions maybe why your rheumatologist is talking about using other treatments for PMR.

"They are the mainstay of PMR treatment. The dosage for PMR is low and symptoms will improve quickly with treatment. The dosage will be lowered further once symptoms improve. Occasionally, mild cases of PMR are treated with nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen and naproxen, to ease symptoms." -- Polymyalgia Rheumatica - Arthritis Foundation: https://www.arthritis.org/diseases/polymyalgia-rheumatica#:~:text=They%20are%20the%20mainstay%20of,and%20naproxen%2C%20to%20ease%20symptoms.

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Hi, John,
I did in fact check out the article you referred to from the Arthritis Foundation, and they do actually refer to "mild cases" of PMR. So it will be interesting to see how this all plays out. The symptoms I experienced before I was diagnosed were anything but mild - very painful. But my numbers were not nearly as out of wack as some of the people in this group have given. After I was diagnosed, the prescribed amount of pred was 15mg, while some in this group were given as much as 40 mg. in the beginning. The 15 mg. knocked out all of the pain within 3 days. And my blood tests are looking normal now. I am now on 8 mg, and still pain free. I would love to get off the pred, but cannot take the nsaids, because I've been diagnosed with chronic kidney disease and have been warned off of them. So I guess I'll just take this journey one day at a time, and hope for the best.

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@aspine

Hi, John,
I did in fact check out the article you referred to from the Arthritis Foundation, and they do actually refer to "mild cases" of PMR. So it will be interesting to see how this all plays out. The symptoms I experienced before I was diagnosed were anything but mild - very painful. But my numbers were not nearly as out of wack as some of the people in this group have given. After I was diagnosed, the prescribed amount of pred was 15mg, while some in this group were given as much as 40 mg. in the beginning. The 15 mg. knocked out all of the pain within 3 days. And my blood tests are looking normal now. I am now on 8 mg, and still pain free. I would love to get off the pred, but cannot take the nsaids, because I've been diagnosed with chronic kidney disease and have been warned off of them. So I guess I'll just take this journey one day at a time, and hope for the best.

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Both of my encounters with PMR were started at 20 mg. The first time took me 3-1/2 years to taper completely off of prednisone. The second time it only took a year and a half but I had also made some lifestyle changes in diet and exercise which I'm sure helped with that.

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Interestingly enough my last two sed rate and crp have been normal, leading my Rheumy to believe it's osteoarthritis. However, the PMR symptoms are present, hips, shoulders, back, stiffness all present in the AM becoming more manageable during the day returning before bedtime. Presently I'm taking 5mg prednisone, 650mg Tylenol, 200mg hydroxychloroquine in the AM and PM with 800mg ibuprofen three times a day. Will taper the prednisone by 1mg this Friday...The ibuprofen makes the biggest difference for the lower back pain just wondering about osteoarthritis vs PMR symptoms and where all this going? Sure would like to get some energy back...

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Your sed rate and crp will likely be normal while you are taking prednisone.

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Welcome to the group. I, too, have had normal inflammatory markers since I was diagnosed with PMR 2 years ago. I have been gradually tapering my prednisone and I'm now at 5 mg per day (after a brief remission and then a flare up in October when I had the flu shot). I had started at 15 mg per day and my pain was gone within a couple of days. So, the answer to your question is: Yes, you can have normal inflammatory markers and still have PMR (confirmed by my rheumatologist). Good Luck! Kathy

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