PMR initial diagnosis: Can there be an underlying disease?

Posted by charlena @charlena, Sep 10, 2020

My husband was diagnosed with PMR several years ago and placed on prednisone. It no longer seems to help him. Just wondering, has anyone here been initially diagnosed with PMR only to be re-diagnosed with a different disease or have an underlying disease discovered? Also, does anyone feel they have been diagnosed with PMR because the doctor can't figure out what the problem is and diagnosed you with PMR because you have some of the symptoms of PMR?

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

@stiff

Have you been evaluated for psoriatic arthritis?

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Welcome @stiff, I don't think @ohgodithurts is still following Connect since they have never replied to any post. Do you have psoriatic arthritis? Do you mind sharing how you found Connect?

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PMR is a sneaky culprit. I have been on 8 mg of methylprednisolone for over a year now. Every once in a while out of nowhere I get a debilitating flare and I have to bump my dose up for a few days, usually to 12mg. Then drop back to 8mg. In a day or two. Every 3 or 4 months I try to ween off 2mg but within a week I have to go back to 8mg. This disease is relentless if nothing else.

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@ajf

PMR is a sneaky culprit. I have been on 8 mg of methylprednisolone for over a year now. Every once in a while out of nowhere I get a debilitating flare and I have to bump my dose up for a few days, usually to 12mg. Then drop back to 8mg. In a day or two. Every 3 or 4 months I try to ween off 2mg but within a week I have to go back to 8mg. This disease is relentless if nothing else.

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I have had PMR off and on for 30 years. Do you ever wonder why there is so little understanding of the cause of this disease? I feel that since it doesn't kill you the doctors don't get too concerned. Another question is since most PMR patients are on some form of prednisone we would have a better understanding of what the long-term effects of prednisone are at low doses. I have been on 2.5 mg of pd for about 10 years. Due to acute treatment of another condition I know what higher doses of pd make me feel much better.

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I have to agree that the medical understanding of this disease is disappointing. I read recently (in an official medical flow chart for diagnosis PMR) that PMR doesn't cause muscle weakness. But I have experienced it and I have read here that it is the main symptom for some people, so I say, Balderdash! Sure seems like a factor to me. I welcome more research on this condition.

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@johnbishop

Welcome @stiff, I don't think @ohgodithurts is still following Connect since they have never replied to any post. Do you have psoriatic arthritis? Do you mind sharing how you found Connect?

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I have PMR not PSA. I was trying to help answer a question posted previously.

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@suetex

I have to agree that the medical understanding of this disease is disappointing. I read recently (in an official medical flow chart for diagnosis PMR) that PMR doesn't cause muscle weakness. But I have experienced it and I have read here that it is the main symptom for some people, so I say, Balderdash! Sure seems like a factor to me. I welcome more research on this condition.

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Hi @suetex, when I first saw my rheumatologist, I described how I was unable to push down a faucet in a public washroom when I was in the throes of PMR. He asked me if it was because of pain or weakness. I couldn't answer at the time, but I've since concluded that the excruciating pain made movement nearly impossible and caused weakness.
What I've read about PMR – it is an autoimmune disorder with genetic markers, most common in older persons of European ancestry, particularly Northern European. My background is largely Southern European, but my maternal aunt had PMR and Giant Cell Arteritis, which I also have.

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I know the question of is it pain causing weakness is hard to answer, but I can conpare what I could used to do with my legs now as to before and it sure seems like weakness to me. Also, there are a few who have been diagnosed with PMR (and are being treated as such) that don't have pain, only weakness. Have they been labeled incorrectly? Maybe, I don't know. My mind is still open. I'm sure sorry that you have GCA, that's scary. I'm always conscious that it could happen.

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@suetex

I know the question of is it pain causing weakness is hard to answer, but I can conpare what I could used to do with my legs now as to before and it sure seems like weakness to me. Also, there are a few who have been diagnosed with PMR (and are being treated as such) that don't have pain, only weakness. Have they been labeled incorrectly? Maybe, I don't know. My mind is still open. I'm sure sorry that you have GCA, that's scary. I'm always conscious that it could happen.

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Hi @suetex, thank you for your kindness. My disease has been managed very well the last year – I'm down to 2.5 mg prednisone from 40 with no difficulties and able to do things I couldn't before. Take care.

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That is very encouraging that your treatment went so well. Keep up the good work. All the best.

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