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Were you misdiagnosed with PMR? What was your diagnosis?

Posted by charlena @charlena, Mar 2, 2022

Has anyone been diagnosed with PMR only to find out this was a misdiagnosis? If so, it would be helpful if you would share what you were diagnosed with. My husband was diagnosed by a rheumatologist in 2018 as having PMR. He has never experienced remission. He has tried several times to reduce his prednisone 1 mg at a time. Each time he experiences the same excruciating and debilitating pain within 1/2 day of decreasing the prednisone. Thank you for your input!

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 2, 2022

@charlena, You will notice we changed your discussion title a little to help let members know what your question is. I'm sorry to hear that your husband is having trouble tapering down. It sounds very much like my first occurrence with PMR which lasted 3 and half years before I could successfully taper off of prednisone. I met with my rheumatologist when I was struggling tapering down and he shared the story of another patient who was at 1 mg for more than a year before being able to taper off. My own experience was going back and forth between 1 mg and 1/2 mg of prednisone the last six months of the 3-1/2 years. I did have to find a good pill splitter and still it was not easy for me to split the pills but it did help me get through.

My second occurrence with PMR six years later went much better because I made some changes to my lifestyle -- exercised a little more and stopped eating processed food while trying to eliminating as much sugar as possible. I think what makes diagnosis hard sometimes is that there are a lot of conditions that mimic PMR. I think if I lost confidence in my rheumatologist I would probably try and get a second opinion.

Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

Has your husband tried to make any lifestyle type changes to see if they may help?

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charlena | @charlena | Mar 2, 2022
In reply to @johnbishop "@charlena, You will notice we changed your discussion title a little to help let members know..." + (show)
@johnbishop

@charlena, You will notice we changed your discussion title a little to help let members know what your question is. I'm sorry to hear that your husband is having trouble tapering down. It sounds very much like my first occurrence with PMR which lasted 3 and half years before I could successfully taper off of prednisone. I met with my rheumatologist when I was struggling tapering down and he shared the story of another patient who was at 1 mg for more than a year before being able to taper off. My own experience was going back and forth between 1 mg and 1/2 mg of prednisone the last six months of the 3-1/2 years. I did have to find a good pill splitter and still it was not easy for me to split the pills but it did help me get through.

My second occurrence with PMR six years later went much better because I made some changes to my lifestyle -- exercised a little more and stopped eating processed food while trying to eliminating as much sugar as possible. I think what makes diagnosis hard sometimes is that there are a lot of conditions that mimic PMR. I think if I lost confidence in my rheumatologist I would probably try and get a second opinion.

Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

Has your husband tried to make any lifestyle type changes to see if they may help?

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Thanks, John!

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