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First meeting with endocrinologist
Polymyalgia Rheumatica (PMR) | Last Active: 11 hours ago | Replies (12)Comment receiving replies
@dadcue Thank you for your response. I am currently taking 2 mg. prednisone. My rheumatologist told be I no longer have PMR because I have had it for 2 years and that is the length of time for it (actually she is wrong I have only had it a year) This surprised me and I asked how she could tell. She said it is because I could raise my hands over my head and get up out of a chair. I have always been able to--with pain. So I inquired as to why I still had the same symptoms. She said--'probably arthritis." That is all she had to say. I am still pondering the appointment and thinking of changes of provider. She showed very little interest in my well being no matter what the diagnosis. Have you ever heard of PMR just being for 2 years--for everyone. My body tells me I still have it but I guess I have a year to convince it otherwise.
Replies to "@dadcue Thank you for your response. I am currently taking 2 mg. prednisone. My rheumatologist told..."
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@csimmonds
I think doctors were taught that PMR was supposed to last 1-2 years in most cases. Current research says PMR can last much longer in some cases. I don't know what to believe but I know patients diagnosed with PMR seem to need Prednisone for longer than 2 years. I took Prednisone for 12 years to treat PMR.
A universal problem is that patients have a very difficult time tapering off Prednisone within a 2 year time frame after PMR is diagnosed.
https://www.keele.ac.uk/nhs/healthimpactinthenews/2022/may/keele-research/polymyalgia-rheumatica-treatment.php
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I think there are many possible reasons. Patients can have PMR longer than 2 years so that is certainly possible.
People can have other underlying conditions in addition to PMR so that is possible too. Those other conditions can include osteoarthritis pain which tends to disappear when Prednisone is started but resurfaces again when we taper our Prednisone dose lower.
I was diagnosed with a type of autoimmune inflammatory arthritis many years before PMR was diagnosed. My rheumatologist believed it was possible to have multiple autoimmune conditions simultaneously. As the following link says treating multiple autoimmune conditions gets tricky.
https://www.uclahealth.org/news/article/treating-two-autoimmune-disorders-simultaneously-tricky.
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The longer we take Prednisone the more difficult it is to taper off Prednisone. This is especially true when our adrenal function doesn't recover very quickly after long term Prednisone use. Prednisone induced adrenal insufficiency mimics PMR symptoms too.
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I honestly don't know why I needed Prednisone for 12 years to treat PMR. I tend to believe it was all of the above. The thing that makes me wonder is whether or not Prednisone is the best treatment for PMR. When I started a biologic called Actemra to treat PMR ... then I was able to taper off Prednisone in 2 years.
Anything is possible. Researchers are only starting to understand PMR. It is always possible that what was thought to be known in the past about diseases turns out to be completely wrong. Doctors can't believe everything they are taught. Likewise ... patients can't believe everything a doctor says. I liked my doctor the most when they flat out said they didn't know everything.