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PMR and prednisone
I was diagnosed in April with PMR. Because it was mainly in my shoulders I saw an orthopedic surgeon who put me on an inflammatory. Shortly there after I had an appointment with my rheumatologist and diagnosed me promptly.
He started me on 5mg 2 to 3 a day of prednisone.
The problem is I am a diabetic but was only on metformin. Now I am using small doses of insulin. What I don't understand, did you stay on a consistent everyday?
On days I feel great I avoid taking my prednisone. Recently my pain is now in my thighs which is affecting my ability to walk. I have a granddaughter that plays college soccer, 2 granddaughters that play high school varsity soccer and we attend high school football games. This means that at least 4 times a week I am climbing bleachers. I believe this is a contributing factor to the thigh pain. I am OCD about my house, enjoy cooking and canning and I am also a quilter. I am finding these activities difficult too. I am really confused about the proper way I should be taking my prednisone. My rheumatologist is aware that I am concerned about my sugar and has not established a definite guide line for taking the prednisone. I use infrared heat, supplements, oils and Voltaren
I would appreciate any suggestions. I did receive a steroid injection in one arm because the bursa was so inflamed it caused a large painful bump. Has anyone tried physical therapy or massages? Today was horrible and I retreated to bed. I am so glad I found this group and am looking forward to any suggestions. We are planning a trip to Gatlinburg and would enjoy hiking. Thank you, Deb from Ohio
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@mwhite6262
My rheumatologist told me to find a stable dose of Prednisone that worked to control my pain before tapering. There was some concern when 30 mg of Prednisone controlled my pain but my inflammation markers were still elevated. My rheumatologist told me to increase my Prednisone to 35 mg as my starting dose.
My symptoms mattered more to my rheumatologist than my inflammation markers, My inflammation markers were rarely within the normal range when I was on Prednisone but my pain was tolerable most of the time. When my pain wasn't tolerable, my inflammation markers increased and correlated well with my increased level of pain.
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1 ReactionThank you so much for sharing that context! So helpful. Fingers crossed that my rheumatologist puts more weight in decision making to my symptoms than the inflammation markers. With me being about 3 weeks into my official diagnosis and almost 3 weeks of some pain relief from the prednisone I cannot go back to the suffering I endured for 8 weeks waiting on a definitive diagnosis. I will be direct about my symptoms/pain level.
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1 Reaction@mwhite6262
Some people say "no pain" is the goal. I never expected to have no pain. My rheumatologist could tell when I was in pain. She always believed me so I didn't need to embellish anything. She sometimes didn't believe me when I said I had no pain.
My rheumatologist wasn't sadistic and she didn't want me to be in pain. However, she was aware of the problems associated with prednisone as my treatment. There were limits to "how much" and "how long" I could safely take prednisone. My rheumatologist always "encouraged" me to take the lowest effective dose for the least amount of time possible.
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1 ReactionI am assuming there will have to be a balance between tolerable discomfort vs prednisone dose. Without having my first rheumatologist appointment I'm trying to educate myself to help level set my own expectations. I've read 1 to 2 years to get this manageable or into remission? My nature is to rush things, but I'm already sensing this will be different and nothing will be rushed/forced. I am planning to take this one day at a time.
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1 Reaction@mwhite6262
One to two years is the time frame when rheumatologists get "uncomfortable" that their patients are still taking prednisone. This is when "steroid sparing" medications are introduced. It is the "cumulative dose" and "duration" of prednisone use that becomes concerning.
While the aim is to stop prednisone as soon as possible, the average duration of treatment with prednisone to treat PMR is approximately two years. However, for some people, the duration of treatment is much longer. I was treated with prednisone for 12 years! That outcome isn't something to strive for ... believe me.
The following is a good summary that is research based.
https://www.keele.ac.uk/nhs/healthimpactinthenews/2022/may/keele-research/polymyalgia-rheumatica-treatment.php
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My PMR was called refractory and characterized by frequent relapses. After 12 years of prednisone my rheumatologist decided I was "too young" to take prednisone for the rest of my life. Treatment with a biologic medication instead of prednisone was tried ... then I was able to taper off prednisone in 1-2 years. Now I have been off prednisone for 5 years. My treatment with a biologic is ongoing without all the side effects of prednisone.
Long-term treatment decisions should be personal decisions made with your doctor's help while taking into consideration the adverse effects associated with prolonged prednisone use. Some examples are osteoporosis, diabetes, mood disorders, adrenal insufficiency and other adverse effects.
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