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I Am newly diagnosed with PMR but for years have been hurting. I have had pain in my shoulders, upper arm mussels, and hips. It was to the point that people grabbing my arms would hurt me.
1. Dr diagnosed PMR 27 Oct. 2023 and put me on 40 mg of Prednisone. and this gave me great relief.
2 On 9 Nov. 2022 the Dr dropped prednisone to to 20 mg but pain increased but was tolerable
3. later he reduced it back to 10 mg and the pain became bad again..
4 Went back to the Dr. 6 Apr. and he increased it back to 20 mg. and called in the new prescription, I thought. They issued a prescription for 10 mg again. I am hurting now.
5 i will visit the Dr. office today and try to get this corrected and a copy of my blood test results. there Is a lot I don't understand about PMR.
5 I will be 74 this year and PMR is making my life miserable. ANY SUGGESTIONS PLEASE would help.
Replies to "I Am newly diagnosed with PMR but for years have been hurting. I have had pain..."
Have you looked into treatment with Actemra (Tocilizumab)?
It has been shown to be pretty effective in helping people get off Prednisone and go into remission. There are side effects, but overall the adverse events when it is used to taper with Prednisone are less than with Prednisone alone.
There was a good trial of it against Giant Cell Arteritis, which is a closely related disease, published in New England J Medicine.
https://www.nejm.org/doi/full/10.1056/nejmoa1613849
It sounds to me like your taper was too fast. It took me more than a year to totally taper off prednisone. Perhaps try to seek a referral to a rheumatologist. I believe they know more about PMR than regular doctors do.
Best wishes for relief.
I think you are reducing too fast. Go from 20mg to 17.5 wait to see how you, feel then 15mg then 12.5 then 10 mg. It needs to be slow and steady, depending on how YOU feel after each change.
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Welcome @everettcatlin, From what I've read there are some people who have PMR with normal blood markers for inflammation. You will notice that we moved your post to an existing discussion on the same topic here:
--- PMR with normal blood markers: https://connect.mayoclinic.org/discussion/pmr-with-normal-blood-markers/.
@johnlo, @redboat, @cookiegirl1944 and others may have experiences to share with normal blood inflammation tests and PMR. Here is some information on the topic that may offer a better explanation:
— Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: a four-point guidance
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911650/.
One of the things that helped me after my first occurrence of PMR was making some lifestyle changes - a little more exercise and eating healthier. Have you made any lifestyle changes or considered things that might help?