Ongoing pain with normal CRP and ESR - PMR?

Hello @sue16833, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. You will notice that we changed the title of your discussion a little to better describe your question and hopefully bring more members into your discussion to share their experience.

I have had two occurrences of PMR and lived with a little pain while tapering off of prednisone. I kept a daily log of my prednisone dosage and a pain scale of how I was feeling when I got up in the morning. When it was time to taper to the next lower dose I would do it if my pain level was a 1 or 2 on a scale of 1 to 10. I still have normal aches and pains like yours and have my CRP and ESR levels checked annually and they are usually in the normal range. Here are a couple of articles that provide a little more information on the tests and meaning.

-- Erythrocyte Sedimentation Rate and C-Reactive Protein: Old But Useful Biomarkers for Pain Treatment: https://www.practicalpainmanagement.com/treatments/erythrocyte-sedimentation-rate-c-reactive-protein-old-useful-biomarkers-pain-treatment
-- 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/

How long has it been since you were diagnosed with PMR and started on prednisone?

Thank you for your response. Before I found this format, I was at a loss to connect with others that had this disease. I was diagnosed the end of September, 2020. I started prednisone soon after my diagnosis. With the onset of PMR in September within 48 hours I was unable to go up stairs, open doors, it was quite an awakening of how much pain one can tolerate. I'm grateful for prednisone. However, the thought of a reoccurrence is terrifying. Is it true that one has a reoccurrence within six years on average? Again, thank you, I will read the articles.

@sue16833 - Reoccurrence is common but each of us are different and no one really knows. I have a good friend about my age that was diagnosed about the same time as myself in 2006-2007 and he was able to get off of prednisone within a year and has not had another occurrence of PMR. I took 3-1/2 years to taper off the first time and it came back for me 6 years later in mid 2016. I was able to taper off in about 1-1/2 years the second time but I had made some lifestyle changes and was eating healthier and exercising more which I think helped me a lot.

Good luck on tapering and remember it's better to taper slowly.

How much prednisone were you on?

@654321 if your question was for me, I started both occurrences of PMR at 20 mg prednisone.

I started with 20mg of prednisone and am currently on 3mg for a week.

It is so hard to be on isn t it? I am down to two but don t have pain.

Yes, being on prednisone and trying to taper off can be pretty awful. You just have to take it slow and easy and listen to your body while tapering off. I chose to live with a little aches and pain but if it got too bad (above a 2 level for me) then I didn't taper to the next lower dose until I felt better.

That is wonderful to have made it to that low of a dosage. I am so looking forward to getting the Covid-19 vaccine. My doctor wants me to wait until I'm totally off of the prednisone and then get the J&J vaccine, she feels an adenovirus would be better choice, because it is one immune response vs two reactions.

I took the Pfizer and had no reactions . Was so excited . The dr wanted me to go ahead