How many of you are on your second flare-up?

My spouse who is 84 was diagnosed with PMR in November of 2022. He stared on 15mg of prednisone. He tapered off in mid May. He was symptom free for about 10 days. Mild symptoms returned and he went back on 5mg, then 10 mg for 10 days. When he was down to 2.5 mg in July, mild pain began to return. We went back up to 5mg then and are now down to 1mg daily with absolutely no symptoms. This week he had SED and CRP tests that were still mildly elevated even though he has no symptoms. SED is 27 and CRP is 0.96. We are staying on 1mg for a couple more weeks and then repeating the labs. Do inflammatory markers always return to normal, if you are in complete remission from PMR.

Welcome @mountainbikergirl, That's a good question but I'm not sure there is a clear answer. I do know that you can have PMR and also have normal SED and CRP levels.

"Can you have polymyalgia with a normal ESR and CRP?
The diagnosis of PMR is possible, even if ESR and CRP have not increased. US and 18-FDG PET/CT evaluations might increase diagnostic rates of ESR and CRP negative PMR. A rigorous diagnostic work-up and a long follow-up (one year, as minimum) are mandatory to avoid mistakes."
--- Polymyalgia Rheumatica (PMR) with Normal Values of Both Erythrocyte Sedimentation Rate (ESR) and C-Reactive Protein (CRP) Concentration at the Time of Diagnosis in a Centenarian Man: A Case Report: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313638/.

I do think that tapering off of prednisone slowly is key to remission. My first time took 3 and half years, second time took 1 and half years to taper off. What helped me the second time around was making a few lifestyle changes, eating healthier, less sugar and inflammatory foods along with a little more exercise. There is another discussion which might be helpful:
--- PMR Diet: Foods to eat and avoid: https://connect.mayoclinic.org/discussion/diet-and-pmr/.

Does your husband keep a daily log to track his level of pain and dose of prednisone?

I have decided not to go back on Prednisone. I am working it out, trying a few different things to work through the pain. So far so good! I will keep you posted. Thank you for all your support.

I had multiple flare-ups over the 12 years I was diagnosed with PMR. I'm still diagnosed with PMR but being treated with a biologic that actually "stops PMR inflammation" rather than "manages the inflammation" as prednisone does. It still isn't known if I'm in remission or not because when the biologic is stopped my symptoms gradually return in a few months

The difference now is that as long as I keep taking the biologic I have no symptoms. When I was on prednisone, I always needed to take enough prednisone each and every day to be symptom free.

I can now discontinue the biologic at any time. My symptoms don't return immediately or in a matter of a few days like when I was taking prednisone. Now it takes a few months for my symptoms to return. I do a monthly infusion of Actemra (tocilizumab) and I'm good to go for another month.

With prednisone, I needed to decide daily how much prednisone to take. Sometimes my need for more prednisone changed by the minute depended of what happened in my life. There was a smaller margin for error and I paid the price when I didn't take enough prednisone.

All inflammation isn't the same. There are different cytokines and different inflammatory mechanisms. I believe the mechanism and the IL-6 cytokine is being controlled and regulated better than it was.

I keep a daily log of his prednisone dosage for him. He has had no pain since August 1st.

Hello.
Just went thru the second round flare up. DX Feb 2023. Had to stay on 20mg for first month. Was down to 5mg in Sept. when a mild to moderate change in temperature (cooler than usual) started a gradual flare that I thought would reverse itself because I had similar symptoms on occasion when weaning down. It got worse. 8mg wouldn't completely resolve the pain. Went up to 15mg x 10 days and ok now. Started down now on 10mg. We'll see how it goes. Relatively speaking I guess I'm kinda new at all of this. I'm concerned about how to get thru the winter months here in Calif. Lost ten pounds in Feb. when it all started. Can't imagine how I could even come close to tolerating an even colder climate. With regard to your question, I think , for me, the possibility of being weaned too quickly should be something to consider. Each time my Prednisone is titrated down, it feels like the PMR is knocking at the door. Hope you have better outcomes and get to full recovery.

Welcome @lungranger77, Tapering prednisone doses can be really challenging at times. I think a lot of times we don't listen to our bodies or our doctors push us to taper too fast. You might find the following discussion helpful for your PMR journey.

--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

I have had PMR 15 times over 30 years. My blood work has always been normal.