New to PMR - Are Monthly Labs and Check-ups normal?

I was diagnosed in 2020 with PMR by my family doctor. He treated me for a time, changing my dose weekly. Told him repeatedly I did not want to be on Prednisone for a long time, to which it appeared he turned a deaf ear.
Next went to a Rheumatologist with almost the same treatment, except monthly changes and an insistence on splitting the does in half and taking morning and evening. I told the doc I wanted off and so I gradually reduced the dose to 3 or 4 mg/day. I could not operate like that, so back on at 10 or 15mg and taper down at 1mg/month. Seems that is all I have been doing. Finally in May I said I am not dropping for the summer, I want to feel good enough to do things. Prednisone has given me thin skin. My arms have blotches all over. A slight bump or brush and my skin is ripped and I am bleeding. Finally at my insistence for something else, I am being evaluated for methotrexate. Looking for experiences others have had with PMR. The two markers I get tested get tested for every two months, CRP and Sed Rate, almost never reflect my pain/discomfort level. The only time those results were high is when I was first diagnosed. I think it a waste of time even doing them.

How often does your doctor do bloodwork to check on your inflammation markers for PMR? Any other bloodwork you have done specific to the PMR?

I was diagnosed in 2020 with PMR by my family doctor. He treated me for a time, changing my dose weekly. Told him repeatedly I did not want to be on Prednisone for a long time, to which it appeared he turned a deaf ear.
Next went to a Rheumatologist with almost the same treatment, except monthly changes and an insistence on splitting the does in half and taking morning and evening. I told the doc I wanted off and so I gradually reduced the dose to 3 or 4 mg/day. I could not operate like that, so back on at 10 or 15mg and taper down at 1mg/month. Seems that is all I have been doing. Finally in May I said I am not dropping for the summer, I want to feel good enough to do things. Prednisone has given me thin skin. My arms have blotches all over. A slight bump or brush and my skin is ripped and I am bleeding. Finally at my insistence for something else, I am being evaluated for methotrexate. Looking for experiences others have had with PMR. The two markers I get tested get tested for every two months, CRP and Sed Rate, almost never reflect my pain/discomfort level. The only time those results were high is when I was first diagnosed. I think it a waste of time even doing them.

@chzuck as @razhuny and @kipster have said, prednisone has to be tapered over a period of months. My husband went through eighteen months of tapering till he could get off it. It’s a protocol that needs to be followed. If you don’t, your PMR will keep coming back with a vengeance!

How often does your doctor do bloodwork to check on your inflammation markers for PMR? Any other bloodwork you have done specific to the PMR?

@cj762
My initial blood work 10 month ago was Arthritis panel, ESR and CRP, Creatine Kinase, Magnesium, TSH (Thyroid), CBC and Comprehensive Metabolic panel. Since then, I had CRP and ESR redone 6 months ago (still negative).
Then I got a Rheumatology appointment last month and they did the following blood work:
- Rhematoid factor screen
- Anti Neutrophil Cytoplasmic Antibody ANCA
- Extractable Nuclear Antigen Antibodies
- CCP IGG/IGA
- Sjorgrens Antibodies SSB
- Sjorgrens Antibodies SSA
- Anti Proteinase 3 Antibody
- Anti Myeloperoxidase Antibody IGG
- Aldolase
- Myositis panel
- Double Stranded DNA Antibody
- High resolution Protein Electrophoresis Panel
- Anti-Thyroid Peroxidase Antibody
- Anti-Nuclear Antibodies (ANA)

And after all that, because CRP and ESR were normal,
I was still was diagnosed as Seronegative PMR because 15mg prednisone
make me able to walk stairs and be able to function during the day.

@tsesow All I know is my new doc has done far far more testing than my previous doc and I am off Prednisone I do not have anymore pain. On the downside, Prednisone already did the damage. I have stress fractures in the T11, T12 and L1 area. The last visit more testing of which I do not have the results.

@rashida Long time since I updated my story. There seems to be varying opinions on how to taper. The Rheumatolgist I just fired had me taper 1/2mg/mo. My current one said drop 1mg, then a week later stop completely. I have been prednisone free since April 2. Now a little more info is needed for the statement above.
I started researching on my own and learned PMR is usually hips and shoulders. I was telling my fired Rheumatoligist that my legs hurt so when doing the trim mowing around my house and that when I got completely around, it seemed that my legs were done and could not go anymore. That is when she put me on Methotrexate and when I did not get any improvement, Hydroxychloroquine. I was on that a month or two with no improvement that I told her about my research findings. She had me get off one then the other. My leg pain was coming from issues in my back. I had talked to others about their PMR and they would tell me that when it hit them they could not move because of pain. I never had that. My primary care doctor diagnosed PMR when I went to him with pain in my left should when I would reach above my head. Personally I don't think I had PMR, but an arthritis flareup. I can reach above my head without pain. One really needs to do the research on whatever medical issue you have. Be informed!