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

Posted by abbeyc @abbeyc, Mar 28, 2022

Hello, I am kind of new. 3 months with PMR but I am wondering how everyone is dealing with their doctors. So far my Rheumatologist is saying I need to see him once per month for labs and then check-up/medication recommendations (starting to taper). This will get very expensive with monthly doctor visits for what I understand will be YEARS of PMR. Is everyone doing this? or managing somehow on their own? But we need to the docs to write the prescriptions obviously.

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I was diagnosed with PMR in April. This is my Rheumy's plan. Labs each month before office visits and tapering 1 mg a month. Hoping the plan works.

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I was diagnosed 9/24/21 by my PCP, blood work did not show elevated levels but every joint felt like it was under attack, sleep was impossible and I was put on 40 MG Prednisone which brought relief within hours. Then referred to Rheumatologist who I finally met with 2/28/22 and have not seen since. He and I communicate via “Patient Gateway” MGH’s communication system. Since my initial diagnoses I have been slowly reducing Prednisone and currently on 4.5MG (2.5MG AM and 2MG PM) Visits and testing have not been discussed both the Rheumatologist PCP and me are happy with my progress. I do experience mild neck soreness in the AM that reduces with activity but this has remained the same with each step in the reduction. I am so thankful for this site which showed me that this is a journey and I need to listen to my body carefully.

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@sashakay

Thank you for your post. I am in a similar situation. Reduced to 4 mg 2 weeks ago (CRP 2.7 !) and a few days ago went down into a huge mood shift. Restlessness, shift between depersonalization and crying jags. No pain. Hoping this is my body adjusting to my own cortisol waking up. Would appreciate any feedback.

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Oh yes...your adrenals waking up. That process can take awhile. The good news is that you are not experiencing pain which may mean your PMR is gone. Hang in there.

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@sashakay

Thank you for your post. I am in a similar situation. Reduced to 4 mg 2 weeks ago (CRP 2.7 !) and a few days ago went down into a huge mood shift. Restlessness, shift between depersonalization and crying jags. No pain. Hoping this is my body adjusting to my own cortisol waking up. Would appreciate any feedback.

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@kmeikle1

Oh yes...your adrenals waking up. That process can take awhile. The good news is that you are not experiencing pain which may mean your PMR is gone. Hang in there.

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Thank you for your response. I was wondering also if the Sertraline I have been taking for a few years has pooped out….feeling s of panic and isolation coming up.
Meeting with my pharmacist next to have a consult re meds and my current status.

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My rheumatologist has me do labs every e or four months. Is there a possibility your doctor will agree to phone visits or email check-ups instead of an in office visit every month? If you disclose your concerns regarding the cost, perhaps your provider will agree to other options.
Best of luck on this journey.

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I have been going to doc at least every two weeks for blood draws and discussion of initial x-ray, dosage, MRI. PMR has resulted in bone marrow edema, which enlarged the right top of my sternum and effusion of the flesh surrounding it. No pain, but some tightness. My last sed test was 28%. First one 129%. So steroids working. The worst symptom for now is that nothing tastes good or right.

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@papas

I was diagnosed 9/24/21 by my PCP, blood work did not show elevated levels but every joint felt like it was under attack, sleep was impossible and I was put on 40 MG Prednisone which brought relief within hours. Then referred to Rheumatologist who I finally met with 2/28/22 and have not seen since. He and I communicate via “Patient Gateway” MGH’s communication system. Since my initial diagnoses I have been slowly reducing Prednisone and currently on 4.5MG (2.5MG AM and 2MG PM) Visits and testing have not been discussed both the Rheumatologist PCP and me are happy with my progress. I do experience mild neck soreness in the AM that reduces with activity but this has remained the same with each step in the reduction. I am so thankful for this site which showed me that this is a journey and I need to listen to my body carefully.

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Note I used to split my dose of prednisone, but one rheumatologist told me that was not wise because your adrenal glands need to rest (I think that's what she said). Anyway, I now just take it late morning so it doesn't affect my sleep as much.

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Since my inflammatory markers were never elevated, I only saw my rheumy about every 6 months.

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I only see my rheumy every 5 months or so but have bloodwork monthly and if my CRP suddenly elevates he calls me to discuss adjusting prednisone as does my GP. Had to double from 5 to 10 mg. due to a severe flare-up and now reducing by a half mg. every 3 weeks.

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