1. < Polymyalgia Rheumatica (PMR)
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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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chzuck | @chzuck | 4 days ago
In reply to @pmrnew "@chzuck @rashida What took me months to realize is PMR doesn't come back, it never left...." + (show)
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@chzuck @rashida
What took me months to realize is PMR doesn't come back, it never left. Tapering Prednisone issues seem to depend on the dosage and importantly the length of time on P. It has it's own issues and tapering should look to how inhibited the adrenal glands have gotten. PMR (seems from all these comments) might burn itself out after 2 or so years. If tapering P gives you NO issues, then at some low P dosage, it will no longer mask the PMR pain. PMR that had never left. I am no doc and reading comments here has helped me tremendously. @dadcue has really taken time to explain things how he has experienced this. Once I read all and all other, comments, I realized whey tapering had gone with ZERO issues, then the pain came back. My P dosage was too low to mask the pain. Hope this helps.

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@pmrnew I truly doubt I had PMR, I think it was arthritis in my shoulder and my family doctor mis diagnosed it and the rheumatology doctor I went to followed suit. If I had not talked to others who have PMR and learned how it started with them and did research on PMR, I would still be on P at a weaning of 1/2mg/month. My new rheumatologist has been much more thorough in the testing he has done. One needs to educated themselves!

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noti | @noti | 4 days ago

Once I started prednisone, after establishing that I had PMR, no one ever suggested that I repeat my labs. My PCP was on sabbatical with her husband when I first came down with PMR,so I only saw an NP and a PA in the beginning, one or two visits and maybe one or two calls. After that, I just communicated by text through the patient portal. Once my PCP returned, she almost immediately announced that she was leaving. I was not able to get a new PCP for another 6 months but still had access to help if I needed it. I did not have an especially easy time tapering, but for the most part, I was able to stick with the schedule. By the time I actually met my new PCP (who was assigned to me, I was given no choice in the process). I was probably at around 2 mg of prednisone. He immediately asked me if I wanted a rheumatologist, since he believed that after a year of prednisone, it was important to get off of it. Since I was leery about starting a new medication that the rheumatologist might want to just keep me on indefinitely, and since I was so close to 0 mg, I asked if I could just try to finish the prednisone taper. The last taper was the worst taper, and going all the way to zero was worse than that. But I have adjusted enough that I just need to take Tylenol at a hopefully safe dose,and can function pretty normally. I’ve been off of prednisone for about 10 months and don’t anticipate ever going back on it. Knock on wood. I can’t pretend to feel normal, but I’m OK.
Everybody’s journey is different, best of luck with yours.

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chzuck | @chzuck | 4 days ago
In reply to @noti "Once I started prednisone, after establishing that I had PMR, no one ever suggested that I..." + (show)
Profile picture for noti @noti

Once I started prednisone, after establishing that I had PMR, no one ever suggested that I repeat my labs. My PCP was on sabbatical with her husband when I first came down with PMR,so I only saw an NP and a PA in the beginning, one or two visits and maybe one or two calls. After that, I just communicated by text through the patient portal. Once my PCP returned, she almost immediately announced that she was leaving. I was not able to get a new PCP for another 6 months but still had access to help if I needed it. I did not have an especially easy time tapering, but for the most part, I was able to stick with the schedule. By the time I actually met my new PCP (who was assigned to me, I was given no choice in the process). I was probably at around 2 mg of prednisone. He immediately asked me if I wanted a rheumatologist, since he believed that after a year of prednisone, it was important to get off of it. Since I was leery about starting a new medication that the rheumatologist might want to just keep me on indefinitely, and since I was so close to 0 mg, I asked if I could just try to finish the prednisone taper. The last taper was the worst taper, and going all the way to zero was worse than that. But I have adjusted enough that I just need to take Tylenol at a hopefully safe dose,and can function pretty normally. I’ve been off of prednisone for about 10 months and don’t anticipate ever going back on it. Knock on wood. I can’t pretend to feel normal, but I’m OK.
Everybody’s journey is different, best of luck with yours.

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@noti You,re so right, everyone is different. If I am no satisfied with a doctor, I find another. I have had 4 ENT doctors and I am not entirely happy with the current and have been looking for another. Too many doctors know how they are going to treat you before they walk in the door.

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