1. < Polymyalgia Rheumatica (PMR)

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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pacarolyn | @pacarolyn | Mar 31, 2022
In reply to @martiesowers "I have been seeing my rheumatologist every month and having labs done at every visit since..." + (show)
@martiesowers

I have been seeing my rheumatologist every month and having labs done at every visit since May of last year. Just last month I was able to skip one visit. I
am scheduled to see her again in April so I will see how it goes from here.

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Why monthly visits? Is it for labs? I usually have my PC order labs about every 4 months to check on my inflammation levels. I have a new Rheumy who ordered labs to determine if I really have PMR. Her main certain for me was GCA. So far, no need for predisone. I pray it stays that way. I highly recommend aquatic therapy. That did it for me.

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1 reply
pacarolyn | @pacarolyn | Mar 31, 2022
In reply to @tsc "Hi @jabrown0407, before I was diagnosed with PMR/GCA my blood work showed anemia - so my..." + (show)
@tsc

Hi @jabrown0407, before I was diagnosed with PMR/GCA my blood work showed anemia - so my PCP was wanting me to get a colonoscopy, a pelvic ultrasound, etc. Luckily, a good friend, an infectious disease doctor, took an interest, because I also had a mild case of Shingles, even after having the Shingrex vaccine. He reviewed my lab work, suspected PMR and GCA, and told me what blood tests to ask my PCP to order. When I had the anemia, I was very tired and could barely get through a long walk. Good luck, I hope you can find some relief.

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Strangely my labs show anemia as well. Were you given a reason for yours? I have also had a colonoscopy and pelvic ultrasounds which show nothing they can pinpoint. I was told to eat more iron rich foods.

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3 replies
martiesowers | @martiesowers | Mar 31, 2022
In reply to @pacarolyn "Why monthly visits? Is it for labs? I usually have my PC order labs about every..." + (show)
@pacarolyn

Why monthly visits? Is it for labs? I usually have my PC order labs about every 4 months to check on my inflammation levels. I have a new Rheumy who ordered labs to determine if I really have PMR. Her main certain for me was GCA. So far, no need for predisone. I pray it stays that way. I highly recommend aquatic therapy. That did it for me.

Jump to this post

It was very difficult to get my PMR under control- several flares. Only recently was able to decrease. Hopeful won’t have to go every month. When I started this journey she let me know I would be seeing her monthly until I got under control. Two months ago she added Kevzara to try snd get methylprednisolone dose lower. Very anxious to see her this month and see if the methylprednisolone can be lowered

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1 reply
jabrown0407 | @jabrown0407 | Mar 31, 2022

Please read comment from Teri to me in this thread. She sent the note like yesterday or the day before. Since then I also found a reference to it in an Oxford Online Medical book. It's apparently real PMR can cause anemia in some people. I saw a slew of doctors, none knew. I even had bone marrow biopsy in addition to to what you mentioned plus about 25 blood tests for things like Lyme disease.

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jabrown0407 | @jabrown0407 | Mar 31, 2022
In reply to @pacarolyn "Strangely my labs show anemia as well. Were you given a reason for yours? I have..." + (show)
@pacarolyn

Strangely my labs show anemia as well. Were you given a reason for yours? I have also had a colonoscopy and pelvic ultrasounds which show nothing they can pinpoint. I was told to eat more iron rich foods.

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@pacarolyn Please ask your doctor to have a Ferritin panel run. I suspect you are not iron deficient. Careful about getting too much iron, it can be dangerous.

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1 reply
Teri | @tsc | Mar 31, 2022
In reply to @pacarolyn "Strangely my labs show anemia as well. Were you given a reason for yours? I have..." + (show)
@pacarolyn

Strangely my labs show anemia as well. Were you given a reason for yours? I have also had a colonoscopy and pelvic ultrasounds which show nothing they can pinpoint. I was told to eat more iron rich foods.

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I had anemia, but it resolved when I started taking prednisone. It's sometimes called anemia of chronic inflammation. "Normocytic, normochromic anemia and thrombocytosis occur in approximately 50% of pateients with these disorders [PMR and GCA] and are excellent guides to the state of inflammation." Source – Cecil and Goldman's Textbook of Medicine.

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Teri | @tsc | Mar 31, 2022
In reply to @linda7 "In my case I came up with the PMR diagnosis through extensive internet research. I went..." + (show)
@linda7

In my case I came up with the PMR diagnosis through extensive internet research. I went through one disease after another and when I read the description of PMR I said "Bingo". In order not to offend the doctor (who had diagnosed me with something else) I didn't tell her what I had, just presented my relevant symptoms. She immediately said, "You have PMR". Unfortunately, I expect to have to do this for any medical problem I develop for the rest of my life. If I lose enough brain power that I can't do the research I'm sunk. Doctors don't have enough time for complex problems and are too distracted by the overload of information on their computers.

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I go into see my doctors "armed for bear." I don't take their heads off or anything like that but I'm ready to update them on my condition, my meds, etc. because I realized after seeing them a while that even the good ones rarely update themselves by reading charts before appointments.

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pacarolyn | @pacarolyn | Mar 31, 2022
In reply to @tsc "I had anemia, but it resolved when I started taking prednisone. It's sometimes called anemia of..." + (show)
@tsc

I had anemia, but it resolved when I started taking prednisone. It's sometimes called anemia of chronic inflammation. "Normocytic, normochromic anemia and thrombocytosis occur in approximately 50% of pateients with these disorders [PMR and GCA] and are excellent guides to the state of inflammation." Source – Cecil and Goldman's Textbook of Medicine.

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Thank you. This was very helpful, Will discuss with my PC and Rheumy.

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pacarolyn | @pacarolyn | Mar 31, 2022
In reply to @jabrown0407 "@pacarolyn Please ask your doctor to have a Ferritin panel run. I suspect you are not..." + (show)
@jabrown0407

@pacarolyn Please ask your doctor to have a Ferritin panel run. I suspect you are not iron deficient. Careful about getting too much iron, it can be dangerous.

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Thanks. Will do.

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pacarolyn | @pacarolyn | Mar 31, 2022
In reply to @martiesowers "It was very difficult to get my PMR under control- several flares. Only recently was able..." + (show)
@martiesowers

It was very difficult to get my PMR under control- several flares. Only recently was able to decrease. Hopeful won’t have to go every month. When I started this journey she let me know I would be seeing her monthly until I got under control. Two months ago she added Kevzara to try snd get methylprednisolone dose lower. Very anxious to see her this month and see if the methylprednisolone can be lowered

Jump to this post

I hope all goes well. Decrease is what we all hope for. I will get labs this month as well. Hoping CRP and SED are lower.

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