1. < Polymyalgia Rheumatica (PMR)

Is progress being made in understanding PMR/GCA?

Posted by DadCue @dadcue, Sep 15 10:15am

The following link is excellent in my opinion. It is somewhat technical but mostly understandable.
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2023.1202160/full
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There are many misconceptions about how PMR is diagnosed based on inflammation markers and a fast response to Prednisone. The ideas that Prednisone is the only option for PMR/GCA and the safety of long term use of Prednisone are also dubious.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

DadCue | @dadcue | Sep 20 3:51pm
In reply to @csm70 "Thanks for the response. Do you know which markers are being used to monitor inflammation?... Based..." + (show)
@csm70

Thanks for the response. Do you know which markers are being used to monitor inflammation?... Based on what I read about Actemra the usual ESR and CRP bio markers are not reliable readings as Actemra inhibits IL-6 receptors. Is your rheumatologist using a different set of bio markers to monitor progress?... I am starting this process and any feedback is appreciated.

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C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR) levels are "monitored" when a person is on Actemra (tocilizumab). When a person is on Actemra a doctor would expect a lower CRP and ESR. If your CRP and ESR aren't lower than there might be a problem.

My CRP and ESR were "negligible" when I was doing Actemra infusions every 4 weeks. When I didn't have an Actemra infusion for 7 weeks my ESR and CRP were elevated prior to my infusion at 7 weeks. My rheumatolgist used that as an indication that 7 weeks was too long of a time between my infusions. I denied any infection or any other reason to explain the jump in my ESR and CRP levels so it was a "significant change."

CRP and ESR are subject to interpretation based on the entire "clinical picture." Clinically, my rheumatologist said it "looked like" I wasn't doing as well after 7 weeks without an Actemra infusion.

I think the reliability of these acute phase reactants have to be evaluated considering a person is on Actemra. For example a person might present with symptoms of a serious infection. An infection shouldn't be ruled out based on a low CRP and ESR because they are on Actemra.

I don't think CRP and ESR are ever reliable measures of "disease activity" for people with PMR/GCA. Some people have active symptoms of PMR/GCA without having elevated ESR and CRP levels. Prednisone also has an effect on CRP and ESR levels.

REPLY
pmrsuzie | @pmrsuzie | Sep 22 2:50am
In reply to @dadcue "My grandmother on my mom's side probably had PMR. As a boy, I remember helping her..." + (show)
@dadcue

My grandmother on my mom's side probably had PMR. As a boy, I remember helping her out of her rocking chair. She was very active until she suddenly couldn't do very much. I remember her saying all the time that it was no fun getting old. She didn't take many medications but I vaguely recall her taking "little white pills." She also took 3 or 4 naps every day.

She died in the hospital but nobody did anything. They said there was nothing they could do. She didn't seem to have any pain like she had before going into the hospital. She looked comfortable so that was a blessing.

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My grandmother took "little white pills"----Humphreys
The pills came in vials and there were different numbers No. one, No.fourteen, No. twenty-three etc. depending on your symptoms.
I inherited her books including the "Humphreys' Mentor and Medical Advisor". Maybe not the same white pills but I definitely remember her taking them.
Dr Humphreys lived in the 1800's, homeopathic, herbal medicine.
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