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.

Will PMR go away or resolve on its own with no treatment?

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There are some good papers on the pathology, treatment, and biomarkers, and these can be extremely helpful. The question of what triggers PMR is apparently unanswered.

The same author of the paper @dadcue found also has another paper on the pathology of PMR, published in 2020
https://www.sciencedirect.com/science/article/abs/pii/S1568997220302457
There is a good summary of the research as of 2022 for Giant Cell Arteritis at this link:
https://www.mdpi.com/2077-0383/11/10/2905
A video presentation of the same material is here, albeit with a heavy French accent


This 2nd group of materials are from a group in Dijon, France that apparently focuses on these subjects.

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@nancy334

Will PMR go away or resolve on its own with no treatment?

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Good question, I've never heard of PMR going away on it's own with no type of treatment but I'm not sure it hasn't gone away for someone else with no treatment. I foolishly let my first flareup of PMR go without treatment for almost 4 months just because I didn't want to go to see a specialist until the following January when my new insurance would kick in. That's why it's really good for everyone to be their own advocate and learn as much as they can about the condition, how it's diagnosed and what treatments are available that help. The members here on Connect are great at sharing their combined knowledge and evidence based references.

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@nancy334

Will PMR go away or resolve on its own with no treatment?

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Supposedly that was what happened before the Prednisone era of treating PMR. I pity the people who had to tolerate the pain and wait for PMR to burn itself out without prednisone.

Prednisone helps to ease the pain but we still need to wait until PMR burns itself out. Unfortunately, Prednisone causes adrenal suppression so people need to taper off slowly and have to take Prednisone for a long time. Many people are never able to taper off Prednisone no matter how slowly they taper.

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@dadcue

Supposedly that was what happened before the Prednisone era of treating PMR. I pity the people who had to tolerate the pain and wait for PMR to burn itself out without prednisone.

Prednisone helps to ease the pain but we still need to wait until PMR burns itself out. Unfortunately, Prednisone causes adrenal suppression so people need to taper off slowly and have to take Prednisone for a long time. Many people are never able to taper off Prednisone no matter how slowly they taper.

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Thank you …that is very helpful

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@redboat

There are some good papers on the pathology, treatment, and biomarkers, and these can be extremely helpful. The question of what triggers PMR is apparently unanswered.

The same author of the paper @dadcue found also has another paper on the pathology of PMR, published in 2020
https://www.sciencedirect.com/science/article/abs/pii/S1568997220302457
There is a good summary of the research as of 2022 for Giant Cell Arteritis at this link:
https://www.mdpi.com/2077-0383/11/10/2905
A video presentation of the same material is here, albeit with a heavy French accent


This 2nd group of materials are from a group in Dijon, France that apparently focuses on these subjects.

Jump to this post

It really is an exciting "new age" in PMR/GCA research. Five years ago, my rheumatolgist wasn't overly confident about Actemra but said it may be my best chance of ever getting off prednisone.

I remember when I posted a question on another forum about treating PMR with Actemra. The forum itself with people who shared their personal experiences was great. The self proclaimed "experts" on the forum said my rheumatologist wasn't very intelligent and lacked some basic understanding that Prednisone was the "only option." Then the experts made sure I was booted off that forum because Actemra wasn't pertinent to them after I reported Actemra was working for me.

I still wish to know if and when I will ever get off Actemra. My rheumatologist is doubtful because of how the immune system is able to remember what it attacks chronically. The immune system memory is detrimental when a person has an autoimmune condition.

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@dadcue

It really is an exciting "new age" in PMR/GCA research. Five years ago, my rheumatolgist wasn't overly confident about Actemra but said it may be my best chance of ever getting off prednisone.

I remember when I posted a question on another forum about treating PMR with Actemra. The forum itself with people who shared their personal experiences was great. The self proclaimed "experts" on the forum said my rheumatologist wasn't very intelligent and lacked some basic understanding that Prednisone was the "only option." Then the experts made sure I was booted off that forum because Actemra wasn't pertinent to them after I reported Actemra was working for me.

I still wish to know if and when I will ever get off Actemra. My rheumatologist is doubtful because of how the immune system is able to remember what it attacks chronically. The immune system memory is detrimental when a person has an autoimmune condition.

Jump to this post

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@dadcue

Supposedly that was what happened before the Prednisone era of treating PMR. I pity the people who had to tolerate the pain and wait for PMR to burn itself out without prednisone.

Prednisone helps to ease the pain but we still need to wait until PMR burns itself out. Unfortunately, Prednisone causes adrenal suppression so people need to taper off slowly and have to take Prednisone for a long time. Many people are never able to taper off Prednisone no matter how slowly they taper.

Jump to this post

I believe my mother and her mother also had PMR judging by the symptoms. In the 1980s my mother was able to get prednisone, recover and live another 40 years with no relapses. Her mother, with no prednisone available, suffered the rest of her life and developed what I believe to be GCA. They didn’t have the terminology back then and called it bursitis. I did not connect the dots until I was diagnosed after suffering for 4 months.

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@54pontiac

I believe my mother and her mother also had PMR judging by the symptoms. In the 1980s my mother was able to get prednisone, recover and live another 40 years with no relapses. Her mother, with no prednisone available, suffered the rest of her life and developed what I believe to be GCA. They didn’t have the terminology back then and called it bursitis. I did not connect the dots until I was diagnosed after suffering for 4 months.

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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 symptoms are all consistent with PMR. Ditto for inflammation markers. My pain and other symptoms were alleviated within 3 hours of my first dose of Prednisone and I continued to feel great with no breakthrough pain until I reached a certain point in attempts to taper off Prednisone. So, to my way of thinking, in the unlikely event that I don't really have PMR and have some other unspecified disease instead....what difference does it make?

My eyes have been horribly bloody and red rimmed since shortly after starting Prednisone. My vision is getting worse all the time. I've been to three ophthalmologists and none of them knew what to do about it. One thought it was blepharitis. Trust me, as a nurse of 40+ years, it was not blepharitis. Now both eyes are sore and painful. I have another appointment with another ophthalmologist Thursday.

I'm down to 5 mg a day in my latest attempt to taper and honestly, am starting to think it's not worth it. I feel awful---exhausted and sleepy all the time and my pain and stiffness almost as bad as pre-Prednisone. Any of you who have tapered all the way to zero, is this normal? Is there some point where the exhaustion and pain goes away? I had a little pain at 7 mg but 6 kicked my booty and 5 is even worse. I'm wondering if being on Prednisone is the lesser of two evils?

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