1. < Polymyalgia Rheumatica (PMR)

Can we make PMR funny ? Can we fight the immune cells involved ?

Posted by nyxygirl @nyxygirl, May 28, 2023

“When she was diagnosed with ovarian cancer in October 1986, Gilda Radner’s first thought was how she could possibly “make cancer funny,” as she wrote in her memoir (1989) “How am I going to get people to laugh about it?” What I specifically remember from her memoir was her describing attacking her cancer cells - This is easily googled and as the example provided here from John Hopkins, can be described as:
* Guided imagery. This involves thinking of a certain goal to help cope with health problems. Guided imagery is most often used as a relaxation technique. It involves sitting or lying quietly and imagining yourself in a favorite peaceful setting such as a beach, meadow, or forest. Imagery may be guided by direct suggestion from a qualified imagery practitioner. Another example where a person with cancer imagines Pac Men (from the old Pac Man video game) gobbling up bad cancer cells.

Have I tried to make PMR funny ? Yes - I work in a small biotech company and my first attempt to reassure them I would be ok was to write on the white board before my leave of absence began ( see attached)

I found the 3 wave emojis and let my team at work how easily I can put my arms over my head by using 1,2 or all 3 . There’s also a John Travolta disco dancer emoji - but no disco dancing is happening right now.

Do we know what cells we want to get rid of or how powerful the anti-IL-6R drug KEVZARA is in that fight? I haven’t broached this question yet with my Rheumatologist . My own digging suggests that research is ongoing certainly for the first question. For example, in a Denmark study in 2022, Reitsema,R et al. have investigated T cells in bursa/tenosynovial fluid and bursa tissue obtained from inflamed shoulders of patients with PMR.

I ask those in group who are now taking KEVZARA - how has the pathobiology of PMR been presented to you ? Have you been coached to imagine the drug working ?  
I hope to see many abstracts in the program of the American College of Rheumatology Mtg this November that expand our understanding of PMR.

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

teddyz | @teddyz | Jun 6, 2023
In reply to @hunib33 "In reply to @teddyz In read that PMR occurred primarily in people from Scandinavian countries, Great..." + (show)
@hunib33

In reply to @teddyz

In read that PMR occurred primarily in people from Scandinavian countries, Great Britain and Caucasians. Imagine my surprise being African American. But I didn’t cry ‘ why me’ it proves the mystery of genetics.

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Exactly. They don't have it all figures out yet.

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Teri | @tsc | Jun 6, 2023
In reply to @sandiw77 "My rheumatologist actually made my diagnosis but I honestly didn’t believe him despite my symptoms of..." + (show)
@sandiw77

My rheumatologist actually made my diagnosis but I honestly didn’t believe him despite my symptoms of sudden onset hip & shoulder pain with low grade temperatures and extreme fatigue. I was also anemic and my inflammatory markers were crazy high. I don’t have a positive family history for PMR but my 90+ year old Mom & Sister both have symptoms and are working with rheumatologist now so I will not be surprised with their diagnosis. My rheumatologist told me that he had never treated another African American patient that he had diagnosed with PMR. I wondered at the time how many diagnoses are missed because of race/ethnicity.

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Hi@sandiw77, It's often difficult for Caucasians to get a diagnosis of PMR/GCA. My mother-in-law had symptoms of GCA and an internist told her she had a virus and she'd be okay in three months. The same doctor friend that diagnosed my GCA diagnosed hers twenty years earlier.
To answer your question, there may be a startling number of diagnoses that are missed because of race and ethnicity.
Was there an injury or illness that you think triggered your PMR?

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1 reply
hunib33 | @hunib33 | Jun 6, 2023

Question: What did P say to MR?

Answer: You’re no fun, you’re stiff as a board!

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1 reply
Teri | @tsc | Jun 6, 2023
In reply to @hunib33 "Thank you for the well wishes Teri! I wish you vibrant health and healing as well..." + (show)
@hunib33

Thank you for the well wishes Teri! I wish you vibrant health and healing as well as we traverse this path.

I’m the sole survivor of my nuclear family but none of them experienced anything like this. I didn’t have an illness that preceded the onset, but I had high stress factors for years in various positions I held before I retired. I think my having PMR is just the luck of the draw. Almost everyone who lives to old age has to contend with something, and right now I’m dealing with this. I’m not sure I can control when it goes into remission. I follow all the positive recommendations to the best of my ability and think someday it may switch off as it switched on. I do practice deep breathing, and I relax more, and I sleep well now. I also take Zinc Picolinate and Vitamin C to give my immune system a boost. I’m trying to help my immune system heal.

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Hi @hunib33, PMR and GCA are considered "self-limiting" diseases that eventually burn themselves out. Let's hope! I don't push myself too hard anymore, eat healthy and exercise.
I think you have a great perspective. It is the luck of the draw. Take care.

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sandiw77 | @sandiw77 | Jun 6, 2023
In reply to @tsc "Hi@sandiw77, It's often difficult for Caucasians to get a diagnosis of PMR/GCA. My mother-in-law had symptoms..." + (show)
@tsc

Hi@sandiw77, It's often difficult for Caucasians to get a diagnosis of PMR/GCA. My mother-in-law had symptoms of GCA and an internist told her she had a virus and she'd be okay in three months. The same doctor friend that diagnosed my GCA diagnosed hers twenty years earlier.
To answer your question, there may be a startling number of diagnoses that are missed because of race and ethnicity.
Was there an injury or illness that you think triggered your PMR?

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That’s very interesting, I did not know that. Maybe they are missing a lot of diagnosis. I think we should all be thankful that we were diagnosed and got in the right line for treatment. I didn’t have an illness or prior injury but worked in Public Health Emergency Response during the pandemic so my stress was through the roof for the past several years. I ended up retiring right after I was diagnosed because I knew that my stress would still be feeding the inflammation. The treatment has not been the seamless solution that my first few months on prednisone were so I have just added Kevzara to the mix and am praying that I am going to be able to taper with fewer side effects and pain. Such an interesting discussion!
Sandi

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1 reply
Teri | @tsc | Jun 6, 2023
In reply to @sandiw77 "That’s very interesting, I did not know that. Maybe they are missing a lot of diagnosis...." + (show)
@sandiw77

That’s very interesting, I did not know that. Maybe they are missing a lot of diagnosis. I think we should all be thankful that we were diagnosed and got in the right line for treatment. I didn’t have an illness or prior injury but worked in Public Health Emergency Response during the pandemic so my stress was through the roof for the past several years. I ended up retiring right after I was diagnosed because I knew that my stress would still be feeding the inflammation. The treatment has not been the seamless solution that my first few months on prednisone were so I have just added Kevzara to the mix and am praying that I am going to be able to taper with fewer side effects and pain. Such an interesting discussion!
Sandi

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You were wise to retire, @sandiw77, I can't imagine working with PMR. When I had it, I was on jury duty. I tried to wash my hands in the courthouse lav and was not able to push the faucet mechanism down to get water. A woman beside me noticed and did it for me. It's odd to be so disabled yet look okay on the outside.
I hope the Kevzara works for you.
Teri

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1 reply
sandiw77 | @sandiw77 | Jun 6, 2023
In reply to @tsc "You were wise to retire, @sandiw77, I can't imagine working with PMR. When I had it,..." + (show)
@tsc

You were wise to retire, @sandiw77, I can't imagine working with PMR. When I had it, I was on jury duty. I tried to wash my hands in the courthouse lav and was not able to push the faucet mechanism down to get water. A woman beside me noticed and did it for me. It's odd to be so disabled yet look okay on the outside.
I hope the Kevzara works for you.
Teri

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Thanks Teri, I am very thankful that I was in a position to do it and that my husband really encouraged me to pull the trigger even though it was a few years ahead of my original timeline. Yes, I tell him (and anyone else that will listen) how grateful I am! I agree that we don’t look disabled but the pain can be unrelenting. I hope that Kevzara proves to be a reliable tool in the PMR toolbox.
Sandi

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nyxygirl | @nyxygirl | Jun 7, 2023
In reply to @hunib33 "Question: What did P say to MR? Answer: You’re no fun, you’re stiff as a board!" + (show)
@hunib33

Question: What did P say to MR?

Answer: You’re no fun, you’re stiff as a board!

Jump to this post

@hunib33 -THAT is hilarious ! Joke of the day : )

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