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.

nyxygirl | @nyxygirl | Jun 5, 2023

Here is a good laugh for this week : @walkamok replied to me that his two-axis excel file of PAIN vs Prednisone dosing could also include :
".....additional columns of possibly relevant 😉 data suggest themselves for plotting on the same axes:
Hours of manual labor performed
Malted beverages consumed
Ounces of ice cream eaten after 9 PM
Hours spent researching PMR"

Perhaps I can top that by sharing this: I got my PCP to crack a smile by saying that pre-Dx , when I woke with the weird -shoulder-stiffness I was walking around the house draped in ice packs and realized that wasn't going to work when all of them almost fell in the toilet !! " THAT said - I did and still use a Camphor/Menthol Cream ( Cause+Medic hemp pain creme) on my shoulders- the coolness it imparts was/is very soothing feeling and it helped to get me moving around in the morning ! Cheers to all : )

REPLY
teddyz | @teddyz | Jun 1, 2023
In reply to @tsc "Hi @teddyz and @nyxgirl, "These disorders occur primarily in patients older than 50..., in women more..." + (show)
@tsc

Hi @teddyz and @nyxgirl,
"These disorders occur primarily in patients older than 50..., in women more than men; they are propagated by antigen-driven, cell mediated immune mechanisms that may be associated
with specific genetic markers...
...the highest rates occurring in Scandanavian countries." (Cecil and Goldman's Textbook of Medicine, Chapter on Giant Cell Arteritis and Polymyalgia Rheumatica).

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Thanks Teri. I have heard my hypothyroidism is also higher in those of us from Scandinavian countries

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Teri | @tsc | Jun 1, 2023
In reply to @teddyz "This is the first I've heard of the genetic markers." + (show)
@teddyz

This is the first I've heard of the genetic markers.

Jump to this post

Hi @teddyz and @nyxgirl,
"These disorders occur primarily in patients older than 50..., in women more than men; they are propagated by antigen-driven, cell mediated immune mechanisms that may be associated
with specific genetic markers...
...the highest rates occurring in Scandanavian countries." (Cecil and Goldman's Textbook of Medicine, Chapter on Giant Cell Arteritis and Polymyalgia Rheumatica).

REPLY
1 reply
nyxygirl | @nyxygirl | May 31, 2023
In reply to @teddyz "This is the first I've heard of the genetic markers." + (show)
@teddyz

This is the first I've heard of the genetic markers.

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same here @teddyz unless @tsc is referring to HLA DR4 ? or something else ? do tell !

REPLY
teddyz | @teddyz | May 31, 2023
In reply to @tsc "Hi @nyxgirl, I had symptoms of PMR and other strange symptoms for over a year until..." + (show)
@tsc

Hi @nyxgirl, I had symptoms of PMR and other strange symptoms for over a year until diagnosed with Giant Cell Arteritis. I took 40 mg prednisone a day, tapering down by 5 mg every two weeks. After a year and four months, I went off prednisone. That was about eight months ago. I'm symptom free now, no more Tin Man (poor thing) or stealthy stabbing pains in the face, thankfully. What about you? What's your story?
By the way, there are genetic markers for PMR and GCA. My maternal aunt had it, and my mother-in-law. For a relatively rare disorder, I knew about it for years!

Jump to this post

This is the first I've heard of the genetic markers.

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2 replies
teddyz | @teddyz | May 31, 2023
In reply to @nyxygirl "@tsc wow - that is classic !! I also told someone - "remember what Bill Murray..." + (show)
@nyxygirl

@tsc wow - that is classic !! I also told someone - "remember what Bill Murray looks like on the zillionth day of waking up in Ground Hog Day ? " @johnbishop -this is a great reference for all to see:
“An Impediment to Living Life”: Why and How Should We Measure Stiffness in Polymyalgia Rheumatica?
Sarah Louise Mackie, first author - all from Great Britain.

I guess jumpers are pajamas ? NO reference to Ground Hog Day from the participants !

"'I probably just started off with a general sort of ache, a stiffness. Um because I always used to go to quite a lot of classes, sort of aerobics and things, and when I came back I wasn’t sort of recovering quite as well. You know, I always ached a bit when I came back, but I was aching a lot more, really stiff. Um and I just thought, “Oh it’s me age, I’ll just sort of work through it.” But then sort of like three months on, like you, it was sort of in bed and just—just agony, just really stiff, I couldn’t sort of get me jumpers on or anything without help.” [L/1/F/88-97]""

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Before I was diagnosed I asked my sister and my friend who exercise a lot if they were sore for 3 days after exercising like I was. They both laughed at me and said I needed to exercise more often. Jokes on them! PMR was the culprit! Now I can exercise without feeling miserable.

REPLY
Teri | @tsc | May 31, 2023
In reply to @nyxygirl "@tsc - It's Ground Hog Day !!! Are you at a better place now - sure..." + (show)
@nyxygirl

@tsc - It's Ground Hog Day !!! Are you at a better place now - sure hope so !

Jump to this post

Hi @nyxgirl, I had symptoms of PMR and other strange symptoms for over a year until diagnosed with Giant Cell Arteritis. I took 40 mg prednisone a day, tapering down by 5 mg every two weeks. After a year and four months, I went off prednisone. That was about eight months ago. I'm symptom free now, no more Tin Man (poor thing) or stealthy stabbing pains in the face, thankfully. What about you? What's your story?
By the way, there are genetic markers for PMR and GCA. My maternal aunt had it, and my mother-in-law. For a relatively rare disorder, I knew about it for years!

REPLY
1 reply
nyxygirl | @nyxygirl | May 31, 2023
In reply to @tsc "I think jumpers are sweaters, @nyxgirl, if I recall correctly from reading Babara Pym novels. I..." + (show)
@tsc

I think jumpers are sweaters, @nyxgirl, if I recall correctly from reading Babara Pym novels. I used to stretch for 40 minutes in the morning, hoping it would help me get out of bed. It didn't. Then I walked for a good hour in the mornings, but the back of my knees stayed stiff. My neck was so sore and stiff I wanted to go to a chiropractor, but I was scared that any manipulation would break my neck! And my morning stiffness lasted all day. I felt a little better in the evenings, breathed a sigh of relief, and thought I was getting better, but every morning proved me wrong.
Oh, the joys of PMR! What nonsufferer could ever understand it?

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@tsc - It's Ground Hog Day !!! Are you at a better place now - sure hope so !

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1 reply
Teri | @tsc | May 30, 2023
In reply to @johnbishop "Thanks Teri - @nyxygirl provided the article but is not able to post links yet. Hopefully..." + (show)
@johnbishop

Thanks Teri - @nyxygirl provided the article but is not able to post links yet. Hopefully she will be able to post them soon.

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Well, thanks to you and @nyxgirl both!

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Mentor
John, Volunteer Mentor | @johnbishop | May 30, 2023
In reply to @tsc "Great article, @johnbishop. Thanks for posting it." + (show)
@tsc

Great article, @johnbishop. Thanks for posting it.

Jump to this post

Thanks Teri - @nyxygirl provided the article but is not able to post links yet. Hopefully she will be able to post them soon.

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