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.

My son is getting married early Sept. Right after diagnosed this spring we asked my brother-in
-law if he would keep an eye on a demanding cousin during the wedding. The only other person to help her would have been my husband, the father of the groom. His initial response was “No….I have to be free to meet the bride’s family.” He did come around however. He’s actually a great guy.

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@sandiw77

I’m African American too but DNA testing did reveal that I had 6 % Northern European. Not sure why PMR was in that 6 % but I didn’t get to choose. 😉

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@sandiw77

Maybe that partially explains my PMR. I’m 27% European.

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@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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Hi @hunib33, I just found an interesting article,
https://www.uptodate.com/contents/clinical-manifestations-and-diagnosis-of-polymyalgia-rheumatica#!
"PMR is distinctly less common in Asian, African American, and Latin American populations, though all racial and ethnic groups can be affected."
I think of PMR and GCA as the beasts that were hidden, but lurking in my body, waiting for the right opportunity to pounce.
Was it difficult for you to get diagnosed, given that the occurrence of PMR/GCA in your race/ancestral group is relatively rare?

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@tsc

Hi @hunib33, I just found an interesting article,
https://www.uptodate.com/contents/clinical-manifestations-and-diagnosis-of-polymyalgia-rheumatica#!
"PMR is distinctly less common in Asian, African American, and Latin American populations, though all racial and ethnic groups can be affected."
I think of PMR and GCA as the beasts that were hidden, but lurking in my body, waiting for the right opportunity to pounce.
Was it difficult for you to get diagnosed, given that the occurrence of PMR/GCA in your race/ancestral group is relatively rare?

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Hi Teri. I actually diagnosed myself! I was searching conditions online, e.g. MS, Lupus, osteoarthritis, etc. and nothing was matching my exact symptoms. So I put all my symptoms in the search bar: low grade fever, runny nose, stiff shoulder and leg muscles, weight loss, loss of appetite, fatigue and PAIN. The results returned PMR. I don’t have pain in my temples but all other symptoms mapped. My Internist ran tests for inflammation, and my numbers were off the charts. It was such a relief to have my condition confirmed and to start on a regimen of medication and begin on the road to recovery.

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@hunib33

Hi Teri. I actually diagnosed myself! I was searching conditions online, e.g. MS, Lupus, osteoarthritis, etc. and nothing was matching my exact symptoms. So I put all my symptoms in the search bar: low grade fever, runny nose, stiff shoulder and leg muscles, weight loss, loss of appetite, fatigue and PAIN. The results returned PMR. I don’t have pain in my temples but all other symptoms mapped. My Internist ran tests for inflammation, and my numbers were off the charts. It was such a relief to have my condition confirmed and to start on a regimen of medication and begin on the road to recovery.

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@hunib33 and sudden onset , you are > 50 yrs old, pain stiffness worse in the morning ?? Are you keeping a pain journal ? Did the internist also suspect PMR? Did you come across the sites pmrandyou.com ? And pmrandIL6 dot com -- the slide show is super informative . I like this figure the best to think about what is happening in PMR.

Do you have a funny story yet ; )

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@hunib33

Hi Teri. I actually diagnosed myself! I was searching conditions online, e.g. MS, Lupus, osteoarthritis, etc. and nothing was matching my exact symptoms. So I put all my symptoms in the search bar: low grade fever, runny nose, stiff shoulder and leg muscles, weight loss, loss of appetite, fatigue and PAIN. The results returned PMR. I don’t have pain in my temples but all other symptoms mapped. My Internist ran tests for inflammation, and my numbers were off the charts. It was such a relief to have my condition confirmed and to start on a regimen of medication and begin on the road to recovery.

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Hi @hunib33,
You were smart.
I suffered in silence for a year thinking I had fibromyalgia. Then I was so fatigued, lost a lot of weight, and got shingles on my face (despite having the Shingrex vaccine a year prior).
I thought I had Lupus. I confided in an infectious disease doctor friend who went over my bloodwork, found I was anemic, and told me what other tests to request my doctor to take. He was resentful and told me if I had GCA, I'd be blind. Long story short, my inflammation markers were off the charts and biopsy of the temporal artery was positive.
Are you the only person in your family that you know of who's been stricken? My maternal aunt had it, and my mother-in-law as well.
I was taking prednisone about a year and a half and have been off it about nine months, no flareups.
How are you doing now?
Did you have an illness or injury before the onset of symptoms that you think caused your immune system to go into overdrive?
Wishing you the best,
Teri

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@hunib33

@sandiw77

Maybe that partially explains my PMR. I’m 27% European.

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Yep, probably does. Too bad we didn’t get to pick the stuff we wanted to inherit, though. Pretty sure we could have gotten something a lot more fun than PMR. 😂🤣

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@hunib33

Hi Teri. I actually diagnosed myself! I was searching conditions online, e.g. MS, Lupus, osteoarthritis, etc. and nothing was matching my exact symptoms. So I put all my symptoms in the search bar: low grade fever, runny nose, stiff shoulder and leg muscles, weight loss, loss of appetite, fatigue and PAIN. The results returned PMR. I don’t have pain in my temples but all other symptoms mapped. My Internist ran tests for inflammation, and my numbers were off the charts. It was such a relief to have my condition confirmed and to start on a regimen of medication and begin on the road to recovery.

Jump to this post

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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@tsc

Hi @hunib33,
You were smart.
I suffered in silence for a year thinking I had fibromyalgia. Then I was so fatigued, lost a lot of weight, and got shingles on my face (despite having the Shingrex vaccine a year prior).
I thought I had Lupus. I confided in an infectious disease doctor friend who went over my bloodwork, found I was anemic, and told me what other tests to request my doctor to take. He was resentful and told me if I had GCA, I'd be blind. Long story short, my inflammation markers were off the charts and biopsy of the temporal artery was positive.
Are you the only person in your family that you know of who's been stricken? My maternal aunt had it, and my mother-in-law as well.
I was taking prednisone about a year and a half and have been off it about nine months, no flareups.
How are you doing now?
Did you have an illness or injury before the onset of symptoms that you think caused your immune system to go into overdrive?
Wishing you the best,
Teri

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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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@nyxygirl

@hunib33 and sudden onset , you are > 50 yrs old, pain stiffness worse in the morning ?? Are you keeping a pain journal ? Did the internist also suspect PMR? Did you come across the sites pmrandyou.com ? And pmrandIL6 dot com -- the slide show is super informative . I like this figure the best to think about what is happening in PMR.

Do you have a funny story yet ; )

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I’m trying to think of something witty but it may take a few more days! I’m 78, and yes the stiffness is worse in the morning. I don’t keep a pain journal yet, but it’s an excellent idea, especially to track pain vs dosage of prednisone on a daily basis. My daughter gave me a journal as a gift recently so this is a perfect use for it. I also go to physical therapy as needed. There’s an excellent facility near me that offers muscle stimulation, heating pads with moisture, massage and exercises for each specific set of affected muscles. That has really helped the stiffness.

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