1. < Polymyalgia Rheumatica (PMR)

PMR - possible diagnosis

Posted by nancy53 @nancy53, Dec 29, 2023

I have developed what my PCP theorizes is PMR. First available appointment with a Rheumatologist is in February. Meanwhile, it has been a huge and painful life altering experience. My shoulders have been immobile some mornings and my hips don't want to function either. A couple of hours into the morning I feel better and can move. I was given Prednisone (game changer) dosed at 30mg every other day. I've researched the negative aspects - but it really does help. I'm trying acupuncture, PT, and I've cleaned my diet up drastically. No sugar, refined foods, red meat, processed food, etc. Nothing that can be considered inflammatory passes my lips! I just turned 70, am fit, did Yoga everyday for 4 years prior to this malady striking me. I take Turmeric with black pepper 3 times a day. Light exercise seems to help a bit. Thanks for listening, this has been a very scary 2 months. Any other anecdotal suggestions for symptom control? Thankful I found this support group, My body can't do much, but my brain can!

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

nyxygirl | @nyxygirl | Dec 30, 2023

@nancy53 greetings ! I don't recall a single person on this forum , where i have enjoyed and benefited from the give and take, ever mentioning taking Prednisone EVERY OTHER DAY ??
What was a helpful suggestion for me and others was/is SPLITTING the dose - take some in morning and again at dinner-time for example. In your research perhaps you stumbled across PMRandIl6.com ? scroll over to the resources Tab and you can watch two videos. And presumably you are aware that there is a FDA approved biological for PMR = Kevzara ( anti-IL6 Receptor)
The next step will your tapering schedule, but managed by which of your doctors i wonder ?
You might like reading the comments in the manuscript i will attach -- the very sudden onset of symmetrical /morning stiffness in shoulders and hips was something i noted because i was keeping pain journal for my knee. many people on this forum also keep excel spreadsheets or heat maps of pain/stiffness vs the dose of Prednisone .
Hoping for happy healthy 2024 for each of us : )

Shared files

impediment to living life pone (impediment-to-living-life-pone.0126758.pdf)

REPLY
1 reply
pb50 | @pb50 | Dec 30, 2023

Great feedback. I had the same question but don’t have the breadth of observations you do. I have only taken two courses of prednisone since 2012 for RA flares. But I started high and stepped down every fifth day. I set my alarm to take it at 5am so I could sleep at night. I don’t know how anyone could take it at night but my sleep is easily disrupted.

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nancy53 | @nancy53 | Dec 30, 2023
In reply to @nyxygirl "@nancy53 greetings ! I don't recall a single person on this forum , where i have..." + (show)
@nyxygirl

@nancy53 greetings ! I don't recall a single person on this forum , where i have enjoyed and benefited from the give and take, ever mentioning taking Prednisone EVERY OTHER DAY ??
What was a helpful suggestion for me and others was/is SPLITTING the dose - take some in morning and again at dinner-time for example. In your research perhaps you stumbled across PMRandIl6.com ? scroll over to the resources Tab and you can watch two videos. And presumably you are aware that there is a FDA approved biological for PMR = Kevzara ( anti-IL6 Receptor)
The next step will your tapering schedule, but managed by which of your doctors i wonder ?
You might like reading the comments in the manuscript i will attach -- the very sudden onset of symmetrical /morning stiffness in shoulders and hips was something i noted because i was keeping pain journal for my knee. many people on this forum also keep excel spreadsheets or heat maps of pain/stiffness vs the dose of Prednisone .
Hoping for happy healthy 2024 for each of us : )

Jump to this post

The doctor that is dosing me like that is a dermatologist with a PHD from Harvard in immunology.

It seems to be working. I've only been doing it for a week. I'll keep with it until I see the Rheumatologist.

Since synthetic cortisol fools your body into not making it, I theorize that taking it every other day keeps your body actively producing it. I don't know.

I thank God he prescribed it, my PCP was a little too cautious and the pain was not mitigated long term with the two 6 packs he gave me.

Thanks for the articles - I'll read them later.

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2 replies
nyxygirl | @nyxygirl | Dec 30, 2023
In reply to @nancy53 "The doctor that is dosing me like that is a dermatologist with a PHD from Harvard..." + (show)
@nancy53

The doctor that is dosing me like that is a dermatologist with a PHD from Harvard in immunology.

It seems to be working. I've only been doing it for a week. I'll keep with it until I see the Rheumatologist.

Since synthetic cortisol fools your body into not making it, I theorize that taking it every other day keeps your body actively producing it. I don't know.

I thank God he prescribed it, my PCP was a little too cautious and the pain was not mitigated long term with the two 6 packs he gave me.

Thanks for the articles - I'll read them later.

Jump to this post

Hello again - i wanted to comment on your comment:

"This forum is great, I don't want to bore my concerned family and friends, but I need to vent and to get some answers."

But Please do spread awareness among your group of friends /family - i bet most will say - what? never heard of this ! The symmetrical pain and sudden onset may happen to them or soemone else they know some day . Or what happened to me is that i found out my cousin had PMR about 10 yrs ago and a distant friend also has it now. I sent many a Christmas card with the link PMRandyou.com. i also like this figure from the 2020 review Lundberg et al

Shared files

kevzara-pmr-and-you-brochure-475511e42d9bffe11962631f03f903fa (kevzara-pmr-and-you-brochure-475511e42d9bffe11962631f03f903fa.pdf)

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1 reply
nancy53 | @nancy53 | Dec 30, 2023
In reply to @nyxygirl "Hello again - i wanted to comment on your comment: "This forum is great, I don't..." + (show)
@nyxygirl

Hello again - i wanted to comment on your comment:

"This forum is great, I don't want to bore my concerned family and friends, but I need to vent and to get some answers."

But Please do spread awareness among your group of friends /family - i bet most will say - what? never heard of this ! The symmetrical pain and sudden onset may happen to them or soemone else they know some day . Or what happened to me is that i found out my cousin had PMR about 10 yrs ago and a distant friend also has it now. I sent many a Christmas card with the link PMRandyou.com. i also like this figure from the 2020 review Lundberg et al

Jump to this post

You are right.

Everyone knows of my plight, I just don't want to inundate them with my woes. Most are shocked to see this Type A so depleted. All my projects are on an indefinite hold.

All of my friends and family have been great and supportive.

My empathy has always guided me, but my God, this malady has certainly opened my eyes to the suffering all around us.

The kindness of people is overwhelming and so appreciated.

Through it all, I remain a grateful and optimistic woman.

Just a bit weary. 😉

REPLY
pb50 | @pb50 | Dec 30, 2023
In reply to @nancy53 "The doctor that is dosing me like that is a dermatologist with a PHD from Harvard..." + (show)
@nancy53

The doctor that is dosing me like that is a dermatologist with a PHD from Harvard in immunology.

It seems to be working. I've only been doing it for a week. I'll keep with it until I see the Rheumatologist.

Since synthetic cortisol fools your body into not making it, I theorize that taking it every other day keeps your body actively producing it. I don't know.

I thank God he prescribed it, my PCP was a little too cautious and the pain was not mitigated long term with the two 6 packs he gave me.

Thanks for the articles - I'll read them later.

Jump to this post

I had no idea that synthetic cortisol suppresses biologic production. The things I learn here are amazing.

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2 replies
DadCue | @dadcue | Dec 30, 2023
In reply to @pb50 "I had no idea that synthetic cortisol suppresses biologic production. The things I learn here are..." + (show)
@pb50

I had no idea that synthetic cortisol suppresses biologic production. The things I learn here are amazing.

Jump to this post

Wait until you delve into what prednisone (synthetic cortisol) does to the whole HPA axis.
https://www.ncbi.nlm.nih.gov/books/NBK279047/#:~:text=In%20addition%2C%20the%20timing%20of,and%205mg%20in%20the%20morning.
Recovery can take years. The following is a good summary.
https://www.endocrine-abstracts.org/ea/0037/ea0037ep46

REPLY
2 replies
nancy53 | @nancy53 | Dec 30, 2023
In reply to @pb50 "I had no idea that synthetic cortisol suppresses biologic production. The things I learn here are..." + (show)
@pb50

I had no idea that synthetic cortisol suppresses biologic production. The things I learn here are amazing.

Jump to this post

That's one of the reasons Prednisone is not to be taken lightly. It can wreak havoc with your entire endocrine system.

I've used this unfortunate down time to read everything I can. Of course, I don't understand most of it!

REPLY
nancy53 | @nancy53 | Dec 30, 2023
In reply to @dadcue "Wait until you delve into what prednisone (synthetic cortisol) does to the whole HPA axis. https://www.ncbi.nlm.nih.gov/books/NBK279047/#:~:text=In%20addition%2C%20the%20timing%20of,and%205mg%20in%20the%20morning...." + (show)
@dadcue

Wait until you delve into what prednisone (synthetic cortisol) does to the whole HPA axis.
https://www.ncbi.nlm.nih.gov/books/NBK279047/#:~:text=In%20addition%2C%20the%20timing%20of,and%205mg%20in%20the%20morning.
Recovery can take years. The following is a good summary.
https://www.endocrine-abstracts.org/ea/0037/ea0037ep46

Jump to this post

Thank you for more information. I completely understand why my PCP was reluctant to continue to prescribe. I also understand why my dermatologist knew I needed more help.

Bottom line is, I hope to be on Prednisone for a short time, and will gladly trade the consequences of it for the pain relief. I still hurt, but I can function.

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