1. < Polymyalgia Rheumatica (PMR)

New to PMR diagnosis

Posted by deborah57 @deborah57, Mar 6, 2024

Hi, I am new here and just finding my way. I have some questions. I was recently diagnosed with PMR. I took the initial diagnostic dose of tapered Methylprednisolone and responded immediately so my Dr prescribed 5mg Prednisone while I am waiting to see a Rhematologist.
I haven't started taking it yet.
I am terrified of prednisone. I'm sensitive to drugs and have had numerous bad experiences with some of them. I'm healthy, eat clean, don't drink or smoke, get exercise daily.
Here are some of my questions:
I see a lot of discussion about people trying to taper off Pred. How long are people usually on it before starting to try and taper? If you have been on the drug for awhile, when and why would you decide to taper?
Does anyone have experience with inter muscular injections? Or the new Biologic KevZara?

thanks for any information!

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linda7 | @linda7 | Feb 20 3:06pm
In reply to @jeff97 "I didn't apply for financial assistance since my insurance paid for my Actemra, but I found..." + (show)
@jeff97

I didn't apply for financial assistance since my insurance paid for my Actemra, but I found a couple of private sources that would pay if you're not insured or else help with the co-pay. The Genentech Foundation would pay if your income for a single person was below roughly $100,000, and more if you're married. I found another source, the HealthWell Foundation that would pay for at least some of your co-pay if your income was below roughly $60-70 thousand for a single person, and more if you're married. These grants were for people with GCA to get Actemra. I just Googled Kevzara, and it looks like Kevzara Connect provides assistance for Kevzara.

I don't know if it was prednisone or Actemra, but my cholesterol went up more than yours, and I'm going to have to go on a statin. But it's worth it to me to get off of prednisone hopefully.

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I was on Kevzara Connect for 8 months but at the end of 2024 I was cut off. I believe they cut off all straight Medicare patients and maybe Advantage as well. I qualified by income initially since they do a credit report. I'm glad to be off Kevzara for the moment and mainly put in a comment so others could have the information. It didn't make sense to be on 2 drugs with no real progress toward getting prednisone below 5 mg. Especially if I needed to add a statin which has more side effects. The doctor told me how much the high cholesterol was raising my risk of heart attack and stroke and it got my attention. My rheumatologist wants to see how I do without Kevzara and if I have to raise the prednisone significantly possibly get me on Actemra. After 7 weeks off Kevzara not much change.

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jerkyjefr | @jerkyjefr | Feb 20 4:14pm
In reply to @rnm "Hello, I was diagnosed with PMR just about two weeks ago. I have been on a..." + (show)
@rnm

Hello,
I was diagnosed with PMR just about two weeks ago. I have been on a low-dose of prednisone, 10 mg daily for about a week. The prednisone does seem to help with the pain, particularly as the day wears on. My question is has any one out there ever started on a biologic to begin with? I am very frightened and fearful about the side effects of prednisone. Any and all information and insights would be helpful. I feel very scared about this diagnosis. Thank you in advance for your help.

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Hi, sorry to hear of ur diag. My docs had me on pred 4 over 7 hrs, must get off. Ra doc said, not pmr is ra. B sure, ck with primary, can't stay with prednisone 4 long. MUST hav diag from experienced ra doc, many tests needed to b sure. Example, test could show beginning of MS. Good luck, stay in touch. Regards, Jerky.

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wendydarling | @wendydarling | 4 days ago

Newly diagnosed with PMR ( within last 3 wks) and am looking for any new information. My diagnosing physician (GP) seems hesitant to refer me to rheumatologist and I feel I’m in a desert seeking answers for questions I don’t even know exist! Any books, links to current, reliable info would be GREATLY appreciated! I work full time, remotely, at a computer 8+ hrs per day, am 62, and have NO clue what to expect as far as my remaining work life, etc.. Thank you!

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7 replies
gently | @gently | 4 days ago
In reply to @wendydarling "Newly diagnosed with PMR ( within last 3 wks) and am looking for any new information...." + (show)
@wendydarling

Newly diagnosed with PMR ( within last 3 wks) and am looking for any new information. My diagnosing physician (GP) seems hesitant to refer me to rheumatologist and I feel I’m in a desert seeking answers for questions I don’t even know exist! Any books, links to current, reliable info would be GREATLY appreciated! I work full time, remotely, at a computer 8+ hrs per day, am 62, and have NO clue what to expect as far as my remaining work life, etc.. Thank you!

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wendydarling, most people with pmr have remission with treatment sometimes over a two year period. Can you self-refer to a rheumatologist.

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wendydarling | @wendydarling | 3 days ago
In reply to @wendydarling "Newly diagnosed with PMR ( within last 3 wks) and am looking for any new information...." + (show)
@wendydarling

Newly diagnosed with PMR ( within last 3 wks) and am looking for any new information. My diagnosing physician (GP) seems hesitant to refer me to rheumatologist and I feel I’m in a desert seeking answers for questions I don’t even know exist! Any books, links to current, reliable info would be GREATLY appreciated! I work full time, remotely, at a computer 8+ hrs per day, am 62, and have NO clue what to expect as far as my remaining work life, etc.. Thank you!

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No, they are requiring a referral but said ANY medical referral would start the ball rolling. Think I might get my dentist to refer me! My GP is acting like the rheumatologist’s gatekeeper!

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1 reply
naples3 | @naples3 | 3 days ago
In reply to @wendydarling "Newly diagnosed with PMR ( within last 3 wks) and am looking for any new information...." + (show)
@wendydarling

Newly diagnosed with PMR ( within last 3 wks) and am looking for any new information. My diagnosing physician (GP) seems hesitant to refer me to rheumatologist and I feel I’m in a desert seeking answers for questions I don’t even know exist! Any books, links to current, reliable info would be GREATLY appreciated! I work full time, remotely, at a computer 8+ hrs per day, am 62, and have NO clue what to expect as far as my remaining work life, etc.. Thank you!

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I was diagnosed with PMR in 2000 and the pain in my entire body was horrible. I couldn’t ring out a washcloth, couldn’t take care of my personal care. My doctor prescribed Prednisone and within 24 hours the pain almost disappeared. I was referred to Rheumatologist who managed my PMR for 3 years. I have been in remission with no residual effects. Prednisone is not good for a person to be on and blood work is done routinely to monitor. You should check with your health insurance and find a Rheumatologist (there don’t seem to be many) and make your own appointment.

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William | @willgranger1127 | 3 days ago
In reply to @wendydarling "Newly diagnosed with PMR ( within last 3 wks) and am looking for any new information...." + (show)
@wendydarling

Newly diagnosed with PMR ( within last 3 wks) and am looking for any new information. My diagnosing physician (GP) seems hesitant to refer me to rheumatologist and I feel I’m in a desert seeking answers for questions I don’t even know exist! Any books, links to current, reliable info would be GREATLY appreciated! I work full time, remotely, at a computer 8+ hrs per day, am 62, and have NO clue what to expect as far as my remaining work life, etc.. Thank you!

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I recommend you walk for three minutes every half hour or so. Get some Copper brand, open-toe compression socks, take Alpha-lipoic acid supplements, L-carnitine/arginine, and other non-prescription formulations that others on this site have success with.
The main culprit is sitting. Just keep moving. Cut out carbs and alcohol. My best!

REPLY
frankiechi | @frankiechi | 3 days ago
In reply to @wendydarling "Newly diagnosed with PMR ( within last 3 wks) and am looking for any new information...." + (show)
@wendydarling

Newly diagnosed with PMR ( within last 3 wks) and am looking for any new information. My diagnosing physician (GP) seems hesitant to refer me to rheumatologist and I feel I’m in a desert seeking answers for questions I don’t even know exist! Any books, links to current, reliable info would be GREATLY appreciated! I work full time, remotely, at a computer 8+ hrs per day, am 62, and have NO clue what to expect as far as my remaining work life, etc.. Thank you!

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You absolutely should see a rheumatologist. I was diagnosed 15 years ago by my cardiologist. I did some research and living in NY discovered that the Hospital for Special Surgery had rheumatologists who specialize in PMR. I saw him every month for a year for blood work; my inflammatory marker dropped from a hundred to single digits where it has remained. Do see a specialist; don't live in pain. This is a treatable condition.

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1 reply
gently | @gently | 3 days ago
In reply to @wendydarling "No, they are requiring a referral but said ANY medical referral would start the ball rolling...." + (show)
@wendydarling

No, they are requiring a referral but said ANY medical referral would start the ball rolling. Think I might get my dentist to refer me! My GP is acting like the rheumatologist’s gatekeeper!

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wendydarling, I wonder if the gatekeeper doubts their diagnosis.

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wendydarling | @wendydarling | 3 days ago
In reply to @wendydarling "Newly diagnosed with PMR ( within last 3 wks) and am looking for any new information...." + (show)
@wendydarling

Newly diagnosed with PMR ( within last 3 wks) and am looking for any new information. My diagnosing physician (GP) seems hesitant to refer me to rheumatologist and I feel I’m in a desert seeking answers for questions I don’t even know exist! Any books, links to current, reliable info would be GREATLY appreciated! I work full time, remotely, at a computer 8+ hrs per day, am 62, and have NO clue what to expect as far as my remaining work life, etc.. Thank you!

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Could be… all the more reason to see a specialist in that area.. hopefully the logjam will break soon!

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