1. < Polymyalgia Rheumatica (PMR)
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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!

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

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wendydarling | @wendydarling | Apr 26, 2025
In reply to @frankiechi "You absolutely should see a rheumatologist. I was diagnosed 15 years ago by my cardiologist. I..." + (show)
Profile picture for frankiechi @frankiechi

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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Thank you!!

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John, Volunteer Mentor | @johnbishop | Apr 26, 2025
In reply to @wendydarling "Newly diagnosed with PMR ( within last 3 wks) and am looking for any new information...." + (show)
Profile picture for wendydarling @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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Hello @wendydarling, You will notice that we merged your discussion with an existing discussion so that you can meet some of the other folks who are newly diagnosed with PMR. If you click the link below it will take you to the beginning of the discussion where you can read what others have also shared.
-- New to PMR diagnosis: https://connect.mayoclinic.org/discussion/new-to-pmr-diagnosis/

I thought you might also find the video posted by @dadcue in the following discussion helpful.
-- Comprehensive Overview Of PMR: https://connect.mayoclinic.org/discussion/comprehensive-overview-of-pmr/

There are so many folks here on Connect that have shared valuable experience and an easy way to find answers for questions you may have is to use the search function with a few keywords related to your question. Here's a sample search using "PMR what helps" - https://connect.mayoclinic.org/search/.

You are your own best advocate so I wouldn't hesitate pushing your GP to get a referral to a rheumatologist.

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pah17 | @pah17 | Feb 19 12:47am
In reply to @jeff97 "I agree with @seniormed that the prednisone side effects don't happen to everyone and are manageable...." + (show)
Profile picture for jeff97 @jeff97

I agree with @seniormed that the prednisone side effects don't happen to everyone and are manageable. I have GCA and PMR, and I started on prednisone almost 8 months ago beginning at 60 mg a day. I stayed at that level for 6 weeks, and now I have tapered down to 8 mg. I've also been injecting Actemra weekly for 7 months. I've only gained 3 pounds in 8 months, and I've been able to continue exercising. I had some muscle problems as I tapered the prednisone, but those seemed to have resolved once I got down to 10 mg per day, I just had a bone scan, and my bone density is ok. I take calcium and vitamins D3 and K2 daily, I'm going to have to start taking a statin to control high cholesterol triggered by the pred and Actemra, so that is one side effect I have experienced.

The quality of my life is much much better now than it was before I started the prednisone and Actemra.

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@jeff97 did you have a biopsy for the GCA?

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jeff97 | @jeff97 | Feb 19 4:35am
In reply to @pah17 "@jeff97 did you have a biopsy for the GCA?" + (show)
Profile picture for pah17 @pah17

@jeff97 did you have a biopsy for the GCA?

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@pah17 Yes, I had one on the second day I was in the hospital for temporary vision loss. I got the results back 4 days later and it was positive. The doctors started me on treatment for GCA before they did the biopsy, because the vision problems were an emergency. My vision turned out ok.

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