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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Posted by Ethan McConkey, Moderator @ethanmcconkey, Dec 18, 2019

Welcome to the Polymyalgia Rheumatica (PMR) group on Mayo Clinic Connect.

Meet other members who are dealing with PMR. Let’s learn from each other and share stories about living well with PMR, coping with the challenges and offering tips.We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of coffee or beverage of choice and let’s chat. Why not start by introducing yourself? What's your experience with PMR? How are you doing today?

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

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tweetypie13 | @tweetypie13 | 6 hours ago
In reply to @dadcue "@tweetypie13 I had a competely different experience when Actemra was offered to me. My rheumatologist said..." + (show)
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@tweetypie13

I had a competely different experience when Actemra was offered to me. My rheumatologist said Actemra represented my "best hope of ever getting off prednisone." After 12 years of PMR and prednisone, I had lost all hope of ever tapering off prednisone.

There wasn't any guarantee that Actemra would work for me. Comments on another PMR forum from "self proclaimed patient experts" discouraged me from trying Actemra. The research that IL-6 inhibitors showed positive results for the treatment of PMR/GCA was ignored. This was in 2018 so the research was new. The experts didn't have any personal experience with Actemra but they were opposed to it. They almost dissuaded me from trying Actemra.

Fortunately, my rheumatologist wanted my commitment before he started the process of submitting an authorization request to treat me with Actemra. I didn't think Actemra would be approved so I thought my "commitment" didn't matter. I didn't even know what medication I committed myself to.

When Actemra was approved, I wanted to back out of my commitment because of all the negative comments I received. My rheumatologist didn't twist my arm or anything. His response to me wanting to back out of trying Actemra was, "I wouldn't know if Actemra works or not unless I tried it to see."

I wasn't optimistic that Actemra would work. After 3 months of doing Actemra injections every 2 weeks, I didn't feel any different. I was able to taper from 10 mg of prednisone down to 7 mg.

Since 7 mg was the dose where I usually flared whenever I tapered that low ... I decided to get the "inevitable flare" over with and tapered by 1 mg per week. That fast of a taper was contrary to the advice I received from the experts on the other forum.

In one month I went from 7 mg to 3 mg. I felt awful but PMR didn't flare. I was talking to my PCP when I remembered the endocrinolgist I saw a year or two earlier wanted to see me again IF I ever got to 3 mg. My PCP checked a cortisol level. The next thing I was told was not to taper any lower than 3 mg until I was seen by the endocrinolgist.

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@dadcue
Interestingly, after a year my Rehumy never got it thru his head that “I needed a reason” to take more meds. Told him, he did not get it that I am averse to taking even aspirin for a headache.

Good luck on your journey.

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Mike | @dadcue | 4 hours ago
In reply to @tweetypie13 "@dadcue Interestingly, after a year my Rehumy never got it thru his head that “I needed..." + (show)
Profile picture for tweetypie13 @tweetypie13

@dadcue
Interestingly, after a year my Rehumy never got it thru his head that “I needed a reason” to take more meds. Told him, he did not get it that I am averse to taking even aspirin for a headache.

Good luck on your journey.

Jump to this post

@tweetypie13

Discontinuing medications was the most remarkable result of me being on Actemra which allowed me to taper off Prednisone. I would need to evaluate all the medications that I used to take when I was on Prednisone. Conditions that were a problem when I was on Prednisone gradually subsided, My PCP deprescribed 3 blood pressure medications, atorvastatin, warfarin, famotidine and my opthalmologist stopped Cosopt for high intraocular pressures all within 2-3 years of me tapering off prednisone. Counting prednisone, that is at least 8 medications that I no longer need.

When I was still working as a nurse, I was very aware of the problem polypharmacy of geriatric patients. My awareness was mostly because I needed to give geriatric patients a boatload of medications. I vowed that I would never take more than 5 medications. Unfortunately, prednisone ushered in more and more medications and I was soon taking more than 10.

Take a look at the case study in the following link.
https://www.meded101.com/polypharmacy-case-study-prednisone-nsaids-and-more/
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I don't know what led to what but at the bottom of this guy's medication list is Prednisone 20 mg every day.

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maye33 | @maye33 | 2 hours ago

PMR / GCA positive diagnosis by pet scan thirteen months ago. ( nov 2024)

After 3 1/2 months pred and 12 months weekly subcutaneous Actemera (commenced simultaneously) ,I’m now on nil medication , except for calcium supplements.

Nil immediate or long term side effects from Actemera , & no long term side effects from 3 1/2 months prednisone. (Except maybe high dose pred caused hair loss that is growing back thicker and curlier than before)

Currently nil PMR / GCA symptoms and normal crp and esr since one month into treatment.
Back to my base line good health & usual lifestyle ( long may that last)

Actemera absolutely worked for me truncating my urgently required prednisone treatment.

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