1. < Polymyalgia Rheumatica (PMR)

PMR: Are there treatment alternatives to Prednisone?

Posted by ronhonn @ronhonn, May 20, 2020

Hi, all. I'm wondering if anyone is finding any alternatives to Prednisone in treatment of PMR?

I've been on the PMR/Prednisone train for about 6 months now (was in pain and stiffness for a year or two before but just thought I was "getting old"), being treated through Rheumatology at Shands Hospital (Great people, like Mayo, I'm sure.) in Gainesville, FL. I started at the high dose of 60 mg, it was amazing--within days I felt like I was invincible, having delusions of grandeur due to "Prednisone Psychosis" (It's a thing. And I ride it for all it's worth. 🙂 )
--and launched into crazy lucid dreams and auditory hallucinations--honest to God, one night I heard Wolf Blitzer from CNN standing at the foot of my bed and in a clearly audible voice say: "Right." -and I was up for the night and most nights after. In fairness to my brain, I watch The Situation Room sometimes, so I should've seen that coming.

I was only sleeping, like 1-2 hours a night, but had incredible energy. My nocturnal meanderings included a voracious appetite--for which I tried to stave off weight gain by eating large quantities of vegetables. My wife refers to me as "The Were-rabbit", with appropriate emojis. And with my morning evacuations I could fertilize half of England. I've retained fluids to the point that I look kind of like a squirrel with a mouthful of acorns? Only without the benefit of said nutritional content. I look like--if Alfred Hitchcock and Winston Churchill had a love child? I would be that child.

These days, I've tapered down to 15 mg/day, and the pain and stiffness are returning. Now I look like Winston Churchill/Alfred Hitchcock (Where did my chin go? I distinctly remember having a neck.), only I'm dragging out my cane again (Okay, that's a little Churchillian, at least) to get up and move around.

If I sleep 5 hours at a stretch, I call that:
"Boy, I'm sleeping the whole day away!"

Fortunately for me, I'm teaching remotely via Zoom, and my students are all so kind as to not ask what happened to my chin. Some days, I can't even remember if I was wearing pants. They love me for the madman that I am.

As I consider increasing dosage and heading back into Prednisone Psychosis land, I wondered if there's an alternative to allow me to hop off the train?

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

Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Oct 18, 2023
In reply to @coppertop71 "My wife was recently diagnosed with PMR. I started researching atternatives other than prednisone. Having researched..." + (show)
@coppertop71

My wife was recently diagnosed with PMR. I started researching atternatives other than prednisone. Having researched and experience with SARMs such as MK2866, Cardarine, MK677 that have proven to be ani-inflammatory as well as other natural anti-inflammatory supplements and diets, why are Corticosteroids the "go to" treatments when research has shown safer options?

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Hi @coppertop71 - you may notice I moved your discussion and combined it with an existing discussion titled: "PMR: Are there treatment alternatives to Prednisone?" - https://connect.mayoclinic.org/discussion/alternatives-to-prednisone/

I did this so you could read the responses from other members on their experiences with the same question. Members like @wilckdds, @wv54, and @edinnola have discussed alternatives.

REPLY
marilynredder2367 | @marilynredder2367 | Oct 19, 2023
In reply to @dadcue "Perhaps prednisone is still used because corticosteroids quickly relieved symptoms of PMR and were thought to..." + (show)
@dadcue

Perhaps prednisone is still used because corticosteroids quickly relieved symptoms of PMR and were thought to be "relatively safe" when taken on a short term basis. I know of no other treatment that works as rapidly as prednisone does.

The belief is PMR will "burn itself out" relatively quickly in a year or two. The pain relief benefits of "short term" prednisone use outweigh the risks of side effects. Unfortunately the risk of significant side effects increases when prednisone is used "long term." The risks are directly proportional to dose and duration of treatment.

In summary, prednisone is a "quick fix" but not a good long term solution.

There weren't many alternative treatments available during the corticosteroid era for the treatment of many autoimmune disorders. Now, that has changed for some autoimmune disorders but PMR/GCA has some catching up to do.

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Actemra is now being used for GCA. It helps reduce the prednisone with less discomfort. I recall reading about a drug being use d for PMR. Try researching it.

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kberlyhouse | @kberlyhouse | Oct 20, 2023
In reply to @coppertop71 "My wife was recently diagnosed with PMR. I started researching atternatives other than prednisone. Having researched..." + (show)
@coppertop71

My wife was recently diagnosed with PMR. I started researching atternatives other than prednisone. Having researched and experience with SARMs such as MK2866, Cardarine, MK677 that have proven to be ani-inflammatory as well as other natural anti-inflammatory supplements and diets, why are Corticosteroids the "go to" treatments when research has shown safer options?

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I’m very interested in finding more natural therapies for PMR. I am reading that Ostarine Mk2866 can cause liver damage and heart attack— what info can you link on this supplement as safe? I have had PMR for 3 years now since it was triggered by my first COVID infection at 52. I have tried SO MANY options but have been on Prednisone for 2 years as the only thing that has allowed me to function. I just bought a FIR Sauna to try to reset my immune system. Any info you can provide on the supps you mention would be appreciated! Thanks!

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dsm68 | @dsm68 | Dec 17, 2023

Your post reminded me of something CS Lewis crossed with John Crist would write! I actually laughed out loud and felt less alone! PMR and Prendesone...it's a bugger for sure.

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wilmingtonemperor | @wilmingtonemperor | Dec 18, 2023

Now that I have stopped laughing histerically at your post. I have been on Kevzara for my PMR since October. Tomorrow I taper to 2.5 of prednisone and get my 5th Kevzara injection. I was diagnosed in January and I plan on being off prednisone next month after 1 year of dealing with PMR. Kevzara is a biologic and was approved for PMR in February. Approved for RA since 2017.
Good luck

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zena9 | @zena9 | Dec 21, 2023

Hello
I was diagnosed with PMR 7 yrs ago. I started with 10 mg and always tapered as soon as I was feeling better down to 5 mg and even 2.5. Very bad fatigue from time to time and sleeping 9 to 10 hrs a night and had to retire due to physical exhaustion . A year ago I had a total knee replacement and I stopped the prednisone and thought I was over pmr. Throught the 6 yrs my labs were all within the normal range other than the CRP, and it went from 25 to 75 on a normal scale up to 10.
I was just recently refered to a Dr who said my pmr was back and he wanted me to go on Methotrexate injection once a week. After 4 injections my lab Crp went from 45 to 8. Finally in the normal range, but the side effects are very scarry and I am afraid to continue. Anyone else have experience with Methotrexate? I am 76

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nancy334 | @nancy334 | Dec 22, 2023

I’ve been on methotrexate injections for over a year now and find the side effects have subsided. I still get times of great exhaustion,abdominal cramps and feelings of nausea but nothing like when I started. Think it took about two months to settle down… .Unfortunately, it didn’t do much to relieve the PMR symptoms so am starting Actemra today. I would hang in there for while yet if you are having success reducing yr PMR …good luck

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curlyqlinda1 | @curlyqlinda1 | Dec 23, 2023
In reply to @minijohn "Hey mikeshell, After dealing with a great deal of discomfort in my upper legs and upper..." + (show)
@minijohn

Hey mikeshell,
After dealing with a great deal of discomfort in my upper legs and upper torso for a number of months, I was eventually diagnosed with PMR in July 2020. I received almost immediate relief from a 20mg dose of prednisone and started a 10-month taper. Fortunately I experienced only minimal side effects from the prednisone (mostly some weight gain). Near the end of my taper, some of the discomfort returned, but not nearly at the level I had experienced earlier. About a month after weaning off the prednisone, I began to experience mild headaches and some jaw discomfort. After doing some research, I decided I should see a rheumatologist, made the appointment, and within days was diagnosed with Giant Cell Arteritis in June 2021. At that point I started another 10-month prednisone taper and also began receiving monthly infusions of Actemra. If you would like to connect with others in your situation, I would also suggest you visit: https://www.vasculitisfoundation.org

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2 yrs with PMR. I’m concerned about getting Giant Cell Arteritis, my right jaw has felt like I was hit in the jaw. Do you think I should have this check out more throughly?

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slward1951 | @slward1951 | Dec 23, 2023

I would absolutely get it checked ASAP. Nothing to fool around with!

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600dave600 | @600dave600 | Dec 24, 2023

I would like to find out what other foods, supplements, vitamins,and medicines are better than Prednisone. I have type 2 diabetes and prednisolone increases A1c.

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