1. < Polymyalgia Rheumatica (PMR)

On a hamster wheel with PMR.

Posted by queensfaith8 @queensfaith8, May 14 12:34pm

Hello Everyone, I was diagnosed with PMR in 2020. I was on prednisone for 3 years. I started at 20mg and when I got down to the single digits the pain would come back. So my dosage was increased to 15mg. Finally got off prednisone last November.
Symptoms have returned and rheumatologist wants to start prednisone again for 4 months and Kevzara.
I gained a lot of weight on the prednisone. I now have orthopedic challenges with my right hip. I cannot afford to gain weight.
The pain and stiffness has it's moments I don't sleep well. I do water aerobics and working to knock off the weight.
I just don't want to go back on prednisone.
Has anyone tried any natural remedies?
Thanks for your suggestions and blessings!

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

DadCue | @dadcue | May 14 1:49pm

Kevzara might be worth a try for "relapsing PMR" Kevzara won't work immediately so prednisone might still be needed as a "bridge" until Kevara starts to take effect. With any luck, Kevzara will allow you to taper off Prednisone more quickly than you are accustomed to. With some additional luck, PMR will go back into remission. Kevzara may allow you to have a "lasting remission." You won't know what will happen unless you try Kevzara.

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Mentor
John, Volunteer Mentor | @johnbishop | May 14 4:54pm

Hello @queensfaith8, I would like to add my welcome to Connect along with @dadcue and others. I also gained a lot of weight my first go round with PMR that last 3-1/2 years. One of things I did after my first PMR flare was to eat healthier and exercise more to help with the weight gain. It turned out to be a blessing making the changes for me as my second time with PMR only lasted 1-1/2 years before I was able to taper off of prednisone. If you haven't already seen it, this site describes some helpful suggestions.

--- Polymyalgia Rheumatica Diet: Do's and Don'ts
https://www.healthline.com/health/polymyalgia-rheumatica-diet

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1 reply
tuckerp | @tuckerp | May 14 7:53pm

I have had two flares. Both times I just went on a 5 day steroid bash then just stopped. Both times the pain was gone . But were all different.

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queensfaith8 | @queensfaith8 | May 15 7:31am
In reply to @dadcue "Kevzara might be worth a try for "relapsing PMR" Kevzara won't work immediately so prednisone might..." + (show)
@dadcue

Kevzara might be worth a try for "relapsing PMR" Kevzara won't work immediately so prednisone might still be needed as a "bridge" until Kevara starts to take effect. With any luck, Kevzara will allow you to taper off Prednisone more quickly than you are accustomed to. With some additional luck, PMR will go back into remission. Kevzara may allow you to have a "lasting remission." You won't know what will happen unless you try Kevzara.

Jump to this post

Thanks so much for the advice.

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queensfaith8 | @queensfaith8 | May 15 7:31am
In reply to @tuckerp "I have had two flares. Both times I just went on a 5 day steroid bash..." + (show)
@tuckerp

I have had two flares. Both times I just went on a 5 day steroid bash then just stopped. Both times the pain was gone . But were all different.

Jump to this post

My doctor did recommend that as well. Thanks so much for sharing.

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queensfaith8 | @queensfaith8 | May 15 7:38am
In reply to @johnbishop "Hello @queensfaith8, I would like to add my welcome to Connect along with @dadcue and others...." + (show)
@johnbishop

Hello @queensfaith8, I would like to add my welcome to Connect along with @dadcue and others. I also gained a lot of weight my first go round with PMR that last 3-1/2 years. One of things I did after my first PMR flare was to eat healthier and exercise more to help with the weight gain. It turned out to be a blessing making the changes for me as my second time with PMR only lasted 1-1/2 years before I was able to taper off of prednisone. If you haven't already seen it, this site describes some helpful suggestions.

--- Polymyalgia Rheumatica Diet: Do's and Don'ts
https://www.healthline.com/health/polymyalgia-rheumatica-diet

Jump to this post

Thanks so much for the resource and support.

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trina24 | @trina24 | May 15 8:44am

I have been on infusion once a month w Acterna. It has helped. I can’t take Predisone

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2 replies
DadCue | @dadcue | May 15 8:57am
In reply to @trina24 "I have been on infusion once a month w Acterna. It has helped. I can’t take..." + (show)
@trina24

I have been on infusion once a month w Acterna. It has helped. I can’t take Predisone

Jump to this post

I do a once a month infusion of Actemra too. I can take Prednisone if I need to except I haven't needed to in more than 2 years. My life is so much better being off Prednisone.

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1 reply
trina24 | @trina24 | May 15 9:04am

Good to be off Predisone I agree

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queensfaith8 | @queensfaith8 | May 15 10:04am
In reply to @trina24 "I have been on infusion once a month w Acterna. It has helped. I can’t take..." + (show)
@trina24

I have been on infusion once a month w Acterna. It has helped. I can’t take Predisone

Jump to this post

thanks so much for sharing. Will read more about Acterna.

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