1. < Polymyalgia Rheumatica (PMR)

Has anyone fought Polymyalgia without prednisone successfully?

Posted by ddonnagirl1 @ddonnagirl1, Apr 16 9:00am

I have been on Prednisone for almost two years. I started at 60mg and just now dropped to 2.5. My body is so sore at this point but not like the initial diagnosis. My blood markers have always been normal. My Rheumatologist insists that my Polymyalgia is in remission. She wants me off Prednisone ASAP. My question is has anyone else experienced joint pain and muscle aches and just rode it out. Does the pain finally go away. Is it the adrenal glands struggling to come back. Has anyone fought Polymyalgia without prednisone successfully? Thanks 😊

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bix53 | @bix53 | Apr 25 10:36am

While it may have been possible, the daily pain was immobilizing for me that would have meant no cycling, or hiking. Did give up golf for a year. Been idle for a year at age 70 would have created a significant health deficit. Net net, accepted prednisone. Now 15 months in, on 4mg by able to do weights. None of this s easy.

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lashley75 | @lashley75 | Apr 26 9:47am

Took Prednisone for nearly 5 months, gained weight, had dizziness…felt my head was full of something…..took myself off slowly…so hoping I can find something that won’t also effect my bones. Taking Jarrow “Boneup” to build n strengthen my bones.

Right now on CBD, which helps a little, not out of pain.

This PMR is frustrating to say the least.

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1 reply
lashley75 | @lashley75 | Apr 26 9:57am
In reply to @janiceem "I agree that diet can make a significant difference. I'm a registered dietitian and had a..." + (show)
@janiceem

I agree that diet can make a significant difference. I'm a registered dietitian and had a very mild case (only hurt while laying in bed) and managed to taper off in about a year. I started with 10 mg. I eat a primarily an organic, whole foods, plant-based diet with small amounts of animal protein. I focus on anti-inflammatory foods. I also exercise 6 days a week (swimming, pilates, dance). For more information, you can find more of my comments in other threads.

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I find myself craving all my exercises, but worry they will increase my number on C-reative Protein blood test, currently at 8.5, however, my pain is as bad as it was when I hit 69.9 blood number in October of last year. I hit that number as I was moving into an apt. and did a lot of the small moving myself, going up n down steps.

Very cautious to start my exercises again, but heavier than I have ever been and very frustrated. I am almost 75.

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2 replies
lashley75 | @lashley75 | Apr 26 10:01am
In reply to @elizadolittle "I've been on 5 mg Prednizone every other day for years. I have spinal stenosis as..." + (show)
@elizadolittle

I've been on 5 mg Prednizone every other day for years. I have spinal stenosis as well. I had a back operation a little over a year ago. After the operation, I was desparate to get off the opioids. I tried Advil. I didn't exceed the daily dose but I took it for a week straight (or more). It sent my blood pressure sky high and I and the doctors thought I was having a heart attack.

Somehow or other I came up on an add on the internet for Heat and Sooth. I tried it. I gradually stopped using it. Then about two weeks ago, I was in constant pain and Tylenol Extra Strength really didn't do anything during the day. I would have a short snooze after dinner. I would wake up pain free and I could work on the computer until midnight or later. The same thing the next day.

I wondered if the Heal and Sooth actually worked so I've gone back on it. I woke up in the middle of last night and realized I was pain feel--and I am still pain free today so far.

I will keep you posted to see if my "snake oil" really works. I have a bottle and a half left over. By the time I finish those, I should have some idea if the Heal and Sooth really works.

One of the reasons I quit using it was because I seemed to be spending more money of health enhancers (Dr. Gundry's MCT, etc.) and an arm's length of vitamins along with the Heal and Sooth.

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Heal n Sooth? Info please.

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jogalady | @jogalady | Apr 26 10:03am

I have had success with acupuncture, anti-inflammatory diet and Cannabis for pain control.

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1 reply
glinda47 | @glinda47 | Apr 26 10:14am
In reply to @trina24 "I could not take Predisone. Dr put me on Actemra Infusion. Is anyone else on that...." + (show)
@trina24

I could not take Predisone. Dr put me on Actemra Infusion.
Is anyone else on that.
It is helping. I go once a month. Theresa

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No side effects from Actemra?
Why can't you take prednisone?
Thanks and best to you, trina! Glad Actemra is helping!

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1 reply
DadCue | @dadcue | Apr 26 10:18am
In reply to @jogalady "I have had success with acupuncture, anti-inflammatory diet and Cannabis for pain control." + (show)
@jogalady

I have had success with acupuncture, anti-inflammatory diet and Cannabis for pain control.

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How did acupuncture help?

I have done 2 acupuncture treatments mostly for neuropathy and lumbar spinal stenosis. I don’t know what is supposed to happen. I have weird sensations where some of the needles are put. I don’t know if weird sensations are better than no sensation. Some spots are painful so the therapist removes those needles. She says I have muscle spasms in those areas.

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1 reply
glinda47 | @glinda47 | Apr 26 10:24am
In reply to @lashley75 "Took Prednisone for nearly 5 months, gained weight, had dizziness…felt my head was full of something…..took..." + (show)
@lashley75

Took Prednisone for nearly 5 months, gained weight, had dizziness…felt my head was full of something…..took myself off slowly…so hoping I can find something that won’t also effect my bones. Taking Jarrow “Boneup” to build n strengthen my bones.

Right now on CBD, which helps a little, not out of pain.

This PMR is frustrating to say the least.

Jump to this post

Lashley, I am the same age (75 in a few weeks), do not want to even consider Pred due to having all the issues caused by taking it. Except diabetes and do not want to add that to the list.
Tell me, does CBD affect you mentally at all? No high or anxiety, right? I know it has none of the psychoactive ingredients found in pot.
Do you take drops, gummies or what? And how do you know it's good quality.
I'm considering Celebrex. Right, this is very frustrating.

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1 reply
ddonnagirl1 | @ddonnagirl1 | Apr 26 11:08am
In reply to @lashley75 "I find myself craving all my exercises, but worry they will increase my number on C-reative..." + (show)
@lashley75

I find myself craving all my exercises, but worry they will increase my number on C-reative Protein blood test, currently at 8.5, however, my pain is as bad as it was when I hit 69.9 blood number in October of last year. I hit that number as I was moving into an apt. and did a lot of the small moving myself, going up n down steps.

Very cautious to start my exercises again, but heavier than I have ever been and very frustrated. I am almost 75.

Jump to this post

Start slowly and be kind to yourself. Every journey begins with the first step. Do 15 minutes and move up from there. I know I put on weight and lost a lot of my muscle mass. I hurt every day but feel better after a Pilates class! I live on Aleve but only twice a day. Sometimes I get so frustrated 😣 but then I remember some people have way worse problems. Good luck to you.

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DadCue | @dadcue | Apr 26 12:30pm
In reply to @trina24 "I could not take Predisone. Dr put me on Actemra Infusion. Is anyone else on that...." + (show)
@trina24

I could not take Predisone. Dr put me on Actemra Infusion.
Is anyone else on that.
It is helping. I go once a month. Theresa

Jump to this post

I do monthly infusions of Actemra too. I did injections of Actemra before changing to monthly infusions. I have been on Actemra for 4 years and I haven’t needed any prednisone for more than 2 years. No problems with Actemra so far. No plans to stop Actemra anytime soon.

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