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 😊

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

Mentor
John, Volunteer Mentor | @johnbishop | Apr 26 1:08pm
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.

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Hello @lashley75, Welcome to Connect. PMR can be difficult to manage to say the least. Sorry to hear the prednisone didn't help. Have you discussed alternative treatments with your doctor or rheumatologist?

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lashley75 | @lashley75 | Apr 26 1:46pm

Primary gave me an option of two pills. Neither I would want to take.

I am on CBD oil an it helps a little.

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trina24 | @trina24 | Apr 26 2:28pm
In reply to @dadcue "I do monthly infusions of Actemra too. I did injections of Actemra before changing to monthly..." + (show)
@dadcue

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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Thank you. You are only other person who is on it. I have only been on it for 3 months. Don’t know how long I will have to stay on it. Trina

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trina24 | @trina24 | Apr 26 2:31pm
In reply to @glinda47 "No side effects from Actemra? Why can't you take prednisone? Thanks and best to you, trina!..." + (show)
@glinda47

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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Predisone kept me up at night & made me more anxious that I already am. Glad you can take it. Trina

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glinda47 | @glinda47 | Apr 26 4:32pm

No!!! I can't take pred. I have all the issues it causes including osteo, severe anx and insomnia. I applaud you for trying it.

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1 reply
trina24 | @trina24 | Apr 26 5:11pm
In reply to @glinda47 "No!!! I can't take pred. I have all the issues it causes including osteo, severe anx..." + (show)
@glinda47

No!!! I can't take pred. I have all the issues it causes including osteo, severe anx and insomnia. I applaud you for trying it.

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What are you taking ? Best to you
Glenda. Trina

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1 reply
glinda47 | @glinda47 | Apr 26 5:37pm
In reply to @trina24 "What are you taking ? Best to you Glenda. Trina" + (show)
@trina24

What are you taking ? Best to you
Glenda. Trina

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Nothing yet. I meet with my doc after an ultrasound next week. I'm going to ask about Celebrex and LDN.

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jogalady | @jogalady | Apr 27 9:42am
In reply to @dadcue "How did acupuncture help? I have done 2 acupuncture treatments mostly for neuropathy and lumbar spinal..." + (show)
@dadcue

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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The acupuncture was targeted at the areas which were most painful at the time, starting in my shoulder. I had been to the acupuncture practitioner before this, so I was comfortable with the procedure.

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jogalady | @jogalady | Apr 27 11:11pm
In reply to @glinda47 "Lashley, I am the same age (75 in a few weeks), do not want to even..." + (show)
@glinda47

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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I get my Cannabis from a Gov't
Licensed shop, so I can trust the content. It does affect my short term memory, and can give me strange dreams. I tried edibles and drops and had disagreeable veffects. I use a good quality vaporizer.
My acupuncturist is also a physiotherapist. I practice yoga and was advised to only do chair yoga for now.

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