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.

@jogalady

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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Thanks Joglady. Glad you are finding a way. Unfortunately, I can't tolerate cannabis. Glad it helps you.

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Nothing works for everyone. We just have to keep trying. Good luck.

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Adding my own experience. Diagnosed with PMR in January after an abrupt onset over Christmas. Because of the side effects, I wanted to stay away from prednisone if at all possible. I initially used ibuprofen, but it was not covering the pain. Switched to twice a day Aleve, and I’ve been able to manage the pain this way, along with exercise. Swimming is especially therapeutic, and while the first few laps are uncomfortable, by the end of my swim I’m feeling much better and remain better all day. I also walk and ride my bike. My endurance has been impacted, so I cannot sustain exercise like I used to, but try to move my body in some way every day to minimize potential strength and flexibility loss. I’m trying to cut down on sugars; the rest of my diet is good, no processed foods, etc. Happy to have stayed away from prednisone, but if I have any symptoms of GCA, I will be calling my doc ASAP for a script.

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@leetaanderson

Adding my own experience. Diagnosed with PMR in January after an abrupt onset over Christmas. Because of the side effects, I wanted to stay away from prednisone if at all possible. I initially used ibuprofen, but it was not covering the pain. Switched to twice a day Aleve, and I’ve been able to manage the pain this way, along with exercise. Swimming is especially therapeutic, and while the first few laps are uncomfortable, by the end of my swim I’m feeling much better and remain better all day. I also walk and ride my bike. My endurance has been impacted, so I cannot sustain exercise like I used to, but try to move my body in some way every day to minimize potential strength and flexibility loss. I’m trying to cut down on sugars; the rest of my diet is good, no processed foods, etc. Happy to have stayed away from prednisone, but if I have any symptoms of GCA, I will be calling my doc ASAP for a script.

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Hi @leetaanderson, Welcome to Connect. Sorry to hear you joined the PMR club but happy to see you are able to manage the symptoms without prednisone. It definitely is a good idea to be aware of any GCA symptoms in case it rears it's ugly head. That's one that you really need to watch for when you have PMR. It sounds like you have the eating part down that helps with PMR. You might find the following discussions helpful or interesting to connect with others:

--- Diet & PMR.: https://connect.mayoclinic.org/discussion/diet-pmr/
--- PMR Diet: Foods to eat and avoid: https://connect.mayoclinic.org/discussion/diet-and-pmr/

Do you keep a daily log to track your pain levels in the morning when you get up?

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I could not tolerate
Predisone. Dr put me on
Infusion of Actemra
It is helping. Trina

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@trina24

I could not tolerate
Predisone. Dr put me on
Infusion of Actemra
It is helping. Trina

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That is good to hear! Did you experience any side effects with actemra? Doctor is suggesting that for me to help get me off prednisone.

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@marid57

That is good to hear! Did you experience any side effects with actemra? Doctor is suggesting that for me to help get me off prednisone.

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No side effects. But I asked Dr how
Long I would have to be on it and she said 2 or 3 yrs. Which I did not like.

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@trina24

No side effects. But I asked Dr how
Long I would have to be on it and she said 2 or 3 yrs. Which I did not like.

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I have been on Actemra for more than 4 years. I haven't had any serious side effects from Actemra. I was able to discontinue prednisone in one year after starting Actemra. I "progressed" from doing injections every two weeks at first and then I did weekly injections. I have done monthly infusions for the past year.

My symptoms return whenever Actemra is stopped so my rheumatologist doesn't plan on stopping Actemra anytime soon. I do well on Actemra and my overall quality of life has greatly improved since I discontinued Prednisone. The side effects of prednisone might have caused one medical complication after another.

I took Prednisone for 12 years for PMR before Actemra was tried. I had an inordinate number of medical problems during those 12 years.

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@dadcue

I have been on Actemra for more than 4 years. I haven't had any serious side effects from Actemra. I was able to discontinue prednisone in one year after starting Actemra. I "progressed" from doing injections every two weeks at first and then I did weekly injections. I have done monthly infusions for the past year.

My symptoms return whenever Actemra is stopped so my rheumatologist doesn't plan on stopping Actemra anytime soon. I do well on Actemra and my overall quality of life has greatly improved since I discontinued Prednisone. The side effects of prednisone might have caused one medical complication after another.

I took Prednisone for 12 years for PMR before Actemra was tried. I had an inordinate number of medical problems during those 12 years.

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Thank you.

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I was on 60 mgs as well since September, 2023, and I have to say recovery hasn't been too bad. However, when I went from 7.5 mg of Prednisone to 5 mg. The pain was a 10 out of 10. After 3 days of severe pain, I decided to take 2 Advil and felt better in an hour. The pain never came back. However, I was later told I should not be taking Advil at all. I recommend you speak to your doctor first before taking any kind of pain medication. I'm now on 4 mg of Prednisone and will be dropping down to 3 mg's as of next Wednesday. Hoping that goes well. I'll give you an update as I go along.

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