1. < Polymyalgia Rheumatica (PMR)

Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Posted by Ethan McConkey, Moderator @ethanmcconkey, Dec 18, 2019

Welcome to the Polymyalgia Rheumatica (PMR) group on Mayo Clinic Connect.

Meet other members who are dealing with PMR. Let’s learn from each other and share stories about living well with PMR, coping with the challenges and offering tips.We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of coffee or beverage of choice and let’s chat. Why not start by introducing yourself? What's your experience with PMR? How are you doing today?

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

karinaph | @karinaph | Mar 3, 2021
In reply to @johnbishop "I had my doubts that CBD would work in place of prednisone but now I'm not..." + (show)
@johnbishop

I had my doubts that CBD would work in place of prednisone but now I'm not sure. I know people have had success with the pain but didn't think that CBD would address the source of the pain in PMR which is inflammation. I did find an article that does support that it might work but I'm not sure.

"CBD may offer an option for treating different types of chronic pain. A study from the European Journal of Pain showed, using an animal model, CBD applied on the skin could help lower pain and inflammation due to arthritis. Another study demonstrated the mechanism by which CBD inhibits inflammatory and neuropathic pain, two of the most difficult types of chronic pain to treat. More study in humans is needed in this area to substantiate the claims of CBD proponents about pain control."
- Cannabidiol (CBD) — what we know and what we don’t: https://www.health.harvard.edu/blog/cannabidiol-cbd-what-we-know-and-what-we-dont-2018082414476

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Hi John, This subject came up a few months ago and it caught my eye, as I was taking a CBD tincture at bedtime. The discussion, as I recall suggested that this was not necessarily a good therapy while taking Prednisone. The person seemed to know that the pathways that both CBD and Prednisone use are similar, so that it was contraindicated to combine the two. Do you recall this? I can't find the discussion, there are quite a few strings on PMR and related aspects of the condition, a lot to sift through. Anyway, I stopped taking my CBD tincture and haven't looked back. I've been able to very slowly taper my prednisone but still at 9 mg. If anyone knows the person/string that addressed this, please remind me. thanks. Karen

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 3, 2021
In reply to @karinaph "Hi John, This subject came up a few months ago and it caught my eye, as..." + (show)
@karinaph

Hi John, This subject came up a few months ago and it caught my eye, as I was taking a CBD tincture at bedtime. The discussion, as I recall suggested that this was not necessarily a good therapy while taking Prednisone. The person seemed to know that the pathways that both CBD and Prednisone use are similar, so that it was contraindicated to combine the two. Do you recall this? I can't find the discussion, there are quite a few strings on PMR and related aspects of the condition, a lot to sift through. Anyway, I stopped taking my CBD tincture and haven't looked back. I've been able to very slowly taper my prednisone but still at 9 mg. If anyone knows the person/string that addressed this, please remind me. thanks. Karen

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Hi Karen @karinaph, Sorry I wasn't able to locate the post you mentioned but I think @artscaping has a lot of experience and knowledge of using CDB tinctures and may be able to provide some information. I wonder if this was what they were referring to:

Does CBD Oil Interact with Prednisone?: https://wayofleaf.com/cbd/101/does-cbd-oil-interact-with-prednisone

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2 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Mar 3, 2021
In reply to @johnbishop "Hi Karen @karinaph, Sorry I wasn't able to locate the post you mentioned but I think..." + (show)
@johnbishop

Hi Karen @karinaph, Sorry I wasn't able to locate the post you mentioned but I think @artscaping has a lot of experience and knowledge of using CDB tinctures and may be able to provide some information. I wonder if this was what they were referring to:

Does CBD Oil Interact with Prednisone?: https://wayofleaf.com/cbd/101/does-cbd-oil-interact-with-prednisone

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Good evening @karinaph, congratulations @johnbishop, you found a good article, and yes it does use science to point to some issues with the mixing of CBD with prednisone. That is the first I have read about it. I think you have to be aware that there may be an unwelcome interaction between cannabis and prescription medications. As more dollars are set aside for these kind of studies, we will feel more comfortable with making sure about our options and choices. For that to happen we need cannabis to be legal.

One point that this series of articles makes authentically is that companies who use third-party testing and are open about the sources of full-spectrum plants they use in their CBD are more likely to be more successful and then able to afford these additional examinations of the products. Let's stay connected. I am happy to help with the research whenever you need it.

May you be free of suffering and the causes of suffering.
Chris

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alanmp | @alanmp | Mar 6, 2021

Hello everyone, thought I would share my experience with PMR... Diagnosed 12/1/19 when I thought my life would be over in few months. Like most of you I can't overstate the pain & stiffness in my shoulders, hips and knees. Went on 20mg prednisone & 200mg plaquenil (hydroxychloroquine) and was saved. Never had any side effects and gained no weight. Attempted to taper off early last summer and quickly discovered that was not going to work. Finally tapered off last September. Still suffer from tightness and shoulder pain occasionally. When it flares badly I'll take the prednisone for a couple days and get back to "normal". Normal being stiff most mornings till I do my stretches and exercises, some days worse than others...
When originally diagnosed by my wife's GP (had no Doctor, never been sick), I was under the impression this would last six months to a year. After reading some of the stores I now realize this may be a long term deal. That did not make my day. FWIW, I'm 68, very fit, active and would like to keep it that way. So far, so good but, as you all know, it can be a struggle. Received the Pfizer shots a month ago with only feeling a bit "wonky" after shot two. That's about it, would be happy to answer any questions or inquiries. Wish all of you the best of luck... Alan P.

REPLY
3 replies
Jeff Down Under | @legendts | Mar 6, 2021
In reply to @alanmp "Hello everyone, thought I would share my experience with PMR... Diagnosed 12/1/19 when I thought my..." + (show)
@alanmp

Hello everyone, thought I would share my experience with PMR... Diagnosed 12/1/19 when I thought my life would be over in few months. Like most of you I can't overstate the pain & stiffness in my shoulders, hips and knees. Went on 20mg prednisone & 200mg plaquenil (hydroxychloroquine) and was saved. Never had any side effects and gained no weight. Attempted to taper off early last summer and quickly discovered that was not going to work. Finally tapered off last September. Still suffer from tightness and shoulder pain occasionally. When it flares badly I'll take the prednisone for a couple days and get back to "normal". Normal being stiff most mornings till I do my stretches and exercises, some days worse than others...
When originally diagnosed by my wife's GP (had no Doctor, never been sick), I was under the impression this would last six months to a year. After reading some of the stores I now realize this may be a long term deal. That did not make my day. FWIW, I'm 68, very fit, active and would like to keep it that way. So far, so good but, as you all know, it can be a struggle. Received the Pfizer shots a month ago with only feeling a bit "wonky" after shot two. That's about it, would be happy to answer any questions or inquiries. Wish all of you the best of luck... Alan P.

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I think we all may have thought it would be a quick fix Alan but I fear it will be something most of us will have to live with. Not what any of us want but life is what it is. Keep safe and keep active. 😁

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 6, 2021
In reply to @alanmp "Hello everyone, thought I would share my experience with PMR... Diagnosed 12/1/19 when I thought my..." + (show)
@alanmp

Hello everyone, thought I would share my experience with PMR... Diagnosed 12/1/19 when I thought my life would be over in few months. Like most of you I can't overstate the pain & stiffness in my shoulders, hips and knees. Went on 20mg prednisone & 200mg plaquenil (hydroxychloroquine) and was saved. Never had any side effects and gained no weight. Attempted to taper off early last summer and quickly discovered that was not going to work. Finally tapered off last September. Still suffer from tightness and shoulder pain occasionally. When it flares badly I'll take the prednisone for a couple days and get back to "normal". Normal being stiff most mornings till I do my stretches and exercises, some days worse than others...
When originally diagnosed by my wife's GP (had no Doctor, never been sick), I was under the impression this would last six months to a year. After reading some of the stores I now realize this may be a long term deal. That did not make my day. FWIW, I'm 68, very fit, active and would like to keep it that way. So far, so good but, as you all know, it can be a struggle. Received the Pfizer shots a month ago with only feeling a bit "wonky" after shot two. That's about it, would be happy to answer any questions or inquiries. Wish all of you the best of luck... Alan P.

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Hello Alan @alanmp, Welcome to Connect. Thank you for sharing your experience with PMR. That first time it hits you does feel like your life is close to being over. I think you have the best mindset to deal with PMR. Lifestyle is key - stay active, eat healthy and take it one day at a time. I'm 77 and have had 2 bouts with PMR. First one in 2007 and it lasted until mid 2010 when I was finally able to taper off of prednisone with just minor aches. It stayed in remission until mid 2016 and I went back on prednisone for a year and half until I could again taper off with little or no pain. I'm hoping I never have to deal with it again but who knows so we just have to take it a day at a time, one step at a time.

If you don't mind my asking, what brought you to Connect? Were you searching for some answers?

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1 reply
alanmp | @alanmp | Mar 6, 2021
In reply to @johnbishop "Hello Alan @alanmp, Welcome to Connect. Thank you for sharing your experience with PMR. That first..." + (show)
@johnbishop

Hello Alan @alanmp, Welcome to Connect. Thank you for sharing your experience with PMR. That first time it hits you does feel like your life is close to being over. I think you have the best mindset to deal with PMR. Lifestyle is key - stay active, eat healthy and take it one day at a time. I'm 77 and have had 2 bouts with PMR. First one in 2007 and it lasted until mid 2010 when I was finally able to taper off of prednisone with just minor aches. It stayed in remission until mid 2016 and I went back on prednisone for a year and half until I could again taper off with little or no pain. I'm hoping I never have to deal with it again but who knows so we just have to take it a day at a time, one step at a time.

If you don't mind my asking, what brought you to Connect? Were you searching for some answers?

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John,
The recent flare ups were a bit more severe than I'm used to. Had some time this morning, thought I'd search a bit for a forum or user group to see if anyone "out there" had similar experiences. Read your story and, to be honest, set me back. Thought maybe I was an outlier with still having issues almost a year and half later. Well, now I know better... And better to know than to wonder. As I said, I never get sick so this thing came as a real shock. OK, have to adjust a bit and hunker down for a longer term. Can do.
If there anything I can do to help with anyone else, please let me know.
Alan P

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karinaph | @karinaph | Mar 6, 2021
In reply to @johnbishop "Hi Karen @karinaph, Sorry I wasn't able to locate the post you mentioned but I think..." + (show)
@johnbishop

Hi Karen @karinaph, Sorry I wasn't able to locate the post you mentioned but I think @artscaping has a lot of experience and knowledge of using CDB tinctures and may be able to provide some information. I wonder if this was what they were referring to:

Does CBD Oil Interact with Prednisone?: https://wayofleaf.com/cbd/101/does-cbd-oil-interact-with-prednisone

Jump to this post

Very good article John, thanks for sharing. Bottom line, it appears it’s CBD or Pred but not both, that was my takeaway. Again, thanks

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andy1954 | @andy1954 | Mar 7, 2021

Has anyone had issues with smelling things as burning rubber or cigarettes?

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2 replies
virginiaj | @virginiaj | Mar 8, 2021
In reply to @alanmp "Hello everyone, thought I would share my experience with PMR... Diagnosed 12/1/19 when I thought my..." + (show)
@alanmp

Hello everyone, thought I would share my experience with PMR... Diagnosed 12/1/19 when I thought my life would be over in few months. Like most of you I can't overstate the pain & stiffness in my shoulders, hips and knees. Went on 20mg prednisone & 200mg plaquenil (hydroxychloroquine) and was saved. Never had any side effects and gained no weight. Attempted to taper off early last summer and quickly discovered that was not going to work. Finally tapered off last September. Still suffer from tightness and shoulder pain occasionally. When it flares badly I'll take the prednisone for a couple days and get back to "normal". Normal being stiff most mornings till I do my stretches and exercises, some days worse than others...
When originally diagnosed by my wife's GP (had no Doctor, never been sick), I was under the impression this would last six months to a year. After reading some of the stores I now realize this may be a long term deal. That did not make my day. FWIW, I'm 68, very fit, active and would like to keep it that way. So far, so good but, as you all know, it can be a struggle. Received the Pfizer shots a month ago with only feeling a bit "wonky" after shot two. That's about it, would be happy to answer any questions or inquiries. Wish all of you the best of luck... Alan P.

Jump to this post

I got my first bout when I was 57, 2 years on prednisone. It recurred about 12 years later. I came off prednisone in 10 months. I realize that was a mistake as It recurred again 10 months later. I have now been on prednisone for 15 months. Currently on 5 mg as a base, occasionally 6. Tried to get to 4 but unsuccessful. I do stay active, my husband and I walk an hour a day, do a zoom aerobics class. Pre-pandemic, I did a lot of grandchild care and hope to get back it it. Don’t like to be on prednisone, but it makes a normal life possible. I learn a lot from forum and others, especially how long it takes to go into remission. I am currently 74 and tend to feel I will be dealing with this a long time

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