Anyone successfully treating PMR without Prednisone?

Posted by ann31 @ann31, Jul 25 1:44pm

I am in severe pain with soreness aching in shoulders, upper back, both hips and now headache. I am starting to get some numbness in both hips. I was treated for GCA several years ago starting at 60mg prednisone. Within 6 months I was down to 5mg then a flare so doctor put me back up to 80mg but quickly got me down to 20mg. I continued tapering over the following 6months then off. I had some lasting side effects and watching for in infections from dental work so I am very fearful of taking Prednisone again. This came on gradually over the past month. I called my Rheumatologist to ask if Plaquenil or Methotrexate would hep but he insist this is from long standing Fibromyalgia due to labs normal for inflammation. I can barely walk, stand up or turn over in bed. Taking 400mg Gabepentin daily as Dr recommends. No help. I have never had this severe pain from Fibromyalgia. My husband came down, suddenly, with PMR about 10 years ago with symptoms like I now have. His gradually cleared with Plaquenil and Methotrexate. Has anyone had success treating this type pain with OTC meds such as Omega or Bromelain or anything else?

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

Profile picture for tuckerp @tuckerp

I would say whether it was by luck or a educated effort but you treated your PMR exactly right. According to Dr Megan you should always move to your lowest helpful dose. Being on 5mg for 18months was not nearly as hard on you. Diet can play an important part. I think a large percent of us feel sort of immune fatigue even after being off prednisone. But could be old age. Good job on your journey through this. (:

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Thank you for your kind comment. I did watched Dr. Meagan’s YouTube. It was very informative and helpful.

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My opinion, you have PMR. Arguingvwith my rheumatologist about this samthung.
Labs are not elevated with Fibromalgia, that I know of.

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Profile picture for nm11643 @nm11643

I was prescribed 15mg/day for my PMR. Even though I only took 10mg/day prednisone considering my 105LB body weight, I could not sleep for the first three days. So I had to reduced it to 5mg/day in order to get a few hours sleep every night. It took me 18 month to get out of prednisone. During those days, I always feel some discomfort, especially in the morning. I took some anti inflammatory supplements and always be mindful about what I eat.

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Thank you for this detailed account. It’s quite striking how much medical knowledge …and fortitude…you had to acquire over the years. I’m inspired to lean in and try to do the same, as I begin my own PMR journey I’d never wish on anyone. So no apologies for the length! That’s what brings your narrative so vividly alive. Best of luck going forward.

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Profile picture for nm11643 @nm11643

Thank you for your kind comment. I did watched Dr. Meagan’s YouTube. It was very informative and helpful.

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you can do a search for her videos. I think this has a bunch of them. https://www.youtube.com/channel/UCUeX9oE0THqYXCO7NgTwv3w
I am not suggesting you watch any of them. Just passing on information from a well educated pharmacist that has spent her life trying to understand prednisone. She is fellow sufferer passing along her information and knowledge. She also sells a product but I have never purchased it and would always tell you that she cannot replace your Dr. But she can give you knowledge. Just as you and I have found that this site helps to educate you. Like Dadcue mentioned she has a message that I find is worth listening to. It can be rather lengthy so I usually fast forward through some of it.

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As many have read I worked with a naturopath who put me on an anti- inflammatory diet. I also got myself into a pool during senior time to move and walk as felt good—it really continues to be wonderful therapy. I used something called SPM Active dietary supplement when I had trouble decreasing my prednisone doses. (You take that for a week in conjunction with the prednisone.) I’m down to .5mg/.25mg split and am experiencing some PMR pain (neck, shoulders, hips) but I am also now taking Life Extension Discomfort Relief (chewable tablet, 1-2x/day) to help. It seems to help. With every decrease I need a little something to ease the pain. It’s transition pain I tell myself—and remind myself what I’ve read here that withdrawal from prednisone mimics PMR symptoms. I stay on an even keel with a steady dosage and when I go down (by .25 mg. at this point) and use these aids. I might also use acetaminophen, arthritis strength. Still doing pool therapy; still leaning into an anti-inflammatory diet. Once I am weaned entirely I hope I can avoid a flare, of course. It feels like a real danger because of the difficulty in decreasing doses, even at this low level. (I decreased by 5 mg at first and then thought of the decreases in terms of percentages instead of set increments.) I also sometimes waver going down and back up , down and back up, until I just stay at the lower level. It feels like tricking my body into a lower dosage.
Another thing my naturopath told me was that turmeric -curcumin counteracts prednisone so avoid it. Likewise NSAIDS (ibuprofen). I am hoping by living healthfully I can stay away from all meds—but they do serve their purpose, welcome immediate relief—when home measures don’t help.
BTW, Gabapentin is another very problematic drug. It works—but how can you stop taking it? One of my friends had a psychotic episode upon taking it. My husband could never get off it.

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Profile picture for tuckerp @tuckerp

you can do a search for her videos. I think this has a bunch of them. https://www.youtube.com/channel/UCUeX9oE0THqYXCO7NgTwv3w
I am not suggesting you watch any of them. Just passing on information from a well educated pharmacist that has spent her life trying to understand prednisone. She is fellow sufferer passing along her information and knowledge. She also sells a product but I have never purchased it and would always tell you that she cannot replace your Dr. But she can give you knowledge. Just as you and I have found that this site helps to educate you. Like Dadcue mentioned she has a message that I find is worth listening to. It can be rather lengthy so I usually fast forward through some of it.

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Thank you so much for taking time to share your thoughts. I really appreciate it. I learned a lot from Dr. Megan’s YouTube posts. I am a retired medicinal chemist, yet I knew little about prednisone before I have to work with it. Prednisone was very effective on reducing the pain and stiffness, but its side effects were obvious. Even at relatively lower doses, it had some negative effects on my blood pressure, bone density, hair. It has been six months since I took the last dose. I am recovering from the damage of prednisone:)! Thank you again for your help and encouragement. Wishing you all the best on this journey.

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Methotrexate is the only thing that helps me..

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I’m down to 12.5 prednisone and also methotrexate. Will soon be trying KEVZARA. We’ll see? Anyone try it to get off Prednisone and
Methotrexate?

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I’m sorry that I don’t know how to edit my last comment. So, is anyone on KEVZARA and are there any issues trying to come off of it?

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I have been on Actemra Infusion
For almost 1 yr. It has helped. No Predisone. Theresa

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