1. < Polymyalgia Rheumatica (PMR)
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I keep relapsing when I try to get off prednisone

Posted by yeb @yeb, Jun 22, 2024

I was diagnosed with PMR in 2015. I keep trying to get off prednisone but every time I get to 4mg I relapse and have to go back to 15 or 20 and start over. Very discouraging. I want my life back. I have tried weekly methotrexate with the prednisone but it does not seem to help. Any suggestions would be greatly appreciated!

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carolinlv | @carolinlv | Jul 11, 2024
In reply to @pmrsuzie "I have been taking Zetia for awhile. I thought I was having problems with atorvastatin and..." + (show)
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I have been taking Zetia for awhile. I thought I was having problems with atorvastatin and then pravastatin. I had fingers that would contract and lock, thumb and index finger mostly. When I stopped taking the statin, this problem stopped. Reading about statin side effects made me think the statin was the culprit. Have not had this happen since. I recently started blaming my upper leg aching on the zetia so I have temporarily stopped taking it. I did talk to my pcp about it. The upper leg aching has stopped.
Anyway, here's a short video about statin induced myopathy:
https://m.youtube.com/watch

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Thanks for the video! Very helpful and more information that I get from any of my three doctors☹️

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Mike | @dadcue | Jul 11, 2024
In reply to @pmrsuzie "I have been taking Zetia for awhile. I thought I was having problems with atorvastatin and..." + (show)
Profile picture for pmrsuzie @pmrsuzie

I have been taking Zetia for awhile. I thought I was having problems with atorvastatin and then pravastatin. I had fingers that would contract and lock, thumb and index finger mostly. When I stopped taking the statin, this problem stopped. Reading about statin side effects made me think the statin was the culprit. Have not had this happen since. I recently started blaming my upper leg aching on the zetia so I have temporarily stopped taking it. I did talk to my pcp about it. The upper leg aching has stopped.
Anyway, here's a short video about statin induced myopathy:
https://m.youtube.com/watch

Jump to this post

I liked the video, This doctor raised more questions about statin induced myopathy than he answered.

I told my rheumatologist that I didn't think atorvastatin was causing any problems. Yes ... my CK level was elevated but is that conclusive evidence? When my last lipid panel and CK level were checked after 2 months of Zetia, everything looked good to me. I'm going to suggest they stop checking those labs and the problem is solved.

I don't care if I take Zetia or not. However, I must confess that I liked it when I wasn't taking anything for my cholesterol level. Since I tapered off prednisone, five medication dominoes have fallen. I go into my doctor's visits wondering what medication we will stop next. I forgot---my ophthalmologist told me to stop cosopt eye drops for my intraocular pressures. That makes six medications that have been discontinued

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sharon44r | @sharon44r | 13 hours ago
In reply to @yogabonnie "bones. I have osteoporosis. And had it before prednisone. Now have been on prednisone for 7..." + (show)
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bones. I have osteoporosis. And had it before prednisone. Now have been on prednisone for 7 years. my spine got to -3.5 and for the last 2 years I have been doing heel drops (google ..you just go up on toes and clunk heels to floor not so so hard just a little shock effect) and my last DEXA shows -2.7 which is almost back to osteopenia!! NO meds for osteoporosis. So it can be improved naturally. I have the same flaring problem. get below 2mg. and PMR pain comes back. seeing a rheumatologist in 2 weeks. Not sure what to do. but hoping all will be better. My hips stayed the same on the new dexa. -2.1 around there. Anyway just thought you might be interested.
I am hoping to stay will low prednisone rather than try the new drugs. devil you know and all. but will stay open to what doc says.

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I have been on prednisone 4 years and at 6 mgs. Did you legs get weak from it. I am now walking with a cane. I too have osteoarthritis and will not take those meds they want to give me. I have enough issues already.
I will look up you toe exercises. I do try things like that but my legs are very weak.
Good luck, and thx 🤗

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jabrown0407 | @jabrown0407 | 8 hours ago
In reply to @sharon44r "I have been on prednisone 4 years and at 6 mgs. Did you legs get weak..." + (show)
Profile picture for sharon44r @sharon44r

I have been on prednisone 4 years and at 6 mgs. Did you legs get weak from it. I am now walking with a cane. I too have osteoarthritis and will not take those meds they want to give me. I have enough issues already.
I will look up you toe exercises. I do try things like that but my legs are very weak.
Good luck, and thx 🤗

Jump to this post

@sharon44r I have PMR and GCA as well as OA in my knees and shoulders. I get hyaluronic acid (the Jell advertised on TV) injections in my knees twice a year. Medicare covers this. I also get them in my shoulders as needed - 8-10 months apart. The shoulder injections are private pay because the US is the only country in the world that the hyaluronic acid is not approved for shoulders. Those are pricy but it avoids prednisone injections which insurance will cover.

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