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I have to get off of the prednisone due to the worsening of my osteoporosis so in my mind, no going back to any previous dose......I just live with the pain. My rheumy suggested hydroxychloquine to help with inflammation but I got a scary rash head to toe. I'm surviving on tylenol a couple times per day. The PMR arrived shortly after I had a senior flu shot and two weeks later the covid booster....but doctors won't connect it since they say no scientific proof. I was in great shape before this and after two years, at 75, I'm not sure how much longer I have to deal with this, however there are so many worse things. My CRP is at 24 so the PMR appears still active. I've recently read that low dose naltrexone can help but again, numerous side effects. Also I'm very hesitant to take osteoporosis drugs due to ugly side effects. Has anyone ahd a good experience with these drugs? Thanks for your input.
Replies to "I have to get off of the prednisone due to the worsening of my osteoporosis so..."
Low dose naltrexone has produced no side effects at all for me. Although it has been great for neuropathy, I cannot detect any help with PMR. I need just as much prednisone.
@riji where do you live ? there is a Novartis trial recruiting people that are having a PMR flare as i understand the criteria - there is a conversation i started called Clinical Trials
And /or ask you doctors to consider Kevzara to help your tapering
you wrote : "I have pain in shoulders and biceps and upper thighs and knees which makes it hard to do some things but I force myself to walk and exercise when I can."
Interesting that you are having the classic pain symptoms with elevated CRP - i have been tracking symmetrical pain in shoulders biceps and joint pain in both thumbs during the past month or so BUT without elevated CRP /ESR. so since i have a history of cervical spine radiculopathy - i am guessing this is my issue.
I have been on Alendronate (a fosomax substitute) for two years now and my bone density has improved significantly. I got PMR last year and have been on prednisone for about 6 months. I've tapered to 14 mg so far. I've stepped up other activities to help prevent bone loss - food, exercise - and have concentrated on balance and safety. So far so good... Though I too will be working on that taper process as quickly as possible!
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After I was diagnosed with PMR (May 2023), I had a dexa scan which indicated that my osteopenia was getting worse. Because I was taking prednisone (along with mega calcium, vit D and vit K), doc wanted me to begin taking fozamax as a preventative measure. I am on a low dose (35 mg) once a week. The hope is that my osteopenia can be stabilized. So far I have had no side effects. I will have another bone scan in 6 months to determine how to proceed. Right now I am tapering off prednisone (4 mg at present), but I don’t know if my body will tolerate a complete cessation of prednisone. I am 77, in good health otherwise, and don’t want to live with pain or possibility of stress fractures. I am trying to take this condition one day at a time. Every morning when I get out of bed without pain, I am happy. Liz Ward