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Weaning off of prednisone & pain management

Polymyalgia Rheumatica (PMR) | Last Active: Oct 25 10:23am | Replies (156)

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@jen73

I am new to this support group but not PMR. Back in the summer of 2022 my doctor gave me 10 MG of pravastatin. The pains in my legs started and continued after I stopped the statin. It took 3 months of suffering before I was diagnosed with PMR. My legs were scanned and I was sent for 3 weeks of physical therapy. Finally, on a trip to the rheumatologist with my blood work results in hand, I got some help. My blood test results were normal but the WBC and a few other things were elevated. More blood work identified the problem. I started out on 15MG of prednisone and gradually the dosage was decreased over many months. Tried to get off of it at 2 MG a day after I found out that my cholesterol jumped from 212 to 243. Besides that, it affects the osteoporosis that I am already being treated for. I was so miserable off the drug that I am now back on 5MG and hoping to drop 1MG a month. I am so over dealing with this and wish they had just left me alone. I could have brought the cholesterol down on my own. Has anyone else had a statin drug trigger the PMR? It is nice to know that I am not the only suffering with this.

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Replies to "I am new to this support group but not PMR. Back in the summer of 2022..."

Welcome @jen73, I've had 2 occurrences of PMR but it is fortunately now in remission for the second time and I'm hoping it stays that way. I did find some information on your question that you may find interesting if not helpful.

--- If something looks like an apple, is it necessarily an apple? – reflections on so-called “statin-induced polymyalgia rheumatica”: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6710838/.

I don't think any of us like being on prednisone but for most of us it is the magic pill that make the symptoms go away. Have you tried any natural ways to lower your cholesterol numbers?

I definitely think that some of us react badly to some of the inactive ingredients in commonly prescribed drugs, and suspect that PMR may be caused by them, whether in a medication, vaccination, supplement, cosmetic or other environmental exposure, etc.

The inactive ingredients in pravastatin include: calcium phosphate dibasic, crospovidone, lactose, magnesium stearate, microcrystalline cellulose, and povidone.

Unfortunately, no attention at all is paid by doctors to the inactive ingredients in drugs they prescribe or supplements we take and the effect they have on us, so we will likely not identify the additive in question.

YES! This happened to my father. Well, there’s no way to be 100% sure, but more than one of my father’s specialists (including his cardiologist) mentioned afterward that statins are at least associated with arthralgias, and in a very small number of susceptible people, they may trigger an autoimmune response—and my dad has a strong family history of autoimmune conditions.

He was put on the highest dose possible of atorvastatin even though he didn’t have high cholesterol, but he had some signs of plaque in his arteries, probably from being a former smoker. “Guidance” dictated the recommendation from his doctor, which I feel should never have happened because he’s extremely sensitive to medication.

Over the course of the next few months, he had increasing muscle pains and fatigue, until finally it was what we now know as the debilitating PMR symptoms. He was advised to stop the statin, but his CK (used to see if statins are causing muscle damage in this case) was normal. His PCP ran all sorts of labs, including ESR and CRP, which were through the roof—and he didn’t know what to make of it and was referring him to a hematologist.

Whereas we Googled the various lab values and recognized the likely symptoms of PMR, but his PCP refused to see us and thought we were crazy. On the third phone call, my mom left one last desperate message asking the doctor to please research PMR (our backup plan was going to the ER), and only after that did he send a prednisone prescription.

We got lucky and found an open rheumatology appointment quickly, and she diagnosed him immediately, but this was still at least a month after the most severe symptoms began. We were monitoring him for GCA, but sadly he had a stroke two weeks later. He survived and is attempting to recover, but our lives will never be the same. We’ll never know if it was GCA or all just a coincidence. He was out on IV steroids in the hospital.

There’s really no way to know for sure if the statin triggered it, and the population that’s most affected by PMR often takes statins. But my dad never took any medication prior to the statin, and it really wasn’t necessary to put him immediately on the highest dose.

I’d never heard of PMR before, but looking into it, it’s sadly not that uncommon. It always makes me angry how much of a hurdle it is for many to get diagnosed. I feel it’s part ageism. But I digress…

You’re right, it is good to know we’re not the only ones. I hope this slower taper works for you and thanks for sharing.