Weaning off of prednisone & pain management

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?

John, Thank you for the article. Very interesting. One Dr said no to it causing the PMR, my primary agrees that it triggered it. The pain is mostly in my thigh muscles and upper right arm .
The prednisone is definitely the magic pill as much as I hate being on it.
I take all kinds of natural supplements for the cholesterol, along with diet and exercise. Really working on getting it down on my own. I have become very drug wary.
Thanks for taking the time to answer, I really appreciate it. Hoping you stay in remission.

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.

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.

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.

I also have had a cholesterol problem, probably genetic from my dad. I tried a couple statins, thought they caused muscle contractions in my hand, so my pcp suggested zetia, 10 mg. I am splitting the tablets in half, my last cholesterol test was 170 so I feel okay that a minimal dose is working.

Starting in October, initially on P20, my dose had to be adjusted to P30 to tame the PMR beast. I started tapering after 30 days at 5 per month, then 1 per month, now down to P7.
During my last rheumy visit in January, she said my inflammation markers were now normal, and we were no longer treating PMR. The goal is therefore to get off the prednisone as quickly and safely as possible, and to therefore continue the 1mg monthly taper. Also, that my wrist pains could be expected to continue, and that I could take Tylenol, NOT any NSAID due to the conflict with the prednisone.
During a routine cardiology visit in February, I happened to mention my ongoing wrist and thumb pain (which at that time was up to level 3 in the morning, but went away by 3PM). My cardiologist ordered a wrist Xray which did not disclose any sign of any of the arthritises. Also, my RA lab was normal. And so, the morning wrist pain remains an undiagnosed mystery which I will continue to willingly tolerate, especially as I recently increased my morning Tylenol to 1000mg which make me pain-free by 10AM. In any case, this morning pain is almost certainly NOT something that should be treated with an increased dose of prednisone. Unless it can be determined using testing that the pain is in fact or probably PMR, increasing the prednisone is probably not the correct solution for so many reasons, the main one being that it might make tapering to zero much more difficult without risking adrenal insufficiency.
My rheumy did give me permission to use OTC topical diclofenac 1% on my wrists if desired. Although diclofenac is an NSAID, if used topically only about 5% gets into your circulatory system and therefore does not create a problem with the concurrent prednisone as it would do if the diclofenac were taken orally in pill form. For the time being, I have decided that my current pain profile does not warrant experimenting with yet another drug.
Thought for the day: After being treated for PMR, returning pain is not always PMR, and should not be automatically treated with an increased dose of prednisone without testing and a doc agreeing.
Best of luck to everyone…this too shall pass !

Starting in October, initially on P20, my dose had to be adjusted to P30 to tame the PMR beast. I started tapering after 30 days at 5 per month, then 1 per month, now down to P7.
During my last rheumy visit in January, she said my inflammation markers were now normal, and we were no longer treating PMR. The goal is therefore to get off the prednisone as quickly and safely as possible, and to therefore continue the 1mg monthly taper. Also, that my wrist pains could be expected to continue, and that I could take Tylenol, NOT any NSAID due to the conflict with the prednisone.
During a routine cardiology visit in February, I happened to mention my ongoing wrist and thumb pain (which at that time was up to level 3 in the morning, but went away by 3PM). My cardiologist ordered a wrist Xray which did not disclose any sign of any of the arthritises. Also, my RA lab was normal. And so, the morning wrist pain remains an undiagnosed mystery which I will continue to willingly tolerate, especially as I recently increased my morning Tylenol to 1000mg which make me pain-free by 10AM. In any case, this morning pain is almost certainly NOT something that should be treated with an increased dose of prednisone. Unless it can be determined using testing that the pain is in fact or probably PMR, increasing the prednisone is probably not the correct solution for so many reasons, the main one being that it might make tapering to zero much more difficult without risking adrenal insufficiency.
My rheumy did give me permission to use OTC topical diclofenac 1% on my wrists if desired. Although diclofenac is an NSAID, if used topically only about 5% gets into your circulatory system and therefore does not create a problem with the concurrent prednisone as it would do if the diclofenac were taken orally in pill form. For the time being, I have decided that my current pain profile does not warrant experimenting with yet another drug.
Thought for the day: After being treated for PMR, returning pain is not always PMR, and should not be automatically treated with an increased dose of prednisone without testing and a doc agreeing.
Best of luck to everyone…this too shall pass !