PMR: Are there treatment alternatives to Prednisone?
Hi, all. I'm wondering if anyone is finding any alternatives to Prednisone in treatment of PMR?
I've been on the PMR/Prednisone train for about 6 months now (was in pain and stiffness for a year or two before but just thought I was "getting old"), being treated through Rheumatology at Shands Hospital (Great people, like Mayo, I'm sure.) in Gainesville, FL. I started at the high dose of 60 mg, it was amazing--within days I felt like I was invincible, having delusions of grandeur due to "Prednisone Psychosis" (It's a thing. And I ride it for all it's worth. 🙂 )
--and launched into crazy lucid dreams and auditory hallucinations--honest to God, one night I heard Wolf Blitzer from CNN standing at the foot of my bed and in a clearly audible voice say: "Right." -and I was up for the night and most nights after. In fairness to my brain, I watch The Situation Room sometimes, so I should've seen that coming.
I was only sleeping, like 1-2 hours a night, but had incredible energy. My nocturnal meanderings included a voracious appetite--for which I tried to stave off weight gain by eating large quantities of vegetables. My wife refers to me as "The Were-rabbit", with appropriate emojis. And with my morning evacuations I could fertilize half of England. I've retained fluids to the point that I look kind of like a squirrel with a mouthful of acorns? Only without the benefit of said nutritional content. I look like--if Alfred Hitchcock and Winston Churchill had a love child? I would be that child.
These days, I've tapered down to 15 mg/day, and the pain and stiffness are returning. Now I look like Winston Churchill/Alfred Hitchcock (Where did my chin go? I distinctly remember having a neck.), only I'm dragging out my cane again (Okay, that's a little Churchillian, at least) to get up and move around.
If I sleep 5 hours at a stretch, I call that:
"Boy, I'm sleeping the whole day away!"
Fortunately for me, I'm teaching remotely via Zoom, and my students are all so kind as to not ask what happened to my chin. Some days, I can't even remember if I was wearing pants. They love me for the madman that I am.
As I consider increasing dosage and heading back into Prednisone Psychosis land, I wondered if there's an alternative to allow me to hop off the train?
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
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Looking for anything to help with PMR. Put on Prednison for yrs ago. Started with 20mg and 1 mg at night. Over 3 years got down to 6 & 1. In Aug '21 PMR worsened. Have been on 15mg in AM and 15mg at night. Continue to try and lower. Had 5 straight nights w/o pain and then while on the same dosage, the morning pain came roaring back. No luck with slow release Pred.
CONSIDERING ACUPUNTURE. Anyone have experience with that? Thanks MIKE
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3 ReactionsHello Mike @vinnieh, Welcome to Connect. I'm really sorry to hear about your PMR symptoms flaring back up after such a long struggle to lower your prednisone dosage. I have not tried acupunture when my PMR was active so I'm hoping other members will be able to share their experience. I can remember my mother having acupunture treatments to help with her rheumatoid arthritis but from my memory the treatment didn't offer any long term relief so I'm a little bit of a skeptic. I did see some enlightening information in a November 2021 article that gives the treatment some positive light.
How acupuncture fights inflammation: https://news.harvard.edu/gazette/story/2021/11/researchers-pinpoint-how-acupuncture-targets-inflammation/
I've had 2 occurrences of PMR, both I was started at 20 mg prednisone by my rheumatologist. I only took my dose of prednisone in the morning. My first round with PMR took 3 and half years to taper off with the last six months going back and forth between 1 mg and 1/2 mg until I was able to not take the 1/2 mg dose with the pain coming back. I did much better the second time around with PMR after a six year remission. It only took me a year and a half to taper off of prednisone. I credit the improvement of my second round with PMR to adding some lifestyle changes that helped with the PMR. Mostly giving up all fast foods, eliminating as much sugar as I could and adding a little more exercise into daily routine. Here's some information that has some suggestions if you have not already seen it --- https://www.medicalnewstoday.com/articles/321683
Have you talked with your rheumatologist to see if there might be something else going on in addition to your PMR?
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2 ReactionsI really appreciate your comment “your body to teach tapering not your bloodwork ….”
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2 ReactionsI did try acupuncture and actually had a few strange pains the following days, one felt like sciatica, the other a tooth/jaw pain. I didn’t know at the time that I had underlying PMR, thought I just had aches and pains. Talked to acupuncturist who said that accupuncture strengthens the immune system which is the exact opposite you want if you have an autoimmune disease. About 3 months later, had full-blown PMR, but think it was underlying when I had the accupuncture. It is still active, but I am now down to 2-3 mg. Prednisone, taking my time decreasing. Acupuncturists vary, but if I would do it, would make sure acupuncturist has knowledge of autoimmune disease so they don’t make it worse
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2 ReactionsYou said it perfectly and how I have been feeling as well. As if our quality of life has been robbed from us. I don't know about LDN but I would like to ask my Rheumatologist next time. He was going to try me on Methotrexate but now that the Methoprednisolone (still an annoying steriod) is working he wants to stick with that now and start to taper in a couple of weeks. Even though my inflammation levels are normal (in my bloodwork) I can still feel the PMR lurking in the background so I'm nervous about starting to taper but I can't wait to get off these steroids!
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1 ReactionHi, kvd9. Maybe someone's already mentioned Methotrexate as an alternative to Prednisone. Methotrexate is most often prescribed with folic acid. I finally got an appointment to see a Rheumatologist for my PMR, scheduled for this afternoon, and I plan to ask about Methotrexate as an alternative. Good luck to you.
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1 ReactionThanks Virginia, very valuable information. Yeah, it’s a very tricky malady to address without enciting it! I am in the middle of a “flare” which has me somewhat defeated since I was down to 4 mg after nearly two years. Then along comes the tidal wave of whole body pain and immobility. Had to go to 40, now at 20 but decreasing only by 2 mg /week. Agonizingly slow but I have no choice. I get the GCA symptoms too, nothing to sneeze at. My first bout with this, I never had more than 15 to start, so this is humbling,. I was going to seek out acupuncture, but I think maybe I will not. Be well and hope you can get off the juice, but 2-3 is not bad at all. May have to live with that?
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1 ReactionMy sed rates were never elevated though I had full blown PMR. With my recent flare, my sed rates are ridiculously high.
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2 ReactionsI was eager to get off the prednisone, too, as I said at length earlier. However, after reducing from 15mg to 10mg I have found pain creeping back on one side (so far) and am now looking for a way to increase the prednisone a bit - since I can get up to 7 hours sleep on 10mg, but was only getting about 4 - 5 hours at a time on 15 mgs. I'm hoping for a compromise around 12mg that will allow me to sleep AND quell the pain. We'll see. I don't like the weight gain, or the puffy face, but I function SO much better if I can sleep. My doctor was hoping the LDN might help with the taper, but in 3 weeks it hasn't made a discernable difference. On the other hand, maybe without it, I'd be feeling much worse. It is such a guessing game until repeated experience tells us what is working for our bodies. Much in our lives is working well and i'm determined to concentrate on THAT and, without diminishing the negative effects of PMR, I am sure I'm easier to be around and more likely to enjoy life if I can keep my balance. WAY easier said than done. Good fortune with your taper in a few weeks, AbbeyC! Let us know how it goes.
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1 ReactionI met with my Rheumatologist yesterday, and she said methotrexate is not particularly effective for PMR as an alternative to Prednisone.
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