Alternative to Prednisone for Treating PMR?

Posted by kvd9 @kvd9, Jan 26, 2022

I am experiencing a relapse of PMR, I wonder if anybody found an alternative to Prednisone since I had a difficult time with it the first time around, which I took for about a year until Feb 21. Now having a relapse which I am afraid came on after my Covid vaccine shot. I would appreciate any help. Thank you

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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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@vinnieh

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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Hello 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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@kmeikle1

If you're trying to work through PMR pain, the inflammation will just continue to build up and you may have a flare. When you have a flare, general advice is to increase by 5 mg. until pain is controlled and then go back to the last place you felt good. If you were good at 6.5 that would be the place. Your body dictates tapering, not your blood work or a set schedule. We all want to reduce as much as we can, but if you go too low or too fast, you'll have a setback. You shouldn't be in pain.

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I really appreciate your comment “your body to teach tapering not your bloodwork ….”

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@vinnieh

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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I 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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@pokey

I am SO tired of the side effects of prednisone. The main culprits are blurring vision, lack of sleep, emotional lability, and weight gain/puffiness. Yuck! It beats the pain and immobility of PMR and I'll settle for it if I have to, but I wish there were an alternative that would work instead. I have passed an article on LDN to my general practitioner (who first diagnosed PMR) and she is going to check it out -- hopefully, she will find it acceptable as a safe and potentially effective replacement. I am concerned about how long it will take to taper prednisone before beginning the LDN, but it will be whatever it will be.

I never realized how a chronic illness can change a person until this PMR business struck. It is demoralizing to lose function and mobility -- never mind the pain. But even now that prednisone has given me back function and mobility and eliminated the pain, I still feel like a stranger to myself in many ways. The 'cure' isn't worse than the disease, but it is a VERY mixed bag. I know I'm not "entitled" to perfect health, but I so miss the healthy days of feeling up-to-whatever-came-along. I try to concentrate on being grateful for all I have had and still do have, but this is a harder path than I would have chosen, if I'd been able to choose.

Does anyone have experience with LDN that they could share in detail? Just looking to feel hopeful again.

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You 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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Hi, 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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@virginiaj

I 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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Thanks 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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@ste44

Has anyone had a PMR flareup and still had low Sed rate

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My 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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@abbeyc

You 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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I 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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I met with my Rheumatologist yesterday, and she said methotrexate is not particularly effective for PMR as an alternative to Prednisone.

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