Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

If symptoms indicated Covid 19?

It might be best to be tested for COVID-19 to determine if your symptoms are COVID, PMR or other. I couldn't find any literature suggesting that people with PMR should not be prescribed REGEN-COV, but it is always best to check with your doctor. Have you had known exposure to someone with COVID and you are now experiencing possible symptoms?

Hello Rick @ricksch, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I don't think any of us with PMR like taking prednisone but unfortunately it is the gold standard for PMR drugs because it controls the inflammation that causes most of the associated pain. In some cases Methotrexate is used for some people who don't respond to the prednisone. Mayo Clinic has some more information on diagnosis and treatment here: https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545

Your doctor or rheumatologist normally will work with you on a tapering schedule to get you off of prednisone as soon as possible as long as the inflammation that is causing the pain is under control. There are also lifestyle and diet changes we can make ourselves to help. I did that my second time around with PMR and it took me almost half of the time it took me to taper off the first time my PMR was active. I was on prednisone for 3 and half years the first time before I could taper off with little to no pain. The second time the PMR came out of remission 6 years later, I had made some better eating and lifestyle choices and was able to taper off of prednisone in 1 and half years.

Here's some information you might find helpful - Diet and Lifestyle Changes That Can Aid in the Treatment of Polymyalgia Rheumatica: https://arthritissj.com/diet-and-lifestyle-changes-that-can-aid-in-the-treatment-of-polymyalgia-rheumatica/

Has your doctor or rheumatologist offered any suggestions for tapering off of prednisone or any lifestyle changes that might help you?

Hello - I have had PMR for 6 years - diagnosed the year I turned 70 - after a few bumps and bruises, I was put on a dose of prednisone and followed the doctor's tapering schedule - a little too fast it seems, as I yo yo'd for a pretty good while - finally found a forum (from the UK) where I could go to see what others were experiencing and learned so much valuable info for me - had a few flares - sure don't want another - I am on a dose of 5 mg of Prednisone per day - and rheumatologist asked me to try to drop to 4 mg per day - I have found the DSNS method to be the best for my tapering, and think reducing by .5 mg per day is better for me - I have been using the 5 - to 4.5 method, but I am now having night sweats, feeling very sluggish, really fatigued, and just losing my sparkle - as I believe this is not a race, but rather trying to find the lowest possible dose to be comfortable, I wonder what y'all think - thank you so much

I had my initial episode of PMR thirteen years ago in 2008. It lasted six months and I had no further problems with PMR until I received my first Covid vaccination in January 2021, when my symptoms suddenly returned with a vengeance and I was unable to function without assistance. With the help of a skilled rheumatologist, I slowly regained my health and was able to begin tapering the prednisone. The doctor provided a schedule for me to follow for a three-month regimen of decreasing the prednisone until I was finally able to discontinue the drug after a bout of six months. Everyone's journey is different and the treatment must be individualized by an experienced physician. I hope you find the right dosage for your case and are feeling better soon.

Hi. I'm two years in and also a fan of the UK forum. What I think: the disease dictates my taper; not the doctors or a prescribed plan. And yes, the objective is not a relentless drive to zero prednisone (though I'd welcome that), but to find the place where we can be reasonably comfortable. Don't lose your sparkle 🙂 You may need to remain at 5 for a time and then try again. Best to you.

Thank you very much for your reply.

Thank you so much. i agree with you on tapering and probably will remain at 5 for a couple of months and try again.

Glad you are able to taper. These same thing happened to me. 5 years with PMR with a few flare ups but nothing prednisone couldn't handle. I had the first shot of the Moderna vaccine and was fine for a few days then PMR came back with a vengeance. My Dr. had me double the 2.5 mg to 5 and start the taper again. It seems like for
me 1.5 to 2 is the magic number. I'm back to 3 but have problems with my hands especially with trigger finger on 2 fingers. Now that the booster is here I might just stay at 3mgs until after I get the booster. Stay the course and it will pass.

I appreciate knowing of your trigger finger issues - I have had that happen to me when I get too low on the pred - at this time, l am not experiencing this issue - I have had the Moderna vaccine, but with no issues - I am not due for the booster until November - so we will see - good luck