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

Thanks for starting a PMR Group Ethan @ethanmcconkey! I hope other members with PMR will share their experience and share any tips they have.

I've had 2 occurrences of PMR. The first time it took me a little over 3 years to taper off of prednisone. The second occurence 6 years later, it took me 1-1/2 years to taper off of prednisone. I lived with a minor amount of aches and pains at each taper point but kept going unless the pain was really bad. It might help to keep a tapering off log and write down the dosage and the pain level so that you have something to compare with each time you drop the dosage. I started tapering by 1/2 mg when it got difficult and that seemed to help me.

I was diagnosed with PMR 12 months ago and initially prescribed 20mgs of prednisolone which worked almost instantly. I began the slow (although I now realise not slow enough) taper to 4mgs in July and experienced my first flare, so after some mucking about I finally increased to 10mgs and now I am on 7.5mgs. I have learnt that once below 10mgs, one should only reduce by .5mg at a time. I couldn’t believe that .5 would make a difference but it really does. I will stay at 7.5mgs pred until after Christmas and then attempt to taper some more.

10mgs/day at one time or schedule 4 x 2.5 megs every 6 hours. What's recommended?;

Hi @ajp2019, I see this is your first post and would like to welcome you to Connect. I have PMR but it's currently in remission so no longer need to take any prednisone. When I was diagnosed I was started at 20mg dosage and took it in the morning. We are all different when it comes to the pain symptoms and I'm pretty sure there are other members here that have split their dosage into a morning/evening time frame. Did you just start taking prednisone or about to start it for your PMR? I would run it by your rheumatologist but think it depends on your pain level from the PMR.

Did it raise your blood pressure?
How were you diagnosed?

@penn1023 the prednisone didn't raise my blood pressure. In addition to the PMR being diagnosed, I was already on blood pressure medication for hypertension and high BP. I can't say that the prednisone made it any worse. A rheumatologist diagnosed my PMR but I'm not sure their is a specific test that identifies that you have PMR although they do use two blood tests as indicators -- erythrocyte sedimentation rate (SED rate test) and C-reactive protein (CRP test). Mayo Clinic has more information here on diagnosis and treatment:
https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545
What are your symptoms? Mine started with really stiff and painful joints and got so bad that I couldn't walk which is when I went to the doctor the first time. In retrospect I wish I would have went to the doctor at the first sign and not let it get so bad. The only side effects I had from the prednisone the first time it occurred was a significant weight gain. When the second occurrence came about 6 years after I was able to get off of prednisone, I was more aware of the weight gain problem and made some lifestyle diet and more mild exercise changes to help control the weight gain. I was able to keep it in the 5 to 10 lb range which was easier to lose after getting off of prednisone.

I have lower back pain near sacrum. Sed rate and crp were within range.
Which joints were affected in your case?

@penn1023, the PMR mostly affected my arms, hands and shoulders but I did have some leg and lower back pain just not as bad as the shoulder and arms.

Did you have any testing with ultrasound or mri? I am in the reading learning phase. Not sure yet if I have it.

Mainly a physical exam by a great rheumatologist and blood tests along with SED rate and CRP tests. Within hours of taking 20mg prednisone the pain was gone.