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

You are so right about some rheumatologists not being as informed as one would hope. I waited for 2 months to get to a rheumatologist who treated PRM, and on the first visit when I told her of my diagnosis and my swollen right hand, loss of use of the hand, she said “that’s not PMR—it doesn’t affect hands.” I almost cried!!—never went back. My primary care doc & I are a team. I finally got the PMR diagnosis in 2019 after several months of excruciating pain, loss of mobility, tests & more tests (MRI, Cat scans, colonoscopy, sonogram, visit to my oncologist, blood work). Started on 20mg pred—a miracle—have regained mobility lingering pain in left shoulder & bicep, swelling in left foot ankle—massaging helps, along with keeping active.—Trying to taper down, am alternating days: new dose/old dose for 4 weeks, then lower dose by 1/2 mg at a time— now at 10.5mg, so far, so good! Tried to taper once before, went too fast, had to increase pred, going much slower this time, listening to my body. This site is the BEST!—a treasure!—so happy to have met you all—thank you!

Apparently all of the rheumatologist tell their patients the PMR will be gone in one year but I haven't heard one person say that that happened. been on prednisone for almost two years now and every time I decrease the amount the fatigue and pains come back. My recent bone density test was not good and I would like not to take steroids but it does keep the symptoms somewhat subdued.

You are so right. If it wasn’t for this site I doubt I would have the understanding, or be able to manage my PMR as well as I am sure I will. Not sure what confidence I’ll have when I finally get to see a rheumatologist though. Arranged for an appointment to see one but cannot get to see her until mid June so that is why this site and all of your opinions count so much to me and I’m sure to others. Looks pretty much like a self managed regimen at the moment 😉😁.

Actually my rheumatologist told me that my journey would last closer to three years...

Do high doses of CBD work in place of prednisone

Not for me, but I think I may give it a shot again....

The latest Mayo Clinic study shows the average to be 5.9 years. Many Rheumy's say 2 years which is actually best case. This board and the UK PMR board provide real-world experience and access to studies that are helpful.

I had my doubts that CBD would work in place of prednisone but now I'm not sure. I know people have had success with the pain but didn't think that CBD would address the source of the pain in PMR which is inflammation. I did find an article that does support that it might work but I'm not sure.

"CBD may offer an option for treating different types of chronic pain. A study from the European Journal of Pain showed, using an animal model, CBD applied on the skin could help lower pain and inflammation due to arthritis. Another study demonstrated the mechanism by which CBD inhibits inflammatory and neuropathic pain, two of the most difficult types of chronic pain to treat. More study in humans is needed in this area to substantiate the claims of CBD proponents about pain control."
- Cannabidiol (CBD) — what we know and what we don’t: https://www.health.harvard.edu/blog/cannabidiol-cbd-what-we-know-and-what-we-dont-2018082414476

I never saw a rheumatologist. My MD diagnosed me after consulting with my previous MD and came up with PMR after urging me to take 15 or 20 mgs prednisone (which I was afraid to take because of a previous allergic reaction for something else years ago). I took 15 mgs and immediately felt so much better. He was going to take me off pred at 2 years until I emailed him the 2017 Mayo/Matheson study on PMR and Prednisone. Since, then he has left my pred dosage up to me. I have also emailed him other studies re PMR. He now has more PMR patients, probably because he is more aware.

I must admit I am starting to think of going down a similar path. Intending to discuss this with my GP on my next visit later this month. Thank you.