A month into my diagnosis with PMR

Thank you so much for your input.
Saw MD today was advised to hold on both vaccines . Going to try and decrease the prednisone. I am going to try and go from 20 to 15 mg. I have been on 20mg for a month.

I am a few weeks into PMR, having good results with prednisone and now starting my tapering off over the next several months. My rheum says its 50-50 in my case whether to get the latest Covid vaccine, but because I am 74, he is "leaning" toward me getting it. Have not had problems with previous vaccines.

I just wanted to suggest that finding a "stable dose" of prednisone that works was more important than the actual dose of prednisone when I was newly diagnosed with PMR about 20 years ago. I was diagnosed with PMR at the age of 52 but I had other autoimmune problems since the age of 32.

A stable dose that minimized my symptoms was what my rheumatologist suggested. She didn't care too much what the dose was as long as it controlled my symptoms.

I had previously taken high doses of prednisone intermittently for 20 years prior to PMR being diagnosed. Prednisone was prescribed by my ophthalmologist to treat recurrent flares of uveitis associated with inflammatory arthritis. My ophthalmologist gave me some guidelines to follow and said I was skilled with prednisone tapers. Other doctors said that I was "self medicating" and weren't so impressed.

I was an RN so I thought I knew everything about prednisone except I didn't know anything about PMR. My rheumatologist wasn't thrilled that 40 mg of prednisone was my stable starting dose so she decreased my dose to 30 mg and checked my inflammation markers. She was surprised when inflammation markers were elevated on 30 mg so WE agreed that 35 mg was a good place to start based on my symptoms.

Approximately 12 years later, I was still taking 10 mg of prednisone. I failed several steroid sparring medications during those 12 years.

When it seemed like I would be unable to taper off prednisone I was referred to an endocrinologist who diagnosed adrenal insufficiency caused by long term prednisone use. Adrenal insufficiency was something else I didn't know much about. There is always something else to learn in the medical realm.

After adrenal insufficiency was diagnosed, my rheumatologist said I was "too young" at 65 years old to take prednisone for the rest of my life. Approval for a biologic called Actemra was sought for the treatment for PMR. My rheumatologist said Actemra might be my best chance of ever getting of prednisone because it doesn't suppress adrenal function.

Actemra was FDA approved for GCA. My rheumatologist thought maybe Actemra would work for PMR since the two disorders are associated. I had no clue what Actemra was so I just agreed to try it even though there was no guarantee that it would work. I was able to taper off prednisone within a year after Actemra was tried. I have been off prednisone for nearly 4 years. I currently do monthly infusions of Actemra.

Actemra still isn't FDA approved for the treatment of PMR. However, another biologic called Kevzara was recently FDA approved for PMR. Actemra and Kevzara are similar biologics and share the same classification. They are both IL-6 receptor blockers.
https://www.drugs.com/compare/actemra-vs-kevzara

Wow...

Thank you,

So far, RINVOQ has taken care of 90% of my PMR like pain with no noticible side effects. However, the only way any of us can afford it is if you get financial aid from the company. I got a year and 3 months free. If you have multiple autoimmune diseases it is worth a consider. Bring it up with your Dr.

I've developed PMR toward the end of summer [2023]. Like you I had never heard of the disease even though I am a retired biomedical research professor with lots of experience at the NIH and med school teaching [though in neuro but not in rheumatology]. I've always been physically active, and it seems that my PMR is worse for those tendons-ligaments that have received the worst wear and tear over the years. I am surprised at the consistency of the symptoms among victims, and that it would be a big deal when I could finally raise my arms to shoulder level. The overall pain was almost totally disabling. It would have been better for my physician to provide some orientation, but I think this is new for her too. So far I'm on 15 mg prednisone and that has helped tremendously. Though I hope to not have to go higher as it is bizarre enough at this dose. Hang in there!

Hi and thanks for sharing. Not sure yet if the empathy is helping me or feeding into the low lites too much. I too struggled a couple of months wondering what was really happening to me. Hips freezing up and shoulder pain so bad I couldn't get out of bed without help. Dx Feb. 70 yr old male. Had to stay on 20mg first month and a half then weaning seemed to go ok until last month flare up from cooler weather change. I'm a retired RRT and I never heard of PMR. Thought I needed rotator cuff surgery and set up an appointment with a favorite Orthopod. Even got x rays prior to appointment. My wife insisted that I check in with my attending. Thank God he new immediately what it was. I think it's a "crap shoot" for me to try and pin down the source/origin of my PMR. My Rheumatologist says that a virus is suspect and that there may be a vaccine down the road. I had recent eye surgery, dental work, vaccine, tonsillitis six months before. Started CBT once a week after my first month to help with my anxiety and depression. Getting used to the early wake up/insomnia-challenging. And have to be sensitive to my lack of physical reserve on exertion. It is strange to be the patient now instead of the caregiver. What's helping me is the therapy, moderate exercise, plant based protein drinks with a healthier diet, and prayer. Tylenol if necc. It's also frustrating to go up and down on the prednisone. A strange reality for me. My wood craft hobby and gardening had to be toned down significantly. I guess we all half to grieve the loss of some things because the PMR. Hope you experience better outcomes soon.

So far everyone else has written my story or journey with PMR. I get it, those experiences are surely shared.
Thank you

lungranger77, thank you for posting. Apart from relating I particularly found your first sentence about empathy thought provoking..."Not sure yet if the empathy is helping me or feeding into the low lites too much." It is so easy to slip into what the good folks in AA refer to as "the poor me's".

Hi Gang,
Well Empathy is not quiet the word I would have used either........But we need to,( get down to the heart of the matter). Anger and frustration come to mind.