Hello, I was diagnosed with PMR in late fall of 2025. At that point it took 5 minutes to get out of bed using a walker to pull myself up. I had to use the walker to get around the house as well. Once diagnosed, I started at 15mg prednisone and I'm now on 7mg. I'm having some pain in my hips and shoulders but not enough to ask for an increase of prednisone (rheumatologist is aware). In January of 2025 I starting treatment for osteoporosis (Evenity). I started having dispersed pain but attributed it to the shots (2 shots once a month for 1 year) - I stopped the shots after 9 months because of the pain. At that point I was diagnosed with PMR. I think the shock to my body from the shots is what brought on the PMR. I have no way to prove it but I did contact Amgen and they put it in their database. I also left a note on the osteoporosis forum. Like everyone, I want off of the prednisone but I truly love walking, driving, socializing - my mobility! I'm able to get a DEXA scan in July and I've got my fingers crossed the Evenity helped my, off the charts (literally), osteoporosis.

On a more shallow note but one that is difficult socially, I'm losing my hair. Luckily I have enough to put it up and I use Toppik to cover the balding spots on the top of my head. Oh, and don't get me started on the size of my eye bags!

FYI - I had been decreasing 1 mg every two weeks but saw my rheumatologist a few weeks ago and asked if I can stay where I am for a while because my granddaughter is getting married on 6/6 and I don't want to risk a flare up. He said it was best not to decrease the prednisone when there is a large family obligation or you are traveling.

Best of luck everyone.