@remargulies
Hi. I’m 69, male. Dx’d at 68,
Nov. ‘25. My PCP, who treats about 2-3 PMR patients/year, put me on a 6-day Steroid Pack, like your Spine Specialist did for you.
Days 2, 3, & 4, I thought I was cured (felt like Superman.)
I went back to him on day 8, using a cane again. This is important, he told me he was testing to see how I reacted to the 6-day Steroid Pack. Because I felt like Superman (no pain) on days 2, 3, & 4, then the pain returned fully (hips, neck, shoulders) on days 5 & 6 of the Pack (less Prednisone) and days 7 & 8 were back to severe, he said he felt certain that I have what’s known as PMR. He didn’t not get it, he didn’t want to diagnose me until he read my bloodwork lab results from last week (E-sec rate and CRP which were over the top) and see how the Prednisone affected me. He then explained the disease, handed me a Mayo Clinic printout explaining PMR, and the rest is history. That’s how I found this website. I wish he’d told me that Prednisone might kill me (side effects.)
I may be wrong about your Spine Specialist, but I’m impressed with how he treated you, unless he abandoned you. PMR responds to Prednisone fast, and there really isn’t any other test. Bloodwork can be normal and still one can have PMR. He started me on 20am and 20pm like you. He kept reassuring me that the fingertip numbness and tingling is a Prednisone side effect. If you can’t sleep at night, try 25am and 15pm. Prednisone can prevent you from sleeping. I was given a sleep prescription and tapered to 20am and 15pm almost immediately. I needed sleep.
I’m glad for you that you are now with a rheumatologist that you like.
The people on this site are all winners in my book. Lots of experience on here. People having PMR and GCA, willing to share their experiences, what works for them, who respond to questions and concerns. Wishing you the best as you get through this.