Persistent pain in top left side of back below the shoulder

Yes I go for 2nd opinion on Monday and will ask if I should increase to 20. Not sure why current t Rheumatologist only put me on 12.5.

Yes. At night I felt like the ball of lead I'd been storing at the base of the rib cage melted and spread across the upper back, against the ribs. It was nearly impossible to lift myself out of bed. With prednisone, this feeling is much muted, but it's still there.

Yes thank you. Very much the same. Isn't it just incredible what this condition does?!

Yes, I have been on Prednisone for almost 6 years. When I get down to 5mg, my pain gets so bad that I have to go back up. It’s been a constant battle, and I’ve been to 3 Rheumatologists. I go to Duke in March, and I am hoping I can get on a better treatment plan, and they will work with me.
I was diagnosed in my late 40’s, and I am 53 now. I was always active, and in shape. That has all changed now sadly. It’s tough. I’d like to be able to do things and enjoy life without all the pain.

Oh my gosh, you are too young for this! I am 59 and my doctor says I'm about 20 years too young to have it. I wonder what triggered it for you. This is such a mysterious disease. I don't think people on the outside understand how crippling and life altering. I am discouraged by all the people in this forum talking about struggling for years and years, remission, out of remission, etc. Yet my doctors say it will be 2 years on average. Maybe they just don't want to give the bad news.

My Dad had PMR, and 3 of his Siblings have it now, and are dealing with it.
My age has been a definite factor in my diagnosis. First Rheumatologist diagnosed me with PMR reluctantly. Second Rheumatologist diagnosed me with RA, Degenerative Disc Disease, and Osteoarthritis. Third Rheumatologist diagnosed me with Fibromyalgia.
Neither of them can agree. And, they all want me off Prednisone, which I understand, as I want to get off of it to. But, it is the only thing that gives me some relief.
Thank goodness for my PCP who has been a great help along this process. She listens to me, and helps me with my dosing. She is the one who referred me to Duke, to hopefully get some help.
It’s been a long, exhausting journey, with a lot of downs. I try to stay hopeful, but I miss my old self that could do anything.
And, there have been many frustrating days. And, you are right. People don’t understand, and Doctors don’t have much help to give.

Just to offer a somewhat positive spin on the age aspect of the disease, I am a 7 month now sufferer at 72 but my father also had PMR. He had it in his late 60's, recovered and in his late 70's/early 80's developed GCA. He was on prednisone for quite awhile but got off. He was very active, rode his bike outdoors 8-10 miles several days a week up to his early 90's. At 93 he and his much younger wife took a trip to Mexico to see the monarch butterflies and he rode a horse up to 10.000 feet elevation. He drove until age 100, passed a driver's test and only gave it up when he opened his insurance bill at 100! He died at home at 103 after a short illness. I have a good example to follow and hope I can do as well.

I recently went to my osteopath for a manipulation for shoulder and collarbone pain and it helped minimize the pain level to almost nothing. I've used acupuncture in the past that has also helped me. With Covid still outthere I have not gone back to getting massages yet.