Hi @charlena, There is another active discussion for PMR where your question will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion:

> Groups > Autoimmune Diseases > PMR Anyone?
-- https://connect.mayoclinic.org/discussion/pmr-anyone/

I've had 2 occurrences of PMR. The first time it took me a little over 3 years to get off and I was tapering slowly. The last six months I was going back and forth between 1 mg and 1/2 mg tablet until I was finally able to get off and only had a few minor aches but no real pain. I found it really helpful to get my rheumatologist to prescribe 1 mg tablets along with my others so I could go down more slowly. I eventually had to split the 1 mg tablet which was how I was able to taper off the first time.

Is your husband trying to taper from 5 mg to being off?

Thank you John for getting this moved to another discussion for more views- what is this discussion thread under? He takes 5 mg, one in a.m. & one in p.m. He is now taking 1 in a.m. & 1/2 in p.m. On visit to rheumatologist last week he ordered a lot of bloodwork. Not sure what he is looking for.....

Thanks, John. I always review his labs. It's very odd, I don't believe his SED rate has ever been very high. He also has an elevated CPK level (he has had this for a number of years). Our dermatologist, who also treats patients with PMR, advises that none of his PMR patients have an elevated CPK level. He seems to indicate worry about this..... However, the rheumatologist doesn't seem concerned.

I have had PMR for three years. I have consulted four rheumatologists and three orthopedists in addition to my PCP. My initial treatment was 30 mg of prednisone. It was miraculous. Within about 4-5 hours I was pain free. When I had reduced the dosage to about 10 msg, the pain began returning. My doctor thought the PMR was in remission because all of the lab work was normal after the first four months torso. Because the pain worsened with each reduction in prednisone, I finally sought and obtained an appointment at the Mayo Clinic. I learned that about 40% of PMR patients do not go into remission and that about 10% will have normal lab work. Prednisone was again prescribed and the pain went away.

After my visit to Mayo, I found it took 12.5 mgs of prednisone to alleviate the pain. Unfortunately, I have been able to reduce it to only 11.5 mgs, but my goal is to keep reducing it until it is much lower than 11.5 mgs. This I can tell you, one's body responds to as little as a .5 mg dosage. I tried 11 mgs for one month and had to move back to 11.5 mgs. I will wait a month and then try again to lower the dosage to 11 mgs.

John Bishop mentioned in his posts that it took him a year of moving between 1 mg and 1/2 mg before he finally got off prednisone. Knowing that .5 mg dosage could impact my body was most helpful. It has given me hope to keep trying.

I will tell you that the doctor at Mayo told me that she had some patients who had not been able to reduce their dosage of prednisone to less than 7 mgs.

I, too, am concerned about long-term use of prednisone, but I do like being able to stand, walk, and use my arms.

FYI, I did ask about methotrexate, and she told me that it had not been effective in her treatment of PMR. So . . . I am taking the prednisone and fighting all of its side-effects.

Sorry. I did not note the date of your post.