How to address PMR pain while decreasing prednisone

@dar9216 - from Tinkerbell - I have GCA and just finished my taper all the way down through 1/2 mg for 2 weeks. I will be going to Mayo on Tuesday and will have a Sed Rate to see if I am okay to stay off of the Prednisone or need to go back on it. I do have strange feelings in my head. It has been a long trip. I was diagnosed on 2 May 2017 and finished the taper last week. Let me know if you have any questions.

John, just a question about GCA. You said in a post that you were tested. Any reason, or just out of caution. I guess with all the reading I have been doing since getting the PMR diagnosis, I have found something else to worry about. Thanks

I think my doctor tested me because the second time my PMR came back he was new to the family clinic (I get a new doc every 2 years or so) and was not familiar with my health record so asked me a few questions and thought I should be tested for GCA based on having some tenderness in my scalp and temples.

I am wondering if anyone has been to New York’s Hospital for Special Surgery for their PMR. They are ranked number 3 in the country for Rheumatology. If no one has been there I would appreciate hearing from anyone who went to the Mayo Clinic for PMR and what their experience was like. Thanks.

Hi Roger @rogernj67, I was diagnosed with PMR at Mayo Clinic in Rochester but I have never heard of a special surgery for PMR? The way the rheumatologist described what PMR is to me in layman's terms was - it's like arthritis all over the body. Do you have any more details on the surgery?

@I never heard of a surgery for PMR either? @johnbishop

No I guess I mislead you all. That is only the name of the hospital.No surgery. Their Rheum dept is way up there.

Hi Roger @rogernj67, now that I reread your post I understand. I think I just misread it ☺ I know there are other great doctors and hospitals but what is so special to me about Mayo Clinic is that all of the departments and specialty departments are patient centered and work together on difficult to diagnose health issues. I think that's one of the main reasons why they are ranked #1.

Mayo Clinic Ranked No. 1 Hospital Nationwide by U.S. News & World Report
-- https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-ranked-no-1-hospital-nationwide-by-u-s-news-world-report/

That has been a long journey, I think mine just started. My SED rate went down almost immediately from 92 to normal after 60 mg of Prednisone daily after two weeks. Now I'm just inching down. I could also go to Mayo as Iive in Twin Cities. I am waiting to see what happens when I get close to 1 or .5 mg daily.

@dar9216 - I am at Mayo now. My Sed Rate was 4 yesterday and the doctor said I am now in remission. I started on 60 mg on 2 May 2017. I went down 10 mg every 2 weeks until I got to 20 mg. I was on 20 for 2 weeks and they said I could go directly to 10 mg. I told them “no” because I knew that would be too much of a drop. I asked to go to 17.5 and they agreed. After a week on 17.5, I felt terrible and went back to 20 for a few weeks. I then started down at 1 mg every two weeks until I got to 10 mg. From 10 mg. I went down 1 mg every two weeks until I tried going from 7 to 6. Problems so then started going down 1/2 mg every two weeks. When I got to 5, I had already arranged with the Endocrinologist at Mayo to do an ACTH Stimulation tests to see if my adrenals were going to wake up after so long on Prednisone. My test came out that they were ready to do their job. Mayo had me taper to 0 mg going down 1/2 mg every 2 weeks from 5. I also had a cortisol test once I got off of the Prednisone. The Endocrinologist said if my cortisol level was 10 or more I should be fine. It was 9.9. I am really glad I had such wonderful guidance in my tapering. As you can see it does not always go smoothly and you will know when you have problems just by how you feel. Go with how you feel and then I checked with the doctor and set up my own plan. I am still feeling a little tired but that will pass I hope. I did read early on that you should never go down more than 10% at a time. That really helped me with my taper.