How to address PMR pain while decreasing prednisone

@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.

@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.

@lioness - Thanks - it was a long journey but is over for now. No one in Orlando knew what was wrong with me. I will always be grateful to Mayo for diagnosing me and taking such good care of me through my long journey. Also, today it has been 5 years since my breast cancer diagnosis. Mayo also was there for me through this journey. This was a wonderful few days at Mayo with all good news.

@lioness - Thanks - it was a long journey but is over for now. No one in Orlando knew what was wrong with me. I will always be grateful to Mayo for diagnosing me and taking such good care of me through my long journey. Also, today it has been 5 years since my breast cancer diagnosis. Mayo also was there for me through this journey. This was a wonderful few days at Mayo with all good news.

@tinkerbell yea so happy for you If they had emojis Id send a happy one

@lioness - Thank you so much and thanks to all of the people on Mayo Connect. It is so nice to have people you can talk to and understand what you are going through. I will continue to check in to Mayo Connect and maybe I can help some other people that are going through Giant Cell Arteritis.