Hi @sandy1988, Welcome to Connect. Tapering off of prednisone can be difficult for a lot of us. My first time with PMR I was also started on 20 mg dose and it immediately got rid of the pain. It then took me 3 and half years to taper off with going back and forth between 1 mg and 1/2 mg dose until I was able to stop taking prednisone. What helped me the most was some advice and suggestions by my rheumatologist. He told me to keep a daily pain and dosage log while I was tapering with the pain scale between 1 and 10. Then only taper down if the pain was tolerable. For me that was either a 1 level or 2 level of pain/ache when I got up in the morning. It always seem to get better as the day went on and I moved around. If I woke up after tapering down and my pain was above 2, then I would increase the dose by half of what I went down the day before to see if that made a difference. Basically it was learning how to listen to my body and how I felt and adjust the prednisone to get me through the day.

My PMR went into remission for six years and then came out again and I started on 20 mg again. This time tapering was much easier for me and I was able to taper off in a year and half. I did make some lifestyle changes which I think really made a different - more exercise (not the intense stuff!), eating healthier and less inflammatory food, eliminating as much sugar as possible, etc..

Have you tried to make any lifestyle or diet related changes to see if that would help?

I'm going through a similar problem with the taper. I went from 20 mg down to 10 with no pain at all. At 8 mg I had some pain but wasn't sure if it was PMR or pre-existing back and neck pain. I continued the taper on down to 6 mg at 1 mg drop every 3 weeks. Then the pain got worse and radiated outward into my shoulders. I called my doctor and he told me to go back up to 9 where I had been pain-free. That only partially helped so he told me to bump up to 10. Pain relief is fairly good there. I've learned to take my symptoms seriously and that trying to endure pain does not help in the process of getting off prednisone. I've done research online about the taper. American College of Rheumatology (2015) recommends 1 mg drop per month of prednisone below 10 mg. My rheumatologist says 1 mg every 3 weeks from 10 mg to 5 mg and then a slower taper, but he didn't give details about that. At this point 5 mg seems a long way off!

Forgot to mention in my last note about the half and quartered tabs, that I could not do without my TENS unit for back that bothers me the most with pain and stiffness.

Tapering off can be challenging. I am fortunate I have a Doctor who works with me, his philosophy is I know my body better than he does. So we dovetail his medical knowledge and my sense of what my body needs to do next. I hope that makes sense because I know it seems a bit loopy. So what we have come up with, which is working at the moment is, if the pain is not in the areas that I normally experience PMR then stay with the dose I am on and support with Tylenol. If that works and I am then pain-free continue that for a while. Then I’ll do the alternating days like 4 mg 3 mg 4 mg for one month or less. I realize that this protocol might be not acceptable by other medics but am fortunate to have a doctor that supports this philosophy.