I am afraid the pain will never end.

Again, thank you! Where I am getting confused, tho, is I thought that the pain was part of the adrenal glands getting fired up and in working order again. That pushing thought the pain is what it would take to jump start the adrenals, otherwise they would be chronic under performers, so to speak... I do apologize for taking up so much of your time and effort, but it is a life line.

Pushing through "increasing pain" while continuing a taper probably isn't a good idea.

I believe what happens more often is that people immediately increase their prednisone dose for any uptick in pain. Each new pain should be investigated because it might not be PMR. However, doing another investigation isn't always practical after PMR is diagnosed.

Much of my pain through the years wasn't anything like my original PMR symptoms. I would complain to my rheumatoloist that I thought PMR slipped out the back door and the treatment left me in a world of hurt. She seemed to understand but it still meant I needed to take prednisone.

I understand wanting to be "pain free" but perhaps that won't facilitate tapering off prednisone. It is more about accepting "tolerable pain" vs "no pain." The "fear of pain" sometimes controlled me more than the pain. Does that makes sense?

I'm not the best person to tell anyone how to taper off prednisone since I took it for 12 years for PMR. I'm in awe of people who are able to taper off prednisone sooner than I did. However, the experience with Prednisone I had before PMR was diagnosed was that I could routinely taper off prednisone going from 60 mg to zero in a month or two. My ophthalmologist who was treating uveitis said I was "skilled" at doing Prednisone tapers. I had a lot of practice treating flares of uveitis which can also cause vision loss. The only difference was "short term" vs "long term" prednisone use.

In spite of 12 years on prednisone ... I was able to taper off. In some ways it was harder for me to taper off prednisone after such a long time. The biologic I now take made it much easier for sure. The other thing that helped me was when I was told that I should NOT taper at all when I was at 3 mg. It was hard to resist the temptation to increase my prednisone dose but the endocrinologist said to only increase my dose when it was "absolutely necessary."

The difficulty was knowing if it was necessary or not because it wasn't like having "no pain." I had to stay on 3 mg for six months until my cortisol level improved. Six months wasn't a "predetermined" length of time. My endocrinologist actually said "as long as it takes" for my cortisol level to improve.

I am a believer in the biological Kevzara. I was stuck at 8-9 mg prednisone and this got me past the speed bump.

Medicare and my supplemental AARP coverall all of it except the first $2000.00 per year. (That’s my AARP deductible). Good news, I don’t pay for any other prescriptions for the year.

Also, prior to Kevzara, I found good relief with Tylenol for Arthritis as a supplement. My Rehumy recommended it.

Yes, I was a mess at times, had to be to,d many times, not to overdue it (I figured I could fight thru, no). At this point remind yourself, it’s ok to not be on top of your game.

Oy. Just got a message back from my endocrinologist saying to wait until
April of next year to see her as Prednisone dosage above 4 mg means that
the adrenal glands are not being activated which means that any and all
pain I am experiencing is due to PMR. Does that jive with what I have been
told?

I am excited and almost afraid to be hopeful about the Kevzara. I hope to have a game back one day. Being in top of it would be icing on the cake. Lol. I am only 2.5 weeks in to the Kevzara and am chomping at the bot to taper the prednisone. But, I am still in pain.l at 12 mg. Not agony. Pain. Don't know if I should.

Thank you for even more clarification. U and the group r leading my over active mind onto the path of understanding and away from panic.

Please note: it takes a few to 13 weeks for the Kevzara to take effect. You need to give it time to work, so you may not be ready to taper the prednisone yet.

Yes, we all want off the prednisone, but don’t rush to taper until you have more Kevzara under you belt, so to speak. The more pain you are in, the more tension your body is in.
Let it have some peace, relax and heal.

Lastly, find a PT, trainer or massage therapist to help your body.