PMR - What do you wish you had known . . .

@kathy22wright
What about kevzara?

@p0rtia
I went down 1/2 mg at a time and the schedule is this, alternating days:
(HD=higher dose - what you’re taking now, LD = new lower dose- .5 mg lower than HD)
HD, HD, LD, HD, HD, LD
HD, LD, HD, LD, HD, LD
HD, LD, LD, HD, LD, LD
LD, LD, LD, LD, LD, LD
At this point you’re down by .5 mg, and you start over with that being the new higher dose.
So it takes almost 8 weeks to go down a whole milligram. A couple of times I felt a little soreness creeping back when I got totally down to the new LD, and I just stayed put there for an extra week and the soreness resolved.
I will be always grateful to whoever originally posted this schedule here- I can’t find that original post- maybe that person will read this and have more comments. This schedule has really worked for me at these low levels of prednisone. If it is confusing, let me know and I’ll be very happy to send you an example.

I have had lupus most of my life but in the last 9 months my autoimmune issues have grown. I am still in the midst of numerous tests and scans and whatnot, trying to determine what is going on. I know I have little patience but I said to my PA yesterday "I just want to get my life back." I seem to remember saying that same statement when I was about 25 and had just been diagnosed with active lupus. I guess I am still on the same journey that I was on 55 years ago.

Greeting to all on this tough PMR/drug journey. So thankful to learn ( in a post here) about https://prednisonepharmacist.com/ . Her videos answer a lot, even what questions to ask your doctors. I learned that between 2 am - 6 am is a normal time for inflammation and that is why I wake up with severe shoulder pain. Dr. Megan's answer is to take 1/2 your prednisone dosage at night and one in the middle of the night. THIS HAS HELPED SO MUCH! I'm going to share this with my rheumatologist in hopes that she share it with other patients. God bless.

@kjoed53 My rheumatologist hasn’t determined anything more than prednisone is necessary, and based on my research, I’m not sure I could afford the copays even if he did. I’m a small business owner paying enough in premiums and current copays to fund a small country.

My pcp and rheumatologist both have pamphlets and printed information in their waiting rooms about various conditions, diseases and pharmaceutical options.
Has anybody come across any such printed info about pmr specifically? A little booklet about pmr from the doctor would have been very helpful.
I never imagined I would be on prednisone this long.

@kathy22wright
Go to the kevzara website and see if you qualify for free kevzara.

@pmrsuzie Kevzara worked wonders for me

I wish I had known more about the process at the time I was diagnosed. From this group I realize that there is no 'standard' or 'normal' and it can vary so much. My rheumatologist gave little information and said it lasted two years. I needed more help and information about tapering at the lower levels. I have changed rheumatologist and my new one appreciates my need to have lots on information. He is focusing on what will work best for me and it seems he will stay flexible so this time my taper off prednisone will be custom to my need. I asked if I had a flare or just didn't taper right when I went off prednisone. He said it is difficult to tell but lets move forward for the best outcome for me. I had tapered to 0 but pain returned and got pretty intense. Now back on 5 and it feels so much better.

@tweetypie13
I think it's wonderful that biologics are helping patients.
Unfortunately, for me, Kevzara is only accessible with a $350 copay. And, I've had problems with a lot of medicines making the decision to try something besides prednisone difficult.