How to address PMR pain while decreasing prednisone

The bottom line is each of us is different and her rheumatologist are different and PMR pain is absolutely no fun!!!! I started prednisone at 10 mg in April now I am down to 1 mg for three weeks and then my rheumatologist said she does not believe in medication unless the pain is intolerable!!! The mornings are the worst I can hardly move every joint hurts as the day goes on and improves a little but not good. I am going to take one day at a time and see how things work out with the pain.

When I got down to 8mg some tolerable pain in the previously painfree joints came back. On John's pain scale, I had moved from 1/10 pain with zero pain in shoulders, elbows, wrists, hands and back of the knees (the only pain which never went away was base of thumbs), to 3/10 pain returning in some joints. I sat on the 8mg for 4wks hoping it would resolve by itself but it got no better. The new pain was tolerable but to me was a warning that a further reduction could only make things worse.

Whenever I reduce, some slight aches usually come back in the first week but are gone by week 2-3. Faster reductions wouldn't give enough time to see if the body is able to adjust to the new dose.

Edit: To directly answer your question about pain level after the slight dose increase, yes, I mean zero pain in all joints, apart from occasional aching twinges in the base of the thumbs and the odd finger. I have no problem with that at all.

I’ve had PMR for a year. I’m on my 2nd attempt at tapering and stalled out at 7.5 mg again this time. Gave it two weeks but had such limited functioning that I’ve now gone back up to 8 mg. I’ll give myself the respite of less pain for a week or two and then try alternating days of 8 and 7.5.

Dear @alissahe
Have you and your Dr. thought about combining your prednisone with Low dose Naltrexone (LDN)4.5
I believe that it's been helpful for me.
I was diagnosed with PMR eight months ago.
Was put on 20 mg of prednisone by my GP. The prednisone started taking my pain away within days to a tolerable level But I struggled with lots of side effects.
Two weeks after that my functional doctor included LDN.
After reading some articles about
Splitting prednisone I got permission to take most of my prednisone in the morning with my breakfast. Then 1 mg of prednisone at night before I went to sleep so that I could wake up without much pain and get a good sleep.
Today I'm down to 6mg of pred 5+ LDN in the am and 1 at night bf bed.
My functional doctor also said that if I had pain anywhere I could take Traumeel ( an analgesic) as needed. So far the journey has been tolerable and my moon face has slowly disappeared.
Good luck to you in your PMR journey.

What are the possible side effects of LDN?
I’m reluctant to take another med but I have an appointment w/ my rheumatologist in about 3 weeks and will try to learn a bit about this option before they

Look it up but I don't think that there are any.
In higher doses Naltrexone is used for a lot of other things.

I have been splitting my 5mg in half as well. Seems to work well. Going from 20 - 15 was causing too much pain but when I went to 17.5, it was good and kept pain tolerable. After a month, I went to 15, then another month later down to 12.5. I will go to 10 after Thanksgiving so we shall see how that goes. She gave me 1 mg tablets so if dropping 2.5 is too much, I can drop just 1.5.

Hello I have been recently diagnosed amd am being treated with pred, I cant get lower than 17.5 mg and am looking for answers on how to treat the root auto immune but when I ask Dr she kinda passes it off im disheartened by the lack of info like how long will this last how can I heal natural will fasting help just so many questions with little to no answers I am only 51 any sound advice would be helpfull

Hello @aeckman, Welcome to Connect. Sorry to hear you have joined our PMR club but happy to see that you have joined Connect. You are not alone with your PMR/prednisone struggles. Thanks to @dadcue, here are a few discussions with videos to help you learn a little more about PMR and hopefully get you on your road to tapering off of prednisone.
-- History of PMR -- Interesting video presentation from past to present.
https://connect.mayoclinic.org/discussion/history-of-pmr-interesting-video-presentation-from-past-to-present/
-- Comprehensive Overview Of PMR
https://connect.mayoclinic.org/discussion/comprehensive-overview-of-pmr/
-- Video: Steroids and PMR - International Panel of Doctors
https://connect.mayoclinic.org/discussion/video-steroids-and-pmr-international-panel-of-doctors/
You mentioned having your questions passed off when talking with your doctor. Have you thought about meeting with a rheumatologist?

@aeckman I was just diagnosed 3-weeks ago. If you have YouTube, I recommend you go there and look up the Prednisone Pharmacist. She has tons of articles that answers nearly every question you may have. She also had to take prednisone, so she gets it. She has lots of info specifically on PMR. Very helpful!