1. < Polymyalgia Rheumatica (PMR)

Prednisone tapering is challenging. What does remission feel like?

Posted by jmcc @jmcc, Oct 18, 2021

Hi all what’s remission feel like? Does it only happen when I’m completely off prednisone or can remission occur while I’m tapering?

I’ve had PMR for a year and three months and I’ve been on prednisone for a year. I have been able to taper down to 4mg per day with some manageable pain and moodiness, but 2 days ago my head cleared and I felt like my happy self again. I’m still a little achy but really thrilled that I’m not cranky/spacey/frustrated.

Can I accelerate the taper? Any advice?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

linda7 | @linda7 | Jul 25, 2022
In reply to @suetex "I recently brought up the idea of "biologics" to him and he didn't want to vary..." + (show)
@suetex

I recently brought up the idea of "biologics" to him and he didn't want to vary from the path of steroids. He doesn't even think that methotrexate works. (It wouldn't work on me anyway, it a genetic thing.) I get the impression that he isn't very experimental. I may end having to shop around for another rheumy if I can't get what I need from him.

Jump to this post

It sounds like you know what you need to do. My rheumy is only 3 years out of training which makes me wonder sometimes if he has seen enough PMR patients. He is smart, thorough, and apparently up on the latest treatments so I'll stick with him.

REPLY
martiesowers | @martiesowers | Jul 26, 2022

Today was my last methylprenisolone. Taper complete! It has been a year and 2 months. Still taking the injections of Kevzara and Methotextrate. Taper for Methotextrate is next! Feelig so muh better than I did a year ago!

REPLY
tillysam | @tillysam | Jul 26, 2022

Is it possible to have PMR without an elevated sedimentation and CRP?

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 26, 2022
In reply to @tillysam "Is it possible to have PMR without an elevated sedimentation and CRP?" + (show)
@tillysam

Is it possible to have PMR without an elevated sedimentation and CRP?

Jump to this post

Good question - the answer is yes.

"Can you have PMR with normal CRP?
Polymyalgia rheumatica can still be a very surprising disease: the diagnosis is possible even if normal values of both ESR and CRP are present."
-- Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: a four-point guidance: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911650/

REPLY
kmeikle1 | @kmeikle1 | Jul 26, 2022
In reply to @suetex "I recently brought up the idea of "biologics" to him and he didn't want to vary..." + (show)
@suetex

I recently brought up the idea of "biologics" to him and he didn't want to vary from the path of steroids. He doesn't even think that methotrexate works. (It wouldn't work on me anyway, it a genetic thing.) I get the impression that he isn't very experimental. I may end having to shop around for another rheumy if I can't get what I need from him.

Jump to this post

I have to agree with your rheumy re. methotrexate. It may work for a few, but studies show very limited success and many have side effects from methotrexate. All in all the study results are not good and my rheumy agreed with my reluctance to try it out. For most people with PMR there is one path that has proven effectiveness: prednisone.

REPLY
tillysam | @tillysam | Jul 27, 2022

Does anyone have adrenal insufficiency due to going down on the Prednisone?

REPLY
1 reply
tillysam | @tillysam | Jul 28, 2022

I took Methotrexate and Actemra. Both had major side effects for me and I had to stop.

REPLY
suetex | @suetex | Jul 28, 2022

I'm pretty sure I had an adrenal insufficiency stress reaction last month when my horse bucked me off. (I had let him gain weight and his saddle no longer fit- mea culpa!) Afterwards, I was very weak. Never had a reaction like that before (and in 65 years, I had plenty of incidences.) Also very dehydrated. Did not feel normal. Haven't had chance to ask rheury yet but I plan to. I wonder if we are supposed to temporarily up our pred.

REPLY
floridabonnie | @floridabonnie | Aug 2, 2022

When I started to feel better, my Rheumatologist told me to taper slowly. 1/2 mg. Every month until I was off. Toward the end, I confess that I switched to every 2 weeks I would lower it by 1/2. I have been off prednisone for 12 days now, and I feel really good. God luck!

REPLY
2 replies
scpartain | @scpartain | Aug 3, 2022
In reply to @floridabonnie "When I started to feel better, my Rheumatologist told me to taper slowly. 1/2 mg. Every..." + (show)
@floridabonnie

When I started to feel better, my Rheumatologist told me to taper slowly. 1/2 mg. Every month until I was off. Toward the end, I confess that I switched to every 2 weeks I would lower it by 1/2. I have been off prednisone for 12 days now, and I feel really good. God luck!

Jump to this post

Congratulations! I'm so happy for you that you have achieved remission.

REPLY
View MoreView Less
Please sign in or register to post a reply.