← Return to Grouped Into 3 Buckets

Discussion

Grouped Into 3 Buckets

Polymyalgia Rheumatica (PMR) | Last Active: Aug 29, 2024 | Replies (26)

Comment receiving replies
@johnbishop

@70infl, I'm with @megz on going from 5mg to 2.5mg can be too big of a jump and cause a flare. I think I would ask your rheumatologist for some research backing that there are 3 buckets/categories of patients with PMR. It may be their patient experience but I doubt there is a study backing it up. I know a whole of folks on Connect and other platforms with PMR that would definitely disagree. My Mayo rheumatologist was great in working with me while I was tapering off of prednisone. He gave me a lot of suggestions including keeping a daily log of my dosage and level of pain (0 to 10) when I woke up in the mornings before taking my dose for the day.

If you want to learn what others have experienced when tapering off of prednisone, there is a wealth of member experience here on Connect. Here's a list of discussions and comments on tapering off of prednisone - https://connect.mayoclinic.org/search/discussions/?search=tapering%20off%20of%20prednisone.

Jump to this post


Replies to "@70infl, I'm with @megz on going from 5mg to 2.5mg can be too big of a..."

I was told 30 years ago that there are "3 possibilities" which I think are generally true for autoimmune conditions in general. I suspect PMR could be included.

The three possibilities are:
1) PMR could happen once and never happen again---people get off Prednisone. People who go years before a second occurrence might be a subset of this group assuming they can taper off Prednisone a second time.

2) PMR could relapse and then might have a relapsing pattern---people stay on Prednisone because of relapses. It gets more and more difficult to taper off prednisone.

3) PMR could become chronic or refractory to a low enough dose of prednisone that isn't toxic---people need a different treatment because cortisol that is supplemented with Prednisone when needed is the primary way to regulate inflammation in the body.

I think it is possible after many years to progress from #1 and then to #2 and finally to #3. My rheumatologist says chronic autoimmune conditions are the result of the immune system developing a memory for attacking self as opposed to foreign antigens.

It is a complicated subject but immune system memory might explain the 3 possible outcomes of autoimmune disorders. In any case, the 3 bucket analogy made me think about the 3 possibilities.
https://www.ncbi.nlm.nih.gov/books/NBK576418/