Are there long range studies,+ 5 yr. ,on the remissions rates of PMR?

@terryartist - Google Scholar has a lot of different studies on the recurrence rate if you want to scan through them. If you click 2026 at the left in the search it will show you the latest studies - https://scholar.google.com/scholar

I was first diagnosed with PMR in 2007 and it went into remission in 2012 and resurfaced in 2016. I have been in remission for the second time since 2018 and hoping some lifestyle changes have helped keep it there. I still have some aches and pains but I think at 83 that's to be expected with my degenerative arthritis and other conditions.

This is an interesting question. On the same note, how do I know I'm in remission if I am taking something like prednisone or Kevzara?

Another interesting question!

@terryartist

I think remission is defined as PMR symptoms being controlled or absent.

There are 2 subsets of remission:
1) PMR symptoms are controlled while still being on prednisone or some other medications.
2) The more difficult remission to achieve is called "steroid free remission" or now it is called medication free remission.
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The risk of having a relapse is always present. In that sense, PMR doesn't ever go away completely. It can always flare up again after medication is stopped. The hope is for a long period of time between relapses or better yet ... NO relapses.

Thank you…. It takes away the confusion as to the ways in which the terms “remission” and “relapse” used in a variety of scenarios I have read. I vote for door #3…. “No relapses”

Did some online reading and request for readings of my AI Bestie and what I learned first was there is no single definition of what remission is. Meaning what factors should be considered when determining if remission has been reached. Factors included are items like Inflammatory markers, morning stiffness, patient pain assessment, hip/shoulder pain exam, range of motion exam, pain medication requirement, fatigue assessment, imaging inflammation evaluation and more.
Since there is no clear testable way to Dx PMR it only makes sense that there is no clear way to score or define any given phase of this disease.
I would prefer the more measurable factors like inflammatory markers, imaging evaluations and medication requirements to be the leading determining factors, followed by the medically evaluated factors like pain and range of motion exams followed by self-assessments like pain scoring.
If you decide how to define remission then the next question is defining recurrence. Does it take all factors to return before recurrence is declared?
Most of us want clear answers, unfortunately with rheumatological problems lines are fuzzy at best. The medical world has spoiled us with clear yes and no testing we now expect that at all times.
Very interesting question, unfortunately the answer is elusive even when you do find long studies. My AI bestie did find some and they had plenty of caveats. It is never easy to compare different people who have used different factors and scoring in a single group. Leveling the playing field historically is impossible.

For anyone who has experienced remission (or maybe a better word is dormancy) of their PMR symptoms of more than a year and then experienced a return of their PMR symptoms, is there any common link like a virus beforehand? I had the covid virus last June and then two months of vertigo and then PMR symptoms. I think covid virus was the trigger, but IMO any virus that triggers an immune response could cause an over response from our immune system. As we age our immune system becomes less precise in managing its response to viral infections.

I am 75 and was diagnosed with PMR in 2020. After a year of prednisone, tapering by 1 mg a month to 0, I am still in remission. I believe my PMR was caused by sudden physical and emotional stress (my major surgery and my mother’s illness and death all at the same time). I have had no PMR issues since but then I have not experienced similar stress. I am prone to autoimmune immune diseases (I have Hashimoto’s and Reynaud’s) so I suppose a recurrence is always a possibility. I still see my rheumatologist once a year for follow up.

Here in the UK there has been a recent big review of all of the research into all aspects of PMR in order to prepare updated NHS (NICE) guidelines for treating PMR.
The guidelines are now out for consultation and here is a link to the publication which has all of the evidence as well as the proposed new guidelines. https://academic.oup.com/rheumap/article/8/1/rkae002/7606885
I've also added it as a pdf attached to this comment in case you have problems accessing online.
It discusses failure rates with tapering and remission rates post-tapering and what's needed to overcome those by changing the guidelines. This publication is open for consultation and is for anyone to respond to.
Hope you might find it useful.
Bette

@bettebaldwin Exceptional. Thank you!