← Return to Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
DiscussionPolymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Nov 18 7:12pm | Replies (1907)Comment receiving replies
Replies to "i am on my third flare of pmr in 15 months..i have never made it below..."
I, too, become discouraged from time to time. I've had PMR since the summer of 2019 and even with slow tapers struggle below 10 mgs. To better manage expectations, the average stay for PMR is 5.9 years (accourding to the latest Mayo study). And though we all want off of prednisone, the objective is not "a relentless drive to zero." Rather, we try to find the place where we're reasonably comfortable (I'm never pain-free), and then attempt a slow taper.
It may be that people who have long remissions (cures?) don’t seek out a forum like this. My first remission lasted 12 years and I thought it was a one-time thing. After 12 years, it recurred. It seems like 3 flares in 15 months may be all part of the same occurrences. In my first time, I was on prednisone for 2 years. 12 years later, I got off prednisone in 10 months, but the PMR was back 6 months later and I think I reduced too quickly. I am now almost 2 years in and gradually reducing from 4 to 3 milligrams. I am not sure if I will end up eventually getting off prednisone this time or remain on a low dose. This seems to be a disease requiring patience.