Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Hello @loujc, Welcome to Connect. I've had 2 occurrences of PMR with the first lasting 3 and half years until I was able to taper off of prednisone. I started with 20 mg prednisone for both occurrences. I struggled more with tapering with my first go around with PMR. The second time was a little easier because I changed my eating habits, gave up processed foods, cut way back on sugar and focused on eliminating as much inflammatory food items as I could. I also added a little more exercise and stretching to my morning routine but nothing strenuous. I think this helped my to taper off of prednisone in 1 and half years the second around. I've been in remission now almost 5 years.

How is your tapering going? Do you keep a daily log of your dose and level of pain in the morning when you wake up?

Hello! My rheumatologist recommended the increased/split dosage, after my 2nd 2-day stretch of over-the-top morning pain in 2 weeks. So I did ask, but it was really more "complaining" about the symptoms not getting better. Looking back, I was probably "too patient" before "raising the flag", thinking that, over time, the 15/day dosage could've made the symptoms gradually disappear even though the 20/day did not.

My PCP has not been involved since he referred me to the rheumatologist, although I've been keeping him in the loop on my progress.

To your earlier question, I asked my rheumatologist this morning when I should begin my taper. Since the new dosage (20+10), my symptoms have almost disappeared but not quite, so I asked if I need to wait until "all" symptoms disappear before the taper, or taper ASAP, since they've been almost negligible for 9 days now, but stable. My guess is that, if my shoulders have stayed about the same for 9 days, 2-3 more may not make a difference. I will keep you in the loop on how that goes.

Hello friends, I am new to this PMR support group having just been slammed 2 weeks ago with the disabling pain (neck, shoulders, back) and now working through a pred taper which is not working very well (so far). But as a newbee, I realize that patience will be the hallmark of a long journey back to wellness.

The irony in my case (though I’m sure all those afflicted have their own ironies) is that I’m an immunologist (research/author) having worked, written and lectured in the field for the past 35 years (of a 55-year career in healthcare) and just completed a book (just prior to my PMR diagnosis) entitled “The Paradox of the Immune System.” It’s a comprehensive text, but I think the gods of immunology punished me for only briefly describing PMR and not giving it sufficient attention (mentioned only twice in 300 pages) among the more than 80 autoimmune diseases I cover. As such, I really can’t recommend the book to my “now, fellow PMR suffers.” But if you are not entirely familiar with the science of immunology and its many paradoxes, you may find the text worthwhile. And please understand that this is not a book promotion because I have absolutely no interest in profiting from this book. My goal in writing it (and even more so now as an immunology [PMR] patient) is strictly to present the science of immunology to laypersons and health professionals with limited or no understanding of current immunology, its remarkable progress, and enormous relevance in healthcare.

To wit, I decided (again, prior to my PMR diagnosis) to create a free online website (www.immuneparadox.com) that parallels the content of the book including 90 blog posts with a “Science Version” (45 posts) for health professionals and a “Layperson Version” (45 posts) with the book content in simpler explanations and less technical jargon. But of course, as Einstein said so brilliantly, “Everything should be made as simple as possible, but not simpler.” I’ll also be adding podcasts and along with some preeminent immunologists from Bethesda, Rockville, and Frederick, MD we will be starting interactive monthly online immunology discussion groups for those interested. Please consider registering as soon as we have the links available. And please remember, everything is free. In the meantime, with the help of my physician and hopefully, a better understanding of PMR, and indeed of all autoimmune diseases, I’ll be attending to my condition and thinking of all my fellow sufferers.

Hello friends, I am new to this PMR support group having just been slammed 2 weeks ago with the disabling pain (neck, shoulders, back) and now working through a pred taper which is not working very well (so far). But as a newbee, I realize that patience will be the hallmark of a long journey back to wellness.

The irony in my case (though I’m sure all those afflicted have their own ironies) is that I’m an immunologist (research/author) having worked, written and lectured in the field for the past 35 years (of a 55-year career in healthcare) and just completed a book (just prior to my PMR diagnosis) entitled “The Paradox of the Immune System.” It’s a comprehensive text, but I think the gods of immunology punished me for only briefly describing PMR and not giving it sufficient attention (mentioned only twice in 300 pages) among the more than 80 autoimmune diseases I cover. As such, I really can’t recommend the book to my “now, fellow PMR suffers.” But if you are not entirely familiar with the science of immunology and its many paradoxes, you may find the text worthwhile. And please understand that this is not a book promotion because I have absolutely no interest in profiting from this book. My goal in writing it (and even more so now as an immunology [PMR] patient) is strictly to present the science of immunology to laypersons and health professionals with limited or no understanding of current immunology, its remarkable progress, and enormous relevance in healthcare.

To wit, I decided (again, prior to my PMR diagnosis) to create a free online website (www.immuneparadox.com) that parallels the content of the book including 90 blog posts with a “Science Version” (45 posts) for health professionals and a “Layperson Version” (45 posts) with the book content in simpler explanations and less technical jargon. But of course, as Einstein said so brilliantly, “Everything should be made as simple as possible, but not simpler.” I’ll also be adding podcasts and along with some preeminent immunologists from Bethesda, Rockville, and Frederick, MD we will be starting interactive monthly online immunology discussion groups for those interested. Please consider registering as soon as we have the links available. And please remember, everything is free. In the meantime, with the help of my physician and hopefully, a better understanding of PMR, and indeed of all autoimmune diseases, I’ll be attending to my condition and thinking of all my fellow sufferers.

I cant take steriods and now no one will help me ☹ i don't know what to do

I cant take steriods and now no one will help me ☹ i don't know what to do

Welcome! I'm sorry your have been diagnosed with PMR. I hope your journey with PMR goes as well as it possibly can under your set circumstances. We all have a different set of circumstances so everyone with PMR is unique in their own way. What do you anticipate doing in the way of treatment for PMR?

I'm sure we would all appreciate your input on wide range of topics. I'm curious about what kind of help you will be getting from your physician for treating PMR. It doesn't seem like there is much anyone can do. "Long term" prednisone is the treatment until we take prednisone "too long." Then the approach by many physicians is to tell their patients to taper off prednisone as soon as possible. The reasoning is that their patients no longer have PMR or it isn't PMR if it takes more than 2 years to taper off prednisone.

I was diagnosed with PMR in 2007. My diagnosis is still PMR but it "might be in remission" thanks to Actemra (tocilizumab) which was tried in 2019.

Reactive arthritis with uveitis was diagnosed around 1995 when I was found to be HLA-B27 positive. PMR was diagnosed in addition to reactive arthritis and uveitis. My rheumatologist calls it a full range of rheumatology problems or "systemic inflammation." Prednisone was the only option until treatment with a biologic was a huge step in the right direction. For nearly 30 years it was all about prednisone and trials of DMARDs.

Good luck an I hope your journey goes well.

As an immunologist with a recent pmr diagnosis, what is your biggest surprise about it (other than getting it.)