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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Nov 18 7:12pm | Replies (1907)Comment receiving replies
Hi there
I am new to the group ..I hope everyone is doing well today. It’s been 3 years PMR/RA for me. The first day of my doctors appointment I began 10 mg and after three years I am at 4 mg . I taper very carefully to a half .. sometimes a quarter mg. However I have noticed even the most smallest increment of tapering lower - I am aware of. So being aware and actually toughing it out is what I have played with.
I have managed so well my weight, I exercise daily if my body is able in the pool, very thankful for water exercise. Being very conscious of bad carbs, sugar, . One thing I’d like to mention is I don’t know if this discomfort will ever go away since it’s been with me so long and when I try to taper it just comes back. I hope it burns itself out at some point but in the meantime I’m hoping that everyone who has this hangs in there and just manages their symptoms the best they can. Thank you for this site. It is wonderful to have a group such as this to discuss and run things by each other!
Replies to "Hi there I am new to the group ..I hope everyone is doing well today. It’s..."
Hello @leilalou, I would like to add my welcome to Connect along with @tsc and others. It sounds like you have made some lifestyle changes to help control your PMR. I wished I would have done that the first time I was diagnosed with PMR in 2007.
I've had two occurrences of PMR both were treated with a starting dose of 20mg prednisone. The first time it took me 3 and half years to taper off of prednisone. The last six months I was going back and forth between 1mg and 1/2mg prednisone until I could stop taking it with only minor aches when I got up in the morning. Then it came back with a vengeance 6 years later and my second time around went much better because I started what you have done - more exercise, eliminating sugar (almost 🙂) and eating more healthy and anti-inflammatory foods. It took me a year and half to taper off of prednisone the second time. My rheumatologist suggested I keep a daily log of my dosage and level of pain (1 to 10) and I used that the second time around to help with the tapering.
Here's a discussion you might find helpful:
-- Prednisone tapering is hard: Do complementary therapies help?: https://connect.mayoclinic.org/discussion/prednisone-tapering/
There is another discussion you might be interested in following since you mentioned being very concious of bad carbs and sugar.
-- Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/
What has been the hardest challenge for you with PMR?
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Hi leilalou, PMR and its big sister (I call it) Giant Cell Arteritis are self limiting diseases that are supposed to eventually go away. The length of time before remission varies a lot. Prednisone, at the proper dosage, is supposed to dramatically reduce the symptoms. I was not diagnosed for a year, so not on Prednisone, but with the PMR especially I always felt much better at night, somewhat human, but then, every next morning the horrible pain and stiffness was back. I have GCA now, started on 40 mg of Prednisone the third week of May, tapered down now to 15 mg. for the last two days. I'm always apprehensive when tapering, based on what I've read here, I know the pain can come back with a vengeance. So far, I've noticed an odd twinge once in a while, but nothing like the stabbing pains I was getting in my head or the incredible neck pain and stiffness before I started the prednisone.. I remember volunteer mentor @johnbishop posted a schedule of how he tapered, based on the scale of pain he experienced. It's probably in a tapering discussion. Wishing you the best, tsc