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

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@johnbishop

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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Replies to "Hello @leilalou, I would like to add my welcome to Connect along with @tsc and others...."

Thank you for the resources that you sent me. The challenge for me is managing what I feel is a chronic illness. I have been a RN my entire life and I have taken care of many patients living with Chronic disease. This is a silent looking disease. Prednisone is a miracle when taken even in low doses. Friends and family have no
Idea the suffering that goes along with this. With that said I am still very thankful that prednisone low dose works for me and other Biologics for RA works for others. At this point I am managing this with low-dose prednisone and hoping that methotrexate will not be something I need to take at this time. Trying to keep side effects at a minimum and have a healthy lifestyle the best I can. So far it’s working. Thank you for asking.