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

Welcome @judyswanson, Staying active is a plus when having PMR. I think the trick is just not overdoing the activity. I've had 2 occurrences of PMR and it has been in remission now for about 4 years. The second time around with PMR I made a few lifestyle changes and started eating healthier and also exercising more. Staying positive is a good thing with PMR.

Have you made any lifestyle changes to help with your PMR?

Thank you for your response. To answer your questions, no my primary doctor has not put me on a tapering schedule yet. I just went on the Prednisone this last Saturday morning. Very new at this. I have another appointment with the doctor on the 27th of May. I am concerned because my A1C is already elevated and I am considered pre-diabetic, . I do not want the Prednisone to make it worse. This is very frustrating, but it has helped with the pain and that I am grateful for that. I already cleaned up my diet about 3 months ago because of the A1C , low carb , lotts of veggies and then I get PMR. This is baffling.

Welcome @doloresmacneil, Tapering off of prednisone can be a little tricky. With my first occurrence of PMR I learned to keep a daily pain and dosage log rating the pain from 1 to 10 with 10 being the worse. My rheumatologist told me to listen to my body and suggested using the pain log when I was tapering. I didn't taper down if I hurt too much. I don't have osteoporosis but have been diagnosed with osteopenia and I also have degenerative arthritis in my joints and lower back.

It sounds like your tapering is going fairly well. What dosage of prednisone did you start on - 20 mg?

Hi @emma321 Ihad PMR, undiagnosed, then Giant Cell Arteritis, diagnosed by temporal artery biopsy a year after onset of PMR symptoms. My initial dosage of prednisone was 40 mg, tapered down to 3.5 mg now, about a year later. Through all this, I've had issues with my right shoulder - osteoarthritis and some rotator cuff tears. The pain is pretty constant, even with the prednisone. I use an infrared heating pad, do ultrasound, and just started using a TENS Unit - all those give symptomatic relief as well as an occaional tylenol. I've been doing Physical Therapy for a year too. All the best.

@emma321, One thing I think might really help since you just started is to keep a daily pain log rating your pain when you wake up in the morning between 1 and 10 with 10 being the worst along with your daily dose amount of prednisone. This helps when you start tapering. It's good to hear you have the diet on the right path. That was what really helped my second time around with PMR and allowed me to taper off in 1-1/2 years vs the 3-1/2 years the first time around with PMR. Everyone is different but you just have to listen to your body and take the tapering slowly.

Another discussion you might be interested in since you mentioned low carb and lots of veggies is the Low-carb healthy fat living. Intermittent fasting. What’s your why? discussion here - https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

Thanks John. I started with Prednisone 10 mg. And have not been referred to a rheumatologist.

Yes. I changed my eating 6 years ago when I went on paleo diet which I have continued. I have adjusted exercising so that I accept that some days I can only do half as much as I can on other days. I am more accepting of those tired days and realized that I had overdone the previous day or two. Learning to accept these varying abilities has been helpful by lowering the general stress

This is @beryl …..thank you Colleen for your welcome back message ….I hope I will be able to help with my experiences

I have a question, I am new to this diagnosis PMR, 9 days in on Prednisone 15 mg in the AM. It has helped tremendously but I have noticed I am still stiff in the AM, not a lot of pain and it takes a couple hours to get my full range of motion in my shoulders. I see my doctor on the 27th of May to go over how I am doing on this new med. Are my symptoms suppose to be completely gone? I really do not want to increase on the Prednisone. How does this work, are you suppose to be completely symptom free before you start to wean down? I would really appreciate some feedback.
Thank you

I told someone I had PMR and they looked it up and said it looked like an easy disease to have, take some prednisone and all better in a few days. How I wish that were true. I was diagnosed in October and put on 12 mg. Much better in 5 days. Fast forward to December when going down from 10-9. Return of discomfort. Stay at 10, get better. Get shots of Evusheld in March. Followed a week later by crippling pain in lower back and hip and leg muscles. Water retention, pain, shortness of breath, etc. Bloodwork showed CRP and ESR up too. Now up to 40mg for the past week but not a lot better even with diarrhetic and potassium. I’m just fine if I am totally sedentary. Or simply standing. Any forward motion as in walking and the constellation of pain returns with shortness of breath etc. What’s next for me? More prednisone until I feel good? Is there a ceiling?