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I have had PMR for 13 years. It took some time and trips to various doctors to be correctly diagnosed. After having PMR for about 2 years I was in a study through the Mayo Clinic in Rochester for a short time. I would give myself a shot once every week. With the shot I never felt so good. The shot did have one side affect - a day of combined vomiting and diarrhea. With that side affect the study was discontinued.
I gradually weaned down to 5mg from 20mg of prednisone. After close to 10 years of PMR, I weaned myself down to 1mg of prednisone thinking that prednisone would be a thing of the past.
About a month ago a had a BIG flare-up and I am now back on 20 mg of prednisone and feeling like I did when it all started. I have been through the various side effects of prednisone, the worst for me being - weight gain, irritability, and insomnia. Fortunately, I had very strong bones at the start since the prednisone has slowly been giving me osteoporosis. I also, make sure I get into a swimming pool for exercise at least three times a week.
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Hello Edith @edithmiller, It sounds like your PMR has been a long and painful ordeal. I have had 2 episodes of PMR. The first one went into remission after 3 years of prednisone starting with a dosage of 20 mg and the last six months or so going back and forth between 1 mg and 1/2 mg until I was able to taper off of the prednisone. Weight gain was my biggest problem the first time around. After 6 years of remission, it reared it's ugly head again and I went back on prednisone starting with 20 mg again. The second episode lasted a little less than 2 years and I was able to taper off at the end of February this year. I didn't have as much of a problem with the weight gain this time around as I was also diagnosed with small fiber peripheral neuropathy before the PMR came back and I started making lifestyle changes with my diet. I did this as a result of hearing about the Wahls Protocol and reading Dr Terry Wahls story which is pretty amazing. She was able to use nutrition to reduce her symptoms of MS. You can read more about her here if you want - https://terrywahls.com/about/about-terry-wahls/.
I think you have a good approach by using swimming pool exercise to keep your strength up. As painful as it can be exercise is a key to helping PMR as long as you don't over do it. I also have osteopenia. Have you tried any other physical therapy or exercises?
John