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PMR and Fatigue. Interesting study

Polymyalgia Rheumatica (PMR) | Last Active: Sep 27 8:18pm | Replies (18)

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@dadcue

I used to be 6 ft 3 in tall and used to weigh 225 pounds before PMR and Prednisone. My weight was "muscle weight" instead of adipose. I needed 40 mg of Prednisone to start with and I was still on 30 mg after 5 years. I gained about 15 pounds every year for the first 5 years and peaked out at 300 pounds. It was all belly fat. I had skinny arms and legs and no butt because of muscle loss.

I'm down to 260 pounds now. People say I have lost weight. I'm shooting for 250 pounds because at that weight people said I didn't look fat. I knew I was overweight at 250 pounds but nobody noticed. I guess I had a large frame and carried the excess weight well.

Even my large frame seems smaller at 70 years old -- more like 6 ft 0 inches presently. I'm hunched over because it hurts to stand up straight when I walk any distance. I use a rollator if I need to walk very far or I need to stand up for a long time. Gravity tends to work against me so I aquacise in the swimming pool. I can do aquacise for hours so my endurance has improved. The water resistance has helped my muscle tone too.

I don't think I have bone loss because my DEXA scans are abnormally high for my age. My rheumatologist says my DEXA scans aren't that reliable because of arthritis. He says the excess bone is arthritic bone and probably not dense bone.

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Replies to "I used to be 6 ft 3 in tall and used to weigh 225 pounds before..."

@dadcue
I lost a few inches due to spontaneous spinal fractures with kyphosis because of osteoporosis. I used to be 5 feet tall!!!
My husband cannot stand up straight anymore, either! For the last year and a half he is really hunched over and can’t walk very far without pain. It bothers me cause he is stubborn and spends too much time lying or sitting on couch when I’m trying to get him up and walking more. He had physical therapy for awhile which seemed to help and then his sessions ran out. I told him to tell his doctor that they were working and that he needs more PT! My husband uses a electric scooter that he can take apart and put in the trunk of our car, when he has to do a lot of walking.
We have also thought about joining a gym or the ymca with a pool so that we can both get some water exercise. We both failed our bone density scans! 🥲
Sounds like you may be on Actemra whether you like it or not—at least it seems better then prednisone!!
Only good thoughts for your continued health journey!