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

there is a wonderful book called YOUR Bones by Lisa Pizzoli )sp)? and there are exercises on YOU TUBE to help without taking meds. I started off with PMR and prednisone already having osteoporosis but with light weights and heel drops (see you tube. easy to do) every day I have improved my spinal scare 5% (same dexa machine) and kept my hips the same. Not great but still better than what could have been. Without taking fosomax or any AA meds. They seem to have bad side effects. Good luck!

Yes, that is a worry and my dental X-rays apparently show bone loss. But I am religiously taking calcium pills and have joined the Y and do weight classes, elliptical, and tai chi. I would trade bone loss for non functionality any day of the week. But everyone is different and you need to follow a regimen that works for you. I prefer to live my life and not take any more drugs than I have to.

54pontiac, Yes, I have increased my calcium too, and until this diagnosis, I had made progress in improving bone density. In 2020 I was told I had full-fledged osteoporosis. I started doing weight training, lots of walking, and water aerobics, and when I had my last DEXA, about a month ago, it showed osteo in only my right hip. I agree with you that I don't want to be drug-dependent, and am willing to do whatever I can to prevent that! I did manage to get an appointment with a rheumatologist, but not until Nov 7th. The very sweet lady who talked to me on the phone did put me on a waiting list for a cancellation, though, so I have high hopes of getting in earlier. Blessings to you!

Wow 50 MG seems very high. need to see a rheumatologist .
I started on 15 MG as well, after delaying the start of taking Prednisone ... so many side affects.
after one month and blood tests the Rheumatologist reduced me to 12.5mg ( although my GP wanted to raise my dose to 20mg.) The morning pain and stiffness , in my shoulders neck and especially in my right hand has never gone away , just able to stand the situation; until 11:00 -12:00 noon when it does usually seems to get better. but it does not compare to the excruciating pain at the beginning. does this pain ever go away?
how did you know you developed GCA? different pain?
Good Luck Everyone!

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@54pontiac
I’ve had a long history (50 years!) of off/on prednisone use that has left me with osteoporosis. Currently I’m on the yearly infusion of Reclast that has no bad side effects for me.! Just had my second dose of Reclast, waiting to have at least three before we do a recheck of my bone density….When I was just at the osteopenia level I became diligent about taking calcium, vitamin D3 and magnesium supplements. But it was obviously not enough— I needed to do weight bearing exercise but the pain I was having was not in control. Thank you for your very practical ideas in raising your bone density. My husband and I are considering joining a gym with a pool or the ymca to start on some gentle water exercise for our arthritis and PMR! Tai chi sounds good too!

I went to Actemra injections every two weeks after a year of weekly Actemra injections with no significant flares. I've been fine, with no relapse after 6 months of Actemra injections every two weeks. Also, some of the side effects of Actemra have gone down; in particular the increase in LDL cholesterol went down, almost to my normal levels experienced before being ill and going on Actemra.

I was originally diagnosed with non-cranial Giant Cell Arteritis due to severe inflammation levels (for example, CRP= 347 mg/L).

was just diagnosed with PMR and put on Prednizone 20 mg to start ane titrate down every 2 weeks. I do not like having to take medication. Can this be managed by diet, exercise, and meditation? Is this caused by leaky gut?