Clinical trials for osteoporosis

Posted by billie3 @billie3, Apr 20, 2020

Has anyone been on a clinical trial for osteoporosis? If so, where did you find out about the clinical trial & what's your experience so far?

Wow! I certainly understand your life. I always thought I would use my hands, but nothing has ever happened so fast. I was up, then flat on my side. I've had a laminectomy also. Lots of injections, but won't do that again. Never helped for a long enough time. I had the surgery at the base of my left thumb, the one I'm wearing a brace on. I had been in pt since October for my patelofemoral syndrome, and the fall undid all that. I'm grateful that I didn't damage my right knee replacement. I just want to get the strength in my legs and knees back. We're living in a senior community, and are on shut down. I have a phone appointment with my general practitioner, and I'm going to discuss a pain management specialist and a chiropractor. Will be an interesting conversation. Thanks for sharing your story.

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@billie3

My most recent Bone Density DEXA was last Nov (Nov '19) which revealed osteoporosis in my lumbar spine (T-score -2.6). I have pain if I lift something over 10# or exert myself with different exercise ex. biking up a long hill. My primary care doc has "pushed" Prolia. I've resisted to accept this recommendation. I have 2 older sisters who were on Prolia for a number of yrs and now no longer get those injections due to their newly diagnosis of kidney disease.
I've done some research on TCM (traditional Chinese medicine) and osteoporosis and the use of Qiang GuYin'. I'm trying to find out if there's a clinical trial for patients willing to try TCM or other alternative medicine/innovative treatments. I can look at the link you sent from the Nat'l Osteo Foundation. Thx, Kelly

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@billie3, @kellyhahn1, Good afternoon. I am very interested in the TCM. I also found a link to Qiang GuYin. Didn't quite know what I was reading and would like to know more. Please direct me. Thanks @billie3.
https://www.mdlinx.com/journal-summaries/postmenopausal-osteoporosis/2017/05/11/7143992/

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@mpeters

Hello. I will respond to the part of your story that I can relate to. My primary doc also pushed prolia . I went to Mayo Clinic for a second opinion. I now take once yearly infusion of Reclast. I’m taking the final of the three infusions in May and I hope that will be my last one for many years. I have no side effects from the infusion. I hope this helps.

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Hi! You mentioned that you went to Mayo for a 2nd opinion and now get a once yearly infusion of Reclast. But then you said that you will get the final of 3 infusions in May. Why 3 if you get just one a year? If you don't mind me asking, how long have you been on Reclast? My older sister was on Reclast for 3 yrs. I think it was 3 yrs. She then had a density test and was told how well her bone density improved. She went off of Reclast for 2 yrs. Had another density test & was then told the density of her bones were terrible- so porous. Bottom line, she's back to "square one". I wish there was a way that Reclast or any osteo med would do the job for us while taking them for 3 or 4 yrs and then our bone structure would stay strong and our bone remodeling would continue to be balanced and maintained while the meds are discontinued, but, unfortunately I don't think that's how it works. Also, it's my opinion that there are hidden or unreported side effects of ANY med.
Please reply when you can. Thank you so much.

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