I had been on Prolia about 6 years. It wasn't helping much but at least I wasn't getting worse.
Then because of a change in medical personnel at the center where I got it, there was a brief delay about 4 weeks or so) in getting my shot. There were no warnings about the danger of delay; I was just told my appointment would be later when the new doctor was available, and there were no warnings in Amgen's info to alert me. As a result I suffered three vertebral fractures and have… read more
I am thinking of all of you -- what a lot of pain and worry here!
RozJH, I was especially interested to hear about your dear mother, and her stopping a drug. It would be interesting to see the article she read. I have the sense that this has become a profitable (for some) but horrible (for others) business that may be hurting as much as helping many people!
I had some terrible falls before succumbing to Prolia (including being dragged by my own car in a freak accident) and never broke any bones. But after being on Prolia for about six years broke a whole bunch of bones all at once!! Go figure!
That's exactly what I experienced Suzdenney! When I started on it in 2012 I "trusted my doctor" which was really stupid! I would give anything to turn back the clock to that time and say NO to Prolia! It's destroyed my active life.
My doctor has propose Prolia for me but after some research, I am going to decline the injections. At first I thought I would take a couple of injections to see if I experienced the side effects the drug manufacturer describes as common ( pain in back, arms and legs, higher cholesterol and bladder infections). However the dilemma is that when you discontinue Prolia, you experience rapid bone density loss, which even the drug manufacturer indicates results in spinal fractures. It seems to me that if you start Prolia, you must stay on it no matter how bad you feel. As I said I am declining and hoping my doctor does not "fire" me for non-compliance.
Thank you for sharing this.. I have been working woth a wonderful pjhysical therapist.and this has helped a lot. I wish you all the best with these difficult d3cisions.
I saw a spine surgeon because I have a scoliosis fusion with rods and a fusion from T-6 down to L-5. I was having a lot of disccomfort at the point where my rods end up just above T-6 into my neck. I am taking Prolia so wanted some advice on how to deal with any vertebral fractures with all of my hardware, and make sure this pain wasn't one. He was really kind and took a lot of time with me. Luckily, all I need right now is some Physical Therapy for that area...no fractures at this point. He, however, mentioned that I might be a better candidate for Forteo than for Prolia, in part because I have high cholesterol, which is a side effect of the Prolia. He offered to confer with the doctor who prescribed the Prolia for me. I have a few months to learn all I can and decide. I wonder if you could have some careful physical therapy for your back, too, at some point...