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Prolia treatment for osteoporosis: What is your experience?
Osteoporosis & Bone Health | Last Active: Jul 13 3:27pm | Replies (1246)Comment receiving replies
@llwortman Linda, I never used to check these discussions because I had no idea I had osteoporosis -- my PCP dropped the ball after I was diagnosed with osteopenia in January of 2014 and I never had another Dexa scan after my fracture occurred - I called and asked if I was due for one. Now that I know I have osteoporosis I am researching as much as I can so when I see a rheumatologist I will be somewhat informed. Is that the type of doctor you saw, a rheumatologist? I was very surprised when my PCP's office said I needed to see a rheumatologist.
It seems as if none of these bone medications are without some very real faults, we have to decide which are best for each of us, and hopefully have a really great doctor to help us through it. I know of at least one person who has osteoporosis but will not take a medication because of the side-effects but I am still recovering from my "minimally displaced fracture of the trochanter of L femur" so I know the pain involved in even a minor fracture like this and do not want that to happen again if at all possible. I have even read that 20% of the people with a hip fracture die within a year due to inactivity.
I thought I was doing all the right things, exercising, and eating well but I now know that I was at a fairly high risk because three of the drugs I take - levothyroxine, prednisone, and my immunosuppressant, sirolimus -- can contribute to weak bones, plus I have lost a very considerable amount of weight. I was basically a fracture waiting to happen, "the perfect storm".
Since you got off of Prolia, did you start taking a different drug?
JK
Replies to "@llwortman Linda, I never used to check these discussions because I had no idea I had..."
I am not taking any drugs. They do not agree with me and I do not want to continue to make my bones more brittle with the Osteoclast drugs. I am eating lots of kale, almonds, grains, yogurt also taking vitamin D, & calcium ...all prescribed by a doctor and a nutritionist. I am also tested for my thyroid TSH. I exercise at least 5 days a week. My endocrinologist put me on Prolia and took me off Prolia after two injections and the discovery of a lung nodule. I cannot do Fosomax as it makes my joints hurt. I know hundreds of women who have had jaw and dental issues with Fosomax type drugs. My dentist gave me a report that was shocking regarding several Fosomax studies and did not recommend Fosomax type drugs.
I see a Sports Medicine doctor and a PT in Sports Medicine and I feel that I am improving. My Sports Medicine doctor was very impressed with my impact fractures recovery time. i am ridding a bicycle 12 miles a day.
I am never doing Prolia or different drugs similar to this again. It was explained to me that bones build up every day and also tear down as a natural bone building process. Osteoclast drugs only build bones up stopping the normal tear down process of our bodies building strong bones. The end result is bones continue to become more and more brittle. It is also explained in both a October 2018 European Medical Journal reported on line and also in a Canadian report by University of British Columbia. As I understand it, there are black warning labels on Prolia drugs in both Canada and Europe. My pulmonologist ordered a CT scan and I have a lung nodule, then read me a report about Prolia that said Prolia can in fact cause lung nodules. For me the risk certainly out weight the benefits.
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Like you, I thought I was doing all the right things, I lead a very active lifestyle and I eat well. It never occurred to me about the loss of estrogen causing me to have very early osteoporosis. Then I had a fall and crushed my whole right side. So much pain. I am concerned about new fractures. I like you I read the study, about dying after a fracture, it is concerning and so are side effects but a doctor you trust can help you through all of this. I also plan to ask my doctor about the side effects and the mounting evidence for rebound bone loss. Because I really have to err to the side of no more fractures. I am 54 and healed but I can remember all of that pain.