Prolia treatment for osteoporosis: What is your experience?

So how long do you have to stay on Prolia? What happens when you go off it? What happens if pr when the drug is discontinued? How many studies of long time effects are out there?

If you google either Dr.Jonathan Adachi or "how long can you stay on Prolia", all questions about Prolia are answered. Adachi is one of the leading osteoporosis experts here in Canada. There have been large studies done. You can stay on Prolia for ten years. Yes, going off Prolia abruptly may cause compression fractures. I have never learned how to provide the link to articles (will find out, its embarassing). This is a great article. There is about 12 years of data on Prolia.

so... after 10 or 12 years then going off it?????

Right now, that's what I've read that you can be on it for ten years. In 10 years, I'll be 75. By that time, there will be more osteoporosis drugs on the market and even more data on the existing drugs. I know that from here on in, I will always have to take a medication for osteoporosis. The treatment plan should be discussed with your doctor. (Who knows if I'll still be here 10 years from now!)

I have not been so lucky. I have had my second shot and have had many side effects. Hives and rashes that come and go on my face and forehead, itching all over my body, earaches, neck and backaches to name a few. I have seen an ENT doc, dermatologist, orthopedist and am actually seeing my rheumatologist today. So far no diagnosis has been made except for taking the Prolia which most doctors do not know enough about. But I am worried about
stopping the Prolia because of fractures. I am in a real quandry about this drug.

Maybe the rheumatologist will suggest switching to another medication.

I am sorry to hear about your challenges. I too suffered greatly until my team of doctors took me off the drug. I feel alive again. I am running again. You may want to research a prolia European Study released the fall of 2018.
Best,

I sure understand your worries and trying to figure out whether to continue taking this drug or not. Doctors and research community do not know enough about "any" of the osteoporosis drugs. Very, very hard for patients to decide whether they are going to receive enough of a benefit from these drugs versus the risk, or will taking them make things worse over time. I read reviews from those on all sides of this issue, plus staying on top of the medical research that is on-going, but after taking Fosamax for several years with unsatisfactory results and their side-effects - I am waiting for better and safer drugs to become available before using any of those currently on the market.

I agree that no one knows the long-term effects of these drugs. I stopped Prolia after three injections due to a number of side effects, and regret not doing enough research before starting. My internist had been telling me for ten years that I HAD to do something and that the choices were Prolia and Forteo, so I rather blindly agreed to Prolia. I was not told about the potential for rebound fractures when stopping, hence, the need to stay on it forever or switch to another drug. I had extreme fatigue, a persistent cough with mucous, episodes of vertigo, acid reflux, joint pain, itchy skin, and hair loss, with most setting in after the third injection. I saw specialists to rule out other causes for those conditions before deciding to stop Prolia. All of those conditions have improved since stopping. If I were fracturing, I would be more willing to endure side effects, but I am not willing to endure a dramatic loss of quality of life otherwise. And I am now taking my chances that I will be one who suffers rebound fracturing, because I didn't go on another drug. I feel that I am worse off than when I started. I am also one of those who was prescribed Fosamax in the mid-90s when it first came out as a preventative measure, and I didn't even have osteoporosis. It was prescribed to me year after year for nearly 15 years. I just recently learned through my extensive research on these drugs that Fosamax taken for that long can permanently alter the structure of the bones, and is now prescribed for only a very short period of time. All of that said, I know that there are people who take Prolia with no side effects, and that it can be a godsend to someone who is fracturing.

I am about to get my third injection! Oh oh. I refused medication year after year, bone density test after bone density test until there was a 19% drop in the b.d. of my spine in an 18 month period. At the rate I was going, I would soon be spineless.
I did the research. All the drugs terrify me. But, time was no longer on my side. For me, the thought of losing my independence, of having to spend life in a wheel chair and all that entails scares me much more. My quality of life has always been somewhat compromised by gastrointestinal issues, chronic pain issues due to lots of osteoarthritis so I didnt want a fracture as well.
I remember the endocrinologist saying to me on one visit, " I've seen patients on the other side" (meaning those who chose not to take meds). And she referred to a patient who was still in a wheel chair two years after a hip fracture.
I dont like some of what I read in the studies either but
in my case, at this stage in my life, I felt Prolia was the best option.