Prolia treatment for osteoporosis: What is your experience?

I can't imagine what would have happened if I had continued to receive Prolia shots. I wish I would have quit after shot 1.

I’ve had one shot with no side affects

I am due for my 2nd shot of Prolia next month but I think I am going to cancel. I just had my aortic heart valve replaced 2 months ago and i see that one of Prolia's side effects is endocarditis which is a serious inflammation of the inner lining of the heart. It is one of the things the doctors told me to watch for. I am familiar with it because my father had it after his heart surgery. Also another side effect of Prolia is high cholesterol which mine is always high even on medication for 30 years. I will be 75 next month.

@ellye in joining the group recently yours was one of the first posts that stood out to me. I'm so sorry to hear this—what a total nightmare. May I ask, do you think everything was related to the 2 Prolia shots? Reclast was my first nightmare drug—I was horribly ill from that for 4 months. The next year I took nothing because I was afraid what would be next. However, my bone density test revealed that I'd better do something, I agreed to Prolia and have been on it since 2009 with little to no side effects. I'm here to learn about Evenity because I fractured this summer. An accident, tripped over a bag of potting soil in the garage and went sailing into a wooden pallet we store wood on for winter and landed on the concrete floor. Wouldn't most people fracture even without osteoporosis problems? I see it as severe trauma likened to a car accident or something. My doc views this as drug treatment failure. Last night we discussed recent results of BD—doc wants me on Evenity. After expressing my concerns again, gave me a referral to a Dr in NYC (I live very close) as a 2nd consult. Small detail: she's not taking new patients. The consult is referring 2 other Dr's in her group. One looks 13 yrs old, not much Endo experience, the other reviews aren't great and again, more Internal Med experience than Endo. This group has shown me in a very short time how we all react differently to medication. One persons nightmare is another's saving grace. But the exchange of information is SO helpful—a huge THANK YOU TO EVERYONE HERE! May we all move forward gently.

I understand !!!!! It is my hope and understanding that if I take Reclast for one year (ie. one infusion), that it will lock in the good that my two injections of Prolia accomplished and and prevent the rebound that takes place when you stop Prolia and then I can stop everything., except vitamin D and Calcium and weight bearing exercise. I pray that this works. I wish all of you good luck on this journey of ours to prevent our bones from breaking and to remain active. Please stay in touch It means the world to me to know that I am not going through this alone!

I took 1 infusion of reclast last July. I initially had osteopenia and did nothing because I thought someone that has worked out all of this life couldn't get osteoporosis- wrong. Reclast was rough for first 4 days not too bad after that. Does anyone know that if you have osteoporosis do you have to continue reclast for 2 years ? Or can I stop if I get a great scan that
Shows increased bone density.

It is my understanding, from my endocrinologist that one year of Reclast should be enough to prevent rebound from stopping Prolia and then I can stop Reclast. I think the information on this is not conclusive. It is my hope that I do not have severe side effects from Reclast and that one year is enough however my "gut" feeling is that no one really knows the answer and I will probably have to wait and see. Yes ! We all seem to react differently to these drugs. Does anyone know good, effective, safe, ways to deal with the muscle, bone and joint pain from the side effects. So far I rely on Tylenol, but I take so much Tylenol (3,000mg to 4,000mg) in 24 hours that I worry about my liver health. It is wonderful that we can help each other !
Thank you

I believe that any of us who take Reclast as a follow up to avoid fractures after Prolia or to "lock in" gains from other meds, can be monitored and take breaks or stop until monitoring shows a need for more meds. That is what my doctor told me.

I second the "thank you to everyone"! The discussions and the experiences that are shared are so appreciated.

I was worried about that too. I have a friend on prolia and she has had no side effects from it. My endocrinologist said the side effects are the same ad taking Actonel, which I am taking now , and I have no side effects from it. We only read the bad stuff never from the ones who have no problem with prolia. My family doctor said her patients that take it have been fine too. She didn't press me to go on it but I think I am going to. Good luck with your decision.