Prolia treatment for osteoporosis: What is your experience?

Hi Sewcouture, I forgot to mention that since you quit Prolia, you should take something else to preserve what you gained from Prolia. My ENDO told me to be on Prolia for 3 years and then switch to Actonel permanently to preserve what was gained from Prolia shots. So I hope you discuss this with your doctor about what to do after quitting Prolia. You cannot just quit prolia.
By the way you wanted me to read about Prolia instead of Prolia company's website. Guess why I am so terrified to the point I wondered onto this site? I read too much and that is why I am sooooooooooooo scared. 3 friends of mine took it and never even asked the doctors what the shot were let alone did any research. I was the one who told them that they had Prolia shots. They did not even question the doctor the name of the shots or side effects and did not even know their severe infection was due to those shots. They just took doctors' words and trusted that they were taken good care of.
My problem is that I read tooooooo much so got scared by what I read.

Hi, First off, the doctor knew that I was quitting and he had no problem. (He is the head endocrinologist for a VERY large hospital.) He is also the one who calculated my risk if I quit the drug. I decided that I was not going to put chemotherapy drugs in my body with their consequences. I will accept the 25% risk of breaking a bone in the next 10 years rather than live with constant pain and hair loss. That is my decision. I now feel great and my hair loss has stabilized. But now I am even more suspicious of doctors and their recommendations. I wish you luck! I can't help myself but must add - remember, medicine is BIG business and doctors get money from the drug companies. I would suggest you go to physical therapy and exercise not too much and enjoy yourself, Kaye

Hi Sewcouture, Thanks for your reply. I am glad that you are feeling better and seem very happy with your decision. I hope you keep us posted with good news in the future. By the way I do physical therapy at home. Did you say that I would not exercise too much? I exercise about 30 minutes daily, is it too much?

@artscaping Thank you, Chris! I am glad to hear you will be on Prolia too - gives me someone to compare notes with! All that information on the Facebook page is mind boggling. Some people on that Facebook page even said talking to Amgen is no use, that they are not going to say anything negative to discourage users because after all, they are selling the drug and don’t want to lose sales.

My physician has started me on Prolia and I asked her if there is any alternative and she said no. I asked about going back to Actonel and she said that’s a bisphosphonate that I have been on already, and that can be taken for just five years, which I have, so I can’t go back on I do not have severe osteoporosis (just slight, at the base of my neck and top of my spine) but my doctor wants me on it just as a preventative.

Good for you. I need a Prolia buddy. It is a shame that the FB folks can get a bit over the line. That is why we have moderators. They monitor and make sure you are receiving valid information and the folks who tell you about it are truthful. And we have community guidelines about the way we treat others.

I understand why they might think the manufacturer just wants to cover up a side effect to sell a product. Hopefully, when you talk to the researchers and licensed medical facilitators, you have a better chance of getting some valid information.

May you be content and medically healthy.
Chris

May I ask what are your t scores on all parts ? Since you took Actonel for 5 years, did it help? By how much? I took Actonel for 6-7 years and it helped to hold all numbers constant or improve a little except the femur neck. My ENDOs ( saw two) said Actonel doesn't work on femur neck only Prolia will. I learned that the reason it is hard to improve the density of femur neck is because it is hard for blood to go there so the drug doesn't go there as easy. I am not sure how Prolia works to bypass that difficulty.

My physician is the one who had me on Actonel and now wants me on Prolia. She hasn’t given me any numbers - just said based in my last bone density test I have slight osteoporosis at the base of my neck. She has never discussed numbers.

Previous to Prolia my physician had stopped Actonel for over a year. Then she called me last November and told me because of my age (I will be 75 in a few weeks), I could be at risk of falls and as a preventative she would like me to go on Prolia. I spoke to my pharmacist and she said both of her parents were in Prolia and were happy with it; so I figured, if a pharmacist is comfortable with her parents taking Prolia, maybe I should go on it.

I must admit though that I have had more body aches since January (I got my first injection on January 5j that I have ever been. I have fibromyalgia so I am hoping it’s just a coincidental fibromyalgia flare up. 🤷🏻‍♀️

What is the most successful treatment/drug for treating osteoporosis? I meet with my doctor about my recent bone scan showed it has moved into my hips, so I know we will be discussing going on pharmaceutical. I am 63 years old and went through menopause early @ 45+.

Good evening @sbauer4 and welcome, welcome, welcome, to Connect. It is such a pleasure to see your post. How did you find us? So many of us are just trying to figure out what is the best decision. It seems like there are a lot of options but it is difficult to put together a safe and secure plan for treating osteoporosis.
Basically, you have just a few choices:
1. Start with bisphosphonates....like Boniva. I was very allergic to those options. These medications do not build bone....they keep it from being attacked by an aging body.
2. Start with a medication that builds bone.....like Forteo or Tymlos. You can take these for up to 2 years. Then you must begin a save the bone med like Prolia.
3. Evenity is one of the newest osteoporosis medications. It builds bone and protects what it has built. After 18 months or two years....you will need to move to a bisphosphonate or Prolia.
4. You will need to review these with your medical clinician and learn about how your body might respond.

I just finished two years of daily injections with Tymlos. I held my own and improved my hip scores toward the osteopenia direction. There are beginning to be postings from folks on Evenity which you might like to explore. You also have to monitor your Vitamin D and Calcium intake to make sure you have the stuff you need to make bone.

Let me know how I can help from this point. I am 79 and started menopause right at 50.
May you have happiness and the causes of happiness.
Chris

I elected not to use Prolia because of its side effects. Namely, can elevate cholesterol (already taking statins) can elevate BP (already taking drugs to reduce BP), and can interfere with immune system. The later bothered me the most given Covid and likelihood of a bad flu season.