← Return to Prolia treatment for osteoporosis: What is your experience?

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Hi, Do Not start on Prolia. It is the worst drug imaginable. I took 2 shots which were terrible. I had severe leg pain all the time and worse if I laid down. I also lost a lot of hair. No one tells you but Prolia has the same chemotherapy drug (denosaub ?spelling) in it which is used to treat cancer. I finally had my dr. calculate my risk of breaking a bone based on my deka tests. Without prolia, the results were that over the next 10 years I had a 10% chance of breaking my hip and a 25% chance of breaking any bone.I will take those chances over being in pain all the time and losing my hair. Research prolia yourself and not on the prolia website. (Also, deka tests are unreliable if you do not have them done on the same machine each and every time.) Good luck! Kaye

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Replies to "Hi, Do Not start on Prolia. It is the worst drug imaginable. I took 2 shots..."

Thank you so much for your reply. What you said is what I worry about. I don't want to lose hair or have severe leg pain. My DEXA shows 5.9% of breaking hip. My ENDO dr told me over 5% is considered high risk. Do you know that you do not need your dr to calculate the risk. When you do DEXA scan the report has that info included in the report. I worry about breaking femur neck bone because there is a 20% chance of dying in 1 year and more than 50% will never go back to the independence you once enjoyed. That is what I am scared of. I really wish that I took DEXA when I was younger so I could have done something to improve my bone density but I did not do it until age 56. Even then my GYN would not even give me the order to do it until I had lied to finally got it and then the femur neck was -3.3 imagine if I had waited until age 65 (as the dr told me the proper time) I would have not treated my bone. I did take Actonel for 6-7 years and that medicine held all parts constant or a little better except the femur neck. My ENDO told me Actonel would not help femur neck and only Protia would. I am torn between taking it and not taking it. It is a lose lose situation.
I have a friend who performs hip replacements at UCLA hospital told me as long as I do not fall then I won't break the bone. But then my ENDO (a second one) told me if I break my femur bone I cannot have a hip replacement due to weak bone for the replacement to go into and he said it is hard to avoid falling down. He said people do fall.
I hope both you and me and the rest of the members do not fall.

What you were thinking was what I thought too. That is to take my chance of breaking the bone when the chance is 5.9% within 10 years. But within 10 years doesn't mean 10 years, it means 1-10 years so we can break our bone any time within the next 10 years so it could be tomorrow. I at first thought 10 years is a long time and at that time I will be 81. But after some thoughts I told myself that was a wishful thinking. I just need to be careful not to fall everyday for the rest of my life.
My ENDO told me that I was already 'doomed' 14 years ago (at that time the score was -3.3) so I might have used my 10 years already. I am sure -3.3 already put me in the high risk of breaking hip.

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.