Prolia treatment for osteoporosis: What is your experience?

Hi,
I can understand your concern about osteoporosis drugs. I had tried a couple which I could not tolerate until the doctor gave me prolia. When I asked about side effects, he said: "not much of any." How wrong! (By the way, I have very high risk osteoporosis.) My legs ached all the time - worse when lying down and I was becoming ever more limited every day. My hair started falling out - it has receded about 2" around my face. Then, I did some investigating on my own about other people's experience and all of my symptons were connected to prolia. It contains (as do almost all of the osteoporosis drugs) the same chemotherapy drugs as used for cancer. I will now exercise, take calcium and Vitamin D but never another osteoporosis drug. I had my doctor calculate my risk of a broken bone or hip without those drugs - over the next 10 years I have a 10% chance of breaking a hip and a 25% chance of breaking any bone. I will take those odds. I walk 3 miles a day and exercise. I am NOT saying you should do as I do, but living without the pain and burden of side effects is what I decided to do.
Good luck and do a lot of research before making your decision, Kaye

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Yes, drugs can and do have side effects and they're different for everyone. Of course, as I stated in my own original post, driving a car (or riding in one) carries risks too. So does living life in general. My hair is thinning on top (and yes I take Prolia and have for 6 years now) but my late mother's hair was also thinning on top as she grew older and she never took Prolia! Many things are in fact genetic. My mother had osteoporosis and smoked in her early years, did not take supplements, etc., and ended up breaking her pelvis. I on the other hand NEVER smoked, took calcium and Vitamin D for decades, exercised, etc., and still ended up with osteoporosis. Ah genetics! I also have high cholesterol and that began long before I ever even heard of Prolia. Anyway, I am not fond of taking drugs but I'm also not fond of the things that could happen if I don't take them. I am gearing up for cataract surgery; these began long before I ever heard of Prolia and let's be honest, most people do get cataracts as they age. Am I concerned that all will go well? Yes, of course but the surgery is one of the safest there is. Could some unforeseen issue occur? Of course. Is Covid a concern during all this? Yes! I've been vaccinated but still it's a worry to be sure. Will that stop me from having the surgery and just deciding to go blind? Absolutely Not!

Indeed everyone must make their own decisions with regard to their healthcare but in my nearly seven decades on this Earth, I have come to realize that life is a series of risks (like just getting up in the morning, for instance) and rewards. I think it was Helen Keller who said: "Life is a daring adventure - or nothing." I have come to discover the truth behind this.

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I can no longer tolerate Prolia, Has anyone been successful taking another osteoporosis drug to replace Prolia

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My doctors recommended Prolia to me and told me that Prolia had 15% fewer side effects than any other osteoporosis drug. Well, I got severe joint, muscle and bone pain. And the worst thing is that once you start Prolia you cannot stop it without substituting another medication. I am trying to find the safest alternative so I can stop taking Prolia. I wish I had not started it.

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Yes, drugs can and do have side effects and they're different for everyone. Of course, as I stated in my own original post, driving a car (or riding in one) carries risks too. So does living life in general. My hair is thinning on top (and yes I take Prolia and have for 6 years now) but my late mother's hair was also thinning on top as she grew older and she never took Prolia! Many things are in fact genetic. My mother had osteoporosis and smoked in her early years, did not take supplements, etc., and ended up breaking her pelvis. I on the other hand NEVER smoked, took calcium and Vitamin D for decades, exercised, etc., and still ended up with osteoporosis. Ah genetics! I also have high cholesterol and that began long before I ever even heard of Prolia. Anyway, I am not fond of taking drugs but I'm also not fond of the things that could happen if I don't take them. I am gearing up for cataract surgery; these began long before I ever heard of Prolia and let's be honest, most people do get cataracts as they age. Am I concerned that all will go well? Yes, of course but the surgery is one of the safest there is. Could some unforeseen issue occur? Of course. Is Covid a concern during all this? Yes! I've been vaccinated but still it's a worry to be sure. Will that stop me from having the surgery and just deciding to go blind? Absolutely Not!

Indeed everyone must make their own decisions with regard to their healthcare but in my nearly seven decades on this Earth, I have come to realize that life is a series of risks (like just getting up in the morning, for instance) and rewards. I think it was Helen Keller who said: "Life is a daring adventure - or nothing." I have come to discover the truth behind this.

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I replied on the Evenity thread (and should have replied here). It is difficult to respond though without knowing your DEXA scores and whether you have fractured. With LCIS, and DEXA's that aren't too severe, raloxifene might be a good choice, as your doctor said. Tymlos can be taken at a low dose and then ramped up. Reclast is also used for cancer patients as well as for osteoporosis. They all have side effects listed. There is no way to know in advance how your body will react. Often starting at a low dose (this can be done with Reclast as well) and working up can be a good approach. After Tymlos my doc is going to try 1/4 dose Reclast administered slowly with meds beforehand, because I am sensitive.

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