Prolia treatment for osteoporosis: What is your experience?

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.

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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.

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@sue225 This is a bridge that I have not had to cross yet but I can really understand your feelings. It is not an easy decision. I don't think adding any drug to your regimen is easy.

I had my PCP appointment yesterday and although I am doing extremely well overall, I am borderline high BP and cholesterol. He would like me to start on medications for them. I told I would think about it, and check out the side effects. He was OK with that. He wants me to speak to my endocrinologist about it too when I see him in the summer. Apparently having diabetes adds to the risks of these things.
JK

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@sue225 I'm with you on high cholesterol.Cant get mine down ,diet doesn't do it so Dr put me on Crestor I,ll get blood work done later part of June hope it's down

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Yes, in the last two years I went from being on no medications to being on 3! As someone who is now being treated for my stratosphere high cholesterol (I am slim and eat a healthy diet), I recommend trying to lower the cholesterol with diet first. (oatmeal, almonds, beans, lentils, eggplant, okra, tofu, apples, oranges)--all of these foods definitely lower cholesterol. Healthy oils like olive oil and canola. I was not able to tolerate statins. So, I now inject myself with Repatha twice a month. It works. However, if I just had borderline cholesterol, I'd try diet first. Realize with diabetes there are dietary restrictions.
I have a strong suspicion that Prolia pushed my cholesterol levels higher and altered the ratio of hdl:ldl. In any event, it had to be treated prior to being on Prolia and the ldl has dropped 50% on Repatha.
Sometimes diet, exercise and healthy living is not enough. I'm sure your endocrinologist will sort things out for you. Stay healthy.

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Yes, in the last two years I went from being on no medications to being on 3! As someone who is now being treated for my stratosphere high cholesterol (I am slim and eat a healthy diet), I recommend trying to lower the cholesterol with diet first. (oatmeal, almonds, beans, lentils, eggplant, okra, tofu, apples, oranges)--all of these foods definitely lower cholesterol. Healthy oils like olive oil and canola. I was not able to tolerate statins. So, I now inject myself with Repatha twice a month. It works. However, if I just had borderline cholesterol, I'd try diet first. Realize with diabetes there are dietary restrictions.
I have a strong suspicion that Prolia pushed my cholesterol levels higher and altered the ratio of hdl:ldl. In any event, it had to be treated prior to being on Prolia and the ldl has dropped 50% on Repatha.
Sometimes diet, exercise and healthy living is not enough. I'm sure your endocrinologist will sort things out for you. Stay healthy.

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@sue225 Thank you for the suggestions. I do eat oatmeal about 3 times a week, almonds, and healthy oils. I guess I will have to consider the other things you mention.
JK

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