Success with Prolia?

You should probably see an endocrinologist before stopping Prolia. You can do one infusion of Reclast to lock in gains. But check Dr. McCormick's book "Great Bones" on the timing of the Reclast because if done too early, it won't work and if done too late, it won't help with the possible loss from stopping Prolia. The standard 6 month interval doesn't fit everyone. I have read that even one dose of Prolia should be followed up with Reclast, but check with an endo!

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Unfortunately, my Prolia is effectively stopped because the doctor will not prescribe the 3rd injection. I would love to consult with an endocrinologist, but that is easier said than done.

I sent to my doctor something from NIH surveying and compiling the literature on discontinuing Prolia. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9081316/ . Much to my surprise I received a call and he is now putting me on alendronate for one year.

I am thinking that is better than going off Prolia cold turkey and will continue trying to find a consult with an endocrinologist. Thank you for your response and encouragement.

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It's so great that you were so proactive and sent that study to your doc, and that your doc read it and went along with your well substantiated wishes. Alendronate looks like it mostly maintains bone density gained with Prolia. Keith McCormick, who wrote the books on osteoporosis that many of us have read, says that Reclast is best because it is more potent. You do one infusion then monitor. But taking alendronate for a year is close or maybe as good (according to that study)!

If you are concerned you could consult with Keith McCormick, a chiropractor in W. MA who specializes in osteoporosis. But looks like you have a responsive doctor who respects your research.

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Thanx for reviewing the NIH compilation because I read it the same as you insofar as alendronate seems equivalent to the Reclast. And I just might consult with McСormick anyway now that I feel a little less desperate. Thanx for the suggestion.

I would have placed a substantial wager on a non-response from my doctor to the article I sent him. That was my Hail Mary after running into difficulty with getting an endocrinologist appointment. My doc is probably the most authoritarian and least interested in patient perspective (or at least this patient's perspective) of any doctor I have ever had.

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Even more impressive that you convinced an old-fashioned dismissive type doc!

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I had my first injection of Prolia at the end of August 2022. I had serious reservations, but my orthopedic doctor said any pharmaceutical has a list of side effects that would scare the pants off you, yet very few people ever experience the bad side effects. Two things she didn't say was that Prolia is an immuno-suppressant and the other is that I will have to take it for the rest of my life. After I got the shot, she talked about the length of time I would be taking it and she stopped about 85 years old, which means she estimates I will only live another 17 years. I have been having fungal infections for the first time in my life that I cannot seem to get rid of. I don't want anymore pharmaceuticals, ever. I want to stop Prolia. I will see an endocrinologist as soon as I can get a referral to determine the best way to stop. I also have some dental problems that started after the shot, coincidence? I am very disheartened at this point and feel I've been lied to by all concerned.

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It was likely the article that convinced him, not me. Or possibly visions of malpractice when faced with the info in the article. I am just happy he even took a look at it.

He is a product of the educational system of India (quite British...). I have tried to like him but just cannot warm to him.

By the way, I also called Amgen. The customer service person kept repeating that Prolia is completely out of my body in 18 months after discontinuing. I finally said that is not responsive to my question. The bottom line communicated to me by Amgen was that it sees no problem with stopping Prolia cold turkey. It is no wonder therefore that this is not raised by the doctor when discussing Prolia.

Sometimes I wonder about how doctors stay current with professional development. I would like to think there is a healthy questioning about any Pharma marketing efforts.

My doctor seems to practice according to how insurance will respond. I find this very discouraging. I want a doctor (and have often had this until I moved a few years ago) who discusses with me best approaches and if I agree and insurance does not, I will then try to convince the insurance folks.

Yes, I think it is time to find another doctor. Again, easier said than done.

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My doctor only discussed Prolia which she recommended for 5 yrs and then zolendronate 1 dose would be given 6 months after stopping Prolia. I am, however, interested in knowing more about Evenity. Because it is so recently on the market, it is hard to get results from people who have completed the 12 month treatment. Thank you for your perspective.

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I am so encouraged by this !!! It is us as patients and consumers to really start speaking out and questioning information we have found that doesn't jive with what some dr's are advocating!!
Also, I'm making my way through Keith McCormack's book and would eventually like to consult with him ,but didn't know what I'd need to do to do that... and some of those questions have been answered on one response today . Thank you so much!!! In mean time will have to find someone locally to do the testing he requires.Wish me luck!

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