Prolia and its side effects.

First the anti-resorptive Fosamax , approved in 2005 , (and other bisphosphonates, including Reclast 2008) were a godsend until they found out that after 3-5 years, the risk of atypical femur fracture and jaw necrosis went up. So now it's use is limited to 3-5 years. It was often prescribed or osteopenia originally. https://www.npr.org/2009/12/21/121609815/how-a-bone-disease-grew-to-fit-the-prescription

(When I was first diagnosed in 2006, Fosamax was the only drug, and due to GERD I could not tolerate it.)

Forteo was the next miracle drug, approved by the FDA 2002, with a limit, then, of two years, which has been extended more recently. (However, my experience with Tymlos, a similar drug, was that bone buildling had stopped by 18 months). This was the first anabolic PTH med and Tymlos followed in 2017.

Then Prolia was developed and approved in 2010 and I remember reading, back then (I was diagnosed in 2006) that a new wonder drug was coming out. Doctors were very excited about it. Then they discovered that there was a risky rebound that caused bone density to drop and fracture risk to go up dramatically when it was stopped. Studies showed that it could be used up to 8 years (maybe more?) but same risks of atypical femur and jaw necrosis as bisphosphonates, at some point, since it is also an anti-resorptive.

Evenity was approved in 2019 and is being used more and more frequently. It is both anabolic and anti-resorptive. A doctor told me that noone realized that the potent bone building that happens in the first weeks/months did not continue for the whole year. There are studies now using Reclast for the second half rather than those last 6 months on Evenity.

So- they didn't know about anti-resorptive causing femur fracture or jaw necrosis. They didn't know about Prolia rebound. Not sure they knew how long anabolic PTH drugs would work. They didn't know that Evenity's anabolic reaction petered out early.

I have benefited greatly from Tymlos, don't know what 4 months of Evenity did. I am told that Reclast is a necessity to "keep my gains." I avoided Prolia by chance and now my docs don't use it much. I am generally pro-medication due to my fractures and try to enourage their use, but honestly I am not sure whether, if osteoporosis were a men's disease, if there would be so much uncertainty.

It's hard not to feel like we are guinea pigs. Post-marketing reveals side effects and other flaws in these meds, most of which now limit use so what do we do long term? I still don't know and I don't think doctors do either. I like Ben Leder MD because he comes right out and says "we just don't know." And.."there is nothing new in the pipeline."

Studies take time and money- a lot of both- and it is going to be some time before we have more knowledge. Particularly needed is info on sequencing of meds , combinations of meds, and long term protocols. In the meantime the feedback of forums like this is more than helpful- essential.

Wondering what you decided to do after Tymlos? I am on Tymlos for 14 months and not looking forward to any of the possible next-step options. I have read your posts frequently, thank you for generously sharing your information and research.

Thank you for that. I've said the same exact thing to people about reclast. Now after 3 infusions of reclast going into ostepenia but my spine is back in op.and she suggested prolia. I'm scared but I feel it's only natural to be. I appreciate your comment. Did you do anything prior to injection? Extra water intake,tylenol, benadryl etc to help.

I only had two injections of Prolia and started noticing blusters on my gums Then they got worse and started making holes the bone had gotten so soft that it was like a liquid that would come through my gums if I pressed on them, I had never seen or heard of anything like this I started searching on the web and saw pictures of what was happening to me after that I made appointment with a oral surgeon and he was able to save my jaw by scraping out the dead bone it left a hole but the gums finely grew up and I haven't had any more problems. Now I tell anyone not to take Prolia.

WHY???? Would you go on Prolia after Reclast. You will have to go on Reclast again if you take the Prolia injection.

WHY???? Would you go on Prolia after Reclast. You will have to go on Reclast again if you take the Prolia injection.

Unfortunately, "windyshores" stopped posting here some months ago, and her account is inactive.

I am on Tymlos for 14 months, too. I haven't yet decided between Fosamax and Reclast, but I'll certainly do one of them. There's no sense going through all that trouble to take Tymlos for two years and then risk losing the gains.

Not if you stay on prolia.

Thanks so much for your reply. I’m so worried about the possible osteonecrosis of the jaw side effect with these “next step” medications. Do you have any thoughts on that? Worried, or not so much? Thanks.

WHY???? Would you go on Prolia after Reclast. You will have to go on Reclast again if you take the Prolia injection.