Prolia and its side effects.

The input I’ve received here about Prolia trumps the info I did NOT get from my rheumatologist; he just said, “After you’re finished with your (13th dose?? of) Evenity, you’ll start Prolia.”

Not going to do that! Reclast was my stabilizer drug for some years previously and, provided I have not exceeded my lifetime infusion limit, it’ll likely be my future stabilizer.

Thanks to all who have published on this forum - the info may have saved me from a lifetime of Prolia use. I had serious, lasting, side effects from Tymlos - who can say that I wouldn’t have the same or even worse from Prolia after a few injections and not be able to discontinue it. What then, peeps?

Cheers, all!

EXACTLY. I have a similar issue. started Prolea 7 years ago without issues and hear the same …it is forever,! IF there were improvements on scans is one thing, but very little improvement on scans,….until now after last 2 injections having severe fatigue and sleeping 11-12 hours a night with some days an afternoon nap thrown in for good measure. I would not have taken Prolea at all but was/ continue to be told it’s the greatest since apple pie and I can never stop! It is NOT ! I want to get off because this fatigue is not the quality of life I desire. Big Pharma again and no recourse! There SHOULD be but too much money being made. Thoughts?

I’m sorry to hear that you’re having difficulties with Prolia, @shani. Through others’ posts on this forum, I seem to remember reading that one can get off of Prolia; it’s been described as a difficult process, but perhaps one you’re willing to attack. Some other members will likely respond to your message and give you some insight into what they know about the subject.

Unfortunately, we do need these meds and, like you and so many others, it’s a quality of life issue for me. Do I like it - hell NO - docs should be more upfront and we need to be more informed about what they’re prescribing and the ramifications of the meds going forward. I think the lifetime limit for Reclast was discovered some time after I had my first infusion.

Wishing you the best! Cheers!

EXACTLY. I have a similar issue. started Prolea 7 years ago without issues and hear the same …it is forever,! IF there were improvements on scans is one thing, but very little improvement on scans,….until now after last 2 injections having severe fatigue and sleeping 11-12 hours a night with some days an afternoon nap thrown in for good measure. I would not have taken Prolea at all but was/ continue to be told it’s the greatest since apple pie and I can never stop! It is NOT ! I want to get off because this fatigue is not the quality of life I desire. Big Pharma again and no recourse! There SHOULD be but too much money being made. Thoughts?

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.

Thank you very much @windyshores for the overview! I'd like to point out a few things from my readings and welcome any input from any members. Evenity - it's a beast in building bones in a quick manner. The saying that it's anabolic during first few months and antiresorptive in second 6mo doesn't hold entirely true to me. If you look at btms changes during 12mo evenity treatment, the decrease in CTX is greatest at 14days to 1month, so is increase in P1NP. This tells us it is antiresorptive from the very start, just its anabolic effect overpowers its antiresorptive effect during early months of treatment. For first 0-3 and 3-6mo, the bmd% increase were comparable, but for second 6mo period, bmd increase continued although to much lesser degree (approximately 40% compared to 1st 6 mo) according to some studies, still very impressive. I also read that men and women retain bone mass differently after anabolic treatment - men retain much better. This might be the very reason (of course among other things such as lifestyle) Mccormick just needed a period treatment of fosamax after the completion of Forteo, while most of us go on a drug to another and another. If it were up to me and cost isn't an issue, I'd use antiresorptives as a replay tool not a mean to maintain bone density and its architecture. Of course it's easier said than done.

EXACTLY. I have a similar issue. started Prolea 7 years ago without issues and hear the same …it is forever,! IF there were improvements on scans is one thing, but very little improvement on scans,….until now after last 2 injections having severe fatigue and sleeping 11-12 hours a night with some days an afternoon nap thrown in for good measure. I would not have taken Prolea at all but was/ continue to be told it’s the greatest since apple pie and I can never stop! It is NOT ! I want to get off because this fatigue is not the quality of life I desire. Big Pharma again and no recourse! There SHOULD be but too much money being made. Thoughts?

My doctor strongly advised against Prolia saying if you get on it you need to take it the rest of your life because if you get off your bones will literally crumble. I read another on here testify to that just missing her dose of Prolia for two months and she had numerous new fractures.