Does anyone have a solution to help manage Reclast side effects?

Stanford Bone Center now your infusion makes sense. Karpf is a gem, enlightening all the physicians around him.
Prolia perserves the cells that break bone. Reclast casues the death of those cells. Initially faster than Reclast, Reclast continues to offer fracture protection long ( some say ten years) after you stop taking it.

Susanjane, Did your doctor mention why you could not continue with Reclast after 5 years?

Basically, there is a time limit to Reclast infusions. Not meant to be on it forever as Prolia is forever.

@susanjane77 the statistics I have seen would seem to indicate that the risk is still rather low at 5 years. I personally would be more afraid of Prolia rebound and would ask the doctor if one more Reclast would be enough to stop the rebound from stopping Prolia. Otherwise Evenity might be a way to go depending on whatever studies have come out.

Of course one Reclast would mean delaying dental work for some months.

I do not understand where you are coming from. I appreciate your note but you are NOT my doctor! Not every statistic is proven and as I mentioned here once, you can only be on Reclast for so many years. I have been told this twice by two endocrinologists I have seen. My time with up and my doctor and I discussed all the options and we chose Prolia and I am sticking with it. If my DEXA scores in a year do not show improvement, then I will have another discussion with my doctor.

By the way, do you know the cost of Evenity and not many insurance companies cover it but that is besides the point. If my doctor thought Evenity was better than Prolia, I would have gladly paid out of pocket.

I hope this satisfies your curiosity and I really dont care to explain it again. All the best.

I'd like to remind everyone of the Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/), specifically sections one and two:
------
1. Be careful about giving out medical advice:
- Sharing your own experience is fine, but don't tell other members what they should do.
- Experiences and information shared by members on the Mayo Clinic Connect are not a substitute for professional medical advice, diagnosis or treatment.
- Never disregard professional medical advice or delay in seeking it because of something you have read on the community. See the full Disclaimer.
- Mayo Clinic provides high quality, expertly developed health information. Visit https://www.mayoclinic.org/
-----
Medical tips or information may be removed if a member:
- Tells another member what to do
- Attempts to provide a diagnosis for another member
- Makes a medical statement that cannot be verified clearly as coming from their own personal experience
- States information as fact or makes a claim that is not properly referenced
References information that is not evidence-based and/or does not come from a verified medical expert source.
-----
2. Remain respectful at all times:
- Exercise tolerance and respect toward other participants whose views may differ from your own. Disagreements are fine, but mutual respect is a must.
- Realize that sarcasm and joking will often be misunderstood.
- Be inclusive. Not everyone shares the same religious or political beliefs. Don't impose your beliefs on others.
- Avoid comments (even when said in jest) that single out a specific group of people.
- Personal attacks against members or health care providers are not acceptable. Such posts will be removed.
-----
With these guidelines in mind, some posts have been removed.

Osteoporosis medications are powerful treatments that elicit strong public commentary (both for and against) on Mayo Clinic Connect and other forums. With strong medications, experiences can vary from successful to those who experience the rare side-effects that lead to alternative medications. Ultimately, we use our experiences to help ask our providers more informed questions, but the decision must be between the provider and the patient. For many, risks of osteoporosis outweigh the rare side-effects. We must remain respectful of one-another when discussing tough decisions like which treatment options to seek.

I am in this position right now. I am due for my 13th Prolia shot -- I've been on it for 6 years. I had a failed bridge last year, which resulted in an extraction and a bone graft. Although that part went fine, 4 months after my June Prolia shot this year, my oral surgeon placed two implants in the area and they both failed, with bone starting to erupt through the gum line. My oral surgeon removed the implants immediately so I could heal. I am now in one of the worst catch-22 positions of my life. I was supposed to go on Reclast to transition off of Prolia, for at least one year, possibly two, with dental work proceeding after that. But, with the early onset of ONJ I am no longer a candidate for Reclast, and may have to go on HRT (Evista). I don't think this drug is strong enough to prevent the rebound effect of Prolia, especially with as many years as I have been on this drug. My most recent dexa scores indicate I have now moved to osteopenia range in all categories and the diagnosis is no longer osteoporosis. I realize this is from taking Prolia and if I go off the drug, I am at risk to return to osteoporosis levels. It is a quandary for me because I am also scheduled for a knee replacement in February. What will happen if I go off Prolia without taking another drug? I have never had any fractures, even though I have fallen multiple times during the course of the last 10 years. I know it's against advice to just go off Prolia cold turkey but I'm not sure what other options I have now. I also started the workout at osteo strong about a month ago, but I think if I go off Prolia completely or even if I transition to a less effective drug, I may have to quit osteo strong because of the risk of vertebrae fractures. I have read so much literature and have looked at so many videos and still have no clear understanding of what to do but I'm running out of time because I was due for my Prolia shot December 15th. I'm not getting any clear direction from the bone health specialist that I've been seeing. I do have an appointment with an endocrinologist in january, so maybe I will get some help then? Also, since I've been on this forum I have read about CTX blood test and I had never had one, even though the bone health specialist knew I was facing very involved dental work. I'm at a loss as to why this blood test was not ordered for me? So many questions so little answers.

@jheieck you describe the Prolia catch-22 (Prolia trap?) so well and it may help others. So sorry you are in this position. This is what my doctors are afraid of. But there are instances when Prolia is also the only option. This is all so difficult.

I just want to add something here about posting our experiences, research, and avoiding advising (like doctors!). Many of us (including @susanjane77) seek more than one opinion, For cancer I got 4 opinions! Then we come on this forum or talk to McCormick or read something and we end up with like 10 opinions. Any post on here is an opinion and we try to make it clear that it is not advice.

The field of osteoporosis needs more research. Too many of us are in one "trap" or another. Noone has told me what I will do after Tymlos, Evenity and Reclast. Some of us have a lot of years left.

Now that Evenity is on the market, since only 2019, things are even more complicated since there is little knowledge about whether you can do Tymlos or Forteo afterward, or whether it helps with Prolia rebound, or whether Reclast can be substituted for the last half, or whether we can eventually do short bursts of Evenity between other drugs, etc. etc. Researchers didn't even know that it was only anabolic for a short time. (They also didn't know that anti-resorptives could cause ONJ or femur fracture, or that Prolia could cause rebound.)

I am grateful for my doctor who has shown flexibility given my complex health situation. But doctors are bound by "evidence based medicine" meaning studies. And we are lacking studies!

I apologize for being persistent in suggesting questions for someone's doctor or suggesting another opinion from time to time. It is not helpful to express distrust of doctors. I believe there is a good fit for each of us. Many on this forum do research and then have well-informed discussions with their doctors, which can result in going a little outside the bounds of evidence or trying something new.

I am grateful for the ideas that others have brought to this forum which have helped me a lot. I think we all have the intention to be helpful and again I am sorry @susanjane77 if it came off as being too pushy.

to @windyshores
To my opinion an advice and sharing experience in this forum was more useful for me than my consultations with doctors. The specialist that I visited with my DEXA results only prescribed me bisphosphonates, calcium (with vit D) and walking. Nothing about vitamin K, Mg, NAC, or resistance training. I learned everything, including about Marodyne Liv platform at this forum and am very grateful for it. Two doctors that I visited never put my any questions to understand the origins of my OP. There were no blood tests prescribed in order to understand more about my OP. I find here more understanding and compassion that during visits of specialists. But may be I just have bad luck.

@jheieck I'm so sorry you are in this situation. It's clear that you are doing your homework and trying to find a reasonable solution to what is unfortunately an unreasonable problem.
I'm going to ask some questions, offer some speculations, perhaps some possibilities and one paper on discontinuing Prolia.

First do you really have to make the decision to stop Prolia right now with no time left as your 6 months period is up?
Maybe take one more Prolia shot and give yourself another 6 months to think this thru.

Is the Feb knee replacement driving this in one direction or other?

My opinion is do not stop Prolia without some drug transition. Too dangerous. Evista or bio-identical hormones could help somewhat but not at all likely to be enough.

If you could see one of the top osteo doctors you could get some advice on how to navigate this. And of course you need expert dental advice also. There should be doctors and dentists who have already dealt with this situation. Perhaps a consult with Keith McCormick could be helpful.

Perhaps staying on Prolia is your best choice or does that make your dental situation impossible to live with?
Is one or two infusions of Reclast definitely out? I know your jaw bone problems are not a good starting point for using Reclast but you are weighing all sorts of imperfect options here. I'd suggest not ruling out anything based on general rules.

In weighing the decision whether to stop Prolia I can offer some slight clarification of the consequences.
There are two slightly different huge factors to consider when stopping Prolia esp after long term use.
I make the distinction between the two because the odds of them happening and the consequences if they do are related but quite different.

One, without a follow up most everyone will lose the gains they made with Prolia and sometimes more that what they had gained. Depending on where you were when you started that can be pretty awful but it does not mean you will have the multiple spinal fracture problem. Maybe you will lose a lot of bone but not start fracturing.
Number two is the multiple fracture problem. As far as I know no one knows the frequency of this problem. We know it happens but we don't know how often. We know it is more likely if you've been taking Prolia longer but I've not seen anyone suggest a way to predict who this will happen to.

So, almost everyone stopping Prolia without a follow up (and one that is successful) will lose their Prolia gains. But it is unknown what percentage will have the multiple fracture disaster. I guess that it is a fairly small percentage of those stopping Prolia but that is just a guess and no comfort to those who suffer this
consequence.

A wild speculation on my part is that you could try to transition off of Prolia with Reclast and if successful then do a bone builder (Evenity, Forteo or Tymlos) to restore a more healthy bone building/bone remodeling climate. This is just theoretical but in looking at how to deal with osteoporosis long term we need to find out if we can alternate between antiresorptives and bone builders. Perhaps shorter courses of each after the first early rounds of them could lead to a healthier balance between building, remodeling and resorption and dodge the ONJ and femoral fractures and bones that are too brittle?

Sorry this was so long. I wish you good luck with your decisions.
Here's the discontinuing Prolia paper:
https://e-enm.org/journal/view.php?