Are we overdosing Reclast???

@windyshores When I entitled this discussion "Are we overdosing Reclast???" I certainly did not intend it to be a "passive position leaving anger and fear". Although as I write this it occurs to me that anger and fear are quite reasonable responses to our situation with osteoporosis.

But to get back on topic I did not intend it to be a passive position and I do not see the responders here being passive. Each person is going to respond in their own way to health information. If someone started a grass roots movement that advocated for more careful dosing of medications I would see that as great. If someone talks to their doctor about whether the standard dosage is best for them, then I see that as great too. If another person thinks this is nonsense, well, I'll just have to accept that also, won't I?

For myself I've decided I want to try risedronate or alendronate for a year and then do another round of Evenity. I'm wanting to follow Dr Michael McClung's suggested strategy of using a less powerful bisphosphonate rather than a more powerful and longer lasting one like Reclast to proceed a round two of Evenity. And I'm doing a little dance with my doctor trying to make this happen.

BTW thanks to @19kcm56 for posting the link to Dr Susan Ott who is another doctor having concerns about possible Reclast overdosing. I had seen her work before and forgotten about it.

Just when I thought it was safe to be confident in my overdosing thesis I found this study (link below) suggesting that the greater the initial flu like symptoms (acute-phase reaction (APR)) to Reclast the more effective it seems to be in reducing fractures. BMD was not changed but somehow the greater reduction in fractures was in those who had the initial unpleasant and unwanted symptoms that everyone is trying to figure out how to avoid.

I'm not at all throwing out the idea that the dosing of Reclast is too high and too inflexible but, well,
the world is just so complicated. And of course this one paper is not proof positive by any means that more acute phase reaction is better, but it is definitely something to think about. The authors are quite reasonable and do not claim this to be "proven fact". I used to wonder about the same thing with covid shots - if I didn't have a reaction could I trust it was taking effect? Not to worry there as I typically had a day or so of feeling lousy.
Note that there is no discussion of the various long term bad reactions to Reclast that are talked about on forums. This is strictly in regard to those initial flu like symptoms.

Their summary suggests it may help those with an unpleasant 3-5 days after the infusion to know that they are getting extra benefit. They did not try to say those without reactions were not getting good benefit.

If you followed this logic you might forgo those efforts to mute reactions to Reclast like using Tylenol and Claritin. Though you certainly wouldn't forgo extra hydration because that's to help protect the kidneys. I'm not recommending this but just noting that if this were proven to be correct it might require rethinking a number of things.
BTW, one of the this papers authors (Ian Reid) was also an author for two of the papers about dosing of Reclast that this thread started with. Here's this new paper:
https://onlinelibrary.wiley.com/doi/epdf/10.1002/jbmr.4434

@windyshores When I entitled this discussion "Are we overdosing Reclast???" I certainly did not intend it to be a "passive position leaving anger and fear". Although as I write this it occurs to me that anger and fear are quite reasonable responses to our situation with osteoporosis.

But to get back on topic I did not intend it to be a passive position and I do not see the responders here being passive. Each person is going to respond in their own way to health information. If someone started a grass roots movement that advocated for more careful dosing of medications I would see that as great. If someone talks to their doctor about whether the standard dosage is best for them, then I see that as great too. If another person thinks this is nonsense, well, I'll just have to accept that also, won't I?

For myself I've decided I want to try risedronate or alendronate for a year and then do another round of Evenity. I'm wanting to follow Dr Michael McClung's suggested strategy of using a less powerful bisphosphonate rather than a more powerful and longer lasting one like Reclast to proceed a round two of Evenity. And I'm doing a little dance with my doctor trying to make this happen.

BTW thanks to @19kcm56 for posting the link to Dr Susan Ott who is another doctor having concerns about possible Reclast overdosing. I had seen her work before and forgotten about it.

In my experience, the initial reaction (I had 5 days fever on 20% dose) is not the problem. The longer term side effects are the problem. I would like to know whether they are dose dependent. If it is an immune or autoimmune reaction, I think it is possible that lower doses won't solve the issue.

@awfultruth just to be clear I agree about possible overdosing, I posted a similar thread about Evenity dosing. Results may tend to be better for most people, but for some of us, less is more.

I just don't think the system is going to change. Class action suites, reports to MedWatch and our complaints to doctors haven't changed the protocol. Again, I think the issues favoring the 5mg dose are money, time, convenience, compliance, and the need for infusions by cancer patients.

On an individual basis, we can ask our doctors for lower doses but they most likely will want to follow the protocol unless there is medical justification for a low dose (like my kidneys and afib). Failing that, a sort of guerilla tactic is to decline the full infusion (I declined the second Evenity shot twice). I think many people don't know they can do that: that is what I meant by "passive."

For many Reclast is not an evil drug and very helpful. Another endo- I forget his name but another poster sent it to me_ has a video on the positives of Reclast that was enlightening. My friends take it with no problems.

I happen to have severe reactions in the first 5 days and a variety of side effects (pins and needles, GERD, dizziness, neuropathy) that I don't like to discuss ordinarily but just to show I am in solidarity with those who are suffering. I have these even at a 20% dose which makes me wonder if dose is even relevant. I have lupus and a wonky immune system.

@windyshores On your thinking that the dosage may not be relevant you mention having side effects at a 20% dose so you wonder if dose is even relevant. Not to argue that you are wrong or in particular wrong about a drugs effect on your body - but I do think of it a bit differently.
And I think it is different for my body.
First thought was how do you know that you wouldn't have responded worse if you had a full dose?
Second thought along that line is that I've been extremely food and chemically sensitive for 40+ years. All those years if people asked me why don't you try just eating small amounts of a food and building up resistance to it. That could solve your problem. I would always reply that the dose didn't matter, I react to tiny amounts of foods I cannot eat (including those injections of minute amounts of whatever food was being tested). Anything I reacted to no matter the dose just made me more reactive for a few days. There was no build up of resistance or immunity.
Those discussions-arguments were sometimes pretty unpleasant to me and it was hard for me to have clarity and have a really nuanced discussion. I would argue that the tiny dose idea just would not work. I could react strongly to one blueberry I did not have to eat a bowl of them to react. There was not a safe dosage!
At my worst that was perhaps true. But looking back I think that probably a bowl of blueberries would probably have had worse consequences than the single blueberry. If you react to a single blueberry strongly it becomes difficult to judge things clearly.
I see I could go on forever with my thoughts about this. Maybe I can just say that even though emotionally I might have thought the dose didn't matter because one bite of something could make me feel bad for a day - in fact dose did matter and could make the reaction be stronger or last longer.

So this is not to argue against your experience but to suggest that there are many ways of reacting to drugs (and foods and all kinds of things) and that dosage could matter in different ways to different people. For me dosage does seem to clearly matter in most everyway I can think of. And of course that doesn't mean that a standard dose of Reclast will cause a problem for me but if I can get roughly the same benefit with a lesser dose of any powerful med I'm going to want that lesser dose.

I did not want to take prolia. I asked my doctor if I could take bisphosphanates instead. Her response was that this was the protocol. I will see what happens with my next dexa scan, and find another doctor if I feel like I need treatment. I would really like to find a doctor who knows more about osteoporosis treatments than I do, and who is open to discussion

rn40, My sentiments exactly..."I would really like to find a doctor who knows more about osteoporosis treatments than I do, and who is open to discussion." Anyone out there know anyone in the Houston area?