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@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.
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@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.
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@awfultruth I like your alternative plan of risedronate, or alendronate in between two rounds of evenity. Hope you will use bone markers to monitor treatment progress. Keep us posted!