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Are we overdosing Reclast???

Osteoporosis & Bone Health | Last Active: Oct 23 5:06pm | Replies (88)

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@windyshores

@awfultruth I noted the fact that hip did better on 2mg then 4mg, and wonder why. My hip is much worse than spine so that caught my eye. (The third study was stopped because of a stastically significant difference in favor of 4mg, as I recall.)

As for side effects with lower vs higher dose, many side effects are not "dose dependent" in medicine, just as some sensitivities and allergies are not "dose dependent." If a person has anaphylaxis with chocolate, it doesn't matter how much is ingested. Ditto with celiac and gluten (I know this from my daughter).

I originally was limited to Forteo as an option (before Tymlos came on the market). I did a tricky thing to get a 10% dose. I shot the entire dose into a sterile cup, then used my kid's insulin syringe to measure it, then shot out 90% of the dose and injected the remaining 10%. I had the exact same reaction that I had with the full dose. (I also went to an immunologist who tried to desensitize me with smaller doses and declared my immune system had "gone awry." I was puzzled but happy that titrating Tymlos worked.

I have had low doses of every med at this point (except Prolia, which I won't take) and had side effects with every one. Of course I accept fever with Reclast (even at 20% dose) but there are also effects for me like pins and needles, GI issues/reflux, and we'll see what else.

I think that for folks like me (lupus, previous cancer, afib, high antibodies for scleroderma, central vertigo, central migraines, history of Lyme etc.etc.) that our bodies react strongly to very small amounts of medications and the appearance, at least, may be that these reactions have more to do with our immune system reacting to a foreign subtance and less to the actual dose.

Of course, as we well know, noone in medicine seems to know much about any of this, not for lack of trying, but lack of research and most research is still going to take time. Factors like convenience for the medical system, access to infusion centers, patient compliance and of course money are probably determining dose. Amgen probably did not want to make a whole system for production of two different dosing pens for instance. I am skeptical of everyone and everybody to be honest.

Now what do we do if we react to most medications offered in such a way that makes them intolerable? I am very willing to suffer side effects that are even barely tolerable but some are just no. Is the choice more fractures? I am up to 7 as I have written many times before. I lifted just a few books and my back is killing me.

Bottom line: If half doses are what are tolerable and full dose is not tolerable, then we should be able to have half dose. Insurance, without a medical reason, may insist first that we try full dose. Insurance is a whole other problem. They don't want to pay for infusion center/staff/infusion multiple times a year.

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Replies to "@awfultruth I noted the fact that hip did better on 2mg then 4mg, and wonder why...."

I can handle one dosage of my BP medication but an increase left me in trouble for weeks after dropping back down.