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Thread: Anybody taking Fosamax?

  1. #11
    Distinguished Community Member jingle's Avatar
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    Oct 2006


    Many (?) years ago my regular doctor put me on Fosamax because my years of smoking had just about ruined my bones. After while my neurologist was looking at my list of meds and threw a fit. He said Fosamax did more harm than good and told me to stop taking it.

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  3. #12
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Oct 2006
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    ((((((Hugs to All)))))) ~

    agate ~

    I don't know the statistics associated with jaw necrosis from Fosamax and its clones. I know that it is listed as a known serious side effect. I know that years ago, my very healthy, strong friend, still is at 96 years old, had numerous problems with jaw necrosis, after being on Fosamax for several years. Many years later, her doctor convinced her in her 90s that she should get the Prolia injection. She obliged, against my warnings, and she had jaw necrosis and lost teeth.

    When I told our highly respected ICU intensivist that Jon's endocrinologist recommended Fosamax for Jon, he rolled his eyes, mouth gaping, and said emphatically, "That is the worst possible drug you could give to Jonathan!" Not just the interactions with his seizure meds, nor that Jon couldn't stand or sit up straight on his own for 30-60 minutes, or tell us if he had indigestion, or a sore jaw, or the potential for fractures as a result of Fosamax, but the fact that as long as Jon lived he would be taking Dilantin and Depakote to control seizures. Both of those drugs contribute to bone loss and osteoporosis. It's a dog chasing his tail.

    We had to make a choice: seizures or osteoporosis and broken bones?

    And you are right that many women (mostly) have had fractures, while taking Fosamax. When my friend shattered her wrist walking her dog, her doctor told her it had nothing to do with Fosamax. I remember reading about women, in their late 40s, early 50s, breaking ankles and legs just stepping off of a curb. If Fosamax is supposed to strengthen our bones, then it wasn't working for my friend, or these other women, who reported fractures.

    My blood boils every time a doctor tells me that a side effect is "rare." My boys had so many "rare" side effects to drugs they were given, it is head spinning. It may be considered "rare" under the general population, but for people with multiple medical issues, which may also be "rare," it's a different kettle of fish.

    Dr. K has told us a few times that he's given Opdivo to many patients long term, but Jim is the first patient, who had the rare side effect of his white blood cells dropping to a deathly low, as well as his platelets. Suddenly, everything went South, even though Jim did so well on Opdivo. And for his age and history, Jim was in good health, when cancer showed up. Doctors, nurses, and other medical professionals were stunned that he wasn't taking a BP med, or diabetes med, or cholesterol med. His blood work, aside from cancer, was unusually good. But Opdivo's rare side effect blindsided him.

    With every pharmaceutical or over the counter medicine or even MMJ, we take a risk. Legally, drug manufacturers are required to tell us the risk and adverse effects. Enough patients have reported adverse effects for those to be listed in dispensing literature. The list of adverse affects from any drug always takes up the most time in a TV commercial.

    "Less is more" is often true. And these are not easy choices to make, which is why we have to be fastidious about looking into everything about any drug we are prescribed. Being well informed is the first step in making the right decision.

    Love & Light,

    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  5. #13
    Distinguished Community Member agate's Avatar
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    Yes, people with chronic medical conditions already, before the possible need for one of the osteoporosis drugs showed up, just might be far more apt to develop those "rare" side effects, mightn't they--just because they already have conditions about which not enough is yet known?

    I keep remembering that neurology is really a fairly young field, and I have the notion that they've only begun to find out about neurological disorders. And yet the experts feel free to prescribe whatever new drug comes down the pike.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

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