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Post by colormist on Apr 17, 2018 15:43:46 GMT -5
Well, this is good news! I just got a google alert for "fructose intolerance" and one of those alerts was for a medication. The excerpt made me think it was for treating HFI--sadly that is not the case. However, scrolling down to the part that mentioned Hereditary Fructose Intolerance. www.pharmiweb.com/pressreleases/pressrel.asp?ROW_ID=273809"Risk in Patients With Hereditary Fructose Intolerance PRAXBIND contains 4 g sorbitol as an excipient. When prescribing PRAXBIND in patients with hereditary fructose intolerance, consider the total daily amount of sorbitol/fructose consumption from all sources, as serious adverse reactions (eg, hypoglycemia, hypophosphatemia, metabolic acidosis, increase in uric acid, acute liver failure, and death) may occur. " Not the best advice as 4g of sorbitol is way more than a HFIer should eat in a given day, but they are acknowledging we exist and will have a reaction to the sugar included in the medication. I particularly love how it ends "and death may occur". Thanks peeps for acknowledging you might kill us if we take your medication!
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Post by hfimomof3 on Apr 18, 2018 19:13:32 GMT -5
It says: "NDICATIONS AND USAGE Praxbind® (idarucizumab) is indicated in patients treated with Pradaxa® when reversal of the anticoagulant effects of dabigatran is needed:
For emergency surgery/urgent procedures In life‐threatening or uncontrolled bleeding"
I am not a doctor but it sounds like it's mainly used for situations that are emergencies (eg car accident victim with bleeding) where there might be uncontrolled bleeding because of the other drug (Pradaxa). So more of a one-time thing maybe? and where the risk of NOT using it needs to be balanced with the risk of using it.
it's good that they thought of us, although of course it would be better if drugs could be designed with an excipient other than sorbitol or sucrose.
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Post by colormist on Apr 19, 2018 9:06:08 GMT -5
Right? I hope we never have to use Pradaxa. But if you're bleeding out, I would think a HFIers blood sugar would also be low. Maybe they can give a glucose IV to counter the Praxbind's sugar? Still, it would be nice if they'd just use glucose instead. Probably should add this HFI warning to Pradaxa as well.
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