Starting Gattex for GI Issues - Experiences?

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Storm54
Feb 09, 2023 9:49 pm

So my GI doctor has gotten me approved for Gattex—a drug that has to be injected daily and is supposed to (eventually) help with absorption. After a lot of hoops, it looks like I will be starting next week.

The doctor is very positive about it, and I'm worried because of the list of side effects. The most common one is nausea, and I am still having some problems with that (which seems to be connected to the activity of my fistula, which is just below my stoma). I really don't need more nausea. But it also can (less commonly) cause problems like blockages.

Anyone here dealt with it? Can tell me about it?

Thanks!

w30bob
Feb 10, 2023 7:27 am

Hi Storm,

There are a few folks on here that use it, as best I remember. I think Warrior was on it... hopefully, he'll chime in. I was offered Gattex after I was short-gutted and refused. The side effects are scary, especially the "makes abnormal cells grow faster" thing. The other thing I didn't like was that as soon as you stop taking it, you go right back to where you were before, meaning the increased absorption disappears... so you're on it for life. I mean, if it gets you off TPN, or you just plain need the mucosal improvements, it might make sense.

It's been a few years since it was offered to me, and then my gastro brought it up a few months ago, and I'm still not a fan. There's more side-effects data now than when it was first offered to me, but I haven't reviewed it. It's also ridiculously expensive, so you'll stop getting a Christmas card from your insurance company if you saddle them with the cost. But the bottom line is it does seem to work for a lot of people, and everyone is different. Just make sure you understand the side effects and, more importantly, how they'll deal with any of the major ones if you happen to be one of the unlucky ones who develop them. The good news is you can stop at any time and the dangers seem to go away just as quickly, if they haven't progressed into uncontrollability. Like any medication, if you happen to be in the percentile of people that it helps... it could be a very beneficial thing. And if you're in the other group... not so much. I've noticed many push for its use pretty hard, despite the severity of the side effects... which tells me something. But that's just me. Hopefully, others will jump in now that I started the conversation and let you know their real-world experiences with it.

;O)

Bob

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