Hey, how are you doing? I'm sorry you're going through this.. I definitely empathise with you.. I've got one or two P-V fistulas that have taken me through hell the last couple of years...
But in answer to your question, I've tried Infliximab (Remicade) and Adalimumab (Humira biosimilar)...
My fistula started in 2019 with pretty full on symptoms from the outset.. I had mixed results from both biologics but please don't let it put you off... If the lottery ran on bad luck I'd be a billionaire by now 🤦 ... personally, I'd say try what they're offering biologics-wise before you go for the really big decisions..
After my first Infliximab drip I got two infections the week after and then I had a couple of days where every muscle in body was paralyzed .. after it wore off, I naively went in for my second drip, but I went into anaphylactic shock about 2 mins in so the whole course was abruptly stopped.. My fistula did calm down for a while though even with that hint of exposure to he drug 👍
After that, I initially only tried Adalimumab to fill the time because Covid had hit and put a stop to any surgical plans I had, so while I was waiting the pandemic out, I started the Adalimumab injections on the off chance they might help..
The first six months I had rough side effects with nausea, vomiting, headaches etc, but still worked through it. And it it did work, my symptoms almost disappeared and I probably would have been happy to carry on like that long term rather than a risky surgery. But after about 6 months the effect was wearing off so the hospital doubled my dose... And it worked again 😂..
But the next 18 months were easily the worst I've ever had. The treatment was mostly still working for about a year but I started getting severe joint, skin, throat issues, unexplained bruising etc .. Ultimately, I developed drug-induced lupus from the Adalimumab, which I'm certain is pretty rare, and almost never with the severity of symptoms I had/have, please don't be off put by me. 😊.. when i finally had an agreed diagnosis it was a major relief cos I couldn't have coped with that condition much longer. Luckily, unlike STE Lupus, drug-induced is temporary and wears off after the drug is stopped.. so I'm still getting flares now but easily manageable in comparison and each one is milder.
Anyway, the Adalimumab itself was working, and nobody had expected it to, so that was a nice surprise.. if you can tolerate them (honestly most people have only very mild side effects if any) I'd say give it a go, you can always change your mind with biologics, but you can't with surgery.
I'm onto my last resort now, on a waiting list to have my pouch removed and a permanent ileostomy. I'm fairly sure none of my reply was what you were looking for, sorry, but feel free to message me if you wanna know more, I'll be more reassuring next time, promise 😂, or if you want to vent about the god awful turmoil that is a PV fistula!
Good luck with whatever you decide though,a
Tke care, FF
