Entyvio (or any drug infusion) timeline...

[BB3000]

Hey folks, about a week into a flare and as is to be expected, freaking out and frustrated.

I started Entyvio in the first week of September after about 4 months worth of a painful, miserable flare. I was told it takes up to 6 months to work, so I was pleasantly surprised to discover I felt better—like remission better—by the 2nd week in October. No pain, no diarrhea, no blood, no bloating, no incontinence, no dry heaves of the butt, and best of all, no existential dread or hopelessness. It was great.

Outside of 3-4 days before Thanksgiving when my 2yo got a bad stomach bug and I caught it, it was smooth sailing, until last Monday night, when I overate at dinner and felt pain throughout the night. Over the past week, I’ve descended back to (my) rock bottom of this past summer, and all those things I mentioned that I thought the Entyvio had fixed, are back with a vengeance.

I am calling my GI on Monday so we can go through the charade (sorry for the eye-rolling cycnicism) of a stool test for C Diff, then he can tell me there’s nothing much we can do in the short term besides a steroid... woohoo.

My question is: the “remission” I thought I was experiencing, could that have been something other than the Entyvio? It coincided with me starting to take Vitamin D every morning, so is there a chance that provided my system with a little jolt that was ultimately unsustainable, but the Entyvio hasn’t really kicked in yet? I just had my 4th infusion this Wednesday, so might I be seeing a little boost soon? Do infusions give work quickly like that and does anyone else experience a cessation of symptoms, then a relapse... and THEN remission with any biologic? Just looking for some hope in the abyss here...

 

[Guerrero]

Hi BB3000,
I've been on entyvio (every 4 weeks) for 1 year and a half
I think it's not rare to have up and downs, especially when biologics have not fully kick in, like in your case.
The action of entyvio is slow. Basically it binds the new white cells to be activated in your gut... so old ones could still activate, and probably it cannot be effective on all the white cells, so I guess inflammation could still happen as it did on your case.
I think the fact you were feeling better the last weeks before last monday, is very positive. It could mean it's starting to work, and you are on the road to remission!

Of course remission has to be proven also with tests and scans, but take the good news step by step. Don't give up with the hope entyvio works on you, the 4th infusion is still the very beginning.

There is a support group here for the ones on entyvio I recommend to you. Many members like me have shared their stories. In my case it took like 5 months for entyvio to work i'd say.

Also, not sure how many times you take it at the moment (every 8 or 4 weeks), but there should be the possibility to increase the dose to evey 4 weeks from every 8.
Good luck

 

[BB3000]

I’m on every 8 weeks as of now. Sent in the stool test to the GI, and will schedule a follow-up once they get the results. On the plus side, having a flare has curbed my diet and cut out alcohol entirely so I’ll be in great shape!

I’m an impatient sort, so Crohn’s is just HELL on my mind, but I am determined to give the meds every shot, if only because the side effects of Remicade and Humira are something I’d like to avoid if at all possible.

Probably gonna go on a low-risk steroid (NEVER Prednisone) as a bridge for a month. Feeling a tad better today so it all doesn’t seem so hopeless.

*shakes up dice* C’monnnnnnnnn drugs!