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...
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...