7 week Post Entyvio----worsening flare

I just had my 3rd loading dose of entyvio last Wed. At the time I was having fully formed lovely, perfectly normal bm's...just at 6 a day. Things started deteriorating 2 days ago when I started passing m. Today, loose watery stools, m, and some major cramping that left me sweating like a race horse on the toilet. I'm still at 6 movements. No b so far.

I've read 47% of ent users were in remission at 6 weeks. My GI said it takes 14 weeks to see an improvement. I've committed for the 14 weeks, but I am feeling rather discouraged. After waiting so long for this new drug i was so hoping to be one of the lucky ones.

My question: Does this mean the drug is not working or will not work if my minor flare is becoming moderate?

I'm really worried this will get worse and out of control. I'm thinking the next time I have formed bm's with no other symptoms other than quantity of poops, I'll likely just try and live the best like I can and not complain. Funny how passing m now has me fretting for the good ol' days of just 2 days ago.

In addition to missing my last IVIG dose in effort to tolerate Ent, my doc also told me to cut my pentasa by half. I've also been taking Cold FX and GSE. All these could be reasons for a worsening flare.

For those keeping track....my last IVIG was postponed due to Ent side effects. I'm wondering if that's why i'm beginning to flare. Perhaps I still need both IVIG and Ent to get me stable. I've left a message for my GI to see if he can get me in for an emergency dose of IVIG before this flare gets out of control.

After my 2nd Ent infusion I noticed I had less urgency....as in a beautiful 5 min to get to the potty, rather than an instant, panic ridden dash.

Post Edited (U B Tough) : 9/1/2015 10:30:13 PM (GMT-6)

bananagirl said...
Can you request a stool test? My GI doctor said entyvio has the highest rate of c diff infections out of the drugs prescribed for severe UC. He said he is very hesistant of prescribing it because so many of us have c diff problems.

Thanks Banana---I had c -diff years ago and unless it manifests itself differently, I wouldn't say this was c-diff at all. back then I had severe d and incredible weakness that I couldn't move without being winded. I was given pre-meds this last infusion. It's worth mentioning to my GI though.

I have been on Entyvio for 9 months now with 8 infusions never had a c- diff problem
Blood work always ok
My BM s are down to 1 or 2 a day and loose My GI said not to worry about it