Entyvio thoughts

Longtime lurker, first-time poster. I've had UC since May of 2011. I was on Remicade until this past summer, switching over to Entyvio on August 15th. I just finished my third infusion last week, but I haven't had any miraculous results as of yet. It's doing something, because I would be going straight downhill given the amount of time it's been since my last Remicade. I'm at about 4-5 BMs per day with some blood on the stool. I was never really in remission on Remicade. It's kind of been a roller coaster. Some days are really good, and some days aren't so good.

So, I wanted to see what others have experienced and if I should give Entyvio more time?Or add Imuran or something similar? Or try Simponi? Maybe a short-term steroid to try and get rid of that last inflammation? I was hoping this was going to get me headed in the right direction, but I'm not sure what to do at this point.

I would give it more time too. Sounds like you already prefer it to Remicade. Most people would be happy with 4-5 bm's per day. That's where I am at currently with no diarrhea, no mucus, no blood, no anything. I live an almost totally normal life. I think some people get a little too obsessed with remission at the expense of doing or adding these dangerous drugs. Therefore I would recommend against adding Imuran. However, a short term dose of pred isn't a bad idea. I tried that twice myself for the very same reason - just to get me over the last hump. Unfortunately, pred did what it normally does, making me even closer to remission while on it and then returning to where I was after tapering off. I made up my mind that I would do a short one month stint and if it worked it worked, if it didn't then that was it. I actually tried it twice with the same results but I refuse to take it long term. I'm not going to go on the pred roller coaster, increasing back up every time symptoms return. It really doesn't hurt to try that one month stint and see what happens. Just don't let yourself fall into the pred trap. Whether it works or doesn't work you get off, plain and simple.

I agree that you should hang in there. You already know it is doing something. I think the 10 week mark is reasonable for reevaluation, and even then it should continue to improve your symptoms. I'd hate to muddy the evaluation with multiple drugs at once, unless you start to slide. Just my 2 cents.

Had my second infusion today, and the doctor considers the first 3 to be the startup phase before any results are to be expected. I was almost done with the infusion when the catheter messed up and started sending the Entyvio into the surrounding tissue instead of the vein, creating a bubble under the skin. I believe this is called an infiltration. It was surprisingly painful, and they had to finish the infusion in the other arm.

It sucks that this med is slow acting but I'm hopeful. The fatigue I get from it is the worst part, sometimes I feel like I wouldn't mind the 5-7 painful bathroom trips each day if I at least had my old energy back. I don't have any bleeding at least and my blood tests appear normal. Still pushing onward though!

Good to hear things are improving. Got to look longer term (week versus week) versus short term (day versus day).

I keep trying to remind myself of the small changes. Not pooping muscus all day. Not waking up to poop at night. I bled some randomly today which made me nervous. Trying to think of other positives….left sided pain has decreased. I'm doing more stuff…shopping w/ friends, got my hair colored today, volunteered again at my son's school.

Hang in there!

Almost at Week 12. I had some light bleeding and a lot of urgency today :( Next infusion is in 2 weeks. My husband's company has decided to drop the Aetna plan we have for 2015. Already dreading the insurance battle to continue on this.