Decisions, decisions,

Hi all, just a quick update: I was on remicade 2 months ago double the dose 4 times and was on it since december. The results from the test showed high levels of drug in my body but unfortunately remicade did not end up working for me. I am now on my 2nd loading dose of entyvio and it has been 2 months. No real improvements and don't want to get my hopes up because everytime I go down on prednisone I begin to flare again.

The situation is that I am on 10mg of prednisone now for about a year and a half, time is not on my side anymore and the side effects ( fatigue, weight gain hair loss, joint pain, acne,) have all begun to catch up to me. I am starting to lose sense of who I am as Ive gained 30 pounds and cannot even recognize myself anymore. I haven't gone to school for a year and a half and feel time is running out, I've gone through my fair share of drugs and my GI has told me if entyvio does not work that then she will admit that going for surgery is the best option. I have already seen my surgeon and I like her - she is one of the best where I live. She told me along with her team she has done about 2000 jpouches, is that a lot? She specializes in this sort of surgery and has been doing it for over 20+ years. Her name is Erin Kennedy from Mt. Sinai. The question is that should I start to wean down on the pred slowly to see if entyvio is working? I have pancolitis and have not been in a solid remission for years - every time I go down on pred blood, mucous, everything comes back. Right now I have no muscus, just tiny blood and urgency. She has booked an app end of sept/october, should that be enough time to see whether entyvio works or not? I want to give it my all, and wait as long as I can but I also feel like eventually it is time to move on to the next step. She has also told me to start going down on my pred by 1mg every week or how I feel, is it too early or should I wait a bit?

Thanks all for the help, much appreciated.

I agree.
For what it's worth: Took a while for Entyvio to kick in for me, and I tapered Pred very slowly.
I know it's a real endurance test, emotionally too. Sending support your way.

I had no luck with remicade or entyvio so I have to wonder if a lot of non-responders don't respond to either one. I wonder if there is any person out there who had ZERO response to one and had the other one work???

I am SO thankful I had surgery and this illness is officially gone. it's no longer looming in the back of my mind, waiting to come back and ruin months or years of my life at a time... I wouldn't jump to surgery without giving the RX options a fair chance, but, knowing now what I didn't know then, I'd say that my life is so much better since surgery, that even if drugs had worked for me, this was the better solution for me. I can't say it's the case for everyone, or even most people, but I was way too much of a worry wart to have a disease looming like a black cloud over my entire life. I don't want to be 60 or 70 or 80 and worry about colon surgery or flare ups. It's bad enough when I am younger and healthier, but as we get older, the prospect of surgery becomes more daunting and the possibility of a future with flare ups taking away precious time is not a great thought either. I do not spend 1 second thinking about doctors or drugs these days. I had to use my FSA account on designer glasses instead of copays for drugs/doctors.