I think I finally had a response to Remicade

My first infusion was 8/30/2012 at 5 mg / kg. I stayed on this dose, with no appreciable results, until 1/17/2013, when I quit going because it wasn't working.

I changed doctors, and my IBD specialist put me on 7.5 mg / kg every six weeks starting 3/18/2013. I still had 'nothing happening,' and started Imuran at the same time.

Now I'm on 175 mg of Imuran and I just had my third infusion at the higher dose of Remicade on Thursday, and I felt better by Saturday! I still have symptoms, but there is remarkably little blood for the first time in a long time, and while I'm gassy and having urgency, it is not BM urgency.

So, after almost a year, I think Remicade might do something after all.

yay !

The Imuran is a slow process. I have some nice healing above 20 cm that I think is from the Imuran. I could tell a few weeks after my dose was increased to 175 mg that it was working even better.

I was always jealous of those who said they felt better after their Remicade infusions. I've never been able to tell anything was happening, except getting tired.

I'm not on oral steroids right now - for just a few weeks - which I've not been able to do before.

I'm on vacation and not eating as well as I could be, so yesterday evening was a little rough. FODMAPs everywhere!

YAAAAAAAAAAAAY

The good feelings from my July infusion lasted almost two weeks, and I got a relatively normal vacation out of it. Not quite normal, I still spent a lot of time in the bathroom, but I was well enough to go on boat trips and use pit toilets in State Parks instead of hanging around the cabin all of the time.

I was really sick not too long after returning, and I went through being taken off of Imuran and back on to it again, which was difficult. I was investigating a disability claim, and I found out my blood work is not supportive of a claim (I'm not sick enough).

I had another infusion this Tuesday. I had another smooth week this week despite a very hectic week at work. I felt well enough to accept a promotion at work.

(Yes, I did consider not working and a promotion in the same four week period :) )

Yay congrats!

Unfortunately immuran gave me crazy acid reflux so I had to stop it, but I have my second remicade infusion on Tuesday and I'm very hopeful!

Good luck with continued success!

Woohoo!

I really hope it works for you.

I was having my 6th infusion and began to go into anaphylactic shock.

I am not sure what treatment is next. In the last two years asacol stopped working, azathiprine damaged my liver and now this. I still take four mezavant pills every morning too.

Anybody know anything I don't?