Remicade working?

Awesome, here's to continued improvement after infusion number two.

DeadKennedy - Don't give up on Remicade. It took a little while for it to kick in for me. It wasn't until after my 3rd or 4th infusion that I started to feel somewhat normal again. Everyone is different. When I started it I heard about people feeling better within 24 hours and hoped that I would too. It didn't happen that way. With some people it takes more time.

My daughter has been on Remicade since about march 2014, at first at 8 week interval, then her GI changed it to 6 week since there was not much improvement at first. At that time she was still on Pred, it was not until late July 2014 that we started to see improvement and about mid august we were able to get her off Pred and she had no more UC symptoms. She has been symptom "free" until mid December 2014 when she started flaring again and got C-Diff at the same time. 2 months after antibiotics, she seems to be getting back to "normal". Still not sure if Remicade is helping since it took so long at the begging to see improvement, but as they say, do not rock the boat..

Update time. It's been 16 days since infusion number two. I spent the first 14 of those days thinking I was doomed and nothing was happening. But the last two days, wow! Everything is different, there's just less of everything and I can feel myself getting better. Can't wait for number three in a little under two weeks. If I have any complaint, it's that I wish it would work a little faster. Improvement by such small increments is incredibly frustrating when you have so much invested. But I'll take it.

I've been on Remicade now for almost two years. I have been in complete remission since about the third infusion. Admittedly I have to have infusions every 6 weeks and I get 1000ml (which is the max doseage as I understand it for someone my size) but my quality of life is so much better and I feel fantastic. I am even training for a half marathon right now, that is something I never would've attempted when I was in constant flare..... It's been a great thing for me and my life thus far and it's staved off the dreaded j-pouch )dreaded for me that is, I know its a savior for some)

Well, I had infusion number three a few days ago, and this time I'm seeing immediate results. I'm sleeping right through every night and the bleeding has almost stopped. Here's hoping that this is the start of something that starts with R and ends in emission.

I wanna get excited but don't want to get too excited. You know?

Fingers crossed.

It sounds like the remicade is doing exactly what is supposed to do. Some improvement with doses 1 and 2, and marked improvement on dose 3. Glad you found something that works for you, that's great.

Keep the truck rolling!

That's great, glad to hear you are getting better - sounds encouraging.

I had my first infusion last Tuesday and things started to improve pretty much straight away, bleeding stopped within 48 hours. I'm back to normal bowel movements now so it really does have seem to have done the trick.

Jonny_Murray said...
That's great, glad to hear you are getting better - sounds encouraging.

I had my first infusion last Tuesday and things started to improve pretty much straight away, bleeding stopped within 48 hours. I'm back to normal bowel movements now so it really does have seem to have done the trick.

That's great Jonny! I am in the same position as you. Last week was put on IV steroids and they didn't work. Well it got my CRP down but it just shot back up again when I left hospital and was put on oral pred. So today I had a flexi sig and it showed my colitis had now worsened to moderate to severe. So just had my loading dose and feel ok. The nurse said I should see something by tomorrow but I've just been and even though not much change in my stool there was definitely an improvement in the pain. Let's see tomorrow. There is talk of surgery looming if this treatment fails and in a way I'm accepting that. But I'm hoping infliximab works.

I have discovered that solid stools are a blessing and a curse. If your colon is still damaged it can be like shi--ing razor blades. Ouch.

Happychick said...

Jonny_Murray said...
That's great, glad to hear you are getting better - sounds encouraging.

I had my first infusion last Tuesday and things started to improve pretty much straight away, bleeding stopped within 48 hours. I'm back to normal bowel movements now so it really does have seem to have done the trick.

That's great Jonny! I am in the same position as you. Last week was put on IV steroids and they didn't work. Well it got my CRP down but it just shot back up again when I left hospital and was put on oral pred. So today I had a flexi sig and it showed my colitis had now worsened to moderate to severe. So just had my loading dose and feel ok. The nurse said I should see something by tomorrow but I've just been and even though not much change in my stool there was definitely an improvement in the pain. Let's see tomorrow. There is talk of surgery looming if this treatment fails and in a way I'm accepting that. But I'm hoping infliximab works.

Yes - sounds like we have been through a similar experience. I had my first infusion just over a week ago - I saw some improvement within about 24 hours and my stools were not far from normal after about 72 hours. I have my next infusion on Tuesday so we'll see how that goes but I am optimistic. If you have already noticed a reduction in pain then that is a good sign. I'm sure it will kick in even more over the next few days and you start to feel better and better. Good luck - keep us up to date.