Trying to measure my progress on remicade

I just had my third infusion today

I was in bad shape before my first one. 15-20bms a day, blood, D, pain etc...

Within a few days of my first infusion I was having 2 or 3 bms a day all solid/formed. I was doing great all the way up to my second infusion, it was kind of unbelievable actually. After the second infusion I continued doing great, even had a few days were I just had 1 bm a day but typically 1-3 a day.

Exactly 15 days after my second infusion I woke up and had somewhat loose stool. Right away I felt that it was a flare coming back on. I was correct. This flare has gone on the last two weeks now. Although it hasn't been that bad for the most part. There has been no blood whatsoever but there has been mucous. I've been going on average about 10 times a day with urgency but I've noticed that I can hold it a bit and it will subside for a few minutes if necessary. That pain is real uncomfortable when it hits so if I'm near a toilet then I'm going. The last week it has mostly been sedimenty, if you get that, not diarrhea but not formed either.

My doctor said that this is pretty normal and that I will probably flare again before my next infusion in 6 weeks. But, he is fairly confident that around 6 months after my first infusion(around my 6th infusion) that I will be in remission or at least symptom free then time for a scope.

I finished todays infusion about 4 hours ago and have had 1 BM since, 2 this morning so that puts todays total at 3 so far. Not sure how the rest of the day will go but feeling like the remicade is working it's magic again already.

When I started remicade in September, I was prednisone-dependent at 20 mgs. By mid January (4 months later), I was completely off of prednisone. It took a full year to reach remission.

Ive been on Remicade since April and its been up and down as you describe. I had my 7th infusion today, my first at a 4-week interval. Right now I still have urgent BMs, about 5-6 a day. As recently as 2 months ago I had it as good as 1-3 per day but I never quite kicked the urgency. You say you had 75% ulceration - that is very close to Pancolitis which is what I have. I think it is only logical that the more of your colon affected, the longer it will take to heal it.

A lot of people who have reached remission say that the urgency is the last thing to go. So if you are free of urgency, I would take that as a very good sign indeed.

Kulinarykidz said...
Ipoop...you always have good insight. Were things up and down during that year?

Sure, there was nothing linear about my healing once on remicade. I'd have ups and downs in of bms, urgency, and stool consistency. I even had one scare where I thought I'd have to move my infusions closer together (urgency spiked and I saw blood a week before my next infusion). Luckily, it was a one time blip. Getting off of the prednisone was quite rocky indeed for me (4 month taper off while on remicade), but a cumulative year of continuous use of that devil.

Prior to remicade, I was steroid-dependent at 20mgs, had urgency issues, 4-5 bms a day, semi formed stool, and a couple accidents per month.

My quickest improvements were during the initial loading doses, my stools had formed a lot more but we're still very skinny. My frequency was down to 3-4.

After the loading doses, it was a snail's pace healing rate for me. Bms slowly got more formed, thicker, bm frequency dropped so slow it was hard to acknowledge/perceive (dropped 1 daily bm over several months time, first occasionally 1 lower, then a few times a week lower, until it was regularly lower by 1). Urgency was the very, very last thing to go for me.

I had given up on ever reaching remission, I hadn't achieved it in 2.5 years of struggling with uc. I was just glad things were improved on remicade. I just stopped counting bms and analyzing them as I had for so long, and it seemed pointless. One day it just hit me. I'm having one bm a day, it's solid, and I no longer had any urgency that's the fabled R word right there.

So my advice to you, is that it might take a good long while, patience. At least for me, it took a full year to reach symptomatic remission.

I just got my biopsy results back from a recent scope. No signs of active disease, anywhere, visually or in the biopsies. Endoscopic-remission

just two days since my third infusion now

not too much has changed. I responded way more after my first infusion. It seemed almost instant then and the following month I felt as good as can be. Still seeing mucous and going multiple times a day, maybe 7 or 8 yesterday. I feel like I'm getting a little better but I guess I was expecting an instant turn around like after my first infusion which just seems so weird to me now. Urgency is still there but noticed I'm better at fighting it off now and it's able to subside for a bit if I'm not near a toilet. Going out of town tomorrow and seeing a concert so a bit nervous about that.

My son is trying Remicade and is on his 4th infusion. The first 3 were 10mg/kg and the last one 15mg/kg. He has some small improvements. You seem to be doing much better than my son. At the last infusion they took blood to measure the level of Remicade. It was 2-3. Dr said it should be 8-10. He did not have antibodies to it though. Have you ever had that test? Dr said he is probably too inflamed. We might give up on Remicade.

Dr said he has patients that like a "light switch" wake up and have blood free solid stools. We keep waiting for that switch to flip. Is that what is is really like when you respond or is it gradual? Has anyone gone this long and still has that profound improvement?

Post Edited (VinniesMom) : 11/20/2015 10:45:06 PM (GMT-7)

Have you tried adding an immunomodulator as well? I think, statistically speaking, biologics are more effective when used with one, although it can take a while for them to kick in.

It took me around 3-4 mos with Remicade and 6MP for me to stop seeing blood regularly and have 1-2 non-urgent BM's per day. I should note I was tapering from the prednisone the first month or two as well. I think as long as you're seeing constant improvement and heading in the right direction, that's good news.

Fingers crossed!

I had a big improvement a week after infusion 2, and also a week after infusion 3.