Remicade update / two questions

Hi all! So today was my 3rd Remi infusion. I have a little less than 4 weeks left until the baby is born and then I go to my first 8 week Remi schedule 4 weeks after that - mid May.

An update on my progress (from a moderate flare that we could not get under control with 5 asa's and I am unable to use 6 mp due to elevated liver enzymes even at low dosages...plus we didn't have the time to wait for it to kick in so Remicade was my only option to avoid preterm labor other than very high doses of steroids until after I gave birth):

The day after the first infusion the pain stopped, blood stopped, I stopped passing just mucus and blood. A day or so later I started passing stool (I get constipated in flares yay) and frequency had gone from 10/11 down to 3/4.

Had my second infusion and noticed an improvement about 2 weeks later. Frequency down to 1/2, no mucus, formed stool.

Today was my third infusion (last of the loading doses). I am hoping that it pushes me into a solid remission...I feel like I am almost there.

Two questions I have -

1. After speaking with my GI he said after my third infusion I could stop taking my 4 Lialda. The ONLY reason I may want to do this is because I plan on breastfeeding. I know Lialda and Remicade are safe to breastfeed on but if I have the option of only being on one drug I would rather do that for the baby...both pass through the breastmilk. (I've done my research and doctor discussions).

What do you guys think of this? There's a part of me that wonders that if things start to go towards a flare again post partum that if the Remicade doesn't hold me will the Lialda help at all??

2. Tomorrow I drop from 5 mg to 2.5 mg of prednisone through the weekend. I have stopped using rectals as they only seem to aggravate things. Post partum I was (prior to this flare) planning on using Canasa/Rowasa to keep things calm but since I have had so many issues with them was thinking maybe using a steroid enema a couple times a week with cortisone suppositories...but again my GI said it shouldn't be necessary because of the Remicade.

So does or should the Remicade outweigh all the other meds? Am I being to quick to change things?

I am scared to make any moves because I do not want to flare again now or post partum. It's like I can't believe that one drug can keep me in remission when I have been using so many to maintain prior.

Thanks for reading and any input you have!!

Hi Totes, I was on the max dose of asacol which was 12 tablets a day when I started remicade. I was nervous just like you about stopping it. After 6-8 months my GI doc said it was ok to stop because I didn't need it. I explained how nervous I was and he left it up to me so I picked a month and stopped cold turkey. I had zero problems and that was spring 2010. I could have stopped sooner but just too chicken. Remicade was enough. It's my security blanket now. I'm so happy that you are getting excellent results!

Wow, awesome to hear about your improvement.

I would stay on the lialda a while, as it might still be doing something, and give remicade longer. I quit lialda cold-turkey, after about 8 months of remicade. I responded a lot slower to remicade than you did though...

I'm still using rowasa weekly for maintenance, but want to quit rowasa eventually.

I'd get off the steroids, wait 3-4 weeks just to be sure nothing changes, and then drop lialda to 2 pills (if you want). I wouldn't recommend changing anything until you're off the steroids for a few weeks and stablized. One change at a time to keep things simple. I don't miss the lialda, huge horse pills that were hard to swallow lol.

Definitely understandable. It's a good thing that only one or two meds can do the trick though because for me I'd be out of options. Remicade is literally the only medication that hasn't upset my system even more. Mesalamines caused an even worse flare and Imuran made me puke. If remicade stops working for me my other options are pretty limited.

I'm not sure how common it is to drop mesalamine on remicade (I didn't have that problem lol) but I would think if the remicade was working it would be common for people to wean off and then go off entirely. If one med does the trick why take more! :)

And I totally understand wanting to be on fewer meds for baby. I know you've done all your research and stuff, but it's still nice to not take tons of meds even if they don't affect the baby.

And I want to thank you for posting your experience with UC and remicade and pregnancy. I want my own kids one day so bad (I love babies) and hearing how you've gone through it really puts my mind at ease.

@mcfarl - I'm really glad to help ease your mind about being pregnant. I had hoped to stay in remission during the pregnancy but when that didn't happen I wanted to post what I had going on just in case anyone else ever needed a similar story ;)

@fruitgirl - yes I've read that study. I was just hoping to not be on tons of meds - and remicade and lialda are better than the 10 I was on while flaring. I will not go off Lialda but hopefully drop down to 2 pills and stay at the maintenance dose for a while. I can always bump back up at the first sign something is off...I will avoid a post partum flare like the plague!!!!!!

Colie- this goes back to my main question. Let's say I start to build up antibodies. Will the lialda act as a back up and help fend off a flare? I know they work differently so would be staying on lialda be preemptive? Even if it's enough to make the flare not horrible and then have to deal with the remicade failing.

My doctors logic is to get off all meds besides the lialda. Thexn we know if/when the remicade is truly doing its job or I'm not responding.

Thank you so much for the well wishes. I really appreciate it.