Remicade working?

Thanks for posting your success story. It gives me hope. I am only on day 5 of infusion #1 but I have gone from 20+ bloody bowel movements a day to around 10-12 WITHOUT blood. Isn't it weird not seeing blood? You just get so used to it that you want to hug the toilet when you don't see it.

Here's to continued improvement....

ElpisUnbreakable said...
Thanks for posting your success story. It gives me hope. I am only on day 5 of infusion #1 but I have gone from 20+ bloody bowel movements a day to around 10-12 WITHOUT blood. Isn't it weird not seeing blood? You just get so used to it that you want to hug the toilet when you don't see it.

Here's to continued improvement....

Good to hear that you are seeing improvement. I'm sure as time goes by and the medication continues to do its job you will see even more improvement. Keep me posted.

Great news guys. I sometimes wonder if I could have fast-tracked my remission with Prednisone but I just couldn't bring myself to endure the psychological torture that comes with it. Either way, it looks like we're all headed in the right direction. It feels great to be winning for once after so many setbacks.

Hey all, update time. It's like 2 weeks since my 4th infusion. I had a pretty shaky ride leading up to the latest one - symptoms started creeping back. But as soon as I had the infusion I was feeling much better. Right now I'm feeling pretty good - bleeding has stopped but I still see the odd bit on the paper. Still have the "morning madness" but its much less of an ordeal than in the past. I'm going about 4-5 times a day at the moment, mostly formed and occasional mild discomfort. Definitely not in remission yet but feeling like I'm on the right track.

I've also added VSL#3 back in to the mix (which apparently is now called VIVOMIXX). I take a packet every few days. No idea whether its helping but I don't think its hindering either. We have also reduced my Asacol from 4.8g to 3.2g per day. I've experienced no noticeable adverse effects from doing so.

I guess I am one of the people for whom healing takes a while. Maybe because I have pancolitis? I don't know, but remission couldn't come soon enough.

Yeah. That seems stupid to reduce such a safe med while you're still having problems. I would only consider it upon complete remission and even then I would have to think hard about it.

Ok so I upped my Asacol back to 4.8g. Thanks Gary and Dikid for the telling-off.

I just went 4 straight days only going in the mornings. Sure, it wasn't pretty in the AM. But I didn't go at all for the rest of the day! Four days in a row!

Amazing.

I'm so glad the thread went this way. I've been thinking about this a lot lately regarding 5 Asa and Remicade. I'm not challenging what's being said I'm just curious as to everyone's input and reasoning. If the 5 Asa didn't get you into remission or change the flare to the point where you needed Remicade then what's the point in continuing to take it? I feel like my Lialda does nothing for my flares. I up it and nothing happens. My flare stays exactly the same or gets worse til the point where I need prednisone. Remicade is the only thing that has truly helped me. I don't want to take pills just to take them. Thoughts?

Totes: Of course everyone is different and no two cases are the same. For anyone with more than mild UC the oral mesalamines probably aren't enough by themselves to actually put someone into remission. Hopefully they are good enough to keep you in remission once some other drug, such as prednisone, puts you there. A lot of times treatment options are nothing more than a shot in the dark trying to hit a barn. Hopefully you hit the barn but it isn't always so easy. Sometimes you need several guns to shoot at the barn.

Lets just talk about Lialda and Prednisone and leave rectals out of the equation for now, but they can be a very important variable. You would need to take prednisone at a large enough dose for a long enough time to get you to remission while at the same time taking Lialda at the max dose of 4.8 grams per day. If you never reach remission then you will not reach remission using this combo, ever, and you will need to move on to plan B. If you do reach remission then you taper off the prednisone, while keeping the Lialda at max dose. If you start flaring again then Lialda is not going to keep you in remission by itself and it's time to move on to plan B. If you do not flare again then you have a gamble you can take in decreasing the Lialda to let's say a mntc dose of 2.4 grams per day. If you start flaring again then this is an indication that 2.4 grams of Lialda is not good enough to keep you in remission. You can try increasing it back up to max dose again and see if you can regain remission but if not you might have to do pred one more time plus max dose Lialda. Since you went through that and you do achieve remission again I would recommend keeping at max dose of Lialda forever once the prednisone is tapered off because it was already proven that a mtnc dose is not good enough to keep you in remisison. As I said before, rectal meds can be a very important variable and if prednisone is the only thing in this example that works then you would have to find another treatment option because you can't take prednisone forever.

Now let's talk about Remicade and Lialda and leave rectal meds out of the equation again. Now I can ditto a lot of what I said in the previous paragraph except that you don't taper down or ever go off Remicade, unless you develop problems from the Remicade itself such as side effects or develop antibodies to it or it just plain doesn't work. If Remicade can keep you in remission all by itself then there would be no point to taking Lialda at all. Some people get much better on Remicade but don't achieve a total remission and need to use other treatment options in addition to the Remicade. If this is the case then we reach the same scenarios in my first paragraph, but remember for purposes of this discussion I have been ignoring rectals, which can be very important treatment additions. Since Ki-Wi was not in complete remission at the time it seemed reasonable to not decrease the Asacol. Now it appears K-Wi may be in remission so there are a few choices.

1. stay on 4.8 grams of Asacol and hope you continue on in remission

2. decrease to a mtnc dose and hope that keeps you in remisison (hopefully you can increase back up if it doesn't)

3. eventually get off Asacol altogether and hope the Remicade all by itself will keep you in remission


Which choice is correct? Only the crystal ball or the magic 8 ball knows. I will say that, in your case, since you don't believe the Lialda does anything anyway you may want to try decreasing and see what happens. With Ki-Wi, there is proof that the Asacol does indeed do something.

In closing, I would like to say that after studying up on this disease quite a bit for five years I have learned one very important thing. Future flares often get harder and harder to treat so the ultimate goal should be to never flare again. It scares me when I see people say I do this when in remission and this when flaring or "as needed" and it makes me wonder that if they had just treated as if they were flaring all the time and reached remission then maybe that's what they should keep on doing so they don't ever flare again, since every new flare is a gamble and what worked before often doesn't work again or work as well, requiring further jumps up the med ladder. Of course you can't use this strategy with prednisone because you can't take prednisone long term.

Time to get out the magic 8 ball.

Hi ushipped, I started Remicade because the other meds weren't working well enough. I was yo-yoing all the time between "mild" and "moderate" and my quality of life was poor. Remicade seems to be taking me in the right direction, but as Gary said we want to keep hitting this thing with everything we've got until we induce a definite remission. Once there, perhaps we can begin carefully reducing/removing the less effective drugs. My GI doc describes the approach as "strangling" the disease.

If Asacol + enemas is working for you then that's great. It kept my symptoms away in the early days but as the disease progressed it became less and less effective. I have no idea if it's even working at all any more but I am reluctant to drastically change any aspect of my treatment plan when I am doing so well.

Can you quit meslamines once on remicade? It depends on symptoms. I quit lialda cold-turkey after a year on remicade, per doctor's recommendation. No change in symptoms. I was near remission then. The enemas, I stayed on longer but at weekly doses. Off them now too.

True meslamines work on a few weeks time, should you need to go back on them. If you just quit lialda, then slow down and wait at least a month before reducing anything else. Odds are if any inflammation remains, then it's rectal inflammation. I very slowly and very cautiously reduced rectal medications. From daily to every other day, to twice a week, to weekly over the course of 6 months or so. I might've been a little over cautious but I flared badly and I didn't want to risk being too rash.

I'm on just 6mp and remicade now. Still in remission (1 year and counting).