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Day After First Remicade Infusion

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Ulcerative Colitis
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Posted 3/26/2013 10:51 AM (GMT 0)
So after my infusion, which lastest from around 2pm to 5pm I didn't have to go to the bathroom the entire day night. Woke up today at 5am with urgency and had to go (not really alarmed or surprised). Hoping today I see some good signs, I just don't know what to expect. I know my diagnosis was ulcerative colitis/pancolitis, so expecting miracles fast is probably out of the question.

One thing I did notice is the last few days I haven't seen any blood. Might be the prednisone finally working, but I really am going to fight to get that stuff tapered and start uceris in conjunction with the remicade...
Posted 3/26/2013 12:19 PM (GMT 0)
I stopped having symptoms after my first Remicade infusion on day 2.
Posted 3/26/2013 12:47 PM (GMT 0)
You might have a yo-yo of symptoms until after your loading doses. If you're like me (and others), you will get better and better after a few infusions.
Posted 3/26/2013 8:42 PM (GMT 0)
So a day after, and I've only had to use the bathroom twice. Once at 5am and again at something like 8am. Since then i've felt solid. Have some minor gas, but I'm actually not afraid to pass gas. Can't say the last time I was able to say that. It's funny, i used to be so embarrassed about this whole situation, now I have absolutely no shame!
Posted 3/26/2013 8:57 PM (GMT 0)
Glad you are feeling better.
Posted 3/27/2013 5:27 PM (GMT 0)
update: another very good day. had to "do by business" twice in the morning and have been fine since. yesterday was the same, i didn't even have to go at night time. I think my system might finally be getting some bowel rest which has got to be good for healing.

i don't want to get too excited but it's hard not to right now. i'm considering naming my first child remicade. ok maybe i'll name my first dog Remi, the wife will probably object less to that!
Posted 3/27/2013 8:40 PM (GMT 0)
So great to hear you're already improving! I haven't really improved since my first loading dose, and I've been feeling a little worse lately ... but it's because I've been eating so much more food now that I feel better!

Have you been able to eat a bit more?

So far, after both of my infusions, I've practically passed out within a few hours. I figure that price is entirely worth it to be able to go back to work.
Posted 3/27/2013 8:47 PM (GMT 0)
i've been trying to eat more. i was down to 160 pounds on 3/15/13. Basically down 27 pounds since 2/3/13.

happy to report I basically stopped paleo and just went back to regular foods to try and get weight up (paleo didn't help me at all after a month, and I was losing too much weight). I'm now around 170-172ish, which i'm happy about. i'm a little stressed about going to my grad class tonight, but I need to mentally get over it and make the effort. hopefully it doesn't hurt progress :(, we'll see.
Posted 3/27/2013 9:14 PM (GMT 0)
How long were you on Humira before you gave up on it? 

It's nice to know that us Humira users could still potentially get relief from Remicade down the line (despite almost every GI saying the chances of it working are low).

Posted 3/28/2013 3:48 AM (GMT 0)
i was on humira around 10 months, sometimes weekly sometimes every other week. i didn't see it being effective. remicade on the other hand, so far I am mighty impressed!!! so hard to manage my expectations given how different i feel and it's been 2 days since infusion #1
Posted 3/28/2013 1:41 PM (GMT 0)
The day of the infusion I had almost no symptoms. The next day I was back to my bad symptoms but they were a little better. As the days progressed things got better again.
Posted 3/28/2013 1:57 PM (GMT 0)
ok so i woke up at 4:30 this morning and did something i've never done in my life (well according to my mom). I wet the bed. ***. Could this be remicade related at all? I was literally so embarassed. Sigh. On the UC front things seem to be ok though. going twice in the morning and that's it. bowels must be getting some nice rest and finally healing i hope
Posted 3/28/2013 3:15 PM (GMT 0)
:\ Haven't heard about that being a possible side effect. Then again, my GI insisted that high dosage of Asacol wasn't responsible for my ear basically feeling/sounding like fluid was stuck in it for months and months; when I lowered the dose a bit, it disappeared. So I wouldn't write it off as not related, but definitely talk to your doctor.

I have heard that different people respond better to different anti-TNFa drugs, usually in the context of people doing better on Remicade. However, my doctor explained that if I can't tolerate Remicade or eventually become resistant to it, we'll switch to Humira.
Posted 3/29/2013 4:16 AM (GMT 0)
update: met with GI for followup. I don't think i've ever seen the guy so happy. he was so excited to hear how positively I had responded in such a quick period of time since the infusion especially given the extent and "dire" condition i was in a matter of days ago as confirmed via colonscopy. he was in such a good mood that he agreed to start my prednisone taper. starting tomorrow I drop 10mg every 7 days. i'm excited as I think the prednisone does absolutely nothing for me anymore (theory is my uc is steroid refractory sadly). i told him about the teaspoon of psyllium seed and he wasn't enamored but i'm being careful with it and I do think it's helping a little bit so I will continue. i told him about my hands being cold, and he checked them for bloodflow or whatever and said they were fine and it's nothing to really be concerned with

had another pretty good day, again only 2 movements in the morning and that's about it.
Posted 3/29/2013 4:19 AM (GMT 0)
i'm so happy you are doing better, jac. that's how i was when i started remicade, too. i immediately noticed a difference and was great for a few months. i hope it lasts for you.
Posted 3/29/2013 4:21 AM (GMT 0)
i can only hope this lasts much longer than a few months, but i'm taking it a day at a time, already planning things like seeing friends getting out of the house. actually attending my GRADUATION in may for my MBA. i know it's not the best idea to look forward and temper my expectations but I can't help it
Posted 3/29/2013 1:09 PM (GMT 0)
Yay! I hope that every day and every infusion makes you feel better and better! When do you go for your next infusion?
Posted 3/29/2013 1:32 PM (GMT 0)
monday april 8th @ 1:15pm. lol i am excited about it actually.

still a little worried about the cost but my health is so much more important and i'm hoping between insurance and remistart it'll work out.

i did have to go last night a couple of times, kind of worried me but I think it's attributable to the fact that the day before I deliberately didn't eat anything all day until i got hom at 10pm (i don't eat on days I have to go to school, i fear something bad will happen and i'll get really sick and my drive is over an hour each way)

this morning i feel fine!

i'd just like to thank everyone at these forums, the support has truly been inspiring and heartfelt. for those that are getting better, keep at it and for those that are struggling DON'T give up hope, things will get better. A week ago i was as close to hospitalization and had a fully diffused severe diagnosis, in a week's time later, the progress has been nothing short of remarkable. i can only hope this lasts a long long time, but i'm doing everything I can to just take things one day at a time and not get overly optimistic in fear of a relapse which mentally would kill me
Posted 3/29/2013 8:06 PM (GMT 0)
I'm starting to get a little worse after a long plateau (I improved 3 days after my first infusion, but no additional improvement since then). Stools are back to being unformed, although they're not liquid or bloody. I am seeing my doctor on Tuesday (April 2), and I will ask him what he thinks might be going on. I'm considering starting mesalamine enemas again, since my symptoms are very similar to the ones I had when my UC was limited to the distal colon (which cleared up easily with enemas).
Posted 3/30/2013 1:23 AM (GMT 0)
definitely not the news I want to hear, but on the bright side no blood which to me is a usually a huge indicator. i still really haven't had formed stools, but my theory is my pancolitis was so severe that it's going to take some serious bowel rest to get things healthy enough to do so. i had a good day overall, very productive and I ran errands around my city for the first time in months.
Posted 3/30/2013 3:57 AM (GMT 0)
Yeah, I mean, everyone at the infusion center has stressed to me that many people who do go into remission don't always improve until 10 weeks after the first infusion. They were very surprised that I improved so much after just my first one. I figure that my colon is taking a while to heal--the disease was incredibly severe, and I'm not surprised that after 13 months of colitis, I wasn't cured overnight.
Posted 3/30/2013 4:07 AM (GMT 0)
yeah my 3/15 colonoscopy revealed severe pancolitis throughout. basically the entire transverse, and descending. level 3 on the scale, while i'm on prednisone it hasn't done much of anything. meanwhile the remicade has been remarkable thus far (who knows maybe it's even partly placebo/mental effects).

my infusion center too stressed it could take 3-4 infusions to see results, but honestly i feel as though i've seen some remarkable changes already. it might be more about bowel rest than anything else, i honestly don't know. it's all about being patient, taking it day by day. i'm certain i will have some good days and some bad ones, hopefully more the former than the latter as the last 3 months have been pure hell.

i just hope you continue to improve and get through your plateau, believe me I can completely relate to everything you're going through. this board at times makes things so much more manageable to know we're not alone in this fight.
Posted 3/30/2013 2:57 PM (GMT 0)
saturday update: sleep has been an issue because of 50mg of prednisone, but tonight I fought the surge to take a nap and got to bed around 1am before waking up at 6am (that's really good for me). ALso was able to go back to sleep from 8am to 10am. so all in all nearly 7 hours of sleep!!!

in terns of my UC, i only went once and saw the most encouraging news yet, formed movement. it was formed very well in the beginning and less so as I continuned to go. But i'll take it as a sign that inflammation is finally getting under control and healing is occurring.

i know i turned this thread into a kinda daily diary so i'm sorry if anyone finds it annoying. i just want to share my experiencing and if it gives hope to people out there all the better.

to put things in perspective, in february at the heart of my flare, my state of mind was so poor that I had some horrible thoughts, massive depression and I wanted to flat out give up. the high i am on now, while dangerous because I need to manage expectations restores my faith in a lot of waits.
Posted 3/31/2013 8:51 PM (GMT 0)
so I literally had over a 24 hour period of bowel rest. went once yesterday morning and once this morning like the good old days. still not completely formed, but I figure that will take significant time as i was in very severe shape. i'm staying positive, getting out of the house everyday and starting to build back relationships with old friends that I haven't been able to see nearly as much as i'd like. (when i got sick I kind of shut down, and didn't want to be around people)
Posted 3/31/2013 9:54 PM (GMT 0)
As a mom of a teenage boy with UC, I am so happy for you as I read your progress on Remicade! So wonderful you are getting back out with friends - I know how isolating this disease is. Enjoy your terrific progress!
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