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Day After First Remicade Infusion

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Ulcerative Colitis
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Posted 4/1/2013 12:41 AM (GMT 0)
Had a much better day today, too :D Had two ridiiiiculously lengthy BMs (soft, but not liquid) early in the day, and some cramping, but we left around 2 for Easter and I haven't even had any urgency. Even when I ate a big dinner, I felt fine.

We'll see how I feel tomorrow morning, of course--lots of food means lots of time spent on the toilet the next day.
Posted 4/1/2013 2:42 AM (GMT 0)
glad to hear your day was better and my fingers are crossed that tomorrow is more manageable than you're expecting!

i've been still taking librax, i think it might help with any discomfort that I was previously feeling. also helps with some anxiety, although feeling better has definitely helped substantially with axiety
Posted 4/2/2013 11:03 AM (GMT 0)
2 days later update:

once again seem to be getting around 24 hours of so of bowel rest between movements. I've been eating more... again gave up paleo and pretty much eat like i used to. for instance I had a chicken/feta/spinach wrap from stew leonards (local grocery store chain in the ct.ny area), a bowl of chicken noodle soup with oyster crackers, some cheddar cheese, string cheese, small piece of carrot cake and some homemade healthy oatmeal raisin cookies yesterday...

today i had the most normal movement i've had in year and a half, it was formed and not narrow like it used to be when i thought I was in "remission" back in november. granted it only started that way and as i continued it got less formed but I still look at this as a big step and indicator that inflammation is geting under control and i am finally healing. i hope this gives those struggling (and doing well for that matter) some inspiration. I clearly know I am not out of the woods, but right now i'll take all the time like this that I can get. I'm now no longer concerned about finishing my MBA, and so excited to graduate with the degree in May!!!
Posted 4/2/2013 2:05 PM (GMT 0)
That's great news Josh! Remicade was a life saver for me, and I've now been off of it for two years. I was able to resume my life immediately after starting remi, and about six months later felt like I was in remi-remission. I wish you continued good luck with the remi. I feel very fortunate -- that is for sure.
Posted 4/2/2013 2:22 PM (GMT 0)
so you think i might actually go off of the drug with time? I thought this was one of those lifer type things.

in other news I got approved for Remistart! which takes off some of the financial stresses that had been causing me to worry!
Posted 4/2/2013 4:03 PM (GMT 0)
So awesome to hear, Josh! It's awesome you're able to go so long between BMs. It definitely feels like constant BMs makes things even harder on the tissue (increasing inflammation), and it also means that your colon is healing really well!

Had an appointment today, and my doctor is concerned since I improved and then backslid. He's also worried about the fatigue I've been dealing with--I've been sleeping 10-12 hours a night and still feeling sleepy the whole day. We're going to run some blood tests, and in the meantime, we're going to do 6 weeks between Remi infusions (third loading dose is in two weeks) and I'm going to start mesalamine enemas again.

Of course, since I had an appointment this morning, my colon has been behaving and I've only had one BM today!
Posted 4/2/2013 4:15 PM (GMT 0)
Yes, it is possible to go off of Remi. I had two clear colonoscopies that showed the ulcers had healed, so my doc and I decided to try maintenance meds. I've been on Asacol, 6 per day, for about two years now. So far so good, and I wish I could find some real wood to knock on, lol. Nice news about the approval of Remistart!
Posted 4/2/2013 6:17 PM (GMT 0)
Well i'm mesalamine intolerant, so I don't really think I would be able to do a maintenance med. Also I know with humira if you go off of it, your body can create antibodies rendering the drug useless if you try and go back on. I don't know if remicade is the same way...
Posted 4/3/2013 3:51 PM (GMT 0)
I believe that Remi was intended for healing the colon of ulcers, and then once you have the clear colonscopies, you might have the chance to go off of it. If that ever does happen, I'm sure your doctor will find a maintenance med that will work for you. It's been said that once you are off Remi, you might build up antibodies to the drug, although I've seen people go off and go back on it just fine.

Also note that I couldn't tolerate mesalamine meds either and was rather nervous having to take them again...but it turns out to work very well for me. With that being said, our bodies are very different and constantly changing! What works for some, won't for others.

Posted 4/7/2013 7:41 PM (GMT 0)
It's been a few days since I did an update. Continual improvement, remicade induced significant bowel rest which finally has allowed me to see evidence of healing. I to once or twice in the morning and started seeing formed movements that are as close to pre UC (circa august 2011) as I have ever seen. In fact today I haven't even gone to the bathroom, it's been over 24 hours since I have had to go. I get infusion #2 tomorrow, and hope it makes things even better (although i'm feeling pretty darn good overall).

I've even been able to put some weight back on, sitting around 175 which is right around where I want to be. I'm pretty much eating whatever I feel like, diet doesn't seem to impact me. Tapering prednisone (although it really does nothing other than cause acid reflux and insomnia). Down to 40mg and I taper 10mg every friday... All in all, i feel like I'm slowly getting my life back, i've been able to leave the house worry free for the last week and it's an amazing feeling. trying to remain even keeled in case things get worse again but it's hard to contain the happiness of finally feeling good.
Posted 4/7/2013 10:50 PM (GMT 0)
I've been getting better then worse then better a lot over the past week or so, but definitely on the side of improvement. I got overly excited and had steamed zucchini on Friday night for dinner, and I spent all last night running to the bathroom with liquid stool. Feeling much better today--no BMs, just gas. One more week till my last loading dose!
Posted 4/15/2013 3:47 AM (GMT 0)
been a while since I posted an update. no news tends to be good news. second infusion went well, relatively no changes which is good news as I am feeling pretty good. still trying to take it day by day and hope things continue to improve.

one thing i wanted to note was right now i am at 30mg of steroids (which do nothing to help with my uc, as I am 99% i am steroid refractory). With that my doctor wanted to slow my taper down to 5mg every 7 days instead of 10mg every 7 days. needless to say I am not happy and want to continue with the 10mg taper.

i'm thinking of just dropping it to 20mg friday and then i'll agree to start a slower 5mg taper from 20-->15-->10..>5

honestly, i want off the crap, while i'm only dealing with moonface and acid reflux, i firmly believe it does nothing to help my UC. opinions on my idea, should I just listen to the GI...
Posted 4/15/2013 3:59 AM (GMT 0)
hey jac. good to know you are still improving. as for the prednisone, it never helped me either so i wanted to get off of it as fast as possible. the most i ever tapered was by 5 mg and that was high enough for me. the shakes and anxiety were just too severe to taper by 10 mg. if you don't get any other symptoms, then i think you should listen to your body and continue with the 10 mg.
Posted 4/15/2013 11:09 AM (GMT 0)
i've been able to go from 60-->50-->40-->30 without issues. basically i want to be able to graduate with my MBA completely prednisone, i know it sounds stupid but i just want to be completely off the stuff and lose this darn moonface. my weight is fine ~172, put on around 6-8 pounds since remicade infusions which is great news. I'm at around the weight I want to be but i just hate how my face looks lol. it should't be nearly this puffy!
Posted 4/15/2013 1:06 PM (GMT 0)
We are so similar! I started remicade after failed Humira 1 week ago and saw immediate improvement (been flaring for over a year). This weekend I walked for the first time in months (I'm a runner so it's a big deal) AND was able to eat out at a restaurant for the first time in around 4 months! Anyways, I hope the remicade works for both of us :)

I dropped last week to 30 mg prednisone. I've been on various doses, trying to taper and getting worse so my old gi kept bumping me back up even though prednisone hasn't helped me for some time, and I also just want to get off of it NOW. I usually taper by 10 until 20, then start 5mg decreases. Going to see what my doctor says but will probably do that regardless. I'm a little weary of coming completely off prednisone and the remicade having to work without it, but crossing my fingers that it can. This is the first improvement of any kind I have seen, so I guess my immediate goal is get off prednisone, and if I start to worsen just think that a few days of getting out of the house are better than none.
Posted 4/15/2013 1:13 PM (GMT 0)
i truely believe prednisone no longer helps me with UC at all. I was at 60mg of the stuff and still flaring terribly. i didn't see improvement until remicade... i know i should probably be careful, and not risk taking a giant step backwards, but prednisone is something i've been on and off for a year and a half and as we know, it's really nasty drug with some long term potentially bad things if I stay on it longer.
Posted 4/15/2013 1:48 PM (GMT 0)
I agree. I've been on 60 for the better part of the past year, but if it's done anything flare wise (I've been miserable for a year), it hasn't been worth the weight gain, moon face, sleeplessness, etc. I'm so ready to be off prednisone. Just going to cross my fingers that the remicade is what's helping me!
Posted 4/15/2013 1:53 PM (GMT 0)
my last flare caused me to lose 30 pounds, even while on 60mg prednisone. i've managed to put 6 pounds back on, i started makign oatmeal raisin cookies as they entice me to eat and i figure they'll help me put some weight on (even if it's bad weight, i don't care)
Posted 4/15/2013 4:09 PM (GMT 0)
i just had my first remicade infusion last thursday and i am actually feeling awsome. ive been having a bad flaire since last december and ive actually been sleeping through the night. no trips to the bathroom. only one BM a day and no blood at all. hopefully it stays that way.
Posted 4/17/2013 6:17 PM (GMT 0)
update: seemingly continual improvement. basically go first thing in the morning and i'm good the rest of the day.

things aren't perfect, but i see formed movements but a bit on the narrow side which tells me there's probably still inflammation and healing going on. or that this is what my movements are just going to look like from here on out. really don't know, nor do I care that much unless it's a cause for concern.
Posted 4/17/2013 8:03 PM (GMT 0)
I've started having 4-6 trips in the morning, although they mostly feel like a continuation of one BM, and then I'm all set for the rest of the day.

Fatigue is FINALLY fading, which makes me think I just needed some more time + back on the enemas, and that it wasn't the 6MP. Not sleeping well, though.

Went running almost 2 weeks ago for the first time in months, and then again yesterday. Felt GREAT during yesterday's run, although I am sooooo out of shape, it's not even funny (had calf surgery almost 2 years ago, and when I was well enough to start running again, my flare started). I managed a mile in almost 13 minutes. In my defense, Boston is frickin' hilly.
Posted 4/18/2013 11:32 AM (GMT 0)
sorry to hear that sciencegirl :(. how long since your last infusion?

i miss running/lifting so much but refuse to do it until i know i am not going to suffer a setback because of it. during my last period of good health i started elliptical training on christmas day (the day I went off prednisone completely) and ran 3-4 miles a day on it for 37 consecutive days, until my next flare showed up and alas I completely stopped. i'm definitely not in the shape i want to be, i lost a ton of weight from this flare and the weight i am putting back on definitely isn't lean muscle mass. it's probably crap fat weight.

anywho... one thing i noticed and it's probably directly related to eating habits. twice a week i have night classes where basically i don't eat the entire day. bottom line I am 7 classes (3 weeks) away from finishing my mba and I don't want to miss a class because of illness. so i don't eat before class and eat when i get home around 10pm. through the day maybe i'll have a piece of cheese or two or an oatmeal cookie but that's it, and i'll eat more at night. like last night i had 2 pieces of string cheese, two pieces of swiss cheese, a big bowl of chicken noodle soup, 6 small homemade oatmeal raisin cookies and gatorade/vsl/psyllium mix. the next morning i'm definitely not feeling that great, this morning i went at around 5am and again at 7am. i think i'll be ok the rest of the day and it's a just a product of my eating habits... not the most formed of stools but no blood and not diarrhea or anything...
Posted 4/18/2013 5:18 PM (GMT 0)
Yeah, it's hard to eat at "normal/healthy" times when you have UC. Like a lot of UCers, I skip breakfast by necessity. Luckily, while my mornings are still very bathroomy, I don't have eating-induced urgency anymore.

Two days since my last infusion, and I'm feeling a little better, UC-wise. A few BMs so far (two right away, one a couple hours later) with low-to-moderate urgency, but mostly formed, no blood. I'm glad, since I had a drink last night and those usually give me bleeding the morning after. Feeling foggy and fatigued, but it's not UC-related.

I stopped taking the enemas starting Monday night after only 5 or so nights, but I've actually been improving so far. We'll see what happens.
Posted 4/18/2013 5:36 PM (GMT 0)
see the thing is i bet i could do it. i am fine all days, but because this is literally the home stretch 3 more weeks, i'd rather not risk it and make sure.

i eat throughout the day every other non class day and I am fine. like today I had a couple pieces of string cheese, but i'm not going to eat much more because I have class @ 630 tonight. i bet i would be fine... this is more of a mental security thing than anything else from my point.
Posted 8/18/2013 1:38 AM (GMT 0)
Any updates, Josh?

I'm getting the call next week to schedule my first infusion. It's been a rough couple of months but in excited for the prospect of remission or relief via remicade.
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