Remicade Infusion Therapy

I had my first infusion of Remicade today, February 7. Things went well, no major reactions to anything. I was just curious as to other peoples' Remicade stories/journeys. I've heard many good things but also some bad things. I just like to hear about how other people are doing. Also, how fast does it usually take for people to feel the effects of the treatment? I'm honestly not too worried about the side effects or possible risks. They're so small, and with regular monitoring (I get blood work done every time I'm there, along with continuous checks of my vitals) and careful attention to staying away from things that could lead to infection, I feel as if I really aren't in real danger. Plus, the hope is that I'm only on Remicade for a few years until new medications are out that are even more beneficial with even less risks. I'm trying to stay positive! Plus I want to go into biomedical research and become a GI as a career, so maybe I'll come up with some new treatment!! Lofty goals, but they keep me pushing and fighting the good fight! I hope to hear from others, and that everyone else does well and stays positive, because we can kick this diseases' ASS!!!

Hi UC_college_guy
Welcome to the forum.
Hope the remicade works for you. I've never taken it so have nothing to contribute on that topic.

Best of luck with your goal to become a GI.

Hi
It may take a couple infusion to get into your system. It will
put you into remission. I used to be on Remicade but to expensive
for me.

I started Remi Sep '11 and I have been in remission for almost a year. I felt great after my first infusion, but it wore off quickly, had my 2nd start up dose, felt even better. Than I had my 3rd infusion and I had a reaction. My hands swelled up into extremely painful claws along with my right elbow. After that I started on a pre-med cocktail of Solumedrol and Benedryl (I didn't have pre-med prior). That worked like a charm and as long as I get the pre-med before each infusion, I'm good to go. I can feel symptoms coming back after the 6-7 week mark. I am usually pretty tired after each infusion and I still get some mild cramping and nausea but the day after I feel like a million bucks!

Remicade has done ok for me.  Doubled up on dosage like previous poster.  Now I suffer from immune side-effects which include; streaming eyes, chronic sinusitus, cold sores, tiredness.  The UC is under complete control but the doc. (in UK) has advised I have to come off Remicade in case I catch something more potent which could cause real issues.  This is a great drug for many, it was (but no longer) for me.  we all hang on for the next miracle cure, which in my case hopefully will be Vedolizumab.  This treatment targets the gut and not the immune system.  Who knows - we live in hope - best regards

I've had five Remicade infusions, and next week plan on getting my sixth one. I was diagnosed with UC in 2010, after suffering without a diagnosis for almost a year. For the following year and a half, I was given various medicinal cocktails of Prednisone, Lialda, Asacol, Bentyl, probiotics etc. The Prednisone worked the best, so I foolishly continued to take it off and on until the middle of last year when it stopped working. I was then hospitalized for almost two weeks due to severe pain and other symptoms. After nine days of intravenous steroids, morphine and whatever else I let them push into my IV, it was agreed upon that I would try a Remicade infusion. That night after the infusion, I had my first pain free, symptom free meal in almost two years. ( And even though it was hospital food it tasted like a gourmet meal!)  After another day or two in recovery, I was released with a scheduled maintenance of infusions.  I have been almost 100% in remission since. So far, its been my miracle. I've had no side effects worse than a headache, though they do push benadryl and tylenol before hand. Other than being cautious of sick people/places/things, life is back to normal for me. I wish you luck, and hope you find similar results. 

Thanks for all the responses guys! So far I still feel good side-effects wise, though it's only been a day and a half. I'm noticing a small difference in my symptoms, with a little less urgency and more formed stools. I would definitely like to be off of this drug, but I think it's the best option for me! I'll start tapering down off of the prednisone next week hopefully if things are going well. My infusion nurses said we would monitor how I'm reacting and whether or not we need to go up or stay where we are, and also if I'm having any reactions that might need that pre-med cocktail.

Also, I looked at that drug Vedolizumab, and it looks very promising!! I've read so many journal articles about current treatments and possible future treatments and medications. I try and keep myself very educated about things, I figure its best to not be oblivious about what is going on inside my body.

I'm really interested in hearing more about people's experiences with Remicade. I know that everyone has a different experience with it, but I like having as much information as possible!

I'm in my third flare-up, which has lasted a year so far. Previous flares were somewhat long (5-6 months), but cleared up within weeks of colonoscopies, as soon as I started treatment (first time, just Asacol, second time Asacol with hydrocortisone enemas--only took two weeks of enemas!). However, I am very irresponsible and stopped taking Asacol between flare-ups, which appear to be triggered by antibiotics.

I've been on Asacol HD since April (4800mg - 5600mg per day) and mesalamine enemas on and off. Due to insurance problems, I couldn't afford medication for several months, and so while everything was working REALLY well, after reducing the dosage of Asacol so drastically for several months, my UC is no longer responding. I tried Cortifoam for a week in 1/13 because I couldn't get out of bed due to fatigue; after a week, it gave me such bad insomnia I had to stop taking it.

My doctors are respecting my request not to take any more prednisone (used to take it for chronic hives), and think I'm a better candidate for Remicade before we try anything like azathioprine or 6MP. The two most important goals for treatment are to keep me from having trouble working (I'm a cell biology grad student who teaches), and to keep my colon (surgery wouldn't reduce my bathroom trips, so there's hardly any point).

I'm feeling pretty confident about Remicade, although I'm worried about how long I will have to be on it. While I do understand that I will have to take Asacol for the rest of my life, I hate being on so many medications, and would want to taper the infusions if I'm able to get into remission for a year or two. I've heard that once you stop taking Remicade, it's hard to go back on it because of immunity--does anyone have experience with that?

I've been on Remi since March 2006 and in remission since April 2006. I've had no adverse reactions and I don't get frequent infections. I'm one of the really lucky ones.

It has now been a week since my first infusion, and I am noticing a few changes. No adverse reactions I don't believe, though the various aches and pains of UC sometimes make it difficult to determine what's really the cause of problems. I still have blood with every bowel movement, aside from two in the past week. So there is improvement there! I go about 3 times in the morning, no urgency throughout the day, and then after 8PM I become incredibly gassy and go a couple of times. My next infusion is next Wednesday, and I've heard that usually after the 2nd one you really know if it's going to make a big difference. So I've got my fingers crossed!! I'm so glad to hear everyone's stories! For those of you who have had success with Remicade, you give me incredible hope that I will have success as well. And for those of you who didn't have success, I'm sorry to hear it :/ but I hope that everyone continues to work towards feeling better and dare I say healing well!! We can all battle this and get through it, I know there is hope for everyone.

And ScienceGirl: I haven't had personal experience obviously since I've only had one infusion, but from what I've read (and I've read a lot) it is likely that your body will develop immunity to Remicade if you taper down or stop for a while. So Remicade seems like a medication that you stay on long term until it stops working or until a new, better medication comes out. That's my take on the scientific literature out there, but I may be wrong.

I have been on Remicade for over a year now. 900mg every 8 weeks. At the beginning I found it was a miracle how it worked. but after about 3-4 months I started to flare again, not as bad as I have been in the past. GI told me It could just take awhile for my body to get use to it (which he has said with every other med) Then came about 9-10 months after I started meds, I started flaring really bad again. He did a scope and my colon actually looked like it had healed even tho my symptoms were all there. That was in Aug 2012. I have kept taking it and I usually feel pretty good for the first 2 weeks after the infusion it seems to wear off. But I'll take 2 weeks out of 8 rather then none. I also get super tired the day of infusion, and seems to have a slight reaction and get really achy 2-10 days after. Glad it has been working better for other people. I'm just thinking my body doesn't like medication.

Just finishing the starter regimen for Remicade, it has helped me so much my symptoms went away after 2days. I am concerned that Four days after first infusion i rolled my ankle just walking out the door and i broke my ankle and foot. Ive never had a broken bone in my life. I am curios. Is this a side affect. Has any one had this problem

I was on Prednsone for almost nine months. I am not currently taking i refused it last time it was prescribed. I am currently on lialda and Remicade. I was in remision but i was starting to flare up a couple days before my last Remicade infusion. Im just waiting to see if it works like it did the first time