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What to expect from remicade?

I'm Eddie, an 18 year old, recently diagnosed and hospitalized for ulcerative colitis. I got out of the hospital two months ago and have been in severe pain. This week I am starting remicade. Will i notice any changes right away? Are there many negative side effects? and does it hurt when your getting it? honestly any information anyone can give me would be great. doctors just keep telling me that it should work and that there may be complications, but i want to hear from people who have experienced it just to get a better understanding. Thanks.
 
My son is 16 and he has been on Remicade for a year for Crohn's disease. For him the relief was immediate, he felt 100% better the next day, but it differs from person to person. It can take a few infusions to see improvement(of course our experience is with CD and not UC too).

The infusion is done through IV and it doesn't bother my son at all. It usually takes about 2.5 hours maybe a little longer. They will sometimes pre medicate you with benedryl and that tends to make my son feel a little sleepy for an hour afterward. Others experience fatigue for that day or that day and the next.

Infusion schedule after the loading doses can vary depending on what you may need. My son goes every six weeks.

Hopefully, someone with UC will be by shortly as well and can give your their experience. Good luck!
 
Thanks so much. I was really nervous that the infusion itself would be painful. And I'm glad to hear that it helped your son, fingers crossed that I have a similar result.
 
No, the infusion isn't painful to him at all and he usually naps through it!! I hope you see results quickly!
 
the infusion isn't painful. I get it and I have UC also. its the same as getting any IV in and you don't feel it apart from the needle or cannula. You will get Benadryl and hydrocortisone to limit reactions along with the infusion. the first few infusions can take 2 hrs to go in and they observe you for a further 2 hours. after that they speed up the infusion and it takes half the time to do.
remicade worked overnight for me and I saw an 80% improvement(by the amount of bms I was doing) and after the 2nd infusion I was in remission. it really was a miracle drug as nothing else worked not even prednisolone.
you will be getting it every 8 wks after the 1st 3 doses and indefinitely if it works. everyone is different and it may take longer for it to work.
good luck with it.
ju
 
Actually, at least here, 2 hours is considered rapid infusion. Slow infusion, which will be what you get defiantly for at least the first few times, can take up to 3 1/2 to 4 hours. Where I get my remicade at now for whatever reason doesn't do rapid infusions so mine usually takes 3 hours at the fastest, most of the time it's longer because they arnt often runnin on time. I miss the rapid infusions though. I've been on remicade almost 7 years.

He infusion doesn't hurt. The only discomfort is inserting the IV. You will probably be pre medicated, though I have seen some people post on here that they are not pre medicated. I don't know about this for sure, I've always been pre medicated since I've started remicade. They give me a Benadryl and a tylonal pill and give me a little cortisone ( don't know exact name) by IV. Bring something to do during your treatment. A book, laptop,, iPod, whatever you want to pass the time. I bring my iPad and watch movies or tv episodes I download onto it. Whenever I first started remicade, the first few times I got a pretty bad headache afterwards, and I was wiped out for a few days after. Now I don't get the headaches anymore, but I am wiped out for the rest of the day of the infusion and a little tirder than normal the day after. Sometimes the day of my infusion,later that night afterwards, my legs start to hurt a little for some reason. Not like bad, the best way I can describe how it feels is it feels like I've just done a hard workout and your muscles are tired. Thats gone usually by the next day though.

My first remicade was done on an emergency bases in the hospital. I noticed improvement after just a couple of days. A lot of people, if remicade works for them, notice an improvement pretty quick after starting.

Good luck tommorow! I hope everything goes well and that remicade does the trick for you! It has given me my life back, I hope you get same result!
 
everything went ok today. not feeling any differnwt but hopefully it will start to work soon. thank you all for the info I was actually really scared going into that.
 
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