Remicade infusions....what to expect??????

They typically give you a tylenol and a benadryl before you start your infusion. They give Remicade through an IV. My first infusion took 3.5 hours. I never had any bad side effects from it, it just stopped working for me after the 2nd infusion.
My infusion center has tvs and snacks and magazines. I also brought my husband with to kill the time.
Do you have any specific questions?

@ ttkmhu....i was just curious to see how well or not the drugs worked....if there were any side effects and how fast they went to work ie..feeling better...


@ beth75.....thanks, i have to get a hep b vaccine next week and then asap i hope...my new doc is very proactive.. im gonna take the next few weeks off and hopefullly get things under control b 4 i go back to work. Good luck on the 26th....ill be looking for your post for an update.....haha

I only had three infusions then it stopped working, but it has put others into remission for years. I had no side effects. I actually enjoyed going, because I got to sit in a comfy chair and they fed me snacks. Too bad it failed...

I had my first infusion of remicade in July 2009.  I wasn't pre medicated my first infusion.  The max speed they go is 150 and when I got to that top speed.  I got chest pains and dizzy and I felt like I was going to pass out.  They gave me bendryl and tylenol and slowed down the infusion.  I was still having the problems so they stopped my infusion.  I got through maybe half my bag.  We tried it again but I was pre medicated with tylenol and hydrocrotisone(sp?), i get very dizzy and tired from the bendryl so we use that instead.  I also get my infusion very slow.  I don't go above 65.  I get there at 9 and am done at about 2:30-3:00.  I still got the chest pain but it was managable, we figured out after alot of heart tests,etc. that it was heartburn(a side effect) from the remicade.  So, I'm on prilosec twice a day for that.  It works but every once in awhile I get heartburn really bad still and then I take tums and I'm okay.  I also get a rash about two weeks after my infusion so I take zyrtex once a day all the time.  I was at 5kg from July 2009 every eight weeks until Aug. 2010 and they upped me to 7.5 kg every eight weeks.  This is when I started getting joint pain.  I live with it but it does hurt sometimes.  I feel like an old lady at times.  The reason I was upped to 7.5 kg is because when they did a scope in jan. 2010 my colon wasn't healing from the remicade.  The remicade helped my symtoms after about three infusions.  I was going D about 10-15 times a day with reallly bad urgency and alot of accidents.  I was horrible when I started the remicade.  Since the third dose I go about 4 times a day with no accidents since starting it(knock on wood lol).  I am still very tired.  This is my number one complaint.  So, when they did the scope in jan. 2010 and said my colon wasn't healing they wanted me to go off it.  I said give me some more time.  I don't want to go off it I feel so much better and i have a life now.  She said I will give you 6 months.  Well, i had a scope done in Jan 2011 and my colon went from severe uc thoughout to no uc on my left side and mild inflammation on my right.  So, I would give it time.  It has worked wonders for me.  I can go places with my kids and go for walks and car rides.  I also can figure out when I will have to go to the bathroom, mornings are bad for me, once after lunch and usually I don't go from lunch until the next morning.  Once in a while I will go once after supper.  I can pretty much eat anything.  I do notice that coffee and milk products give me bathroom issues but I usually go once after eating or drinking them and I am fine.  I still worry about the bathrooms (like when we went on a trip to Chicago, walking around downtown and going on boat rides) but I was fine.  It is more in my head.  I like my infusions also because I do homework, take a book and sleep.  It is my me time(pretty bad huh?).  I'm telling you this about the side effects because while I do get them I live with them because they are better than not being on the remicade.  I have been on it almost two years now and it has been a god send.  I hope it works for you.  Sorry for the long post. lol

I noticed within two days that Remicade was working. (while it did work) The blood completely stopped!

I am really tired the evening after the infusion and I think the upper right abdominal pain I'm experiencing is related to Remicade but I'm not sure. I felt it really kicked in right around infusion 4 although I'm still not 100% I *think* because my infusions need to be closer together. The infusion itself is not a big deal. A little boring. I usually put a movie on my iphone to watch. :o)

Hi Krm,

I am sorry to hear what a tough time you're having with your UC. Have you considered trying any alternative therapies? There is a sticky thread on the top of the board called resources that contains a list of potential treatment options, both medical and alternative. There may be some other options worth trying before surgery if you're not ready for surgery. On the positive side, surgery can be a great option. I've been seeing a lot of members come back after j-pouch surgery and say that they are extremely happy with the results and that they regret waiting so long to have surgery. I am scared that Remicade may be my last option too and I don't like to think about it because I am not sure Remicade is a long term solution, most people I've seen taking it have only taken it for a few years maximum before it became ineffective. That may be the case on here more so than in the real world, I am not sure. I hope you find some relief soon.

Thank you, notsosicklygirl and UC Stevie, for the feedback. I will definitely check out the resources for other treatment options. Not sure when I will be starting the Remicade as I still need to get authorization from my insurance. UC Stevie, I hope the Remicade continues to work for you.

Thanks again.

hey mom - sorry y'all are having to deal with this :-(

not many of those folks still around (not sure of the significance) except NSSG - she'll for sure jump in here shortly -

I would ask, what do YOU think about adding Remi ?

I've never used it so I'm not much help - but many folks here have and are -

when you have time, you might add a siggy so we all know more about your son and his dx and treatments so far -

hang in there -

Has all he ever been on is Pentasa and pred? No other oral 5-ASA's such as Colazal, Lialda,Apriso etc? What about rectal meds? Honestly it seems a bit premature to start on Remicade especially if he hasn't tried any of the safer meds first. What is the extent of his UC?

I've been on remicade since 2009. I saw immediate results and it changed my life. I was no longer obsessed with bathroom availability when leaving my home and no more cramping. I've had no side effects with the exception of a headache during the loading dose infusions. Good luck with your decision. I realize it's different when deciding for a child.

Doggiedo, this is an old post, so not sure you'll get a response from the OP. There have been some here on remicade who've gotten pregnant on it, and had healthy babies.

Here's some links on the subject, remicade is mentioned within each:

From conception to delivery: Managing the pregnant inflammatory bowel disease patient
www.wjgnet.com/1007-9327/pdf/v20/i13/3495.pdf

The Second European Evidenced-Based Consensus on Reproduction and Pregnancy in Inflammatory Bowel Disease
ecco-jcc.oxfordjournals.org/content/eccojc/9/2/107.full.pdf