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Decision about Remicade



Hello! I am a new subscriber, but I have had Crohn's/Colitis for about 7 years. I was misdiagnosed with UC in April 2000 and was hospitilized at the time due to a doctor that just would not listen. I went into remission until the beginning of 2006, when I decided to ignore the symptoms until I just could not stand it anymore. A colonoscopy and biopsy discovered that I had Crohn's/Colitis, 2 severe fissures, alot of ulcers and a lot of other medical terminology that just makes my head spin. I have not been remission since. In the past year I have been on several doses of Pred that start at 60mg and taper. I have tried 6mp, but it made my hair fall out (according to my dr it is a rare side affect). I have tried azasan, but it caused vomiting about 3 months after I started. My doctor wants to try Remicade, but I am a little nervous. The only resource that I have to research is the internet and I have found several people that have had some very bad side affects. I talked with my doctor about what I have read and he says that I am only reading about the bad stuff and that more people than not love the meds. I am a mother of a 2 year old, a wife, and I work full time so I don't have a lot of time on my hands. I need to be for all of these things so can anyone tell me about the side affects (if any) and the process that this entails.
Hi Susan
Welcome to the forum.
Like the saying goes different drugs may work well
on some people and other people it may not.
Its called trial and error.
Remicade works well for me for the first 4-5 weeks
then I slowly start going downhill untill I can get my
next infusion which is every 8 weeks.So for the 3-4
weeks that I'm waiting for I just get sicker.I sorta am
used to it know. So I just grin and bear it.I have been
taking Remicade since it first came out about 4 yrs. now.
Some times and not all people get a reaction from this.
A reaction for me is my face feels like its on fire and is
red as a beet and you heart starts pacing a bit faster
and then it feels like you can't breathe. So soon as I feel
this about to happen I just tell the nurse to shut the pump
off for a few minutes then my body goes back to normal
and they restart the infusion again. It has only happened
to me 3 times out of 4 yrs.
At first I am given some tylonal and benadryl to stop the reactions,
which help alot
This may sound a bit scarey to you being a first time user.
But the nurses watch you at all times and you might not even
get a reaction.

This does help slow down the drainage from the fistulas too.
I at the moment have been dealing with too of them also.
This also makes you feel a whole lot better too, but at
the same time you might need to have 3or 4 infusions before
you start to feel anything. Or hopefully the first one will work.
Your body will tell you.

Hope this helps you. If you have more Q's I will be glad to answer.
Also I take cipro for the fistulas and some people can take flagle too.
Unfortunately flagle does not agree with my body and you must stay
out of the sun and no alcohol when on flagle only.Cipro is alright.


Thanks for sharing your info. I am a little nervous about the drug, but I will be starting next week. I just worry that since I do not tolerate immune supp that remicade may not work either and just like any Crohn's patient all I want is to feel normal again. I appreciate any info anyone can give since I don't know anyone that suffers from Crohn's I don't have anyone I can talk too.

Thanks again,
I was suppose to have my remicade on Mon.
but the Dr. didn't have the papers in order so
Now Hopefully this Mon they have me scheduled
in. Im already 2 weeks behind and am really sick.
I would try not to worry so much about getting
the infusion as for it only adds to your stress level.
Don't worry everything will go just fine.
Let me know after you receive your infusion.
Take care.


Thanks, I will. I am having my TB test on Mon and they said they will schedule the first infusion for next week so I will let you know how it goes. Let me know how everything goes for you on Monday.


I've had Remicade infussions at two facilities. The first was perscribed by my diagnosing GI who was treating me probono as I didn't have medical insurance. Luckly Centocor has a freed meds program for indigents, and I also got on the county MSI program. That allowed me to get 3 infussions at the local hospital. For these I was actually admitted to the hospital and had a room for the treatment. I was never there longer than 4 hours and had no side effects from the drug. The 3 fistulas and active Crohns were all much much less symptomatic the following morning. The fistulas closed by day three3 and BMs were down to 3 or so. Had I been following a low residue diet and had 3-4 treatments @ weeks 0, 2, 4 and 6, I feel that the fistulas would have healed completely. Dr. didn't agree with me though. Without fail, two weeks after treatment my symptoms gradualy returned.

Second run with remicade was more recent and through Kaiser. The infussions were done at the local chemotharapy infusion center. The process was easy as with most when dealing with Kaiser due to their data sharing efficiency. The treatments however were torture. 8 hours minimum, and they WOULD NOT speed things up. On several occasions I changed the flow rate myself in the restroom and was promply yelled at by senior staff. At the risk of sounding like a heartless bastared, 8 hours with god fearing cancer pacients really takes a toll. The treatments worked the same as my first run with no side effects.

Heres to hoping it works well for you.


I am scheduled for my first infusion on Friday. I hope everything goes well. I am nervous about things like hairloss (6mp caused hair loss so I had to stop), vomiting (asazan caused vomiting) and fatigue. I think the fatigue would be the worst part. Without the Pred I barely make it through the day, the rest of the symptoms I could suffer through.
Hi Susan,

I haven't been on this forum in a while, but glad I checked in. The reason why I haven't been on is because I am healthy... Remicade has been amazing for me. At the end of last year I was in the hospital. I am perfectly healthy now, and the only drugs I take are Remicade once every 8 weeks and a little 6 mp on a daily basis. The infusions are typically 3 hours and I sleep right through them because of the benedryl they give me first. I wish you the best of luck and wouldn't worry about taking the Remicade at all.