Does Remicade REALLY work?

@RhodaK (177)
United States
May 31, 2007 7:38am CST
My 11 year old daughter was diagnosed with Crohn's in Feb. of this year. We have tried prednisone, Azasan, and Remicade. She has been hospitalized 3 times since she was diagnosed. Finally we went to Remicade and she just had her 2nd treatment on May 29. I am pretty much at my wit's end about this drug. It doesn't seem to be the "miracle cure" I keep hearing people say. She really hasn't responded very much at all. Anybody out there have any advice about what I should be looking for, what to watch out for, and so on. Please help, I don't know what to do.
4 responses
@Angel3yes (455)
• United States
24 Mar 08
I actually have been receiving Remicade treatments for almost a year and a half but my doctor told me that I needed to also be on an immunosuppresant while I was on them or they wouldn't be effective. I am on Imuran to suppress my immune system as well as Pentasa, a painkiller for my joints, and bentyl. I am 21 and have had Crohn's since I was nineteen years old. Remicade was my doctor's last hope because I had a bad narrowing in my small intestines and they were going to have to do surgery but the Remicade opened it up and made it so I avoided the surgery. I still have problems, especially the week right before my Remicade but thing are ten times better than they were.
@lulu897 (176)
• Canada
13 Apr 08
I have been on remicade for about 6 years and it's the only thing that helps me. I also take imuran and colestid (short bowel syndrome for too many surgeries). If you are having problems a week befor your treatment, tell your doctor or your remicade nurse, they should move your treatment up. I started at every 12 weeks for treatment but had problems a week or two before I am now at every 9 weeks and have to problems.
• United States
14 Apr 08
I've had my treatment moved up a week twice and they don't want to move it up any further than every four weeks. If it is any sooner than every four weeks than there is too high of a chance of developing serious complications such as certain cancers.
• Switzerland
19 May 08
I received Remicade treatment for about a year for my Crohn's disease in the hope that it would help my complex anal fistulas, unfortunately it didn't help me at all. I was put on Thalidomide for a while afterwards which the doctor thought was helping but I stopped taking it when I moved to Switzerland from the UK as it is not available here, also, I didn't want to continue taking it as my husband and I would like to have a baby soon. I currently take azathioprine for my Crohn's and have had a bowel resections and about a dozen or so operations on my fistulas, which I have had for going on six years now. I am currently thinking of opting for a temporary stoma.
@Virgie60 (556)
• United States
30 Sep 09
My son just started Remicade and is due to have his second infusion. Did this ever help your daughter? We are very anxious and hope that it helps our son. He was dx 5 years ago with Ulcerative Colitis and nothing has really helped very much. It is hard for him to work and go to school. So really hoping that this will be the answer.
• United States
9 Jul 08
Hi there, I have crohns. I have tried remicaide. I had an allergic reaction on my third dose. Talk to the gastro doc about giving your daughter benadryl before her infusions as a just in case type of thing. Also, if she is on prednisone please talk to the doc about Caltrate with Vitamin D. New research shows that vitamin D may play a role in auto immune diseases. And the Calcium is a must since she is taking prednisone. Bonus side effect to taking is that it can be constipating ie: help with the diarhea. Entocort is a great alternative to prednisone as well. A lot less system wide side effects. Also, I take flaxseed oil capsules 2 to 3 times a day. Great natural anti-immflamatory for colon and joint pain associated with crohns. It does help. Talk to doc about these, if he/she is not open or discuss these with you, find a new doc. A great gastro doctor is the key to managing this disease! Good luck, and feel free to add me to friends and ask any other questions you may have. Having someone to talk to who understands I know can be a great help in of itself. Take care of yourselves.