Crohn's Disease Forum » Treatment » Remicade/Infliximab » New post for Remicade

01-23-2018, 09:03 PM   #1
Join Date: Sep 2017
Location: Florida
New post for Remicade

I went through the forum and I can't find any resent posts about Remicade. I am currently taking 40mg of Humira every week, and it is no longer working for me. My GI wants to switch me to Remicade, and just waiting for my insurance to approve it.

How have you all traveled while on Remicade? I know there is an infusion schedule that must be followed, but my husband will be stationed overseas for 2 more years. I am not allowed to go with him since the Navy cannot provide the care that I need at the hospital on base. They currently do not have GI doctors there. I want to visit my husband while he is there, but if I go it will be for 2 months at a time. I am not sure what my infusion schedule will be at the moment.

Did Remicade really work? I am hesitant to keep taking biologics if my body builds up antibodies and the medication won't work.

How did you feel after your infusions? I have a 3 year old that I have to keep up with, and the side effects of Humira make it very challenging to do.

Any advice or shared experiences will be much appreciated!
01-23-2018, 10:30 PM   #2
Dyana's Avatar
Join Date: Feb 2017
I have been taking Remicade about a year. I went from humira to cimzia to remicade. So far so good. No issues with the infusions- I take a tylenol and a benedryl right before and sleep the 2 1/2 hours during my home infusion. I have arthritis- bone issues neck and hip. I do not think they are related to the remicade but who knows. I hope you have good luck- I do not find it to be some type of miracle drug- but better than humira or cimzia. I also take a daily low dose of AZA to help keep antibodies from developing.
01-24-2018, 02:01 PM   #3
Senior Member
Join Date: Feb 2013
Location: Ontario

My Support Groups:
Remicade was a game changer for me. I have severe fistulising Crohn's, and Remicade started closing them right away. I did well on it for three years, my fatigue went away and I was in clinical remission. Then my feet went numb and I had to go off, currently on Stelara. After an infusion, sometimes I was tired, sometimes energetic. They typically start you with an 8 week schedule. I hope it works for you.
01-24-2018, 04:05 PM   #4
Lisa's Avatar
Join Date: Apr 2010
Location: New York

My Support Groups:
I'm with Tuff as far as Remicade working well for fistulas. I have been on it for over 12 years now, and have traveled to different places such as Canada, the Bahamas multiple times...and right now I'm looking at a 2 week trip to Finland this summer.

I have gone right back to work after an infusion, but I try to get them done about mid-day and I go home after to lounge around (yeah right) and do everything that is needed to be done there such as feeding critters (2 and 4 legged), cleaning house, laundry etc.

Hopefully you can go onto an 8 week schedule, which should make it easier for traveling.

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
01-24-2018, 05:53 PM   #5
Join Date: Sep 2017
Location: Florida
Tuff and Lisa,

Thank you for the advice! I have been fortunate that I do not have fistulas, and the worst complication I have is one stricture. I have been having a lot of flare ups as of late, probably thanks to the stress of starting school and my husband getting screwed over with orders because of my Crohn's.

My doctor thinks that Remicade will work for me since he has had other patients who did not respond to Humira have fantastic results with Remicade.

It seems from both of your experiences that this is a long-term medication. Does this seem to be the case with others that you know that are on Remicade?

I try really hard to take care of myself, and follow the diet that works best for me and my Crohn's. I have been super super lucky so far that I have only had a handful of ER trips and no hospitalizations or surgeries. I'm only a little under a year and a half out from my diagnosis, so lets hope my luck continues! I am happy see some people have great outcomes from the medication :-)

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