New to Remicade (Infliximab)
Hello everyone. I was just diagnosed with moderate Crohn's disease last week and my GI doctor wants to start me on Remicade (Infliximab) soon. Just wondering if anyone has any experiences with this drug. Are there any significant side effects you've experienced? What is the infusion process like? I'd love to hear peoples thoughts on this treatment, a bit nervous to start it.
Hi , I'm so glad you wrote in. I'm sorry about your Crohn's disease diagnosis, but glad you found our community. I also have Crohn's disease and have been on Remicade since March, 2017. In many ways, it gave me my life back. I have had positive experiences with the medication and the infusions. My recommendations would be to hydrate really well in the day before, day of and day after your infusion, to get some extra rest the day of and days after your infusion, and to be patient with the dosing (amount of medication and frequency of infusion) because it took me some tweaks over time to get to the right spot (I receive 10mg/kg every 5 weeks now). I also wanted to share a few articles from our advocates about Remicade and infusions to answer your questions:
https://inflammatoryboweldisease.net/living/what-expect-infusion-biologic/ Keep us posted! Warmly, Amanda (Inflammatory Bowel Disease Team Member)Welcome to the community
😀 I have tried Infliximab in the past, and for me, the only side effect was being super tired, and a little achey on infusion day, and for a day or two after. I've heard people say that they can feel it for up to a week, and others experience things like headache too.
Usually, the first few treatments will be administered slowly, to ensure there's no adverse reaction - how long that will take differs between hospitals. Then the infusions can be administered more quickly one it's clear that you tolerate it well. Again, how much time it actually takes will differ from hospital hospital.
Many people call it their "wonder drug", as it helped ease their symptoms where other treatments have not, but it is important to understand that everyone with IBD is different. There is no one size fits all answer. All you can do is hope that it helps your symptoms, and quickly! 😀
When on Infliximab, things like avoiding contact with people who have infections/bugs is important, as your immune system is being suppressed by the treatment. It's also recommended that you have a flu jab every year, and wear sunscreen to protect your skin - factor 50 is preferable.
Good luck!
- Sahara (team member)
Hello I am new to this I wanted to know everybody’s response on the Remicade my doctor was talking to me about it how do you guys think it works for you guys do you think it’s really good should I give it a try is this something that would help me I just want some help deciding if its worth it
I can't really say more than I have above. IBD is notoriously difficult to treat because everyone experiences IBD differently; the disease progression and symptoms etc.
What works for one person doesn't really have any relevance to the next person.
Many people call it their “wonder drug”, as it helped ease their symptoms where other treatments have not, but it is important to understand that there is no one size fits all answer.
Many of my friends are on it, and it works great for them. It did nothing at all for me.
All you can do is try, and hope that it helps your symptoms. 🙂
- Sahara (team member)
