Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

Due to start Remicade

Fri, August 17, 2018 6:07 PM

About to start remicade infusions. Anyone have experience with this treatment? Nervous to say the least. Trying to stay positive that this will be the one that works. It’s discouraging to keep trying different treatments, get a colonoscopy, to find my disease is worsening. I also have ankylosing spondylitis that they are trying to treat as well. Fingers crossed I can get my first infusion next week. Waiting on insurance and my guts and joints are a disaster. Thanks for any info anyone has on this treatment.

aheckman11
Joined Jun 21, 2017

Mon, August 20, 2018 1:49 PM

Reply posted for aheckman11.

Many of us have. I was treated with Remicade for a year with no side effects, and it seemed to be effective for that year until my antibodies decided to eat it for breakfast. Some people have been using it for much longer with great results. Because you're here, I'm going to make a reasonable assumption that you've used prednisone before. Believe me, for me, and for most, Remicade is absolutely nothing compared to prednisone for side effects. The worst part is just getting your vein pricked every few weeks. For some people, in rare situations they may have a reaction to the drug, but for the first infusion or two, you'll get a good dose of IV Benadryl to be ready for something like this, and the admistrator of the drug will be very closely monitoring you with all kinds of emergency backup ready to go. It doesn't get much safer than that.

But don't take my word for it. Anecdoes are not very informative. Just do a google search for the clinical data on Remicade, it's efficacy, risks, and side effects. Look at the percentages and decide for yourself. And don't forget to compare that to something else you already know, like prednisone.

kumputer
Joined Jul 19, 2013

Related Topics

Starting Remicade Infusio...

shannonmiller
Joined Feb 20, 2023

I have Ulcerative colitis, am experiencing a bad f....

read more

Biologic- How to get it c...

orthopt2003
Joined Oct 8, 2021

Hello. My daughter 10 years old after almost 18 mo....

read more

Starting ENTYVIO Infusion...

jabberwocky
Joined Jul 28, 2023

Hello. I’m new to the C&C community and ....

read more

Welcome to the Crohn's & Colitis Community!

This website is associated with CCFA.org and is supported by an educational grant from AbbVie.

Please read our Top 12 Rules before posting messages and sharing stories. Always be courteous and sensitive to others!

Intended audience. The Crohn's & Colitis Foundation Online Community is intended for patients and their caregivers, family and friends. The Community is not intended for industry representatives or advertisers and these individuals are not permitted to participate on the site.

Meet the Crohn's & Colitis Community! Browse our site to see what our community is talking about and find issues important to you.

Join in and share your stories. After you feel comfortable with our site, register to share your thoughts on a regular basis.

Stay secure. Remember that our site can be viewed by anyone on the Internet. With the exception of our registration and personal pages, search engines are available within this site. To guard your privacy, follow these simple rules: do not share your address, phone number, details about your family, or anything else you would feel uncomfortable with others reading. If you post your personal email, be aware that you may receive spam e-mail from spammers who gather addresses off of the web.

Read and react to posts with care. If you don’t agree or are offended by someone’s post, take a step back and think before you reply. Since we can’t talk in-person to each other, we must recognize that we may be misunderstanding stories or posts. Please be sensitive to others’ feelings and ask for clarification before acting out.

Search before starting new topics. To keep our message boards easy to use, please use the search bar to locate topics of interest before starting a new thread. If you start a new thread, please use obvious subject headings and words that will catch the attention of others. Topics will be archived after 21 days of inactivity. To view past topics and posts, click on archive topics within each of the forums.

Stick to our guidelines. To keep this site safe for everyone, please do not post: doctors' names, treatment facility names and treatment specifics, contact information for others without their consent, links to websites with uncertain content or advertisements, requests for fundraising, items for sale, requests for study, survey and/or questionnaire participation or provocative information.

Sharing photos. Please use good taste and appropriate images when adding photos to your profile or personal stories. Photos should be in .jpg format.

Not following the rules? Crohn's & Colitis Community moderators routinely scan the message boards and will delete tasteless posts. If you post inappropriate messages or pictures or use offensive language in a post on multiple occasions, you will be notified via email and your account will be inactivated.

Report foul play. Help the Crohn's & Colitis Community moderators by reporting anyone that posts inappropriate messages or pictures by clicking the 'Report Abuse' button under the message or emailing ccfacommunity@ccfa.org.

Questions or concerns? Please feel free to email us at ccfacommunity@ccfa.org with any questions or concerns. We want you to feel comfortable here.

Terms & Conditions. By posting your story, questions, concerns and other information on the Community, you grant the Crohn's & Colitis Foundation or its authorized agent permission to publish, reproduce, record and use your stories as Crohn's & Colitis Community or the authorized agent sees fit in any medium or forum in a manner which helps to further the Crohn's & Colitis Community mission. You agree to release and hold harmless Crohn's & Colitis Community from any and all liability by any third party that may arise from the release of information to any third party or by any third party and agree that all text and other content made by you, for you or the person for whom you are the parent/guardian, shall be the exclusive property of Crohn's & Colitis Community. The Crohn's & Colitis Community cannot verify every claim made by a third party contributor to our Community and is not responsible for the authenticity of information posted.

Thank you! The Crohn's & Colitis Community is successful because of members like you!

Thanks!
The Crohn's & Colitis Community Team

*Any postings on the Crohn's & Colitis Community site should not replace your physician's advice. Always check with your personal physician before taking any action regarding your health.