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.

Next Topic

EIMs / Switching Biologics?

Tue, October 15, 2024 9:36 AM

I've been on Humira for around 15 years. It's done wonders for my extra-intestinal manifestations, which include ankylosing spondylitis, uveitis, and autoimmune hearing loss. The AS and hearing loss have been in remission since I started Humira in 2009, and the uveitis has been in remission since I started taking Humira weekly in 2015.

Unfortunately, it's not adequately treating my Crohns. Despite being on weekly Humira, methotrexate, and sulfasalazine, my doctor is still finding inflammation on my colonoscopy. My calprotectin is 62, borderline normal, but still inflammation. When I went on methotrexate, it was 770, so definitely that med is working. My trough levels are normal and I don't have any antibodies.

My doctor wants me to switch from Humira to Remicade, with the hope of treating my Crohns and avoiding complications. I am scared that taking Humira away will flare my other conditions and possibly leave me deaf. I don't think Humira has ever adequately treated my Crohns. It's just not been the most dramatic of my chronic illnesses, and my docs haven't been that concerned about the minor amounts of inflammation I've had on my scopes. I know even minor inflammation can cause cancer or other complications, so I agree that we need to treat that. Also, the idea of my hearing loss flaring really triggers my health ptsd, reminding me of a time when I thought I was going to be disabled.

I feel like I should get a second opinion about treatment options, but I'm not sure how to proceed. I know a few doctors who offer telehealth, and perhaps could go in that way, but if anyone has any suggestions, I would appreciate that. Also: given the tests and my experience, I suspect my Crohns and EIMs have different inflammatory mechanisms. Has anyone dealt with this situation in the past, and has anything helped you? Many thanks.

rogerwhitson
Joined Oct 14, 2024

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

Newly diagnosed, Advice &...

lifeexperience
Joined Sep 20, 2023

I was diagnosed with Crohn's in August while....

read more

Welcome to the Crohn's & Colitis Community!

This website is associated with the Crohn's & Colitis Foundation.

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.