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

Ongoing symptoms while using biologics

Wed, July 24, 2024 6:53 AM

I'm a 39 year old male diagnosed in November 2023. My first colonoscopy showed mild to moderate patchy inflammation in the hepatic flexure and transverse colon. I was initially given prednisone taper that started at 40mg daily for two weeks then stepped down by 5mg every week thereafter. Initially my symptoms (abdominal pain, loose stools, back and knee pain) subsided but returned when I stepped down to 30mg. This continued until I finished the taper and ended up feeling just as bad as before I was diagnosed. Fast forward to January 2024 and my doctors decided to put me on biologics, Humira. After the loading doses and 4 weeks of maintenance doses I was feeling great but my symptoms slowly started to return. I had CT scans, x rays and even an MRI, none of which showed anything. A repeat colonoscopy was done in May to show I still had inflammation in my hepatic flexure and biopsy showed chronic active colitis. Doctors suggested I go to weekly injections. After two weeks of that I was feeling better again but my symptoms soon returned once again. Blood tests all came back normal for liver, and CRP. Still waiting on drug level and antibody testing results. Am I being impatient on giving the adalimumab time to work? I feel like nothing is working and I'm not getting any reassurance from my doctors other than just the " this disease affects everyone differently" response. Has anyone here been in my situation? It's been almost a year since my symptoms started and I feel like I've gotten nowhere.

BobbyA413
Joined Jul 24, 2024

Tue, August 13, 2024 3:30 PM

Reply posted for BobbyA413.

Dear BobbyA413,

I hope there may be someone who has gone through something similar and can offer some encouragement. You are definitely not alone, and we often hear of many people contact us describing their challenges with treatments. It sounds like your physicians are also trying to work with you to adjust based on your individual needs. While we cannot provide medical answers here on this platform, we can encourage you to continue to press a conversation with your healthcare team about your treatment plan. As a start, here are some follow up questions you may consider:

1. How long will it take for me to see any effects and improvements?
2. If the adjustments that were made to my medication have not resulted in an improvement, what is the next step? What are the next options we have to consider?
3. Will I need to take additional medications in addition to my current treatment?
4. What do my drug antibody level results tell us about where I am in my disease and my response to this particular treatment?

If it is helpful, you may want to review the current treatments that are available to be able to discuss your treatment plan openly with your healthcare team:

IBD Medication | Crohn's & Colitis Foundation (crohnscolitisfoundation.org)

After you review and have your discussion with your doctor, feel free to reach us if you have any additional questions at info@crohnscolitisfoundation.org,

administrator
Joined Oct 12, 2017

Related Topics

Crohns Qs new hair loss a...

ghand17
Joined Oct 23, 2022

I am also newly diagnosed. I was put on Inflectra ....

read more

Struggling to find answer...

KatSchneider
Joined Sep 1, 2023

Hi, I've been struggling to get a diagnosis si....

read more

My UC journey and progres...

Bonbon
Joined Sep 27, 2023

Hello all! I’m new here, I’ve been dia....

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.