Ulcerative colitis - worried about medications

My dad was diagnosed with UC
7 years ago, was in remission until 3 months ago. What is perplexing is that he has no outward symptoms-no pain, bloating etc, but scan shows severe inflammation and ulcers. Sadly, Prednisone & Melasimine are not putting him back in remission this time. He has an upcoming appt to go over options. Any words of advice, questions I should ask dr or research I should do would be greatly appreciated. Dad is 72 and also having cognitive decline, extreme dizziness & weakness. Worried, but trying to educate myself. Thank you in advance.

I am on Entyvio and in remission now about 3 myths. But it does have its side effects, aching and fatigue for me. It is not good to be on Prednisone too long, has lots of side effects. Good luck and hope the doctors find the right med for him.

My son 33 years of age diagnosed with severe ulcerative colitis and pancreatitis. He has had bleeding for more than a year off and on. After a colonoscopy his diagnosis leaned toward auto immune issues although the source of bleeding has yet to be determined. He just finished a week of 60 ML of prednisone which has provided minimal relief. His lifestyle has been severely limited by his gastrointestinal issues. He is now down to 40 ML per day and has been recommended to start infusions of Infliximab the monoclonal antibody. In need of information on this topic

Hello @vafields and welcome to Mayo Clinic Connect. I am sorry to learn about your son's diagnosis. You are right to reach out to others for support as you walk this journey with him.

You will notice I have moved your post into an existing discussion on the topic of Ulcerated Colitis, which you can find here: https://connect.mayoclinic.org/discussion/ulcerated-colitis/

I did this to allow you to connect with members such as @tra3 @rrf67 @jinja320 @dval and @rexsan20 who shared their experience with the diagnosis.

Are you looking specifically for information on monoclonal antibody treatment or Ulcerative Colitis in general?

I was hoping to gather information on the treatment of ulcerative colitis with Infliximab, thank you!

Hello! I also have severe ulcerative colitis (pancolitis) and infliximab has helped me tremendously. I have battled this disease for nearly 5 years, having been treated with mesalamine, Entyvio, Stelara and for the past 23 months, Infliximab (Remicade). I had also been on high doses of prednisone (both oral and IV in between treatments). I had developed antibodies to Entyvio and had to discontinue; Stelara did not work for me and Infliximab (at a higher dose) finally got me back into remission. It is a TNF inhibitor and so far, so good… Initially it worked and then stopped working enough, so my GI doctor fought my insurance company to get authorization for a higher dose. At the time, I weighed under 100 pounds and the clinical recommendations for the higher dose (500 mg/kg) was 110 pounds. While waiting for authorization, I had scheduled a proctocolectomy because I had been flaring horribly for 16 months, had been in the hospital 5 times getting IV steroids and treatment for dehydration and just could not live like this (no quality of life and unable to leave the house). Initially I had this dose every 4 weeks and it worked well! My fecal calprotectin went from 1280 down to 27 and my trough levels were exactly where they should be, with no antibodies. My doctor does regular therapeutic drug monitoring to test my Infliximab levels and to make sure I have not developed antibodies (like I had with Entyvio). While we are all apprehensive about taking drugs, especially biologics, I have learned to accept that I have this chronic illness and that I must weigh benefits vs. risks, and right now, being in remission and having my life back is my main focus. I am grateful to have a brilliant GI doctor that monitors everything and I am happy to have a drug that seems to be working… I always keep in the back of my mind that there are several new drugs that have been approved to treat UC (with different mechanisms of action) that I may have to think about some day just in case the infliximab stops working, and while that makes me nervous, it also gives me hope… There have been strides in the treatments of IBD because cases are on the rise in every country. My biggest wish is that they will come up with a cure… The very best to your son!

Thank you for your response! I’m so sorry for your tribulations dealing with UC. My son is only 30 and has no real quality of life now. All the research indicates this monoclonal antibody can be a game changer. I’m grateful it’s been working for you!!!!

Thank you! Me too! IBD (ulcerative colitis and Crohn’s) typically present in younger people, but there is a trend now where it is presenting in people 50-60 and sadly, in children too! I presented at 60 and didn’t know what was happening. I had always been healthy - no issues, no Rx, ate good, wholesome foods, exercised... It came out of nowhere and took months to diagnose. It altered our lives tremendously!! I was fortunate to find a brilliant GI doctor who understands this disease and is up on all the data. We discuss treatments, clinical trials and real life data. He’s passionate about it because he’s good at what he does, and sadly, his daughter has it - she presented at the age of 7! As a parent and grandparent, I find that heartbreaking!! I know how horrible this disease is and how it affects every part of your life and everyone in your life!! I am blessed to have a loving, supportive husband that has been there every second of my most embarrassing, horrific, emotional moments. Unless you live this roller coaster of hell or love someone that has, you really can’t imagine how horrible it is and how it affects every facet of your life!!!! Your son is fortunate to have you! Continue to be supportive, research, find the right doctor (and pray). I have and continue to do all of the above. Just since I have been diagnosed, there have been several launches of new drugs for IBD. There is also a wealth of information on sites like Crohn’s and Colitis Foundation and Bezzy (IBD support site). Get all the information you can and a competent doctor. It’s a long journey, but there is hope!! I wish you the very best!! And please do not hesitate to reach out to me anytime. I have been at my lowest with this illness because it affects every part of your body and what it does to you emotionally is also rough. Don’t hesitate to talk to a mental health care professional, too, because there are very dark days with this chronic illness!!! I have learned to take one day at a time and be grateful for small wins… 🙏🏻❤️

I’m looking for clinical trials. One found thus far is

Is here