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Ulcerative colitis - worried about medications

Digestive Health | Last Active: Aug 24, 2023 | Replies (70)

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@vafields

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

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Replies to "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!