Anyone failing on Entyvio for moderate to severe ulcerative colitis?

I’ve been on Asacol/ Masalamine, was taking it for the past 10+ years. I was recently told to stop taking it 3 weeks ago because it was doing nothing for me. It seems like the remicade might be working but I’ve only had two introductory doses. I don’t use red or white sauces much. I’ve learned that eating an apple each morning helps a lot during times I can’t go and it gets uncomfortable. The one thing I can’t seem to give up is coffee. I’ve been seeing commercials on tv for RYZE, it’s some sort of mushroom coffee z has anyone tried that or have alternatives?

I'm really afraid to start RemiCade. Lots of potential side effects including cancers! I'm going to refuse that one if suggested. My Dr. is suggesting a double balloon procedure to check the small intestine too. Any body know if the small intestine is involved in ulcerative colitis? I've never heard of it but my large bowel scopes look great. Maria.

Thanks alot, but I'm allergic to all you mentioned! Maria.

Good morning to all of you..my ulcerative colitis was in remission for over 20 years until I got Covid 12/19/21. I was on a lot of different meds that did not work, mesalamine products, lialda , enemas , anucort suppositories, and the last one was Budesonide which I had many side effects, after just several weeks I had to be hospitalized and had a emergency colonoscopy. I was so inflammed the doctor could not get all the polyps out which does not set well with me, due to cancer risks. I finally went to another doctor one time and asked for a tapering dose for the budesonide. I did the taper fast and wound up going through a withdrawl from the medication. It caused some problems with my cortisol level as you do not make it when you are on steroids and my A1C hemoglobin shot up..luckily I did not get full blown diabetes, but my levels are being re-checked next week. My hemoglobin and iron levels were lower which showed I may have anemia. They wanted me to take Entyvio but so far I have refused, I had Remicade once and I had some sort of reaction from it. I do not like the side effects they have published about the Entyvio, it scares me and I told my physicians so. I am off all the colitis drugs at this point. Mayo Clinic has an IBD Biobank study which I have enrolled in. I hope I get accepted. The number to call for Rochester patients is 507-538-0678. I lost a lot of weight because there was hardly anything that I could eat. I use gluten free bread which I buy at Walmart the brand is Schar, it has a good flavor and a better price. I take Gas X which I buy at Costco, better price ..it helps, apples are hard on you and any skinned fruits. I still do not eat fresh fruits or vegtables, I can not tolerate them. This is a tough disease as it controls you, I was so isolated for so long and with it comes the depression as I am so worried about having accidents in public, it affects my job and life itself, but I hope someday they can find something to help us. They already know that Covid had an effect on our immune and digestive systems. I have been in a flare since 12/19/21 and I pray that some day it stops. Hang in there..Kitty2

I had ulcerative colitis and stuck with mesalimine as my primary treatment for years due to concerns about adverse effects. Starting in 2020 things got noticeably worse endoscopically so that I finally gave in to my GI doctor's advice to take stronger measures. I failed on Humira (no relief but developed neuropathy and the general view was that severe inflammation and/or Humira caused a stroke). Next I tried Entyvio and then Stelara. They gave some healing, but I could not maintain therapeutic levels, even with monthly doses. Finally I tried Rinvoq (concluding the risks of heart/stroke issues were outweighed by the potential benefits). Between Aug 2022 and Jan 2023 colonoscopy assessments went from severe UC/inflammation to mild - tho by then there had been a lot of scarring of my colon etc. And in the meantime precancerous polyps started convertinag to cancer by the time they could be removed, so that I recently had a colectomy.

My thoughts: (1) I felt that over the years the stronger medications have been over sold in that serious adverse effects are a real risk and I was surprised by the relatively low success rate for drugs like Humira. So it is difficult to find the right path. (2) The step therapy approach taken by insurance companies can be a real impediment. At the time I had to fail with a TNF blocker before I could try Entyvio, which my GI dr believed would have been a better choice, and there were some indications Entyvio was less likely to be effective following a failed TNF blocker. (3) But there has been a lot of progress in developing effective treatments which appears to be continuing. So there is hope.