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Has anyone with UC stopped responding to Entyvio?
Hi! Diagnosed with UC in 2017, which became severe and fulminant by 2018. The biologic, Entyvio, worked well and got me into remission for 13 months. In October, the day after my annual flu shot, I started bleeding again. GI doc suggested Entyvio infusions every 4 weeks, instead of every 8 weeks, which had been working. Took oral prednisone as a bridge until bleeding stopped 5 weeks later. This “dose intensification” has failed, as the bloody diarrhea returned with a vengeance!!! I just had 8 labs done (3 blood and 5 stool) to rule out anything else. GI doc has prescribed oral prednisone again as a bridge until we come up with Plan B. Right now I am terrified at how quickly this is escalating and don’t know what to do!!! I know there are other biologics out there and even an oral, but what are the safety profiles? Has anyone stopped responding to their biologic and then tried something else that worked? I am 63 years old and had been in excellent health before this horrible disease took over my life. Any help would be greatly appreciated! Thank you!!
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I had been in remission for UC for almost 3 years, but now Entivio has stopped working. I had tried tnf blockers (Remicade and Humira) but they we're not effective, and my health was almost destroyed by long term oral steroids (Prednisone) before Dr. prescribed Entivio. Any ideas? How about Stelara or Skyrizi?
Hello @limur1257. I moved your discussion and combined it with one titled, "Anyone with UC stopped responding to Entyvio?" - https://connect.mayoclinic.org/discussion/has-anyone-with-uc-stopped-responding-to-entyvio/.
Members like @dval have discussed how they approached their diagnosis once a medication like Entyvio has stopped working. @dval also discussed taking stelara after Entyvio and may be able to share how remicade is what ultimately helped them back into remission.
@limur1257, have any new treatment options been discussed with you for moving forward now that you are no longer in remission?
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2 ReactionsI just read your post.Since it is now 2024,bI am wondering how you are doing? I too am struggling with UC, have been off and on for 20 yrs. Worst part was during COVID when I lost my job and other stressors almost broke me. I was finally given Entivio after 2 other biologics (Remicade and Humira) we're not effective. The results were phenomenal with almost instantaneous relief. Now forward to 2024 and it appears the Entivio has stopped working. I would really love to hear from you as it seems our stories are similar and you may be able to offer some helpful advice. Thanks!
Well, not yet. I am going in for a colonoscopy next week to confirm the disease is active again. When I told the doctor about my medication history he didn't seem to be particularly concerned even though I had been unsuccessful with both conventional and biologic treatments previously. I really don't want to repeat these meds because they were either ineffective or had bad side effects. So I am limited. This is why I am so anxious to hear about other treatment options. Thank you!
I am in the same boat you are. Entyvio stopped working and now my doctor wants to start me on Stelara. I see this post is fairly old. How did you do?
Sadly, the Stelara did not work. Had the loading dose (IV) and then the first subQ shot and ended up hospitalized the next day. Back on high doses of prednisone (IV and oral) and then started Remicade. The standard Remicade dose (5mg/kg) worked initially during the loading dose period and then not so much. GI doc did battle with my insurance company to get authorization for a higher dose (10 mg/kg) every 4 weeks. I was so malnourished at that point in time, I was under 100 pounds and the clinical recommendation was 110 pounds. GI doc is tenacious and finally got approval (2 weeks before I was supposed to have scheduled proctocolectomy). The higher dose worked!! I was able to cancel the surgery and have been in remission for 2.5 years! I am still getting the Remicade infusions (the higher dose) but every 6 weeks now. GI doc does therapeutic drug monitoring to check inflammation levels, trough levels and antibody titers to make sure Remicade is still working and that I have not developed antibodies. That’s what happened with the Entyvio. So I am happy to report that the Remicade continues to keep me in remission. I also follow a whole food, plant based diet, which seems to help me. I have been maintaining my weight (110 pounds) and feel good for the most part… I am cautiously optimistic that this will continue. If not, there have been several newer drugs approved over the past few years, so if it gets bad again, there is some hope… I wish you the very best and I hope I have answered your question.
I have had UC for 28 years. Early on, it was controlled with oral meds and prednisone. I was diagnosed with colon cancer in 2019, had surgery (multiples) and have been cancer free for 5 years. I started on Entyvio two years ago. It was working pretty well, but not perfect. I am now on every four weeks and will have a colonoscopy soon. I don’t know if they feel like it’s working enough. My doctor mentioned Zyposia as a possible option. Has anyone used that?
Remicaid didn’t work.
I went through Humira, Entyvio (every mo) and Stelara (every month) and failed on each. Biologics did not work for me.
I finally got good results with Rinvoq. That is the latest in the line of Xeljanz, Zeposia and then Rinvoq. Rinvoq does particularly well with people (like me) who already failed on other meds. I had mucosal healing and a major reduction in inflammation. You might want to ask about Rinvoq.
(Unfortunately, although it helped with UC, it did not prevent conversion of high dysplasia into colon cancer, so I then chose a full procto-colectomy with end ileostomy.)
Thank you for your response. I am so glad to hear Remicade is working for you. I have never been hospitalized and I am thankful for that. I am always borderline anemic it seems like. I can handle the constant trips to the bathroom it is the fatigue that is so depressing. I have a follow up appointment in July to see what the next steps are. In the meantime, I stay away from processed foods, dairy, and try to keep my stress in check. I will update this page with my progress in hopes it helps others.
@hardingv
I’m so sorry to hear that you developed cancer. I’m going to ask my GI about Rinvoq. Maybe that would be a better fit for me.
Can you elaborate a bit on your journey. When did the high grade dysplasia show up? How long had you been on meds ?