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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So sorry to hear what you’re going through but I understand completely! I am also happy to report that the Remicade is working for me!!! I had scheduled a proctocolectomy for last November and my GI doc got approval for me to take the higher dose of Remicade every 4 weeks. My weight was too low, so he had to battle with my insurance company to get authorization for the 500mg infusion every 4 weeks! My calprotectin was 1280 and I was on 60 mg of prednisone daily! So, it has been over 8 months and things are better than they have been in a long time!!! The biologics have different mechanisms of action, so they work differently to reduce the inflammation. Remicade is a TNF inhibitor and has been around a long time. I just had my annual colonoscopy and there has been mucosal healing and improvement!!! So don’t give up!!! There have also been several more drugs (orals) approved in the last 3 months, so for the first time in a long time, I am hopeful!!! Don’t be afraid to try Remicade - it changed my life!!! I wish you the very best!!!! ❤️
Thank you so much for your reply and understanding! Happy to hear that the Remicade is working for you and that you did not need to go through with the proctocolectomy. It is very helpful to hear that biologics have different mechanisms of action. I questioned whether Remicade would possibly help when the Entyvio was not effective. There does seem to be much progress with the oral meds, however just starting to research this too. Thanks again for your response... I do feel more hopeful and confident in giving the Remicade a try! Wishing you the best too!!
My husband had UC and ended up only being able to take prednisone. He started getting infusions of Entyvio in March of 2016. July of 2017 he passed away from T-Cell Lymphoma which Entyvio had caused.
I’m so sorry! Please accept my condolences on your loss. UC is a tough disease and some of the treatments are tougher. Fast forward… for me, after using Entyvio, Stelara and Remicade, I am finally in remission on very high doses of Remicade every 5 weeks. My GI doctor does therapeutic drug monitoring every 3 months, in addition to many other serum tests, to make sure the levels are appropriate and working and not adversely affecting other things. I understand that all of these drugs have risks and try to focus on benefits vs risks and on quality of life. I am so very sorry for your loss and I hope and pray one of these medical scientists will ultimately come up with a way to alter the gut flora so IBD can be cured. All these drugs do is control the inflammation; they need to STOP it!! 🙏🏻
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?
I 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!