Has anyone with UC stopped responding to Entyvio?

Posted by dval @dval, Jan 8 9:17am

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!!

@msgtrebholtz

I know it hasn't been very long, but how are the new meds going?

Please let me know if there is anything else I can do for you. Keep your chin up!

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Well, the Stelara was a waste of time. It actually made the symptoms worse!! So now I’m back on oral prednisone (60 mg daily) and awaiting insurance authorization for Remicade. I have wasted 9 weeks of my life that I can’t get back…. Bloody diarrhea 14-18 times a day and all night. I am miserable and doing battle with my GI doc, as he wants me back in the hospital again to do the steroids via IV. I panicked because I can’t make the 30-40 minute trip without bathroom accidents and then you have to go through the ER and be in that hell 8-10 hours. WTF. I can’t take anymore! I actually called the colorectal surgeon we know and trust and will talk to him again next week. I don’t want anything fancy, just a basic ostomy. I’ve read there are too many issues with the J pouch and pouchitis and I just want this to be over. I can’t do this again. I have been through enough hell the past few years. I don’t know if I will make it to the time the Remicade is approved or if I even want to try it. I hear there’s a new oral drug on the market getting approved in a few weeks made by BMS. I have hope for a day or so and then I am so sick and tired and exhausted from being in the bathroom all day and night I just want this over. At what point did you know it was time to just have everything removed and how did you accept it and get through the surgery, the recovery? This disease has ruined my life and robbed my family of so much!!! It has changed who I am. I was an active, outgoing, productive human being and there are days I feel too useless to live. Yes, I have a therapist, but if you’re not living this hell, you just don’t get it….

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I feel your pain. I have Crohn’s disease and I’ve been suffering for so long I honestly can’t remember what being normal feels like anymore. I used Entyvio last year but my colon still needed to be removed, as well as my rectum and anus. My colostomy bag is supposed to be a lifesaver but I need to get back on a medication to prevent more damage and I was put on Imuran.

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Has anyone one been on bentyl

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@magmil84

I feel your pain. I have Crohn’s disease and I’ve been suffering for so long I honestly can’t remember what being normal feels like anymore. I used Entyvio last year but my colon still needed to be removed, as well as my rectum and anus. My colostomy bag is supposed to be a lifesaver but I need to get back on a medication to prevent more damage and I was put on Imuran.

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I'm so sorry! So many of us suffer and I hope and pray for a cure for IBD. The medications all have side effects and when the surgery is not enough, you're still dealing with the pain and the side effects of the meds. It's so frustrating to say the least, and quality of life is affected. I don't know what the answer is and I just keep hoping and trying to stay positive and calm, but when you're feeling like this, being positive or calm is difficult… I wish you peace and relief!

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