Has anyone with UC stopped responding to Entyvio?

Thanks so much for checking in.... I am cautiously optimistic, but know how quickly this can go south. I have tapered down to 15 mg daily prednisone; plan to go to 10 today or tomorrow. The Stelara most likely is working, as there is much less blood, formed stool and frequency is 2-3 times daily (big change from 16+). I am watching, recording and plan to see another colorectal surgeon, to be prepared. The fact that I stopped responding to Entyvio makes it more likely that I will stop responding to other biologics. I am giving the Stelara a chance, and my understanding is that if I stop responding to that, Remicade would be next. If the side effects are too severe, I know the surgery would be the next step. These biologics have different mechanisms of action, but all have dangerous side effects! The thought of not taking biologics is appealing. I hate that I am immuno-compromised, especially in this Covid world. This is a horrible disease and I know in my heart that I have done everything possible to treat it. The plant based diet certainly helps, but when it’s this severe, there’s nothing more you can do.... I have come to terms with the severity of this chronic illness and also that the surgery would represent freedom. It would free me from the drugs and their side effects and from being terrified to be away from a bathroom. I appreciate your willingness to share your experience! I hope you’re well and enjoying your life! Sometimes we have to bite the bullet and make tough decisions that are right for us because we’re living this hell.... Thank you again; I will keep you posted!

@tighecrea Welcome to Mayo Clinic Connect, a place to give and get support.

My condolences on the passing of your father. Due to this unfortunate situation, It sounds like you have information to share.

May I ask if Entyvio is the reason you joined Connect?

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....

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.

Has anyone one been on bentyl

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!

Entivyo worked for me for about a year and a half. I stopped so I could get my two Pfizer Covid vaccines. When I went back on the Entivyo, it didn't seem to be working as well, and therefore the condition worsened day by day. Had to get a colonoscopy. Now on the Prednisone bridge. Some days are better than others. Depends on what I eat. Greatest fear is when the Prednisone ends. Don't want to take the other very dangerous biologics. I have arythmia and my mother had Cancer 3 times and succumbed to it. Apparently Entivyo is not a true success story.

I understand and I'm so sorry! I have UC (pancolitis) and had been in remission on Entyvio for 13 months. Last October, the day after my annual flu shot, I started to bleed. The past year has been HELL!! The flare just won't end!! I have been hospitalized 6 times, have tried and failed Stelara, have been on and off prednisone several times (60 mg daily, then the taper by 5 mg every week). I am currently on Remicade, which has improved things, but after the Covid vaccines, I ended up back in the hospital for several days!! Currently, I am on Remicade every 4 weeks and still on prednisone, and struggling to maintain 100 pounds. The only thing left for me is Zeljanx, and in order for me to take that, I must have a two dose shingles vaccination, because shingles is a side effect. I am so disgusted with this debilitating, horrible disease that has taken so much away from my family and me.... Right now, I am down to 15 mg prednisone daily and waiting for approval from Insurance for Xeljanx. I will be 64 next week, have always been very healthy, until UC - at the age of 60! I have also scheduled a proctocolectomy for next month in case things get worse or that I am unable to take the Xeljanx. This has been a roller coaster of hell and I cannot keep doing this.... I try to focus on benefits vs. risks with all these drugs, but I need some quality of life!! The drugs and biologics just target the inflammation; why can't they just alter the gut microbiota and cure this??????

Dval. I am so very sorry for your troubles. Yes, this is the very worst situation. I am 72 years old and have had UC since I was 18. I have always been on a restricted food list and as a result suffer from poor health. I don't eat fruit, veggies, dairy, or fried foods. I have been hospitalized several times when I was younger, but I have found that since I retired I am suffering a little less. The stress of a time clock and noise and activity seemed to increase symptoms. Do you find this to be so? I am hoping you get some relief shortly.

Yes, being retired does make some things easier, and there is less stress. I have only had UC for a little over 4 years and it has been hell. It became so severe so quickly and it came out of nowhere. I had always been healthy, never smoked, drank or ate badly. Always exercised and never needed Rx for anything! Just started passing blood in stool one day and losing weight rapidly... I had never even heard of UC when I was diagnosed. As far as diet, after much research, I decided to try a whole food, plant based diet and have been eating that way for almost 3 years. I never cared much for meat, so that was no sacrifice. Eliminating dairy was a little tough, but it is what it is. I don't eat processed foods or foods with crap like carageenan and other stabelizers. It seems to help the symptoms, but it certainly won't "cure" IBD like some people claim. This disease is a relentless bitch and I have done everything I can possibly do to manage the symptoms. As I said, I have scheduled the proctocolectomy tentatively, but I am willing to try the one drug I have left to try. I need to know that I have exhausted any and all options before I have my colon and rectum removed because there is no going back from that... If that is my only option, then so be it. There has been tremendous progress in treating UC and Crohn's, but they need to focus on changing the gut flora, not just reducing the inflammation. The drugs they use to treat IDB have different mechanisms of action that target inflammation differently, but the inflammation seems to find different pathways. I have failed mesalamine and 2 biologics (Entyvio and Stelara), and I'm not doing too well on the TNF inhibitor (Remicade) so I'm ready for the next step. Hardest part is being on this roller coaster of hell because there are days I feel that I just can't do this again...Thank you!! I'm sorry you're in this situation, too, and I wish you the very best!!