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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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.

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@ciaran

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.

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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??????

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@dval

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??????

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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.

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@ciaran

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.

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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!!

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@ciaran

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.

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Dval. You said you eat plant created food. Do you eat a lot of salad? I do not eat lots of meat either. Occasionally ground beef or plant based ground meat substitute. But salads and lots of plant based foods do cause loose stool. I do eat fish though. Sometimes the natural oils in certain fish cause terrible problems. I guess we kind of take it day by day.
I did say that I do not eat healthy foods. I find that if you are plagued with UC, you cannot follow a truly healthy diet. Stay away from juices also. Fruit, veggies, juices, absolutely no dairy, and by the way, almond milk, rice milk, etc if taken more than 2 ounces, will also cause problems. It's not just the ingredients.. it's the consistency. I have been managing this since age 18. My mom had it, my brother had most of his colon removed, and one niece has Chrohns. I eat lots of bread, plain rice, potatoes, etc. Like I said, not so healthy, but it allows me some days where I can actually go out of the house.

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Dval. I wish you good luck with the new medicine and hope you don't need any procedure. I hope you feel better soon and are able to get your life back.

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@ciaran

Dval. You said you eat plant created food. Do you eat a lot of salad? I do not eat lots of meat either. Occasionally ground beef or plant based ground meat substitute. But salads and lots of plant based foods do cause loose stool. I do eat fish though. Sometimes the natural oils in certain fish cause terrible problems. I guess we kind of take it day by day.
I did say that I do not eat healthy foods. I find that if you are plagued with UC, you cannot follow a truly healthy diet. Stay away from juices also. Fruit, veggies, juices, absolutely no dairy, and by the way, almond milk, rice milk, etc if taken more than 2 ounces, will also cause problems. It's not just the ingredients.. it's the consistency. I have been managing this since age 18. My mom had it, my brother had most of his colon removed, and one niece has Chrohns. I eat lots of bread, plain rice, potatoes, etc. Like I said, not so healthy, but it allows me some days where I can actually go out of the house.

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Yes, that is the goal – to be able to leave the house… I do eat salad, but mostly cooked fresh vegetables, beans, potatoes, pasta. I have some great recipes for vegetarian/vegan soups, chili and snack balls (peanut butter, oats and dates). I try to eat several small meals all day. It has been a challenge maintaining my weight. I have been under 100 pounds while flaring and can't seem to get to 105 on a good day. I do yoga and walk 3-5 miles a day because moving eases the pain. Sometimes being curled up in a ball hurts more than moving around. There have been days I have been too weak to walk through my house (like last week when I had bloody diarrhea 17 times in one day). This disease is relentless and the unpredictability is the worst! I don't know day to day what I will be able to do, and that's the most difficult.

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@ciaran

Dval. I wish you good luck with the new medicine and hope you don't need any procedure. I hope you feel better soon and are able to get your life back.

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Dval… all of those things you are eating are causing the bleeding, etc. No beans, veggies, salads, etc. I know because I have been sick since I was 18. Did all those things. For a few months try to totally avoid those foods. They are ruffage..

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