Has anyone with UC stopped responding to Entyvio?

Posted by dval @dval, Jan 8, 2021

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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@lafleur

I hear your story and share a similar situation. I am 61 and have always been very healthy and active. About 18 months ago, I ended up in the hospital with pancolitis and since then diagnosed with Ulcerative Colitis. I believe what triggered my UC is a C diff infection, which I ended up having twice during this time. Since then it seems that my immune system has been in overdrive and does not want to shut off. My calprotectin levels have been very high (latest was 1586 and when I was in the hospital it was 2,635).

I started out on the Meslamine last year which only made me feel worse. My doctor placed me on Entyvio infusions this past February, but this is not working for me and she is now recommending Remicade. In between, the only thing that has helped with my symptoms is the Prednisone and we both know that this is only a temporary bridge. I'm really questioning whether another biologic is going to make a difference and truly understand the frustration of how long it takes to go through the process and once again, have months pass by with feeling like you are missing out on life. I do wonder if it makes sense to look at the gut microbiota and possibly surgery if there is too much damage. I am just starting to try the Microbiome Labs products for repairing the gut (a nurse who has Crohn's recommended it and swears by it). I will keep you posted if you are interested. I have always been conscientious about nutrition but like you, I am less than 100 pounds and it's been difficult to keep the weight on for the past year.

As a side note, I do feel that I am predestined for autoimmune. I had graves disease 30 years ago, but after having my thyroid dissolved 30 years ago and taking Synthroid since, I have had zero issues.

My feeling based on keeping track of my own body is that something triggers my immune system to go into overdrive and then for some reason, it does not want to shut off once the organ is damaged. First my thyroid and now this time, it was an infection in my gut that created havoc in my colon. This is totally my own opinion based on what I have experienced, but wonder if others feel the same way.

Would be interested to hear more about your experience and the direction that you are taking with your treatment options.

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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!!!! ❤️

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@dval

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!!!! ❤️

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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!!

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@dval

Thank you. My ulcerative colitis was well controlled for 13 months, while using Entyvio. A colonoscopy showed clinical remission and even improvement in the mucosal lining of the large intestine. One day after a flu shot, I started to bleed and flare. It became worse quickly, and GI doc prescribed steroidal suppositories, which did nothing, oral budesonide, which didn’t help and finally oral prednisone, which worked quickly to stop the bleeding. He also tried “dose intensification” increasing the Entyvio infusions to every 4 weeks instead of 8. Within 3 months I started to bleed again, have a lot of pain, and the symptoms worsened by the day, reaching 10 horrible bloody diarrheas within a day and waking up in the middle of the night with same! So, doctor ordered 8 labs (3 serum and 5 stool). Still waiting for stool results, but in the meantime, he prescribed oral prednisone again (he hates prescribing it as much as I hate taking it). I was fulminant at my worst and in fear of a colectomy. So today at 4 pm (telemed) we are discussing other options - He suggested Remicade, Humira or Stelara. I demanded that he help me choose, as I need an educated and clinical opinion. Biologics scare me; they all have side effects, but the UC symptoms are far worse to live with. So I am hoping that whatever we choose will be approved by my insurance (another obstacle) but I am hoping for the best. This disease is frustrating and unpredictable!! It came out of nowhere at the age of 60 and for 3 years, I have lived with it and have done all I can to control it. I had always been healthy and ate a good healthy diet, never smoked, always very active. So for almost 2 years, I have followed a plant based diet (lots of clinical evidence that it helps with UC) and I was doing well for 13 months. GI doc also checked Entyvio trough levels when I first started flaring in October and I had antibodies, so I must have just stopped responding to the Entyvio, which I understand is not uncommon. I’m not thrilled that I have to start a new drug, loading doses and all the other stuff, but what choice do I have? I know the Remicade is a LONG infusion and that the Humira and Stelara are subcutaneous after the first infusion, but my biggest concern is safety. They all have side effects, but I’d like to get some quality of life back.... I am hoping he can help me with the decision and best choice for me. Thanks again!!

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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.

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@dlunsford

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.

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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!! 🙏🏻

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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?

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@limur1257

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?

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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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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!

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@JustinMcClanahan

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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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!

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@dval

Has anyone had good or not so good results with Stelara for UC? I had been in remission for 13 months with Entyvio and stopped responding. Dr. tried dose intensification, increasing Entyvio dosing to every 4 weeks, but it didn’t work. So, back on oral prednisone, bleeding horribly for weeks, waiting to start Stelara on February 2nd. I am terrified and was wondering if anyone can share their experience. Remicade was also recommended. Any insight would be greatly appreciated!!!

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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?

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@dmw653

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?

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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.

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