Has anyone with UC stopped responding to Entyvio?

I went through Humira, Entyvio (every mo) and Stelara (every month) and failed on each. Biologics did not work for me.

I finally got good results with Rinvoq. That is the latest in the line of Xeljanz, Zeposia and then Rinvoq. Rinvoq does particularly well with people (like me) who already failed on other meds. I had mucosal healing and a major reduction in inflammation. You might want to ask about Rinvoq.

(Unfortunately, although it helped with UC, it did not prevent conversion of high dysplasia into colon cancer, so I then chose a full procto-colectomy with end ileostomy.)

@hardingv
I’m so sorry to hear that you developed cancer. I’m going to ask my GI about Rinvoq. Maybe that would be a better fit for me.
Can you elaborate a bit on your journey. When did the high grade dysplasia show up? How long had you been on meds ?

The looong story:

I was diagnosed with ulcerative colitis (pancolitis) in Dec 2008. Although I took prednisone when I had flares, until 2020 I used only mesalamine the rest of the time, refusing the advice that I should try a TNF blocker like Humira and/or azathioprine.

I had developed severe inflammation in my colon, so they generally did not remove small polyps. However in 2016 they removed a small area and marked for observation. In 2019 a dr tried to remove a much larger area during a colonoscopy rather than waiting for pathology because he thought it was suspicious. Turns out it was just inflammation, and his botched job caused so much bleeding that I had to stay in the hospital overnight.

Up to this point I continued to have severe UC with severe inflammation but nothing was precancerous.

However, I knew the chance of cancer was increasing, and if anything, UC was getting worse. So in 1/20 I agreed to start Humira and azathioprine (Imuran). It didn't do any good and when they dropped the mesalamine I started a major flare.

I also developed neuropathy in my feet and lower legs (attributed to Humira) after a few weeks, and in 4/20 I had a cerebral stroke (some drs said Humira and others inflammation was the cause). I stopped Humira then.

A few months later they tried Entyvio. Major flare continued and no improvement despite increasing from every 2 months to once a month.

After a while they switched to Stelara. Only a very minor improvement even after going to once a month.

Early on they considered Xeljanz, but it was too soon after the stroke. Around the time of Stelara my dr mentioned Zeposia, but felt there were better alternatives.

After antibiotics for hip surgery triggered a BIG c-diff flare in 2022, my GI dr at the time did a colonoscopy in 8/22. She found severe UC/inflammation so decided it was time to try something else. She also found an area with mild dysplasia.

She briefly considered Syrizi, (which was approved for Crohn's but off label for UC at the time), but decided on Rinvoq.

If I had stayed, she would have given Rinvoq a couple of months to reduce inflammation and then gone back in to remove the dysplasia around Nov 2022.

However, I returned home and my home GI dr waited until Jan 2023 to do another colonoscopy. That colonoscopy found significant improvement in the UC with sufficient mucosal healing that it was classified as mild UC/mild inflammation. But the area identified in 8/23 was now categorized as high dysplasia (precancerous).

After consultation with my GI dr, a complex polyps specialist, and a colorectal surgeon, we agreed to try an endoscopic mucosal resection (EMR) to remove the precancerous area.

The EMR was successful, but the pathology showed a small area where it had started to convert to cancer. Although they thought they probably got it all and I had an option to wait and just do increased monitoring, I called it quits and elected a total proctocolectomy with end ileostomy.

Given the cancer issue they took the fat surrounding the colon along with everything else so they could test over 70 lymph nodes. I am happy to say they found nothing and saw no need for radiation or chemotherapy.

At several points it was suggested I consider a colectomy as an option, and I even consulted with the colorectal surgeon in 2021 after Entyvio failed, but I adamantly refused and kept trying to find a successful treatment .However, I have no regrets about my final decision.

Long story short: In Rinvoq I finally found something that worked for my UC. But I guess my colon was too damaged by then and it did nothing to arrest the development of cancer.

I hope you can find your solution, and I do recommend asking about Rinvoq.

The looong story:

I was diagnosed with ulcerative colitis (pancolitis) in Dec 2008. Although I took prednisone when I had flares, until 2020 I used only mesalamine the rest of the time, refusing the advice that I should try a TNF blocker like Humira and/or azathioprine.

I had developed severe inflammation in my colon, so they generally did not remove small polyps. However in 2016 they removed a small area and marked for observation. In 2019 a dr tried to remove a much larger area during a colonoscopy rather than waiting for pathology because he thought it was suspicious. Turns out it was just inflammation, and his botched job caused so much bleeding that I had to stay in the hospital overnight.

Up to this point I continued to have severe UC with severe inflammation but nothing was precancerous.

However, I knew the chance of cancer was increasing, and if anything, UC was getting worse. So in 1/20 I agreed to start Humira and azathioprine (Imuran). It didn't do any good and when they dropped the mesalamine I started a major flare.

I also developed neuropathy in my feet and lower legs (attributed to Humira) after a few weeks, and in 4/20 I had a cerebral stroke (some drs said Humira and others inflammation was the cause). I stopped Humira then.

A few months later they tried Entyvio. Major flare continued and no improvement despite increasing from every 2 months to once a month.

After a while they switched to Stelara. Only a very minor improvement even after going to once a month.

Early on they considered Xeljanz, but it was too soon after the stroke. Around the time of Stelara my dr mentioned Zeposia, but felt there were better alternatives.

After antibiotics for hip surgery triggered a BIG c-diff flare in 2022, my GI dr at the time did a colonoscopy in 8/22. She found severe UC/inflammation so decided it was time to try something else. She also found an area with mild dysplasia.

She briefly considered Syrizi, (which was approved for Crohn's but off label for UC at the time), but decided on Rinvoq.

If I had stayed, she would have given Rinvoq a couple of months to reduce inflammation and then gone back in to remove the dysplasia around Nov 2022.

However, I returned home and my home GI dr waited until Jan 2023 to do another colonoscopy. That colonoscopy found significant improvement in the UC with sufficient mucosal healing that it was classified as mild UC/mild inflammation. But the area identified in 8/23 was now categorized as high dysplasia (precancerous).

After consultation with my GI dr, a complex polyps specialist, and a colorectal surgeon, we agreed to try an endoscopic mucosal resection (EMR) to remove the precancerous area.

The EMR was successful, but the pathology showed a small area where it had started to convert to cancer. Although they thought they probably got it all and I had an option to wait and just do increased monitoring, I called it quits and elected a total proctocolectomy with end ileostomy.

Given the cancer issue they took the fat surrounding the colon along with everything else so they could test over 70 lymph nodes. I am happy to say they found nothing and saw no need for radiation or chemotherapy.

At several points it was suggested I consider a colectomy as an option, and I even consulted with the colorectal surgeon in 2021 after Entyvio failed, but I adamantly refused and kept trying to find a successful treatment .However, I have no regrets about my final decision.

Long story short: In Rinvoq I finally found something that worked for my UC. But I guess my colon was too damaged by then and it did nothing to arrest the development of cancer.

I hope you can find your solution, and I do recommend asking about Rinvoq.

@hardingv
Wow. You’ve gone through a lot. I have had IC for my entire adult life. I’ve done a multitude of drugs and it’s been managed fairly well, but never full remiasion. Remicaid was forced on me because I refused more prednisone and it didn’t work and caused a flare. I have been on Mesalamine since 2011 and it has been fairly good, more moderate inflammation. I went from a clear colonoscopy (still inflammation and active disease) in 2018 to an obstructing tumor in 2019. It was (and still is) recommended for me to get a colectomy, but I found a surgeon who was willing to try removing the tumor and resecting. That wasn’t without issues, and I developed lots of complications, and also couldn’t finish chemo. But I have been cancer free for 5 years and my UC is managed.
My UC only caused bleeding during a flare, and I’ve only experienced two flares since I was diagnosed with UC. I don’t have frequency, and feel really good. But, my GI wants complete remission and they are still pushing me to just get a colectomy. I’m against that and feel like I’m at a crossroads medically. I just don’t want to do something that drastic when I feel great and go to the bathroom once or twice a day.
I will ask about Rinvoq. I’m due for another scope in the fall, so we will see how I’m doing since we increased to monthly Entyvio

@lisag03
Another loong response. 😄

I expect if I was in your position I also would not be inclined to have a colectomy at this point.

Drs kept telling me "We treat to target," meaning they wanted to see remission in both clinical symptoms and endoscopic results. But I wouldn't start more advanced treatments like biologics until my clinical symptoms got worse.

Colectomy was added to the alternatives after Humira failed. And then when Entyvio failed and I ended up in the hospital a couple of times with severe dehydration, my GI dr was willing to continue trying drugs but noted that if I kept ending up in the hospital there would come a point where I would not have a choice.

So, at my request he gave me a referral to a colorectal surgeon for a consultation so I could be prepared in case I had to make a quick decision.
The CR surgeon was great. He patiently walked me through the basics of the alternative procedures, and when I had questions about life post-surgery, he gave me a referral for consultation with 2 WOCNs.

I guess they don't normally talk to patients until after they have decided on surgery, but the surgeon thought it was a good idea to explore in advance so I could make a quick informed decision if necessary.

I learned that a colectomy clearly was not Valhalla. My husband kept saying everybody LOVED their bags and it was the best decision they ever made. Well, the reality is he didn't know what he was talking about. There are a number of ongoing potential issues, and there are different types of ostomies (starting with colostomies v ileostomies), each with their own issues.

So, in 2021 I decided it was not something I wanted to do, and the surgeon agreed it was a reasonable decision.

But in 2023 I made the decision to go with the colectomy. It was not an improvement in quality of life since by then I had only 2 or 3 BMs per day on Rinvoq. With an ileostomy I empty the bag more like 8 - 10 times a day, though unlike UC I can control when I go. However, when I developed cancer it was the right choice for me.

My colon was basically shot by then. They tried to do the procedure laproscopicaly, but had to switch to a full mid-line cut mid-procedure. So even if they did get all of the identified cancer in the EMR, other precancerous spots were already developing, and I was probably looking at additional cancer in the short term.

If your dr is receptive to arranging an entirely informational consultation with a colorectal surgeon I would recommend it.

In the meantime I hope your dr will consider Rinvoq.

Good luck!

@lisag03
Another loong response. 😄

I expect if I was in your position I also would not be inclined to have a colectomy at this point.

Drs kept telling me "We treat to target," meaning they wanted to see remission in both clinical symptoms and endoscopic results. But I wouldn't start more advanced treatments like biologics until my clinical symptoms got worse.

Colectomy was added to the alternatives after Humira failed. And then when Entyvio failed and I ended up in the hospital a couple of times with severe dehydration, my GI dr was willing to continue trying drugs but noted that if I kept ending up in the hospital there would come a point where I would not have a choice.

So, at my request he gave me a referral to a colorectal surgeon for a consultation so I could be prepared in case I had to make a quick decision.
The CR surgeon was great. He patiently walked me through the basics of the alternative procedures, and when I had questions about life post-surgery, he gave me a referral for consultation with 2 WOCNs.

I guess they don't normally talk to patients until after they have decided on surgery, but the surgeon thought it was a good idea to explore in advance so I could make a quick informed decision if necessary.

I learned that a colectomy clearly was not Valhalla. My husband kept saying everybody LOVED their bags and it was the best decision they ever made. Well, the reality is he didn't know what he was talking about. There are a number of ongoing potential issues, and there are different types of ostomies (starting with colostomies v ileostomies), each with their own issues.

So, in 2021 I decided it was not something I wanted to do, and the surgeon agreed it was a reasonable decision.

But in 2023 I made the decision to go with the colectomy. It was not an improvement in quality of life since by then I had only 2 or 3 BMs per day on Rinvoq. With an ileostomy I empty the bag more like 8 - 10 times a day, though unlike UC I can control when I go. However, when I developed cancer it was the right choice for me.

My colon was basically shot by then. They tried to do the procedure laproscopicaly, but had to switch to a full mid-line cut mid-procedure. So even if they did get all of the identified cancer in the EMR, other precancerous spots were already developing, and I was probably looking at additional cancer in the short term.

If your dr is receptive to arranging an entirely informational consultation with a colorectal surgeon I would recommend it.

In the meantime I hope your dr will consider Rinvoq.

Good luck!