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!!

@ciaran

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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Chili and peanut butter? The worst food for colitis!

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@ciaran

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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Different foods affect people differently. I know that from my communications with numerous UC patients from a couple support groups I am on. Even when I have been hospitalized, on just IV fluids and/or liquid diets, the bleeding continued, relentlessly. The only thing that stopped the bleeding over the years has been medication (biologics and/or prednisone). When I was in remission on Entyvio for 13 months, I followed a strict plant based diet and didn't see a drop of blood in all that time. I actually felt "normal" and didn't even think about UC. The Crohn's and Colitis Foundation has done extensive research and has published their data on IBD and diet. They recommend and have much clinical evidence on IBD and recommend either a plant based or Mediterranean diet. I'm glad you found what works for you. I am hoping Xeljanx will be my magic pill. If not, I will have the proctocolectomy. I need to get some quality of life back. This disease has taken so much away from my family and me and I resent it! Good luck to you and better health!!

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@dval

Different foods affect people differently. I know that from my communications with numerous UC patients from a couple support groups I am on. Even when I have been hospitalized, on just IV fluids and/or liquid diets, the bleeding continued, relentlessly. The only thing that stopped the bleeding over the years has been medication (biologics and/or prednisone). When I was in remission on Entyvio for 13 months, I followed a strict plant based diet and didn't see a drop of blood in all that time. I actually felt "normal" and didn't even think about UC. The Crohn's and Colitis Foundation has done extensive research and has published their data on IBD and diet. They recommend and have much clinical evidence on IBD and recommend either a plant based or Mediterranean diet. I'm glad you found what works for you. I am hoping Xeljanx will be my magic pill. If not, I will have the proctocolectomy. I need to get some quality of life back. This disease has taken so much away from my family and me and I resent it! Good luck to you and better health!!

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Dval. My sincere wish for you is that you get better and stop suffering. I was only trying to help. Yes, whatever works for you is what you must do. I hope you are able to find a medication and/or procedure that will give you your quality of life back. Take care and get well soon.

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@ciaran

Dval. My sincere wish for you is that you get better and stop suffering. I was only trying to help. Yes, whatever works for you is what you must do. I hope you are able to find a medication and/or procedure that will give you your quality of life back. Take care and get well soon.

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Thank you!! And I know your intent was just trying to help!!! This is a relentless disease that affects us all differently but definitely impacts our lives!! I was horrified today to get my calprotectin lab result – it was 1280!!!! It has never been so high, and that's while on Remicade. I believe the proctocolectomy may be my only option in controlling this monster… 🙁 You take care, too, and thank you!!!

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HELP! We’ve been in lockdown for almost 2 yrs now & now I feel like I’ve just been told to do this again for another year.

2018 diagnosed w/ UC – I was put on Mesalamine (enema) & it worked for about 4 months or so. Next, I was put on Mercaptopurine (6MP) for 9 months along with prednisone bridge until it hopefully worked – after 9 months of nothing but yo-yo of steroid highs & lows (never being able to go lower than 10 on steroids) I finally said uncle & went to Entyvio.

9/29/20 – WOW…..the light went out, everything stopped & my life was 100% back to normalcy! GO Entyvio. After my 1st infusion I was able to taper off steroids over the next month!

November 2020 – got flu shot! Still fine
March/April 2021 – COVID vaccine set of moderna – still fine!

June 2021- went on vacation. Early in the trip I did a HUGE NO NO (I know now!). I had some major headaches due to travel/jet lag & took Excedrin migraine. Again, I know this now! About 2 week into trio I started the beginnings of a flare. Dr put me on 40 steroids tapering by 5 every 2 weeks. I got down to 10 & started to have a little discomfort in the colon but not too much.

9/1/21-blood test to confirm I wasn’t creating antibodies to Entyvio – NOPE!

9/15/21- I was rushed to ER due to extremely low platelet counts (in the 20’s). Hematologist puts me on 40 steroids taper down by 5 ea week. Yeah, I was able to raise my platelets to 120 in about 1.5 months! They’ve ruled out IPT. Plus the discomfort was gone in colon. I got down to 5 steroids & a flare is starting again, so…..20 (am & pm) of steroids & Mesalamine (am/pm) – right now it’s keeping it @ bay. However, dr now has me on 6MP to see if I can lower my white cell count & still stay on Entyvio. Unfortunately this will take approx 6 months to see if it will work, all the while doing the steroid yo-yo. With the COVID pandemic still going on I cannot get a flu vaccine or the booster due to the steroids. Is this really the time to go so slow or should I be pushing for something else? I have a really good GI, but I feel so guilty looking for a 2nd opinion.

I’m 47 & have a pretty non stress life now (I was a wedding planner….enough stress for 10 lifetimes!). I don’t eat dairy, more of a Mediterranean diet & alcohol is 1x per week for ‘date night’.

Any tips, recommendations?

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@mauionmymind

HELP! We’ve been in lockdown for almost 2 yrs now & now I feel like I’ve just been told to do this again for another year.

2018 diagnosed w/ UC – I was put on Mesalamine (enema) & it worked for about 4 months or so. Next, I was put on Mercaptopurine (6MP) for 9 months along with prednisone bridge until it hopefully worked – after 9 months of nothing but yo-yo of steroid highs & lows (never being able to go lower than 10 on steroids) I finally said uncle & went to Entyvio.

9/29/20 – WOW…..the light went out, everything stopped & my life was 100% back to normalcy! GO Entyvio. After my 1st infusion I was able to taper off steroids over the next month!

November 2020 – got flu shot! Still fine
March/April 2021 – COVID vaccine set of moderna – still fine!

June 2021- went on vacation. Early in the trip I did a HUGE NO NO (I know now!). I had some major headaches due to travel/jet lag & took Excedrin migraine. Again, I know this now! About 2 week into trio I started the beginnings of a flare. Dr put me on 40 steroids tapering by 5 every 2 weeks. I got down to 10 & started to have a little discomfort in the colon but not too much.

9/1/21-blood test to confirm I wasn’t creating antibodies to Entyvio – NOPE!

9/15/21- I was rushed to ER due to extremely low platelet counts (in the 20’s). Hematologist puts me on 40 steroids taper down by 5 ea week. Yeah, I was able to raise my platelets to 120 in about 1.5 months! They’ve ruled out IPT. Plus the discomfort was gone in colon. I got down to 5 steroids & a flare is starting again, so…..20 (am & pm) of steroids & Mesalamine (am/pm) – right now it’s keeping it @ bay. However, dr now has me on 6MP to see if I can lower my white cell count & still stay on Entyvio. Unfortunately this will take approx 6 months to see if it will work, all the while doing the steroid yo-yo. With the COVID pandemic still going on I cannot get a flu vaccine or the booster due to the steroids. Is this really the time to go so slow or should I be pushing for something else? I have a really good GI, but I feel so guilty looking for a 2nd opinion.

I’m 47 & have a pretty non stress life now (I was a wedding planner….enough stress for 10 lifetimes!). I don’t eat dairy, more of a Mediterranean diet & alcohol is 1x per week for ‘date night’.

Any tips, recommendations?

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Hi @mauionmymind, welcome. I moved your post to this existing discussion about ulcerative colitis and Entyvio called "Has anyone with UC stopped responding to Entyvio?" I did this so you can connect with fellow members like @dval @ciaran @magmil84 @msgtrebholtz and others.

You ask "Is this really the time to go slow? … I feel guilty looking for a 2nd opinion." It sounds like you have confidence in your GI specialist. Before going the second opinion route, might you ask him/her to explain why they feel it is better to go slow and share your wish to attack things more aggressively if possible?

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@colleenyoung

Hi @mauionmymind, welcome. I moved your post to this existing discussion about ulcerative colitis and Entyvio called "Has anyone with UC stopped responding to Entyvio?" I did this so you can connect with fellow members like @dval @ciaran @magmil84 @msgtrebholtz and others.

You ask "Is this really the time to go slow? … I feel guilty looking for a 2nd opinion." It sounds like you have confidence in your GI specialist. Before going the second opinion route, might you ask him/her to explain why they feel it is better to go slow and share your wish to attack things more aggressively if possible?

Jump to this post

Of all the drugs I was put on (all that you list plus more) none worked except Entyvio , in fact I had bad reactions to most.

Entyvio worked well for about 6 months then tapered off and started the worst flare I ever had.

So what's my advice? In my experience when something didn't work or stopped working I said done, next! Only you can decide when that happens.

Another suggestion I have is Never, EVER think a second opinion is wrong or will hurt someones feelings. It's your body. Each time I got a second opinion I got the answers and information I needed to make an informed decision on my next course of treatment.

For me the battle was lost so I opted for a total proctocolectomy, which was absolutely the best medical decision I have ever made. I got my life back and no drugs. It wasn't all rainbows and unicorns, but looking back at where I was in the summer of 17 to now, I pick now.

Please ask if you have questions. I'll go back through my records and help you with anything I can.

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@colleenyoung

Hi @mauionmymind, welcome. I moved your post to this existing discussion about ulcerative colitis and Entyvio called "Has anyone with UC stopped responding to Entyvio?" I did this so you can connect with fellow members like @dval @ciaran @magmil84 @msgtrebholtz and others.

You ask "Is this really the time to go slow? … I feel guilty looking for a 2nd opinion." It sounds like you have confidence in your GI specialist. Before going the second opinion route, might you ask him/her to explain why they feel it is better to go slow and share your wish to attack things more aggressively if possible?

Jump to this post

I never responded to it. I have been on Humara, Entyvio, Stelara haven't responded to any of them.

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Entyvio worked Gor years for my uc until it stopped working in early 2021. I have been on 4 Prednisone tapers while continuing mesalamine, but every time the taper reached about 15 mg, my symptoms increased again. After a long process to gain insurance approval I began Humira about 6 weeks ago. I have seen steady improvement after about the third week.

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@jeb46

Entyvio worked Gor years for my uc until it stopped working in early 2021. I have been on 4 Prednisone tapers while continuing mesalamine, but every time the taper reached about 15 mg, my symptoms increased again. After a long process to gain insurance approval I began Humira about 6 weeks ago. I have seen steady improvement after about the third week.

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I’m currently in your shoes. I was (still am) on Entyvio, worked perfectly for 10 months then hit a flare & I can’t seem to get off prednisone. Dr isn’t quite ready to move me to Humira, so he’s got me on mercapuratine to see if both can work….but it takes up to 6 months for it to work. I’m worried because I can’t get my COVID booster or flu shot as long as I’m on the prednisone yo-yo. Are you having any side effects from Humira? Is it an infusion, shot it pill?

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@msgtrebholtz

Of all the drugs I was put on (all that you list plus more) none worked except Entyvio , in fact I had bad reactions to most.

Entyvio worked well for about 6 months then tapered off and started the worst flare I ever had.

So what's my advice? In my experience when something didn't work or stopped working I said done, next! Only you can decide when that happens.

Another suggestion I have is Never, EVER think a second opinion is wrong or will hurt someones feelings. It's your body. Each time I got a second opinion I got the answers and information I needed to make an informed decision on my next course of treatment.

For me the battle was lost so I opted for a total proctocolectomy, which was absolutely the best medical decision I have ever made. I got my life back and no drugs. It wasn't all rainbows and unicorns, but looking back at where I was in the summer of 17 to now, I pick now.

Please ask if you have questions. I'll go back through my records and help you with anything I can.

Jump to this post

TY so much @msgtrebholtz for your encouragement. May I ask more info about your proctocolectomy? With an autoimmune disease, once the colon is removed, will it now just start attacking something else? I’ve had the ‘last resort’ in my mind from the beginning & the more I hear about it the more it doesn’t sound SO bad. I will say I’m truly scared about being on 6MP (if it even does work) for long term. I’ve been on prednisone for an 11 month yo-yo & back on another yo-yo since mid June (+ possibly another 5 months). I see GI for “next step” on Monday.

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@mauionmymind

TY so much @msgtrebholtz for your encouragement. May I ask more info about your proctocolectomy? With an autoimmune disease, once the colon is removed, will it now just start attacking something else? I’ve had the ‘last resort’ in my mind from the beginning & the more I hear about it the more it doesn’t sound SO bad. I will say I’m truly scared about being on 6MP (if it even does work) for long term. I’ve been on prednisone for an 11 month yo-yo & back on another yo-yo since mid June (+ possibly another 5 months). I see GI for “next step” on Monday.

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I actually don't recall what 6MP did to me. It seemed whatever I took did something, either physically or emotionally or both. I can tell you none of them did anything good. And on top of that I would always have a nasty flare after coming off them.

The only med that worked was pred, but I couldn't deal with the weight gain.

I have never heard of a migrating auto immune disease, but anything can happen!! LOL!

As for me the damage of 8 years of UC and the failure of every treatment took it's toll and led me to surgery.

I sought advice from the Centracare Chief of GI. He said surgery was my best bet, but he referred me to another Gastroenterologist whom I didn't get along with.

So my third second opinion was from an awesome surgeon who did my last scope. She said there wasn't much to talk about because there wasn't much colon left in places and because of my anal and rectal damage there was about a 1% chance that a J loop would work. Her words were "your best bet is a total with a Ken butt"!! So that's a complete removal of colon, anus and rectum with a permanent ileostomy.

After surgery is when all the fun begins. I'll tell you about it if you like. I will tell you it's not the best experience I've ever had, but the result made it worth it.

I went from living in the bathroom (almost literally) to working full time, working out at least 4 times a week and I run almost daily. My goal is a 1/2 marathon, which I look to reach in Rochester, MN at the Med City marathon next Memorial day weekend! It makes me feel good that my "victory lap" will take me right in front of the Mayo Clinic!! Doesn't get any better than that!

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