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Has anyone with UC stopped responding to Entyvio?
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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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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1 ReactionDval. 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.
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.
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..
Chili and peanut butter? The worst food for colitis!
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!!
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.
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!!!
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?
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?