Is this true? My doctor says Entyvio wouldn't work since I failed Remicade

My first post. Such an amazing forum, I've learned a lot in a short time from you all. Thank you!

I've been on Remicade for over a year, currently on double the normal dose every 4 weeks, and it's gotten me out of a severe flare so I can live pretty normally but unfortunately my colon still looks horrible on a flex sig. I would like to try Entyvio before getting surgery, but my doctor seems to think that since I've failed Humira and Remicade, Entyvio wouldn't work for me. But she hasn't been able to explain why. I see her next week and would love to have some ammo from you folks - i've seen a couple of posts on here from people who did improve on Entyvio after failing Remicade. Has anyone else been told this about Entyvio and do you understand the reason why?

Also, I am worried that I may have Crohn's so have asked her to test me for it, but she says the test is like throwing a coin, only 50% accurate, which is hard for me to believe. Is this true? Has anyone here had the test and was it worth doing? It seems like they should do this for everyone before they remove their colon, but I also have had sores inside my mouth for decades that never go away, and I wonder if that is a sign of Crohns. My dentist has no idea what they are and my GI has never offered to look.

Failing Remicade might make a person a *little* more likely to fail Entyvio, but they are very different methods of action. And it's not at all uncommon for a person to fail anti-TNFs but to respond to Entyvio.

How did you ask your doctor to test you for Crohn's? With blood tests? With biopsies? With small bowel CT scans? You really would need all of the above - and even then, it's not always clear cut.

It's a general clinical recommendation that after failing two biologics for UC that surgery becomes more likely for us. These days, I would rephrase it to say "failed two biologics with different mechanisms of action" and wouldn't at all consider a surgery until meeting that. The two biologics you failed are sister-medications that have the same, exact mechanism of action. Remicade and humira are both tnf-alpha-blockers for their mechanism of action. Tnf-alpha-blockers interfere with the immune system's ability to signal an attack. Your immune system says "hey send an attack over here" by sending tnf-alpha messenger proteins. Remicade/humira block those messages in transit, halting or at least muffling the battle cry. However, tnf-alpha isn't the only way to rally for an attack, our immune system can get arround tnf-alpha blockers in some cases with other messenger proteins that humia/remicade can't touch.

Entyvio is a madcam-1, anti-adhesion in it's mechanism of action. Entyvio interferes with your immune system's abilty to complete an attack. WBCs are sent into the circulatory system to attack, normally they adhere to the small blood vessel walls within the intestine, and pass into tissue to attack and cause inflammation. Entyvio blocks that adhesion and traps the WBC within the circulatory system. Unable to follow through on an attack, we heal.

Stelara is a different mechanism of action that all of those mentioned above, under clinical trial for UC and available off-label.

Xeljanz is a different mechanism of sction than all of those mentioned above, under clinical trial for UC and available off-label.

There's combination therapy of using a biologic plus immunomodulator (imuran/6mp) plus mesalamine.

You can try medications until you run out. Provided that your quality of life isn't horrible. Some do. Others have a surgery much earlier.

Tell your gasteroenterologist that you want to try a biologic with a different mechanism of action. For some, doing this works. No guarantees in life, but it's something to try if your QOL isn't horrible and you have some fight left in you!

Thank you all so much! You've given me a lot of ammunition to take with me to see my GI tomorrow. I've been wanting to get a second opinion but not sure how to find someone with a better reputation than her. She only sees people on biologics. She already had me see her mentor at UCSF last year who runs clinical trials, but I just felt like a specimen or teaching tool for her associate to learn from. The mentor was hinting to me after I failed Humira and hadn't even tried Remicade that I was heading for surgery. My GI also had me see a surgeon at UCSF last year. Which from what you all are saying, sounds like it was way too soon. I've never been hospitalized or had to get a blood transfusion (but I was close to needing one). I don't know if their pessimism has anything to do with the fact that when I was really bad last year, my ankles and big toe and neck all blew up with really painful inflammation to the point where I couldn't walk or move my head. My CR-P was literally off the charts, could not be quantified it was so high, this was before starting Remicade. And all symptoms started after having a total hip replacement. Before the THR, I was under control since 1999 with just balsalazide. Rheumatologist ruled out RA. So I'm wondering if Entyvio is something she doesn't want to use because of my joint symptoms?

I don't know why he would say that...
Humira/remicade attacks a different inflammatory causing target than entyvio. Has she tried putting you on antirejection meds with the biologics?

"She has told me that once you come off a biologic, you can never take it again because it won't work - is that true? " There's increased risk of forming antibodies to remicade, once stopping it. Not guaranteed to happen by any means, but can happen to some. For that reason, the general clinical recommendation is to not stop a biologic for as long as it works for you.

"I'll still have the same immune system, so why wouldn't it just switch from attacking my colon to attacking my joints even more aggressively? Or start attacking my small intestine? " Some of us have extra-intestinal manifestations (joint inflammation, eye inflammation, among other things). They can get better as our UC improves and worse when our UC flares in some cases. Having a colectomy doesn't eliminate our extra-intestinal manifestations. You'd still have joint issues after a surgery. I don't think it is common for our immune system to attack something else just because we had a colectomy.

Due you have RA as a second auto-immune condition? Or is it one of the following in the PDF:

www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf

Thank you, ipoop and Pam!
Pam, you're the third person posting here to let me know that Entyvio can work after failing Remicade, so thanks so much for that and I'm really happy it's working for your husband. My doctor is going to allow me to start Entyvio after I get one more flex sig to see how I look after being on the every four weeks schedule of Remicade. My doctor reiterated yesterday that it's very unusual for Entyvio to work if someone has failed Remicade because Entyvio is a "weaker" medicine and failing Remicade indicates a very aggressive form of the disease. She points to researchers at UCSF believing the same thing, so it's very frustrating to have a doctor who has such pessimism about a treatment that has clearly worked for some people!

Thanks, ipoop, for clarifying about stopping Remicade. And I really appreciated the link about arthritis. I saw a rheumatologist last year when I developed peripheral arthritis, and he did a couple of blood tests that made him think i do not have RA. I seem to have axial and possibly A.Sp. and I have been wanting to get an MRI to see for sure what's going on with my spine, but it doesn't seem like there's much else they can do if I do have it, as Remicade was supposed to help and my spine has gotten stiffer while I've been on it. I'm a Pilates instructor, so my flexibility is essential. I've already had one hip replacement and was just told last week that I will have to get the other one replaced in the next few years. Hips weren't mentioned on the list for peripheral arthritis, but do you think hips should be included?

Is eye inflammation the same as dry eye syndrome? I do have that. So you're saying that wouldn't resolve after a colectomy?

I asked her again about Crohn's, and she is going to have me get an MRI of my small intestine to check for inflammation there. Unfortunately, she also said some people have Crohn's that ONLY impacts the colon, so the MRI still wouldn't rule out the possibility that I have Crohn's. She said she's 85% certain I have UC based on the pattern of inflammation in the colon (I am left-sided only) and the terminal ileum was normal on my last colonoscopy in 1/2015. She also offered me the Prometheus blood test for Crohn's but I didn't take her offer because it's only 50% accurate. Right decision?