Entyvio - when should it start working

I agree with giving Entyvio a longer response time. I think it took me 5 infusions to get to pretty clear symptomatic remission. A colonoscopy around that time still showed microscopic colitis though, so there was still something going on. Just had my 14th infusion and I am doing really good. It's even getting difficult to remember all the agony of flaring and being on pred. I wish you my good luck with Entyvio!

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UC pancolitis DX March 2016, Partial Colectomy for diverticulitis Sept 2014
Apriso .375 g x 4/day, Canasa & Uceris foam as needed
Supplements: Zinc, L-glutamine, Probiotics: Reuteri pearls, VSL #3, Folic Acid, CoQ10, turmeric, boswellia, milk thistle, NAC, reservatol, colostrum, glycine
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)
IN REMISSION!

I guess it somewhat depends on your priorities. Living with inflammation for years can put you at risk for other issues, so that is always something to consider, and it can be alleviated by surgery. That aside, you would save money and probably live more predictably after surgery. For me, the urgency was always the worst symptom, even if i was only going a few times a day, not having time to get to the bathroom was by far the largest concern. If i pooped myself once a year, I would consider that WAY too often personally. If i had to wear diapers regularly, or even walk around with changes of clothes and undergarments, that wouldn't work for me either - unless there was no option of course! if UC impacted my career because of the unpredictability, or if it made me unable to fulfill obligations to my finances or my family, that would make me lean toward surgery. If treatment was taking up a considerable amount of my time and costing a lot of money, that's not a bad reason. If you don't like taking drugs or being dependent on doctors/drugs/insurance, that could be a reason. The thought of needing surgery at an advanced age really scared me too.... All of these, and probably a few more, were reasons I opted for surgery.

What's so great about living with a diseased colon forever? The difference between living with inflammation and without a colon are quite different in cost, time, accidents, predictability, overall health (but surgery nay-sayers would debate this based mostly on unfounded claims). Going 3x a day without any notice, and spending time on the toilet in pain many mornings, isn't a very desirable way to live your life, but if you think it is better than going 6x a day free of drugs, doctors, insurance, procedures, cancer risk, excuses, that is a choice only you can make. Many people feel that hanging on to a sick colon is better than going more times a day. If you are able to get in remission and it's easy enough to take drugs and you're only going to the doctor yearly, that's great, but I was going very often and spending tons, not getting any better... I wasn't going a ton either, but only because I didn't eat much - I could have gone on like that forever, but why? I eat whatever i want now. I eat better than I did the entire time I had UC - back then I was too scared to eat anything decent.

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Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

You're welcome to send me an email. Sleep was my biggest trepidation with surgery, and it can be frustrating to get up in the night, but many people get up to pee, and it takes the same amount of time to empty. If you do get up, you can get in and out in a moment. Another negative is that it's not as formed so you use more paper. Also sound. Often it can be loud, but you can usually prevent a lot of noise by not pushing too hard. Even with these issues, I am happy I broke out of the cycle. With UC I spent a lot of time on the toilet in the middle of the night, things were a mess, and there were crazy noises (pain, gas, smells...). For me, it didn't seem like the flare up was ever going to end either. If it felt temporary, it would have been another issue, but this went on for well over a year without a break. Since i was diagnosed, I spent more time flaring than I did in remission, a lot more. Dating with any chronic illness can be tough. Explaining what it is and why you do the things you do. I would probably be in a similar boat explaining why I go more often. My biggest issue was explaining why I didn't want to go out, and why i was always making excuses instead of going to event, why I wouldn't try to improve my career... You're newly diagnosed, I am sure something will work. Did you have stool tests? What other medications have you tried? Are you on imuran? Have you had the levels checked for that? I was always uncomfortable about immunsuppressants and being around too many people, or in hospital settings.

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Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

Post Edited (notsosicklygirl) : 1/8/2019 7:20:05 AM (GMT-7)

I know the feeling. I didn't even try xeljanz because it wasn't readily available when I had surgery. it was available by trial but it would have taken a long time to make it happen and you don't know if you're getting a placebo. It's all really scary. Surgery was the last thing I ever imagined for myself. I remember when I was diagnosed, I read about it and I was seriously shocked and scared, but all the doctors said it wouldn't happen to me. My initial diagnosis was proctitis! I had a lot of the same issues you have. The low levels with 6mp, adding allopurinol.. but for me, it reduced my WBC so drastically that I had to see a hematologist literally every week for a while. What a chore. it got to the point that they thought I had some kind of cancer and I was 5 seconds from a bone marrow biopsy, which I turned down thankfully because it ended up being the drugs causing the symptoms... it all came to a head a few years later though when I was on pred, remicade, mtx and who knows what else. I ended up with septic shock. I was stuck in the hospital for weeks on a breathing tube with pneumonia caused by the decreased immune system. I think all this made it easier to decide surgery was the best course of action for me. I never had a good response to the drugs. Don't let anyone rush you into surgery. I've heard people say surgery is "trading one set of issues for another", and in some ways that is true. You're never going to be back to your childhood, healthy colon self, but for me, I do not think i was going to get there anyway, and i was on so many drugs, and spend so much time and money trying to treat the condition, i spent more time trying to manage my condition than I did on nearly anything else in my life. Now I usually get up once in the night, i go a few times through the day, I have some scars, but at least I don't spend all day thinking about UC, treatments, the cost, which doctor appointment is coming up, what's next...

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Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

Wrapping your head around the prospect is always the hardest part. It's a tough hurdle to jump, and that initial acceptance is what you need to ponder. Our illness has a way of upending plans, and moving faster than we would have imagined. I had lots of nevers until they became necessary, never going to take immunomodulators (azathioprine/imuran/6mp) until I flared badly and prednisone-dependent, never going to take biologics until I was 8-months into the same flare and still pred-dependent. It's all nevers until it becomes your only choice forward. We all assume we're going to be mild cases, and never need any of that stuff. Some of us are dragged kicking and screaming to use all of those things as we have no other path forward. UC sucks.

Don't beat yourself up. Many of us go through a denial phase where we think we know what will help us, and we take the advice of uninformed people who doesn't even know what IBD is... I used to keep track of a list of supplements I tried, it was literally a page long. What a waste of money that was!! I also did so many crazy diets and none of them did anything. I neglected myself of good food for years thinking everything enjoyable caused my symptoms. From sugar, to beans, to dairy, so chocolate, to coffee, to meats, to alcohol... I avoided everything. I am thankful I am past all that.

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Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

Hi thanks a lot <3 The last few days have been worse again, as in I can't leave the house after dinner.... I spoke with my dr this afternoon and will probably start xeljanz next week (so it will overlap with Entyvio as i am afraid of armageddon if i stop everything - will have to stop aza and allopurinol regardless) But he wants to do a rectoscopy first. This is new to me. He said there is no preparation and it doesn't hurt, he just wants to look at the first few cm and take some biopsies.

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DX pancolitis 2015
Last remission 2016
(Moderately severe) left-sided colitis since 2018
Have tried nearly all drugs and quack options available
Currently working with Entyvio, not sure it is working with me.

Of course we all know everyone's bodily make up is different. After a 12 day scare in the hospital, 15 years ago with very severe UC, Imuran kept my symptoms under control. 8 years later, Imuran stopped working. I have been on double doses of Remicade, Humira and Entyvio. I was hopeful that each one would work, no such luck. Just left a clinical trial with filgotinib and no luck again. Just got put onto Xeljanz and am hopeful again. I hear stories of others in remission for 3, 4 or 5 years; I ask what is that? Anyway can always be worse.

Hi ipoop well i have been scratching my head why the doc would want to do a rectoscopy (as opposed to flex sig) Today i got my answer - they want to take a set of biopsies because they're doing research to characterise the type of inflammation in colitis patients and see if the inflammation type can be correlated with patient response to medication (in my case it will be xeljanz). The idea being that in future they can better predict which drugs will work for a patient so that people don't have to go through x years of trial and error (in my case 3 years...) to find the right one. I think this is really cool and happy to be a guinea-pig meanwhile my symptoms improved a bit in the last couple of days, i guess the 4th infusion started to kick in, so i am again doubting what to do although i am still not close to remission.

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DX pancolitis 2015
Last remission 2016
(Moderately severe) left-sided colitis since 2018
Have tried nearly all drugs and quack options available
Currently working with Entyvio, not sure it is working with me.

A little improvement is a good sign. Entyvio is a very slow working med, so it might take 12-14 weeks to make a big dent within your symptoms.

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Moderator Ulcerative Colitis
John, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa
Is it unpatriotic to wipe your bumm with George Washington bills if there's no tp in a stall and you're otherwise in dire-straights? I think George would understand...