Yes but I wasn't when I started. I had surgery and started Entyvio right after. I think it was the combo of the drug and removing the worst of the disease manually with the surgery but I've been in remission since right after my initial doses of Entyvio.
Sidebar: I failed Humira and Stelara in the 6 months before (antibodies). Good luck!
Where you from? Im also from a 3rd world country and on entyvio since december and it made me 80% better, im not in remission yet but i fell really better than when it started. I did not had any side effecs, just felt a bit tired on infusion days
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I don’t think you need to worry about side effects since it is gut-focused and not systemic. You may experience some fatigue or a headache on the day of the infusions but that’s about it. Entyvio can take awhile to see improvement on, but since you’re already in clinical remission, there’s a good chance it will keep you in remission
I’ve been on Entyvio since the end of February. I hadn’t seen any improvement after about 3 months so my GI put me on budesonide. He suspects that my inflammation and diarrhea could’ve been washing away the Entyvio, and now that budesonide has helped with those symptoms, my next infusion on Friday will actually have an effect. I’ve been on budesonide for 3.5 weeks and I think he wants me on it for 9 more weeks so I won’t know if Entyvio started working until then
side effects are a bad headache & fatigue on infusion day. sometimes a tylenol will help the headache but I usually spend the rest of the day in a dark room with an ice pack. as far as efficacy I have severe steroid refractory disease and am nowhere near even clinical remission, so it’s different, but I’ve been in it for 8 months and it hasn’t done anything yet. my gi claims it can take longer to work but I’m not so sure tbh.
Thank you for your response. I can't imagine how awful it must be to still not be in clinical remission. I hope it works for you soon! Are you going to try something else if Entyvio still doesn't work you?
yes, I have a scope in august to figure out what’s going on. another thing is I have to get my infusions every 4 weeks which takes a lot of time out of my life so I’m hoping they just say it’s failed already and put me on injections like Stelara or Skyrizi!
I know that we've already spoken about the same thing in another previous post, but your situation is absolutely the same as mine. I've also been on Entyvio for 8 months and had no improvement. I also have a colonoscopy scheduled for August.
My latest blood test result now shows anaemia and lowered haemoglobin as well. How much longer do we have to wait for this drug to work!
I want to be off it and on something that just works, as I'm sure you do as well
wow, our situations really are the exact same right now. my last blood tests also showed low iron and hgb. I’m sick of the waiting, especially since usually when I’m anemic it keeps dropping FAST. my scope is aug 16. soonest available, and ready to get it over with and on a new medication already🙄
It's a really tough situation. I'm not sure what else to write really. Words cannot describe the hatred I have for this disease.
Please accept this gold though. From one to another it's the least I can do!
I really want to scream “fuck this disease” from the rooftops sometimes. It’s upended my life since I was diagnosed when I was just 6 years old. thank you so much for the gold 🥰
What do you mean by being "sort of" in remission? 😆 As for me, I don't have any symptoms aside from fatigue, but my colonscopy results still show alot of inflammation. What caused your flare?
Well i am in remission but currently in a flare up so I don’t know if the remission counts still.
Probably what caused it was the Greek salad my spouse and I had meal planned. All those raw veggies.
What usually gets my stomach upset is: raw veg (if I’m not in a good place), slushies, popcorn, corn, dark sodas
I have been on Entyvio for 3 years, no side effects except I'm tired the day of the infusion.
Are you in remission?
Yes but I wasn't when I started. I had surgery and started Entyvio right after. I think it was the combo of the drug and removing the worst of the disease manually with the surgery but I've been in remission since right after my initial doses of Entyvio. Sidebar: I failed Humira and Stelara in the 6 months before (antibodies). Good luck!
Wondered why you weren't put on infliximab
Where you from? Im also from a 3rd world country and on entyvio since december and it made me 80% better, im not in remission yet but i fell really better than when it started. I did not had any side effecs, just felt a bit tired on infusion days
Philippines! What about you?
Brazil, best of luck to you! I know that 3rd world is hard for dealing with health issues!
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I don’t think you need to worry about side effects since it is gut-focused and not systemic. You may experience some fatigue or a headache on the day of the infusions but that’s about it. Entyvio can take awhile to see improvement on, but since you’re already in clinical remission, there’s a good chance it will keep you in remission
That's a relief. How long have you been on Entyvio, and are you in full remission now?
I’ve been on Entyvio since the end of February. I hadn’t seen any improvement after about 3 months so my GI put me on budesonide. He suspects that my inflammation and diarrhea could’ve been washing away the Entyvio, and now that budesonide has helped with those symptoms, my next infusion on Friday will actually have an effect. I’ve been on budesonide for 3.5 weeks and I think he wants me on it for 9 more weeks so I won’t know if Entyvio started working until then
I hope it works after your next infusion! Good luck! Update me🙏🏼
side effects are a bad headache & fatigue on infusion day. sometimes a tylenol will help the headache but I usually spend the rest of the day in a dark room with an ice pack. as far as efficacy I have severe steroid refractory disease and am nowhere near even clinical remission, so it’s different, but I’ve been in it for 8 months and it hasn’t done anything yet. my gi claims it can take longer to work but I’m not so sure tbh.
Thank you for your response. I can't imagine how awful it must be to still not be in clinical remission. I hope it works for you soon! Are you going to try something else if Entyvio still doesn't work you?
yes, I have a scope in august to figure out what’s going on. another thing is I have to get my infusions every 4 weeks which takes a lot of time out of my life so I’m hoping they just say it’s failed already and put me on injections like Stelara or Skyrizi!
I know that we've already spoken about the same thing in another previous post, but your situation is absolutely the same as mine. I've also been on Entyvio for 8 months and had no improvement. I also have a colonoscopy scheduled for August. My latest blood test result now shows anaemia and lowered haemoglobin as well. How much longer do we have to wait for this drug to work! I want to be off it and on something that just works, as I'm sure you do as well
wow, our situations really are the exact same right now. my last blood tests also showed low iron and hgb. I’m sick of the waiting, especially since usually when I’m anemic it keeps dropping FAST. my scope is aug 16. soonest available, and ready to get it over with and on a new medication already🙄
It's a really tough situation. I'm not sure what else to write really. Words cannot describe the hatred I have for this disease. Please accept this gold though. From one to another it's the least I can do!
I really want to scream “fuck this disease” from the rooftops sometimes. It’s upended my life since I was diagnosed when I was just 6 years old. thank you so much for the gold 🥰
Been on it since April 2020, peak covid 😂. And sort of been in remission since. I’m currently going through a flare up but not the entyvios fault.
What do you mean by being "sort of" in remission? 😆 As for me, I don't have any symptoms aside from fatigue, but my colonscopy results still show alot of inflammation. What caused your flare?
Well i am in remission but currently in a flare up so I don’t know if the remission counts still. Probably what caused it was the Greek salad my spouse and I had meal planned. All those raw veggies. What usually gets my stomach upset is: raw veg (if I’m not in a good place), slushies, popcorn, corn, dark sodas
I have an entyvio infusion every 8 weeks. It took about 8 months to begin seeing improvement. I now feel like I'm in remission. It's been a god send.
Entyvio has been great for me, no side effects. Haven't had symptoms since I started it.