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Thu, April 16, 2020 1:34 PM

My Gastroentroentologist is recommending that I start Entyvio. I would like to hear about side effects others have experienced while o. Entyvio infusions.

FPO KarenSwanson
Joined Apr 16, 2020

Sun, November 07, 2021 7:35 PM

Reply posted for RK.

Thanks for your response. I screwed up and changed GI Docs because of the chronic flares. I take immodium and it helps alot. After a negative sigmoidoscopy, he still thinks somethings wrong and wants to put me thru a colonoscopy and endoscopy @ the same time in the hospital. I know he won't find anything. But I can't lose another Dr. I need to tell him it's due to severe stress. A botched up foot surgery has left me in severe pain.I cry everyday because the damage has been done. I'm also in a doomed marriage and have had major depression all my life. I'm sorry. I forgot how you're doing. What meds are you on again? It's easier for me to message thru e-mail. It's if interested. Could sure use the support. Thanks. Maria.

FPO ReReJean79class
Joined May 25, 2022

Thu, November 04, 2021 4:17 PM

Reply posted for ReReJean79class.

Lot of factors could be a trigger. I have seen reports of people who's colonoscopy looks worst then others and have no symptoms. Hard to say. Try having 4-5 smaller meals, avoid caffine and take 2 metamucil with meal and see if that helps. Good thing is you dont have inflammation and Entyvio is working. 

Joined Oct 30, 2021

Wed, November 03, 2021 9:23 PM

Reply posted for RK.

My colon shows no signs of inflamation and biopses are negative. So entyvio must be working. But why so many flares? I'm taking Immodium which helps alot,but is that just covering up a problem? Or, since my entire colon is effected is that just as good as it gets? I have a new GI Doc and he thinks there has to be something underlying. My sigmoidoscopy was good. Now he wants to follow with a colonoscopy. Does anyone think this can all be overdone? If I refuse the colonoscopy will I lose my Doctor? If anyone has ideas I'd be glad to share my e-mail since I don't text. Thanks. Maria.

FPO ReReJean79class
Joined May 25, 2022

Wed, November 03, 2021 2:59 PM

Reply posted for ReReJean79class.

My biopsy shows active UC and my blood inflammation marker says otherwise. I have about 6 BM a day. I take immodium if I am in a meeting or so but otherwise you can try taking 2 metamucil with meal, that bulks the stool and has many other health benefits. If you like to share your exprience and know mine, feel free to text me 404 6543 012. RK

Joined Oct 30, 2021

Tue, November 02, 2021 6:53 PM

Reply posted for jebacher50.

Why do my colonoscopies show no inflamation and biopses are negative, but I have 5 to 8 flares a day? 2 GI Docs don't know what's going on. Does anyone else have this frustrating problem? I can't eat anything but peanut butter and protein bars. He says to take Immodium. Maria.

FPO ReReJean79class
Joined May 25, 2022

Wed, October 27, 2021 11:29 AM

Reply posted for KarenSwanson.

I have had no side affects on Entyvio for 2 years. Unfortunately it has stopped working. Does anyone know if it's hard for my GI. to get insurance to pay for a new med for severe colitis? Maria.

FPO ReReJean79class
Joined May 25, 2022

Tue, September 07, 2021 8:13 PM

Reply posted for charbs.

I"ve just stated entyvio. I'm about 5 months into it. Started with every 8 weeks and was feeling ok but then recently had a flare up where I'm basically bloated all the time. I've cut out dairy, gluten and cofee from my diet but nothing seems to work. 

My doctor just started me with 4 week infusions. She has said that it does take awhile for it to kick in. I'm curious to hear other's thoughts and experiences. 

I'm becoming pretty impatient and am wondering if we should try something else. My doctor just put me on budesonide to hopeully help while the entyvio takes affect. 

I have crohns for 31 years now. Had my colon removed in 2006 and have been doing great with my illeostomy up unil about a year and half ago. I basically feel like I have indigestion all the time. It is so uncomfortable. 

Take care,

FPO jebacher50
Joined Sep 7, 2021

Tue, March 02, 2021 9:44 PM

Reply posted for KarenSwanson.

I would also like to add that I have been on Entyvio for over a year. I've been on multiple things (including Humira) for over 20 years. Couldn't eat raw fruits and veggies without getting sick. A few months after starting Entyvio my gastro said I could start a normal diet. I have eaten SO many salads and apples and any raw veggies since then! I just had a colonoscopy at the one year mark and they said there was no indication of any  inflammation, and they declared me in clinical remission. It's been amazing! I haven't noticed any side effects as of the one year mark. It's definitely worth a try!

FPO muspia15
Joined Mar 2, 2021

Wed, January 27, 2021 11:52 AM

Reply posted for KarenSwanson.

Hey I notice this thread is a little old. 

but let me add that, I have been on entyvio for almost 2 years now.  

I can honestly say I am having zero side effects   Knock on wood thank god.  

from what I understand, entyvio is the best drug for us, simply because it's made directly for UC and crohns.  Where as humira was originally for arthritis, I believe. 

entyvio has given me my life back, I am 99% in remission.  I have my good days and bad.  

FPO Andy604
Joined Aug 12, 2020

Wed, January 06, 2021 3:33 PM

Reply posted for KarenSwanson.

Hi all. First post. 

A question to all. I'm noticing bloody diarrhea the day after Entivio.this has happened after the last 2 treatments. The wowed thing is I feel well after a few days.

 Anyone else have this?

FPO Buco
Joined Jan 6, 2021

Wed, December 23, 2020 10:15 PM

Reply posted for KarenSwanson.

I am a uc patient for 5 years.  I was fail on humira and fail on entyvio.  I had to come off entyvio as after the third treatment I developed joint pain.  The joint pain subsided quickly after I stopped treatments.  It was painful for the few days.  You will know if you have that side effect.  

good luck!  

FPO Dmihalik
Joined Dec 23, 2020

Wed, December 23, 2020 2:52 AM

Reply posted for KarenSwanson.

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FPO LindaTaylor
Joined Dec 16, 2020

Tue, November 10, 2020 4:59 PM

Reply posted for KarenSwanson.

I've had no side effects while on entyvio, I used to get infusions once every other month from Jan 2018-June 2020. I stopped the infusions due to loss of insurance, now I just eat liver to keep symptoms at bay. That's the only thing that I've been able to stop a flare up with other than steroids or entyvio. 

FPO Mission664
Joined Nov 10, 2020

Wed, September 02, 2020 11:41 AM

Reply posted for KarenSwanson.

I started my Infusion on July 21st 2020. Within a week I was having cold like symptoms, neck stiffness, back pain and tingling in my limbs. I was evaluated and they found abnormalities in my lungs. The pulmonologist hypothesis it was triggered my the infusion along with my other symptoms. But of couse they cant say forsure ... and Im bummed because in regards to my UC it helped me!!! Within two weeks of my first infusion I was having normal stools, no cramping, ect. I personally think it is worth trying because if it works for you, it can be life changing :). Good luck!! 

Joined Sep 2, 2020

Sun, July 19, 2020 10:57 PM

Reply posted for KarenSwanson.

I have been on Entivyo for about a year and it is the first medication that has worked for me so far. The side effects I experience vary. Sometimes I get really exhausted a day after my infusion. Other side effects have been joint pain, nausea, mild fever, and loss of appetite. But all of these side effects are worth it I think when it comes to overall feeling better.

FPO jesshalloran
Joined Jul 18, 2020

Sat, May 09, 2020 1:25 PM

Reply posted for KarenSwanson.

I've been on Entyvio for over two years.  For the most part, it has helped pretty significantly.  However, I do find that my eyes water continuously as does my nose.  I believe these both represent possible side effects.  Also, I'm on an eight week cycle of infusions and do notice an increase in cramping and/or discomfort within a week to ten days prior to my next infusion.

FPO andybr
Joined Jan 17, 2017

Mon, May 04, 2020 10:24 AM

Reply posted for KarenSwanson.

I've been on it for almost a year and I haven't had a UC symptom since August 1st. I do have some joint pain, mainly in my knees, but that could just be being 56.

FPO jwiley
Joined May 10, 2019

Thu, April 16, 2020 6:58 PM

Reply posted for KarenSwanson.

I have been on Entyvio for my Crohn's for 2 years now and luckily I have had no side effects and am currently in remission.

FPO Teddybear71
Joined Nov 21, 2019

Thu, April 16, 2020 2:38 PM

Reply posted for KarenSwanson.

My only problem is it has triggered my psoriasis.

FPO charbs
Joined Oct 31, 2016

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