Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

New treatment Entyvio?


Thu, November 12, 2020 9:50 PM

Hello, I am new here and recently went to see my GI doctor and he mentioned that my inflammation levels are high. I am currently taking 6-mp, allopurinol, and balsalaside and thinks that they may not be helping anymore as I have been taking them for 4+ years. He mentioned Entyvio and I'm wondering if anyone has tried it yet and how it may be doing for them? Any side effects they've had? Thank yall.

FPO samilouw
Joined Nov 12, 2020

Sun, April 11, 2021 7:20 PM

Reply posted for Tamara L.

HI.  My doctor wants to start me on Entyvio, but I'm just hesitant about biologics in general.  I've had decent results with Mesalamine and used short stints of Prednisone over the years to bring me out of flares.  After flaring and being fairly miserable 1/2 of last year, my GI suggested Entyvio.  He had previously suggested Humira and Xeljanz.  Have your tried either of these, or was Entyvio your first biologic?  Regardless, I'm glad it's working for you!

FPO Tamara L
Joined Apr 11, 2021

Tue, March 02, 2021 9:32 PM

Reply posted for samilouw.

Hi! I started Entyvio a little over a year ago and it has worked great for me! I had been on Asacol and Humira with some splashes of prednisone for over 20 years. I couldn't have hardly any fiber in my diet or I'd flare up. After being on Entyvio for 2 months, my gastro said I could resume a normal diet, raw fruits and veggies included. I have been able to eat loads of fiber ever since! I just had a colonoscopy at the one year mark and there was no inflammation and the gastro said it looked as perfect as anything! So, for me, it has been a god send! Sounds like it really differs with each person though.

FPO muspia15
Joined Mar 2, 2021

Sun, February 14, 2021 4:05 PM

Reply posted for samilouw.

I was on Entyvio for a year with no luck. Previous to that I was Cimzia for 6 years and Remicade for about the same time. They just stop working for me. Entyvio seemed to work initially but the longer I was on it the worse I got, finally resulting in fecel incontinence. Dr just switched me to Stelara, fingers crossed. I did not have any side effects on any drug. Bottom line you won't know until you try

FPO ComeonEileen
Joined Feb 14, 2021

Sat, December 12, 2020 11:41 PM

Reply posted for samilouw.

Hello -- my 18 yr old son has been on Entyvio for 1.5 yrs after switching from Remicade which he had been on for 6 years.  Remicade worked very well -- put him into clinical remission -- but the GI decided to switch him to Entyvio after weighing the benefits and risks.  He has not done as well on Entyvio.  Within 2 weeks of beginning Entyvio he came down with a sinus cold that occurred every 3 weeks for 8 months.  Joint pain also appeared and inflammation levels slowly started to rise -- still slowly rising.  His hair has thinned dramatically and you can imagine how that is going down with an 18 year old -- whether this is inflammation or the Entyvio, don't know but hairloss does appear to be a side effect.  4 months ago he started to have breathing issues -- feels like he can't get a full breath and so takes a gasp for air every few minutes.  He had lung x-ray and all clear there, next will be a pulmonary function test.  Who knows what it is but something tells me it could be tied to Entyvio.  Needless to say, his quality of life went from normal on Remicade to feeling like he has a chronic illness on Entyvio.  He used to be a very active kid -- cycling, rock climbing -- and now easily injures himself while doing either.  When you ask your doctor about side effects the general answer is, "the data doesn't suggest that, I haven't heard about that."  Exception is sinus infection - 12% rate of incidence, which isn't insignificant.  Talk to the infusion clinic nurses -- they're the ones who will tell you all about what they see and hear.  It's a journey.  Goodluck!

FPO Isa
Joined Jan 9, 2020

Related Topics

Corona Virus and Remicade...
Author Image Jennie RC
Joined Mar 21, 2020

Hi all, I'm facing the decision to get my Rem....

read more

Treatment options decisio...
Author Image Bmineard1
Joined Nov 6, 2020

My son was diagnosed with crohns at 10yrs old, due....

read more

Entyvio
Author Image AE
Joined Nov 18, 2020

I started Entyvio this summer and am doing fine on....

read more