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Rare Side Effect from Entyvio treatment

Mon, February 10, 2020 10:50 AM

I was diagnosed with severe Ulcerative Colitis back in 2015, and I've struggled for years to find a treatment that would actually help me. I enlisted the help of one of Boston's finest doctors and thought I had a solution. Entyvio. After months of fighting with my insurance compay, I was finally approved! I began my first loading dose in January.

A few hours after my very first infusion, my left eye started to feel like it had a stye. By the next day, it was completely swollen shut. My eye doctor and urgent care both wrote me off saying "it was a common stye" and to use a warm compress. After 10 days, I went back to the eye doctor as it wasn't getting any better. She took one look and immediately said there was nothing she could do until it was better healed. She put me on antibiotics.

Fast foward two weeks. I had a follow up appointment with my UC doctor. I explained how my eye became infected after my first infusion. He insisted he had never seen a side effect that effected the eyes in that way and approved my 2nd dose. I proceeded with the 2nd dose. Immediately following the infusion, my other eye became infected. This time, with a cluster of infections (5 total). My UC and eye doctors immediately agreed it must be because of the Entyvio. On top of the antibiotics, I was also put on a prednisone burst to help with the inflammation.

My eyelids have been healing for over a month now. My UC doctor and eye doctor insist they're doing some research into the side effects, but I'm curious if anyone else in the community has had that kind of reaction to Entyvio or any other kind of infusion treament.

Thank you so much for reading and for any help or suggestions you can give.

mm1436
Joined Feb 10, 2020

Fri, January 19, 2024 12:56 PM

Reply posted for mm1436.

Hi thank you for this post! Sorry you had that experience! Any updates on what happened? Did you continue taking Entyvio? I had my first infusion a couple days ago. Noticed a stye the next day. I was told not to worry.

C23
Joined Jan 19, 2024

Tue, February 25, 2020 8:38 PM

Reply posted for mm1436.

Yikes! I am so sorry to hear this! My doc wants me to start Entyvia, but I've been nervous because I'm prone to upper respiratory infections. I hope they come up with some answers for you!

OHJen78
Joined Feb 25, 2020

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