How long before seeing results from E... - Crohn's and Colit...

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How long before seeing results from Entyvio?

MomofUCkid
MomofUCkid

I have a 16 y.o. daughter with severe Ulcerative Colitis. She has had many medication fails. She is a primary non-responder to Remicade. We have been in the hospital for 17 days today and she has had 2 Entyvio infusions, last one was 3 days ago. She will be getting a second blood transfusion today due to blood loss with bowel movements. Her disease is pretty bad. Entyvio is rather new to pediatric patients so no one here really knows how long it will take to work, if it is going to.

Can anyone tell me how long it took to see results from Entyvio infusions??

Thanks.

8 Replies
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willow24
willow24Administrator

Iv not tried this one yet, but with both humira and infliximab it took 3 doses to see good results. I am in the process of deciding between vedolimumab, ustekinumab or ileostomy. It might be worth editing or reposting but use the name vedolimumab as it seems to be the preferred name, hopefully you'l get more response. On Facebook there is a crohns and colitis forum and ibd (both uk and worldwide) forum where all ages post. Both are closed to public so members only see posts and offer support. We do seem to be limited with children and teenagers here at the moment

I really hope this is your daughters wonder drug. Sending much love and hugs xxx

MomofUCkid
MomofUCkid
in reply to willow24

Thank you. Great feed back. I am connected on FB but rarely use that forum.

Do they have her on steroids???

Yes, she has been on Steroids 30 mg for over a month. She no longer responds to steroids.

It took my son exactly 4 months to see improvement. He has pancolitis and gets Entyvio every 4 weeks instead of 8. We are happy with it. He was on high dose prednisone as we started the entyvio and then weaned off of that over the 4 months

MomofUCkid
MomofUCkid
in reply to IBDsucks

Good to know because we have exhausted all other medication options. Next step is colectomy and she is too young at 16. I want to give the vedolimumab a fighting chance to work before making any other decisions.

Thank you.

I can’t offer any answers but wanted to say I feel very bad for your daughter and will pray the Entyvio will help her.

I don't know the answer but will keep you and your dau in my thoughts and prayers. May this be the miracle medication that she needs at this time and that it works soon

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