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Terminal Ileitis pain - now goes into groin/thigh (Toronto Canada)

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Ulcerative Colitis
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Posted 6/27/2016 5:10 PM (GMT 0)
Thank you for all your knowledge and willingness to share information.

I am grateful that even if Entyvio fails, I am able to escalate to a higher strength of drug. My new IBD GI seems to be highly connected to drug company funding etc. for getting his patients rapid access to meds.


emmalouwho
Posted 6/27/2016 8:25 PM (GMT 0)
Hey Emma,

Usually Entyvio is used after remicade etc. fail since it is a newer drug so not sure why they're saying it's a bigger gun drug? Maybe because it's not a systemized drug but rather localized. A heads up though, it can take a while to work. People usually say up to 12-14 weeks before you start seeing results.
Posted 6/27/2016 8:38 PM (GMT 0)
Yeah, that's what I heard too.

My new doctor is Mark Silverberg (the #2 guy at Mount Sinai's IBD research). After my colonoscopy, he told me that with 20cm of UC, he didn't want to use Remicade unless he had too. (He insisted on doing the Colonoscopy before prescribing a 'game plan' for me.)

He specifically said the side effect and risk profile for Entyvio was less than that for Remicade, which was why he wanted to use it, in my case.

I had Infusion #1 last week and haven't noticed anything except less purple and red blood and more formed BMs. Abdominal pains come and go.

Excited to see what happens.
Posted 6/27/2016 8:44 PM (GMT 0)
Maybe this (partly) explains the decision to use Vedo for my UC?

http://www.mayoclinic.org/medical-professionals/clinical-updates/digestive-diseases/vedolizumab-better-for-uc-than-crohns-disease-in-trials
Posted 6/28/2016 9:27 AM (GMT 0)
Just saw this post and wanted to say "hi" from a fellow Torontonian:)

I believe your new GI was one of the specialists who prescribed me IVIG; so now you have a great new option! (There are 2 docs with similar names, can never remember which one it was- but I've seen both.)
Posted 6/28/2016 2:22 PM (GMT 0)
What is IVIG?

Not sure I am responding to the Entyvio. I still have daily periods of pain where I feel that either my gallbladder or appendix will burst. I've had IBD symptoms (except the blood) for 13 years now.
Posted 6/28/2016 5:38 PM (GMT 0)
Intravenous immunogloblin. It's a blood product full of lovely antibodies

You have to be on Entyvio for 14 weeks to see if it will be effective. I think I tried it for 28 weeks and didn't make a spot of difference:(
Posted 6/28/2016 5:54 PM (GMT 0)
I'm hoping it doesn't keep me stalled. We shall see. At least I'm still on my old meds too (oral and rectal Pentasa and Imruan), so I'm not losing ground.

I've been sick too long since the Pancolitis (February 2016). They said there is 20cm that is not healing. (Although I am aware that most UCers will almost always retrain some UC activity in the rectum due to the distributional patterns in how it flares (bottom to top) and heals (top to bottom).) The longer I stay stalled at 20cm, the more I am concerned that this is a permanent level of disease activity.

U B TOUGH:
How much has IVIG helped you in terms of shrinking your UC's distribution (cm).

Post Edited (emmalouwho) : 6/28/2016 11:59:38 AM (GMT-6)
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