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Ulcerative Colitis
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Posted 8/8/2015 9:27 PM (GMT 0)
Hi all!

It sounds like Entyvio is a possibility for me moving forward. I would love to hear of some of your experiences with it. Did it work? Did you have any bad side effects?

I am a bit worried about the idea of bringing my immune system down since I teach 2nd graders (aka germ factories). Did you catch lots of colds etc. on Entyvio?

I appreciate any info you can share with me!
Posted 8/8/2015 9:37 PM (GMT 0)
Have you tried any immunosuppressants like 6mp or other biologics like Remicade or Humira?

While I have not been on entyvio, I would have a very difficult time getting over colds and infections (of any kind) while on Remicade. I feel like it would take me twice or three times as long to bounce back.
Posted 8/8/2015 10:02 PM (GMT 0)
I second what atwoodt stated, imuran or 6mp prior to biologic treatment is the general medication progression. If you've failed either of those immunomodulators (that particular class of medication) you have my entyvio blessing =)

on entyvio currently. 2 infusions in. Little early to tell but feeling good and CRP (inflammation indicator) levels have lowered, will have more definitive answers after infusion 3.

EDIT
entyvio isn't supposed to be as systematic as the other biologic treatments available. More gut specific, theoretically less side effects. My only complaint is mild migraines for a day or so after infusions.

Post Edited (TheITIS) : 8/8/2015 4:05:09 PM (GMT-6)

Posted 8/8/2015 10:35 PM (GMT 0)
I have not tried 6mp/azathioprine because I can't metabolize those drugs according to my bloodwork. I'm also trying to get pregnant. My doctor thinks that this would be the best step to take if I continue to have trouble on my current meds.
Posted 8/8/2015 11:10 PM (GMT 0)
Im on Entyvio as well. Make sure to check out the Entyvio warriors facebook group when you have a chance. I put together a laymens terms FAQ doc in the files section of that group that might be of interest to you.
Posted 8/8/2015 11:17 PM (GMT 0)
Funny my gastro also mentioned if I was looking to pro-create to seriously consider coming off the imuran for a few months. If you cannot tolerate imuran or 6mp go for entyvio though know that entyvio isn't as quick to work as the other biologics so you'll need a bridge. My current bridge is uceris. I'm not a woman so I haven't the slightest idea as to dealing with pregnancy while flaring. Maybe best to try to get into remission first? Maybe there's a biologic that has a better chance of knocking you into remission quicker than entyvio if you cannot wait the amount of time it'll take to see if entyvio is effective? No idea if that hypothetical other biologic would be okay to get pregnant on. I don't know, these are good questions to ask your gastro.

Getting back to your topic question I do know that in terms of sides I haven't really had any since beginning my entyvio treatment nor have I come down with illness. I do believe I'm on the mend. Whatever your decision I do wish you the best of luck!
Posted 8/8/2015 11:36 PM (GMT 0)
I have had 5 infusion, it's going ok better than remicade or humira for me
Posted 8/8/2015 11:42 PM (GMT 0)
I tried it without luck. I ended up having surgery. it might be the last option before surgery if you're not going to try 6mp/imuran.
Posted 8/9/2015 12:47 AM (GMT 0)
I did not have success with Entyvio either. No side effects but also no results. I find interesting that someone's Dr would recommend this if you are considering becoming pregnant because before I started it my Dr said there was no conclusive data and she wasn't comfortable with me trying to become pregnant while on it.

Several people have had successful Remicade and Humira babies there is more info on that.
Posted 8/9/2015 1:37 AM (GMT 0)
I am giving up on Entyvio after 6 months. No side effects, no results either. Still flaring badly. Hoping Remicade will help instead. Fingers crossed.
Posted 8/9/2015 6:56 AM (GMT 0)
i was told its ok to become pregnant and continue with remicade during pregnancy
Posted 8/9/2015 10:57 AM (GMT 0)
I have been on Entyvio for 9 Months had 7 infusions so far
Much improvement in my UC less trips to the potty I also gained 15 much needed LBs
It's not perfect but I'll take it ! turn
Posted 8/9/2015 2:16 PM (GMT 0)
Thank you all so much for the info so far. It sounds like it has been very effective for some of you and unfortunately not for others.

I forgot to add that this has become an option, in part, due to a suspected steroid dependency. We're doing a little experiment right now to see how I do without the budesonide suppositories. So far, I'm 2 days in and already had a little bit of blood last night.
Posted 8/10/2015 1:58 PM (GMT 0)

Marauder93 said...
Im on Entyvio as well. Make sure to check out the Entyvio warriors facebook group when you have a chance. I put together a laymens terms FAQ doc in the files section of that group that might be of interest to you.

Is the fb group still active? I sent a request to join, and now i can't find the group on facebook.
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