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1 wk after entyvio

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Ulcerative Colitis
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Posted 9/17/2014 1:06 AM (GMT 0)
holding my own... fewer trips to the pot... 1 day of bleeding instead of daily.... still some accidents but at least getting to bathroom most of the time. No pain in gut....this is better than before.  See GI tomorrow.
Posted 9/17/2014 1:27 AM (GMT 0)
That sounds like a good improvement. I've heard entyvio can take a while to show results so perhaps you will be 100% soon.
Posted 9/17/2014 1:37 AM (GMT 0)
I'm a week out, as well. No noticeable difference. I wasn't bleeding when I began, so it may be hard for me to notice the immediate changes. It really is easy to tolerate. The fatigue that hit at the 48 hour mark was more than I expected. I'm thinking the fact I'm tapering prednisone at the same time, and had just dropped down to 20 mg, added to the mix.

The IV was definitely quick.

Fingers crossed.
Posted 9/17/2014 1:56 AM (GMT 0)
I'm due for my fourth infusion in a month and I can tell it's slowly (stressing the slowly part) working. My GI had some involvement in the trial run of this drug and spoke at conferences before it's release. He said you need to at least pass the 18 month milestone before the drug really takes effect. I'm hopeful this will put me into full remission.
Posted 9/17/2014 2:12 AM (GMT 0)
18 months...? That's a long haul to healing.
Posted 9/17/2014 2:28 AM (GMT 0)
I pray all of will benefit from our treatments.   Man.... it is hard sometimes.  Time will tell... we all have to stay strong. Thanks everyone for the feed back, it really has helped me since I join this group. I really felt alone....I am sorry so many people have this horrible disease, but it could be worse. Thanks again..
Posted 9/17/2014 2:58 AM (GMT 0)
PS. these meds really scare the sock off me.... Remicaide, simponi and now entyvio .... I really wonder how the body can handle this sometimes.  I know it can not be good.  But if you don't use them you can not function.
Posted 9/17/2014 3:10 AM (GMT 0)
18 months! No. If no progress at the 10 week mark, there was failure. I know it's slow , and this is not about me/ us, but that number need substantiation. We also were in a trial center, and our doc presented in front of the FDA. After approval, the docs were individually discussing the bridge therapy possibilities. Those were not agreed upon, so they knew some variations would exist. Some could improve after 10 weeks. However, the agreed upon end point was week 10 remission without steroids. Correct me if wrong. Even if it was 18 weeks, there could not be regression.
Posted 9/17/2014 3:32 AM (GMT 0)
I think he meant 18 weeks.

I'm due for my 4th infusion in 2weeks...I was doing really well, but the past two weeks I've degraded pretty significantly. So I'm kind of worried, maybe it'll start improving again with the next infusion.
Posted 9/17/2014 3:54 AM (GMT 0)
I might have over reacted, sorry. UCHater, I am really crossing my fingers for you. Monkey 10, you too! I so want others to have a happy remission. We are ok over here, the surgery was successful. Too early to praise it's success, but the pain has gone and all is ok. Just struck a note about the timing- I have heard such nuttiness lately, I just slipped to think there could be believers in
a 18 month window.
Posted 9/17/2014 1:40 PM (GMT 0)
Yeah, sorry meant 18 weeks!
Posted 9/17/2014 3:40 PM (GMT 0)
I'm still waiting for an a-ha moment w/ Entyvio. I'm at week 7 and have had 3 infusions. My doctor and the infusion nurse said week 14 is when they discontinue if no improvement.
Posted 9/19/2014 12:50 AM (GMT 0)
Ending week 2 of entyvio.... much better this week... still some accidents but cut by 3/4th.   Gi visit went good yesterday....lab is all great.... do not see him until Dec if I continue to improve or sooner if not.  He hugged me... saying we might have light at the end of some hard months and year.  Also said new meds coming out again in a few months...that my change how UC is treated... Lets all hang in there.

Went to a cooperate meeting today.... and first time in 2 years did not have to run and I mean run out of the room

Posted 9/19/2014 2:34 AM (GMT 0)
What sort of new meds coming from out in a few months? I haven't heard of anything in the pipeline that's right around the corner...
Posted 9/19/2014 11:22 AM (GMT 0)
What new meds come out in a few months??
Posted 9/19/2014 5:19 PM (GMT 0)
I know Uceris foam is close to being approved and should launch in Q1 2015 but I have not heard of any others.  The only other drug that appears to be close is Xeljanz but I believe still in Phase 3 so it's a couple years away from launch most likely.  I'm interested if there is anything else.
Posted 9/19/2014 8:59 PM (GMT 0)
I didn't know about Uceris foam. My doctor's office is doing the Xeljanz trial. I think that is going to be awhile.
Posted 9/21/2014 12:12 AM (GMT 0)
hea really did not tell me what was on the way....just made the comment more to come. I hope so for everyone.
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