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Entyvio tomorrow!

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Ulcerative Colitis
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Posted 8/4/2014 5:56 PM (GMT 0)
Have to say I am very excited to start this treatment tomorrow!  Hopefully the different mechanism works for me. Remcade, Humira, Simponi didn't really help me out.  That said, this is the end of the road for me as far as UC medicine is concerned.  If this does not work after 14 weeks, I will schedule my colonectomy @ Cleveland Clinic and not look back.  This disease really interferes with my family time, athletic pursuits and work productivity.  I've made a promise to myself that I will once again run a 5k in under 20 minutes by the end of next year and either through medicine or surgery, I'm keeping that promise. 
Posted 8/4/2014 5:59 PM (GMT 0)
Hope it works for ya!!
Posted 8/4/2014 6:01 PM (GMT 0)
Im excited for you indy! I hope it helps. I plan on trying entyvio if my current plan doesnt stop a flare. I refuse to do prednisone again.

Would you mind posting your current symptoms and then posting if you have any changes after your infusions?
Posted 8/4/2014 6:11 PM (GMT 0)
Hey Banana-
Symptoms are---
Frequency-8-12 BMs per day
Urgency and increased frequency especially in the A.M.
Varying levels of fatigue

Have not seen blood in about a month which is good but I average about 1 accident every 10 days which is bad.

i should add that I'm glad to get off Simponi too.  I normally have some type of reaction about 10 days after the shot...fever, chills and terrible joint pains.  I'm not going back to Simponi under any condition.

Posted 8/4/2014 6:30 PM (GMT 0)
You might as well book the surgery now if you are only going to wait 14 days to see results. This drug takes a lot longer to work; weeks, if not months. Im taking a similar drug, and Im not supposed to see results until about 8 weeks in.
Posted 8/4/2014 6:37 PM (GMT 0)
I'm waiting 14 weeks..not days.
Posted 8/4/2014 6:38 PM (GMT 0)

Indycat23 said...
I'm waiting 14 weeks..not days.

Aaand there goes my literacy.... this is embarrassing. :p Thanks for pointing that out!
Posted 8/4/2014 6:54 PM (GMT 0)

Marauder93 said...

Indycat23 said...
I'm waiting 14 weeks..not days.

Aaand there goes my literacy.... this is embarrassing. :p Thanks for pointing that out!

Count me in as another one who can't read. I also read it as 14 days, and was thinking the same thing! I'll blame Remicade for my declining IQ. :)
Posted 8/4/2014 6:57 PM (GMT 0)
I hope it works for you. UC or not I have never been able to run 5k in under 20 minutes, I am happy to run 5k under 25 minutes!
Posted 8/4/2014 7:13 PM (GMT 0)
Good luck, drug looks promising!
B
Posted 8/4/2014 7:34 PM (GMT 0)
Indy, did you have that kind of reaction on Humira, also?

I did. Terrible flu-like symptoms that came out of nowhere. I would be fine one minute, then full on flu symptoms the next. My doctor took me off of it and I started Simponi on 7/25. Well on 7/31 I came down with the same thing. I didn't have the body ache like I had with Humira, but chills, shaking, 102 fever, complete weakness. I had a bunch of blood work and stool samples over the weekend. If those come back negative, I think my doc will take me off the Simponi before my next loading dose (8/8).
Posted 8/4/2014 7:56 PM (GMT 0)
I really hope it works for you!!!
Posted 8/4/2014 8:32 PM (GMT 0)
Thanks Everybody..I'm praying it works!

Jacket-I did have a similiar reaction to Humira. Definitely feels like the flu when I get it.
Posted 8/4/2014 8:38 PM (GMT 0)
I started last week on Entyvio. No luck w/ humira or remicade either. They didn't give me flu symptoms but methotrexate did. I was miserable on it.
Posted 8/5/2014 2:44 AM (GMT 0)
Our week 6 is upon us and no miracles to report. Don't use us as a guide just yet-still hopeful as we are not throwing in the towel for a few more weeks. Think we are done with the med dance soon. Today was very emotional. Doc agreed we need an end to this-giving it 2 more weeks. If still slipping we are on to surgery. Sad thing is that it coincides with the start of law school, and there is sadness in the home over the loss of 2 dreams today. Increase in pred only makes things worse. Everyone is different-we have waited for this drug for a year and it seems strange we don't give it the full time to work ( except if you see the pain and blood and frequency getting in the way of living).
Get the good stuff before you are too sick to benefit ( might be my wisdom of the day).
Leaving to cry now. later.
Posted 8/5/2014 2:47 AM (GMT 0)
Hey man -

Good luck and hope things work out.
Posted 8/5/2014 3:00 AM (GMT 0)
Try to be patient Kat...don't give up too soon. I say give it 3 months before throwing in the towel on it. That's pretty much what what my doc said and what I'm planning on doing. I know how hard that is while we suffer every single day, 3 months is a long time.

I'm in the same boat....If this doesn't work the next step is surgery, I can't waste my life being afraid to leave the house. I've been on this flare since February of last year.
Posted 8/5/2014 2:49 PM (GMT 0)
Katmom - I would give this drug at LEAST 10-12 weeks until you start seeing effects. Far to early to be giving up hope. I'm also at the 6 week mark (exactly 6 weeks today), and I have seen no effects either.
Posted 8/5/2014 6:08 PM (GMT 0)
Infusion is done! Actual infusion was only 30 minutes as others have said. Quick and painless. I feel pretty normal right now but it sounds like the fatigue others have experienced normally takes a while to develop. Only bad part of today is I shut my hand in a door after the infusion and may have broken my index finger. Off to the urgent care center now...
Posted 8/5/2014 6:37 PM (GMT 0)
Ouch! Glad everything else went smoothly
Posted 8/5/2014 7:36 PM (GMT 0)
Oh no! Glad infusion went well. Sorry about your finger.
Posted 8/5/2014 7:47 PM (GMT 0)
Hello, I am currently in the process of Entyvio approval from the insurance company. Can you guys tell me how long it took to get your Entyvio approvals? My UC has gone from mild (proctitis, 15 CM rectum) to moderate (1/2 colon) to complete (Pancolitis) over the past 10 years or so. The last drug I have tried is 6-MP, which hasn't been keeping me in remission. The regular GI wanted me to start Remicade but I saw an IBD specialist at the same hospital as my GI and they recommended trying Entyvio first. They said that Entyvio is more likely to succeed in people who haven't tried Remicade yet. If Entyvio doesn't work then Remicade can be the next step. I am just anxious and ready to get going with Entyvio. Currently am on 40MG of Pred and tapering weekly. Thank you for the replies.
Posted 8/5/2014 7:58 PM (GMT 0)
It took about 4 weeks for BCBS to approve it for me.
Posted 8/5/2014 8:04 PM (GMT 0)
HealUC - I began the insurance approval process for Entyvio the week it was approved by the FDA, and didn't get my first infusion until nearly 2 months later. Aetna was playing a lot of games such as claiming not to receive the correct information from my doctor and having them re-send the same things over and over. Or they were just completely incompetent. Either is a possibility. Anyway, the approval process took a lot longer than I had hoped, but much of it may have been that no one (Aetna, Takeda, my doctor) had their act together because the drug was brand new. I would advise you to contact Entyvio Connect, which is Takeda's patient assistance program. They will help you and your doctor through the process and enroll you in the co-pay assistance program. Just stay on top of them and everyone else in the chain. I don't know if you'll get approved without having tried Remicade or another anti-TNF first.
Posted 8/5/2014 8:32 PM (GMT 0)
I want to emphasize this point "I don't know if you'll get Entyvio approved without having tried Remicade or another anti-TNF first." I've seen others post that they ran into that problem with their insurance. If you've tried and failed a anti-tnf medication (remicade, humira, simponi) then it is much easier to get Entyvio approved by the sounds of it. Try the cheaper options 1st is the insurance mantra...
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