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I'm starting Entyvio today...

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Ulcerative Colitis
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Posted 4/16/2015 2:26 PM (GMT 0)
I'll be starting my first Entyvio infusion this afternoon. I remember being much more excited about this drug a year ago, as I felt I was going to eventually end up on it. Now it's here, and I haven't read a many positives on it, so I'm not as confident as I was. Oh well, nothing else is doing the trick, maybe this is the magic potion I need.
If this doesn't work, I'm going to try and hold off the rest of the year with whatever symptoms I'm having. I've got a short term disability policy that will go into effect next year, and probably strongly consider surgery at that point.
Posted 4/16/2015 2:33 PM (GMT 0)
Good luck today. The infusions are so much easier than Remicade, they take literally 30 minutes. It takes about 20 to get the entyvio mixed up and ready. They usually hold you there for a little while after. I had to stay an hour after my first but I don't have to stay anymore :) The entyvio warriors group on facebook has a lot of people having success with entyvio - maybe you should join and see.
Posted 4/16/2015 2:41 PM (GMT 0)
Thanks! I joined that group last week, actually! I may post a picture there later today.
Do you have to call them before you go to give your weight? I had to do that with Remicade so it would be ready when I got there.
Posted 4/16/2015 2:47 PM (GMT 0)
I second the FB Entyvio Warriors group recommendation.

Be prepared to wait. I am doing pretty well now, but I didn't see a real difference until after my 5th infusion (and I am still on Uceris, so I have a ways to go). I did see an increase in energy by the time I had finished the loading doses, though. My gastro is currently telling patients 6-7 months to see a response (not remission, response). I'm 8 months in at this point, and as I said, I'm not in remission. However, my gut is behaving better, I have energy again, and I haven't weighed this much since my last remission (that's huge - I do not gain weight easily at all).

Good luck!

ETA: dose is independent of weight, so no need to worry about weighing yourself.
Posted 4/16/2015 2:57 PM (GMT 0)
The Warriors group has scared me a little with some of the bad reactions. I had horrible reactions to Humira, and it makes me a little nervous I might have the same. Trying not to think about it too much, though.

How is Xifaxin working for you Sloth? My doctor gave me a 9 day sample and I did really well on it. I've done well on that and Flagyl, but they just aren't long term solutions. How long have you been/or will you be on it?
Posted 4/16/2015 3:54 PM (GMT 0)
I have been on Xifaxin for...uh...5 years now (yeah yeah, I know)? I know it has been in trials for Crohn's, and the results suggested that it tends to lose efficacy after 8 months or so. I read a paper ages ago that showed that when used in IBD patients it shifted the predominant microbiome species to those associated with healthy guts (sorry, I do not have the citation on me) - the effect was lost after stopping Xifaxin. My gastro and I have discussed that it probably isn't doing all that much for me at this point, given how long I have taken it, though we don't feel comfortable stopping it until I am in remission again (I did try, and it didn't go well).

(I find it somewhat ironic that I have been on an antibiotic for years when I'm a biomedical researcher and am quite vocal about antibiotic usage otherwise)

Try not to worry too much about Entyvio side effects. I had a headache after my first infusion (probably tension, but I do make a point of being well-hydrated before infusions now), and I get fatigue lasting 1-2 days starting 1-2 days after the infusion. That's it. And I have had some major side effects from other meds (though not to the biologics - though this has been the easiest biologic for me in terms of side effects (I was not a fan of the joint pain that came with Humira)).
Posted 4/16/2015 5:11 PM (GMT 0)
One thing I can tell you about the entyvio warriors group, that I've noticed and it may be inaccurate, is that it seems like A LOT of the people have Crohn's. I see UCers here and there but most of the posts come from people with Crohn's. Not to say their information isn't helpful but it may not be 100% in-line with the experiences of people with UC. Another thing, a lot of people have failed everything so we are talking about people with difficult to treat cases. I am one of them... I haven't had too many issues since starting Entyvio. Everyone is different. Hopefully it goes smoothly for you :)
Posted 4/16/2015 5:59 PM (GMT 0)
How long have you been on it and how long did it take you to notice an improvement?
Posted 4/16/2015 6:06 PM (GMT 0)
I am in the same state that I was in when I started it, but I wasn't in terrible shape then, so I am doing OK. I was able to taper off steroids and remain stable, and for that, I am extremely thankful. I go for #4 in a few weeks. Not really long enough to have huge impact from Entyvio, from what I've heard, but the results seem mixed. Some noticed results right away, others, it takes months.
Posted 4/16/2015 6:15 PM (GMT 0)
That's kind of how I am. I mean, I'm not in terrible shape compared to some. I still live a fairly normal life. Work, have fun, coach my kids in sports. I have 5 bms on a good day, 10 (sometimes more) on bad, but haven't had any accidents in close to a year. Very, very close though. I feel like I'm in no man's land. Could I live the rest of my life like this? Probably/maybe? Do I want to? Hell no. Am I willing to take such a drastic step as a colectomy to be healthy? Yes, I think. I know I'm an idiot to even say or think this, but I almost wish that I would either get into remission, OR get much worse so that the decision would be a no brainer. AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!
Posted 4/16/2015 7:48 PM (GMT 0)
I have been on Entyvio for 6 months now, after failing all other UC Medes.
I notice a real improvement in my health.
Down to 1 or 2 bMs a day , with formed stools.
Have more energy, and gained much needed weight .
Was stuck at 95 Lbs for the last 2 years, weigh 110 now!!
And it has kept me off Prednoisine. Yeah!! turn
Posted 4/16/2015 8:00 PM (GMT 0)
jacket, I don't think it's crazy. UC is very unpredictable. I can tell you that I certainly do not want to never travel because of this illness. If it came to that, I would have surgery. It's hard to make plans knowing your health may not be stable. I have a wedding to attend and it is stressing me out. Even though it's a year away, what if my UC decides to misbehave? Who wants to have that looming their whole life?

My GI said it's better to start when thing aren't terrible. I guess there's a better chance of healing and improvement. I have seen so many people start remicade when they were in dire straights and respond incredibly quickly and amazingly well so I never thought that this was the case. Did you try remicade?
Posted 4/16/2015 8:41 PM (GMT 0)
I'll agree with notsosicklygirl - Entyvio does not seem to be as effective for CD patients (and when it is, it takes longer to work, and a lot of CD patients need more frequent dosing). So, take my experiences with a grain of salt - I have CD, though it is almost entirely in the colon (pancolitis + the last 8cm of my terminal ileum, which may be "backwash inflammation"), I have never had fistulas, they've never seen granulomas, etc (we revisit the UC or CD question every couple of years and settle on CD due to that small bit of TI involvement and one instance of apparent skip lesions in one scope).

Also, this stuff seems to be better at keeping people in remission than actually getting them there, or getting people there from less-than-dire situations. I was a bit worse-off than you were when I started (Uceris by itself gets me to somewhere between your good day and bad day).

I hope your infusion went well!
Posted 4/16/2015 8:59 PM (GMT 0)
Thanks guys. Easy peasy. NSSG- I recently had to cancel my 10 year anniversary to Punta Cana because of this disease. I've tried Humira, Simponi, and most recently Remicade. Nothing.
Sloth- I'm actually much better than I was. I was around 20 a day at my worst. Imuran has been the one thing that has helped me some. I tried Uceris and it just didn't do it for me.
Posted 4/16/2015 11:09 PM (GMT 0)
you sound like me. None of those did anything for me either. I tried simponi and remicade but not Humira. I guess it's pretty common to give up on antiTNFs if you don't respond to two of them. At that point there is a pretty good indication that you don't have an issue with TNFs. I wonder what this means. Why do some people respond so well and others don't? Why do I have to be a nonresponder... :( It was the biggest drag when I didn't have immediate response to simponi/remicade. I always thought it would be my fallback, wonder drug for when I needed it but no such luck.

I hope you have good luck with Entyvio. I was on a high dose of pred for my lungs and on antibiotics and I snapped out of my awful flare up for the moment. I am so thankful to be okay for the time being.

I also didn't respond to uceris much this more recent time I took it. The first time I tried it, it worked almost as well as pred for me. The problem was that it's an 8 week course and my flare was not ready to quit after 8 weeks. After that course of uceris, it didn't work the same again. Granted, i haven't taken it very often, maybe 2 courses.. the first successful managing symptoms, the second, no improvement.

Do you have a family history of IBD?
Posted 4/17/2015 2:20 AM (GMT 0)
I seem to be lucky # 1! Well, sort of. My aunt has recently been diagnosed with some form of colitis. Not exactly sure what, but not ulcerative. My mom had stomach issues, but seems to be more IBS as nothing else has ever showed up. I'm an otherwise healthy person, and other than sports injuries, never had medical problems to speak of.
I worry daily about passing this awful disease to one of my kids. It's hard enough on adults, I can't imagine having to watch one of my children deal with this.
Posted 4/17/2015 2:47 AM (GMT 0)
jacket fan, just wanted to say i hope your infusion went well and you notice results quickly!!

i might have to start entyvio soon due to the simponi suppressing my immune system too much. i am not looking forward to infusions again. i really hate them!
Posted 4/17/2015 3:39 PM (GMT 0)
Thanks, Banana. I did not have a good night. Chills, night sweats, headache, nausea. I probably didn't hydrate as well as I should have. As soon as I chugged water last night, I felt a little better. Now just dealing with residuals today. Good news (I think) i can feel something happening in my stomach already. Not necessarily an improvement, but something is going on down there. I'm hoping it's the medicine starting to work.
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