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Flex-sig today, gotta make an rx decision by Monday

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Ulcerative Colitis
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Posted 7/4/2014 3:28 AM (GMT 0)
Been dealing with a moderate flare, had a flex sig this afternoon, rectum and sigmoid are inflamed, doc went in about 20cm.

Put on prednisone 40mg now which is good, it will help get the flare temporarily under control.

I've been on remicade for 3-4 years and due to high stress I still get a flare every year or year and a half.

Doc wants to either raise my Remi dose from 7.5 to something higher or try entyvio.

What would you do? I'm leaning towards the latter.
Posted 7/4/2014 12:47 PM (GMT 0)
Tough decision since once you stop Remi you can probably never do it again. This wouldn't be good if the higher dose would have worked and entiyvio doesn't work. If it were me I think I would try the higher dose of Remi first. If that didn't work then it wouldn't matter if the Remi didn't work and you could move on to the other. I don't know anything about Remi dose amounts though. I assume the dose he is talking about is the max dose. If I hadn't been on Remi I would pick the entyvio in a heartbeat.
Posted 7/4/2014 1:01 PM (GMT 0)
Are you intolerant of mesalamine? If not, why not put a mesalamine enema to use in addition to an increased dose of remi?
Posted 7/4/2014 1:12 PM (GMT 0)
7.5 mgs a kg is a fairly high remi dosage is that every 8, 6, or 4 weeks? Your only choices with remi are move the infusions closer together (every 6 or 4 weeks at the same dosage) or you could try 10mgs per kg of remi at a max of every 4 weeks. Have you built up any antibodies to remi (tested with Prometheus labs anserfx test)?

Entvyio is an option, just expect more hassel with your insurance company, and finding a place that administers it. It's new.
Posted 7/4/2014 1:25 PM (GMT 0)
Thanks for the replies.

@gary -- That's good advice, I'll consider that.

@kazbern -- Not intolerant, I take 4 Asacol HD every day (3200mg total), I'm not crazy about the enema approach either.

@iPoop -- The 7.5mg is every 8 weeks. That's another question i'll ask, moving the intervals to shorter periods. Before I bumped up from 5 to 7.5 about a year ago, I did a Prometheus anserfx test that showed my levels were good. The reason why I haven't tested w/ Prometheus recently is because they billed me $2500 for the lab test and my insurance company (Aetna with a 100% coverage in-network and out) claimed it was experimental. I gave the bill to my doctor and he gave the Prometheus rep. an earful. Obviously, I never paid it because that's extortion, but my doctor just told me after the 3rd appeal, Prometheus will only charge $250. Since i'm in NYC and get my infusions done at Lenox Hill, they most likely already have been administering it, their infusion center is massive.
Posted 7/4/2014 3:43 PM (GMT 0)
That's a pretty crazy insurance story, I am happy you didn't have to pay. I think I agree with gary's advice. Maybe see about increasing or making the appointments closer together if they will allow it. I think some people go every 6 weeks instead of 8. The question is, do you feel great right after the infusion and it wears off? In that case, I could see the quicker infusions helping, but otherwise, you may not see any benefit. I am in a similar boat. I think i am going to try simponi. I am scared of humira because I've heard the shots kill and I don't really want to go for infusions. Plus simponi has a copay assist that makes the shots $5. Sounds pretty good to me. I hope it helps. Why did they start pred over uceris?
Posted 7/4/2014 5:56 PM (GMT 0)
Definitely dont drop Remi if its working for you; ride that horse as long as you can. Think of Vedo as a last resort because at the moment, thats what it is. You always want to keep options open as long as possible!
Posted 7/25/2014 12:13 PM (GMT 0)
Just an update -- did the AnserIFX test and my levels were low. I did 10mg remicade dose for the first time yesterday afternoon.

How long does it start to work for you? I think I feel slightly worse this AM.
Posted 7/25/2014 1:32 PM (GMT 0)
Good you got your answer through the remicade levels test. Some report feeling better during the remi infusion, the next day, for me it is about a week after. Varies wildly. Hope that does the trick for you. If not, you still have the Entyvio option.
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