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Entyvio every four weeks?

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Ulcerative Colitis
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Posted 3/14/2015 4:41 AM (GMT 0)
Has anyone ever had their Entyvio infusions every four weeks instead of eight? I feel like its effects are wearing off, and I'm about five weeks since my last infusion (it was the last loading dose). The FDA seems to say that every four weeks does not change the clinical outcome, but other papers I've looked at say it may help. One doctor I went to for a second opinion said it would be fine to do it early, but my regular GI won't let me do it--he says there's no evidence that it will help. I feel that as long as it doesn't hurt me, it is worth trying. I'm trying to decide if I should ask again more forcefully or just stick it out despite my worsening symptoms.

Elisa
Posted 3/14/2015 1:23 PM (GMT 0)
I follow the fb group entyvio warriors and many of them have gone to every 4 week infusions.
Posted 3/14/2015 4:16 PM (GMT 0)
I don't think many people here use it. I am on the entyvio warriors group too and while the people are very nice, and all are using entyvio, it seems like a lot of them have Crohns and not uc. They also have a lot of bad side effects which is scary. I haven't really noticed any terrible side effects from entyvio luckily. I was scared from reading there...
Posted 3/14/2015 4:49 PM (GMT 0)
I have been getting it every 4 weeks for a little bit now, but only because my doctor did not see any improvement at 8 weeks so wanted to try every possibility and see if 4 weeks would make a difference. Not much difference noticed unfortunately but it seems to me that if entyvio has been working for you but seems to wear off, it may help you to go to 4 weeks.
Posted 3/16/2015 2:48 AM (GMT 0)
Thanks for the replies--I'll use them as ammunition when I ask--beg--my doctor again to let me do it sooner. :)
Posted 3/16/2015 6:45 PM (GMT 0)
Do check with your insurance company. As the official approvals were at 8 week intervals, they might consider changes as experimental. Would hate to see you on the hook for the full price of the infusion.
Posted 3/16/2015 7:50 PM (GMT 0)
Ditto check with your insurance company.
I asked about moving the Entyvio infusions closer than 8 weeks.
No way would Medicare pay for that , my nurse said it's very expensive.
It would cost a fortune to pay for it on your own I HAVE had 5 infusions so far my U C has calmed down .
Less trips to the potty, formed stools . And I have put on weight
I was down to 95 lbs now weigh 110!! Much better for me turn
Posted 3/18/2015 2:47 PM (GMT 0)
Just saw this - there was some info in the trials that a subset of patients who responded to Entyvio lost response once they went to every-8-weeks maintenance dosing, but regained response when dosed every 4 weeks (and a lot of the trials were apparently run with every-4-week dosing). I verified this with my gastro when I saw him in January.

I just had my 6th infusion on Monday. I couldn't say, definitively, that Entyvio was helping me until after the 5th infusion. However, I did backslide a bit between infusions (at the 6 week mark, though it wasn't drastic). My gastro has mentioned that we can petition for more frequent dosing if we decide that I need it (though I know a lot of folks on the FB group have had that denied by insurance). For now, I decided to see how things go after this infusion, and take it from there (I'm not in remission at this point - I can just say that I have had a response...frequency and urgency are down, consistency has improved, seeing much less blood, energy levels have gone way up, and I've gained weight for the first time in years).

I take the posts on Entyvio Warriors with a grain of salt - as others have said, the people most likely to post to online support groups are those having difficulty. For what it's worth, I have very minor side effects (mainly 1-2 days of fatigue, and sometimes a bad gut day 1-2 days post-infusion).
Posted 3/18/2015 6:31 PM (GMT 0)
I just got a statement from Medicare they were billed $17,574.00 for one infusion of Entyvio !! They approved it , isn't that incredible?

No wonder it's tough to try and get it every 4 weeks .
I am getting it every8 weeks and notice a lot of improve in my UC turn
Posted 3/19/2015 2:36 AM (GMT 0)
I am in the Facebook Entyvio Warriors group as well and currently waiting on insurance approval. I'm just in a mild flare and don't know if I should really start Entyvio for it yet. Feel like I should save that option for when I am more severe :(
Posted 3/19/2015 5:21 AM (GMT 0)
Thanks everyone! I'm actually doing better now--I stopped the mesalamine enemas, and things immediately got better--less blood, less frequency, less urgency. I'm still going to talk to my doctor about it tomorrow, but I'm feeling much less desperate. And if I do do the next infusion early, I will definitely check with my insurance first.

Elisa
Posted 6/7/2015 2:51 PM (GMT 0)
I have had 4 Entyvio infusions and really no improvement or side effects. My doctor just submitted to my insurance company to change me to every 4 week infusions. Hopefully it is approved because the current plan isn't working.

Interestingly I went from Humira to Entyvio without doing Remicade (Doctor gave me a choice of Remicade and Entyvio and we agreed on Entyvio). I wonder if I can try Remicade if Entyvio doesn't work. Anyone know?
Posted 6/7/2015 6:08 PM (GMT 0)
I am sure you can. Did you have a good response to Humira? If not, maybe your GI thought you were a nonresponder and wanted to try something completely different like entyvio. I would definitely try remicade regardless, it has the highest success rate.
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