Question re: Entyvio dosing schedule?

Hi all - longtime lurker, first time posting. I have some questions about Entyvio but first a little history.

My boyfriend was diagnosed with Ulcerative Colitis several years ago and managed ok until the most miserable flare started a bit over a year ago. In that time he has gone through just about every med option. He started with Lialda and pred, after a scope showed pancolitis they started Remicade which seemed to be helping until it just stopped (maybe 6-7 doses in?) They switched him to Humira and after 3 doses he ended up being hospitalized for fluids, IV steroids and pain meds.

One of the doctors he met with in the hospital (who is a GI from his doctors office, but not HIS GI) recommended stopping Humira and starting Entyvio, to hopefully avoid surgery. I was thrilled when he mentioned this because I had read such promising things about it. After several weeks of insurance frustration and ridiculous back and forth BS with the pharmacy he finally received his first Entyvio infusion today.

The nurse (I think?) who runs the infusion center explained the dosing schedule as zero, two and six weeks and then every eight weeks thereafter - straight out of the package insert. However, the GI who initially suggested Entyvio had explained the dosing schedule completely different - something along the lines of weekly for 4 infusions, then every 6 weeks? Something like that.

So my question - is anyone currently on Entyvio receiving it on a different schedule than the package insert directs? I'm just happy they have finally started it, but he was confused and a little worried that he was told such different things about it. We have such high hopes of this working to avoid surgery. I say "we" but really he is the one who is dealing with such scary possibilities. :/

Thanks so much in advance for any info. Since the first time he explained his disease to me I have learned most of what I know from reading your posts on this forum - so thank you SO much to everyone for sharing your experiences. I read here so often I feel like I know most of you already. This forum has been such a help to me.

Thanks for your response, Katmom. I must say the doctor who originally recommended Entyvio was very very excited about it as my boyfriend would be the first patient in the office to try it, so maybe he misspoke or just wasn't up to speed, who knows.

I've read many of your posts about your daughters experiences with UC and surgery - I hope she continues to adjust and improve with each step. :)

Hailtowhatever, just had to say thanks. I have had much personal pain and tried to help others as I can. This is a challenging disease; there is no end to the frustration. I will not be the brain behind cracking the code, but I do appreciate the thank you. I hope to add value to the discussion, tho I am often an echo.
Journey is still in process, like most of us here. Hang around and you will feel the camaraderie. Keep reading.... Insights await.

I am on Entyvio and am following the schedule from the packet 0, 2, 6, then every 8 weeks.

I have called Tekada (the Entyvio manufacturers) several times. They have always been friendly, helpful, and quick to answer the phone.

I do have a suggestion for you. Forget the infusion center. The original plan was to use an infusion center and at the last minute they decided they were not going to support Entyvio. A little frustrating but it ended up being very good for me. I had a home healthcare company dispense the Entyvio. They deliver all the supplies and the drugs to the house. The nurse makes an appointment and shows up. No fuss, no muss, no frustration.

I believe the company I am using is Nationwide. I can give you the information if you like.

Another recommendation for the FB group Entyvio Warriors - a lot of people on there (really nice people, high traffic forum, etc).

I've had four infusions - at 0, 2, 6, and 14 weeks. A lot of folks in the trial had every 4 week dosing after the induction phase, and if it hasn't been approved for every 4 week dosing yet, I expect to see that soon (much like the standard dosing for Remicade being every 8 weeks, but you can raise the dose and take it every 6 weeks).

Can't give any comment re: infusions at home. I get mine at the hospital, down the hall from my GI's office.

Good luck! I'm starting to see some improvement (mild, but I'll take it) and my energy levels have skyrocketed, so I'm hopeful.