Entyvio

I was prednisone dependent almost 3 yeas ago . Failed all of the Med s out there ten Entyvio came on the market
It has been a savior fr me
I have a life , get an infusion every 8 weeks
Not effect stillhaeto watch what I eat as do most people with UC

I'm on my 3rd week of prednisone. Started at 60 mg/day, now down to 30. I think I still have 5 more weeks unless the doc decides to leave me on longer to give the Entyvio a start. I won't have a start date for Entyvio until next week, I think. Just got word today (from Entyvio that I wouldn't need their paitient assistance program since Medicare was going to pick it up), but my GI's nurse is out of office until Monday, and I haven't heard yet from the hospital about the infusion. I hope to start next week maybe, but that might be too early to get it all arranged.

I hope the Remicade kicks in for you soon, Doggiedo!

Hope you are doing well still! Yes, I'm happy -- I think. But already 2nd guessing. Now worrying that since it was the Entyvio people that called, that maybe they just *think* the insurance is going to cover it. Hopefully I will hear tomorrow from the nurse. If not, will call insurance myself and see what they say.

So good to know! Glad it has helped you. I still don't know if I'll be able to afford it or not. Apparently Entyvio Rep didn't convey the information to me quite correctly. I think she was saying it *should* be covered by Medicare and so I would not be in their assistance program. I don't think Medicare has approved it yet or if they do, it might be only for the cost of the infusion and not the drug itself, which is what I can't afford. Haven't heard from the dr. yet, but I have an appt. next week so I guess I'll just wait. I'll pick Remicade over Entyvio if I have to pay for the Entyvio -- even with a Part D plan, it would probably be over $10k a year, whereas Remicade would be about half that. Just wish the insurance industry wasn't so ****ed up. They're making money, the drug companies are hauling it in, and us poor suckers are going to the poorhouse over it. GRRRRRR! //rant over//

That may have been the way it used to work, not so sure now. Epi-pens are a fine example of that.

Anywho, I finally got word today. My 1st Entyvio infusion is scheduled for next Wed. Here's hoping I finally see remission. Still haven't got 100% confirmation on a cost for out of pocket. Hoping to get that cleared up at the Dr on Tues at my follow-up.

Thanks, iPoop! Got my fingers AND toes crossed! A little nervous (which I'm sure will increase as Wed. approaches), but excited, too.

Just got finished with my first Entyvio infusion. Still no official word on if I'll be out of pocket for any costs. All I get is "usually" it's covered. We'll see.

No reaction, no problems except I have awful veins so it took 3 pokes to get the IV going. Very quick, though, 30 minutes to tranfuse, so I was there an hour. I go back in 2 weeks for the 2nd, and then I believe it will be another 4 weeks, and then after that, the dr. has conflicting orders, so I'll need to get that straightened out on my next visit.

Started showing mild symptoms yesterday, so the doctor kicked my prednisone back up to 30 mg a day. I'll be starting the Uceris foam as soon as I get the cost and payment straightened out with Salix, since I'm already on their patient assistance program for my Apriso. Had blood yesterday, but formed stool, and minor intermittent cramping and pressure today. Hoping Entyvio works -- and quickly!

add me in too as a groupie that is hoping for good Entyvio results for you.
My Doc mentioned at the beginning of this flare that we may eventually we may need to get aggressive with the meds - so thoughts of the "hard" stuff has swirled in my brain. He sent me home with pamphlets for a couple of the meds and I'm just ignoring them for now.
I will be following your progress to see how ya do and how you respond. Wish you the best of luck topped with ala mode

I started Entyvio September. 29, 2016 and have received infusions every 4 weeks instead of 8 weeks, after the first 3. There is progress but not remission. A good day is 6 bms, a bad 11 to 12. Occasional blood spotting and mucus, as well as cramping. Was allergic to Pentasa and tried Prednisone for 6 weeks but remission was only for an additional 6 weeks. Was lucky to get on Entyvio. (I'm in Canada). Taking Omega 3, Vitamin D (5000 I. U.), turmeric, ashwaganda, boswelia, Regenifree, Physillium (if diarrhea), and lately added GBF (germinated barley foodstuff) which has had immediate beneficial results in normalizing stools. I am patient about Entyvio as some people take longer to achieve remission. I cut out milk but eat some cheeses. I am also staying away from sugars, including starches.

Skrupsoer, are you only on entyvio? You should add immunomodulators to it: azathioprine/imuran or 6MP.

Yes, I hear mixed results on Entyvio. Thanks, Bull for the info about improvement after 2 infusions (after loading doses)... will watch for that.

Skrub, hope you find something that helps. 6 bms on a good day doesn't sound all that great!

Thank you Bull101! I have looked online for what to expect with Entyvio and basically can't find anything.

I've had my 2 starter doses and one more. Next week will mark 12 weeks since my fist infusion and i'm starting to loose hope. I just want to know where I stand and where to go from here. Next infusion/Drs appointment is end of April and I guess we'll evaluate then.

I have maybe 2 "good" days a week - 5 bad ones. It's not like with Remicade where 2 months in I could feel a change and knew it was going to work. I think I may have developed the antibodies.

FlowersGal: all the best! I haven't had any reactions to Entyvio at all, other than feeling tired after each infusion which a nice long nap takes care of ;)