Starting Entyvio

Medicare didn't make me try another biologic. I think you can ask your doctor to write them a letter/appeal the decision? Does your state have an insurance commissioner? I do know that I was required to go to a hospital for my infusions, as then they're covered by medical instead of the prescription side (I have separate supplemental and prescription coverages).

You can definitely appeal. Problem is that it just adds more time until you can start getting better.

I failed Humira recently and started Entyvio last week. My clue that Humira wasn't a long term med for me was a pretty impressive flare, including bleeding which is unusual for me. My GI put me on prednisone for the flare and the IBD specialist who put me on Humira switched me to Entyvio.

So far, so good. No noticeable side effects from the Entyvio and I've been able to taper the prednisone down faster than I expected without flaring up again. I was on 40mg/day two weeks ago and now I'm down to 15mg. I know that it's too soon to expect any clinical benefit from the Entyvio but at least I'm not getting worse.

I had such high hopes for Humira. I guess my UC just wasn't TNF mediated.

I hope entyvio is both of your ticket to remission!

Glad to hear others are having success!

Had my infusion last week, all went well. I have a scope in a few weeks so that'll be fun to see (hopefully!) clear results. No other updates other than doing very well (just a touch of IBS here and there). I am also starting to explore the possibility of pregnancy on Entyvio. It is a few years out from happening, but my partner is also on Remicade, so there are lots of discussions and decisions to be made (including if we will ever even try given all the factors). But, from what I learned from my GI, lots of babies are being born on it and doing well, should anyone else here possibly have that in their future.

One questions--has anyone received a vaccination while on Entyvio? I opt out of yearly flu shots, but I am overdue for a Tetanus booster and considering getting it during my annual.

I have been neglecting this thread!

Still going strong on Entyvio (knock on every piece of wood in sight). My last infusion was a bit rough only because of the saline bag shortage--I could not get my usual extra 250ml hydration, and boy did I feel it the next day.

The scope I was supposed to have last summer never happened for scheduling reasons, so my next infusion is 1/31 and then I'll have a scope 2/13 and will report back on clinical results.

However, solidly in remission. I'm taking a big leap and living abroad for 6 weeks this year (I had to drop out of study abroad in college due to UC, so this has been a dream) and so fortunate Entyvio is giving me this ability.

Instead of the TDAP I mentioned before, I am planning to get a Hep A vaccine and while I was told it doesn't matter, I am spacing it 4 weeks out from my infusion for my comfort. My GP worked with me to determine that while I'm due for a TDAP, because I don't have/work with kids it's not a priority and she would rec Hep A over the TDAP, given she knows that I'm weary to rock the boat in any way--and I can go get a tetanus if needed (also knock on wood!). Still feeling a bit nervous about it, of course.

So, that's where I am! Hope others are seeing new or continuing success.

Happy for you, congrats! I always like reading success stories.

So nice to hear that you've been in remission for this long! I've wondered how long remission with entyvio can last, since there's not a lot of data yet, so YAY! Thanks for the update!

Learned that my insurer declined Entyvio before Remi/Humira. My doc mentioned both the application and appeal were declined within a three week window. From anyone's experience, how long does an appeal usually take? Bummed and now considering options. Really don't want to take Remi or Humira which seem to affect the whole body instead of just the gut!

Been a few infusions since an update! Still 100% in remission (knock on every piece of wood in sight). My office has sped up the saline part of infusions a touch (to what I think is more standard, and they’ve also sped up remicade infusions to match other center’s standards, apparently we were super slow!) and that does seem to make me a bit more fatigued (I still can’t get extra hydration after) but besides that all is well!

As I’ve hinted at before, still considering pregnancy on it. Will be a year at least before we start trying if we decide to, but I will create a new thread then to share that info and experiences. Would love to hear anyone else’s experience if they have one.

Isn't remission wonderful? So happy you're living life without UC first thing on your mind (it never completely goes away, does it!) I am also doing really well on Entyvio. Had a scope in August but haven't gotten my biopsy results yet. The visual report from dr. was rather confusing, it did mention inflammation although he told my husband there wasn't any. So that reminds me that I need to call them today and have them send it the report to me as I don't go back to the dr. until the end of the month.

But for the most part, I am really well. I still have days when I tire easily and every once in a while I'll have a little bit of urgency. I have my 13th infusion today! I don't get saline with my infusions, and they don't bother me one iota. I might get a little bit tired, but not bad enough to write home about. So yay for biologics!

Just checking in!

Still in remission, though have been having indigestion flares (mostly nausea) though I attribute that to my very loose diet I allow myself being in remission. Will be reigning in my sugar intake, as I think that's the culprit.

Just had an infusion yesterday. Early on, I had been getting additional hydration to help with headache and fatigue--that stopped with the saline shortage, and I had most been fine except for the past few doses. This one hit me hard, and I am extremely fatigued and have a headache today. Just messaged my doc to ask for extra hydration next time, so hopefully that helps. Worth asking for anyone dealing with these side effects! Really helped me in the past.

My first infusion was March of 2017 (I think? The years are flying by but I have my 16th infusion today so that year must be right?)

Also in complete remission confirmed by colonoscopy last month. I too think sugar is my culprit. Having my favorite Starbucks mocha will often send me running for the toilet. But otherwise no blips really and I eat pretty much everything I want. I try to eat healthy and do for the most part. But I don’t hold back unless I get a blip from my tummy or gut.