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Seeing GI today, requesting to try Entyvio (vedolizumab)

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Ulcerative Colitis
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Posted 5/29/2014 4:47 PM (GMT 0)
After nearly a year on Simponi with some minor improvements (went from pancolitis on scope to inflammation only in the rectum and sigmoid) but still too many bathroom trips and terrible pain/gas/mucus when I go, I will be asking my GI to take whatever steps towards starting Entyvio.

I assume I may be one of the first here to try this new drug, if it is even available yet, or maybe a few weeks until it is physically on the market. Yay for being on the cutting edge.

Hopefully this will provide me some relief, as with this rotten case of proctitis I've faced and being unable to use mesalamines there have been very few options for me.
Posted 5/29/2014 5:14 PM (GMT 0)
I don't think it's actually available right now.  It normally takes some time before it actually hits the market.  I've heard the beginning of July is the estimated launch date.  Also, make sure to contact your health insurance provider to make sure it has been added to their covered medications list.  Good Luck!!
Posted 5/29/2014 8:51 PM (GMT 0)
Doc said he was thinking about this drug for me, but that the pharma reps haven't made their way to his office to sell it yet. I'll be waiting for his call once they do...in the meantime I was told my symptoms "don't sound that bad, just grin and bear it until then"...sigh...
Posted 5/29/2014 9:16 PM (GMT 0)
I'm on the list for this also...the reps were at my gis office the day after it was approved. He's trying to get it ASAP but it's not available yet....he wants me to call on Monday to see what the status is.
Posted 5/30/2014 10:24 PM (GMT 0)
UCHater: can I ask what State/Country you are in??? Sounds like they are being very proactive in getting it out there for us. My GI is now talking Biologics. I live in NY state so was wondering.

Thanks,
Gail
Posted 5/30/2014 11:01 PM (GMT 0)
I'm in nj but I'm seeing a gi in ny (near mt Sinai hospital) for this.

He's had a few people on trial for this and he said they're doing really well, he was going to introduce me to one of them but I just missed him the day I was in.
Posted 5/31/2014 7:19 PM (GMT 0)
It (vedolizimab) is already in our GI's office in Chgo and was in Miami also, probably because they were test sites and are still administering it to test folks-letter writing to the insurance company is the hold up. Doc 's office is doing that this week, and I already contacted them last week. No response yet. Fingers crossed for approvals-have no idea what will or won't be covered. I understand it might not be fast acting for some, so we may all need a bridge to get it to truly work.
Posted 6/1/2014 7:53 PM (GMT 0)
My doc expressed the same notion that it takes a while for it to start working. I'm really debating whether or not to do a round of prednisone to be the bridge. Took me months to taper off the last little bit last time, but I'm really needing some relief...
Posted 6/1/2014 9:47 PM (GMT 0)
That may be a good option but you don't have to take it for months, unless the vedolizimab won't be available for months. You would also have to factor insurance into the equation. It's doubtful that in most cases your insurance will just automatically cover it the minute it came out. Some insurances may not cover it for months or years or at all and even if it does cover it you may have a sky high out of pocket costs. My insurance makes me pay a 25% copay on some of those really expensive things, which I'm sure vedolizimab will be. In that case it wouldn't be economically feasible to pay 25% of thousands of dollars on a regular basis without help from Big Pharma.
Posted 6/2/2014 4:06 PM (GMT 0)
My Simponi isn't clearing me up 100%..seeing my GI on 6-4 to ask to be put on the list too (Chicago area as well)...

Interesting that all the Simponi users I see here aren't really cleared up 100%.....same thing, cleared a lot up but the Sigmoid is still stubborn...
Posted 6/3/2014 2:43 AM (GMT 0)
Simponi isn't working as well as Remicade did for my daughter. She's noticing hair loss, and headaches, and is flaring in between shot 3 and 4. Beginning to respond to #4, moving the dose up is worrying us. Dr suggested 2 weeks.

Dr also didn't seem open to Vedolizumab, like it wasn't coming so soon.
Kind of left us up in the air .

Wonder if is not what we were hoping for, or is it caught up in red tape?

Thanks for any information.
Posted 6/3/2014 2:57 AM (GMT 0)

rey said...
Simponi isn't working as well as Remicade did for my daughter. She's noticing hair loss, and headaches, and is flaring in between shot 3 and 4. Beginning to respond to #4, moving the dose up is worrying us. Dr suggested 2 weeks.

Dr also didn't seem open to Vedolizumab, like it wasn't coming so soon.
Kind of left us up in the air .

Wonder if is not what we were hoping for, or is it caught up in red tape?

Thanks for any information.

Theres no reason Vedo shouldnt be out within the next few weeks. From what Ive heard, it should be out near the beginning of July, maybe by the middle of it at the latest. The company that makes the drug is obviously going to do everything it can to get it on the market ASAP so that they can finally make some money off of it.

What your GI might be worrying about is the whole issue of insurance. That may be something you want to look into and discuss with him/her : )
Posted 6/3/2014 3:26 AM (GMT 0)
It's an infusion? Not a injection like Simponi . I'm in the same boat, feeling better but not 100%. Still have urgency with some rectal inflamation. Would like to see if some people on forum have some success before ditching Simponi . Simponi is better then Humira . The idea of an infusion is holding me off to the idea for now.
Posted 6/3/2014 3:30 AM (GMT 0)

Faithmac said...
It's an infusion? Not a injection like Simponi . I'm in the same boat, feeling better but not 100%. Still have urgency with some rectal inflamation. Would like to see if some people on forum have some success before ditching Simponi . Simponi is better then Humira . The idea of an infusion is holding me off to the idea for now.

The infusion is only 30 minutes long. Itll probably take you longer to get to the clinic than it will to get the infusion
Posted 6/3/2014 3:37 AM (GMT 0)
My GI hasn't heard of it yet. I guess he's not up to date on the new drugs out . I'm the only one he has on Simponi . Drug reps haven't reached my part of Florida yet. Asked about it last Thursday when I was there! Might have to wait a bit.
30 min infusion doesn't sound bad. Spoiled with the self injections.
Posted 6/3/2014 4:35 AM (GMT 0)
We found out vedo is available for sale starting today and the only road block is insurance. There are two forms to fill out and sign (by the doctors office) and takeda will help your doctor work with your insurance company to get it approved. Cost is just under 5k/vial (300mg I think they said), no idea of the dosing requirements per person though, forgot to ask that.

Insurance can take 30 days to approve but you can bet we'll be pushing them to do it quicker if we can.
Posted 6/10/2014 12:27 AM (GMT 0)
It doesn't seem like we will be able to have the Simponi moved up,
Since it's not working well should the effort be put to getting the Vedolizumab?
Thanks
Posted 6/10/2014 2:08 AM (GMT 0)
might as well start the process now rey... and if simponi starts working, then atleast your insurance is ready if you do need to get onto Entyvio.

How exciting to see a drug I've heard and read so much about, actually come to market. Unfortunately... if would probably be available in my state, the same day I'm getting my colon removed. Not quick enough Vedo (entyvio!)
Posted 6/10/2014 2:48 AM (GMT 0)
I know about half of what I should know to provide an informative post.
Vedo is available this week. BCBS -ppo told me that Entyvio was on the formulary list, so good news for me. One of our docs told us it was available sooner than most because of the work they did to get it. Unfortunately, my D is on internship,so the non- hardworking docs from another city are in charge...and it is still possible this week.
As some of you know, we are at the end of most drug options, so really have fingers crossed for this one.
Infusion time good, profile good...let's be hopeful.
Posted 6/10/2014 1:36 PM (GMT 0)
Just called my specialty pharmacy Caremark . It's not available yet. They said it could take about a month.
Posted 6/10/2014 1:50 PM (GMT 0)
The standard dose is 300 mg. The manufacturer's page is informative:

general.takedapharm.com/content/file.aspx?filetypecode=ENTYVIOPI&CountryCode=US&LanguageCode=EN&cacheRandomizer=e5cee576-3ef3-4214-9962-26965f3321d9
Posted 6/10/2014 8:22 PM (GMT 0)
My GI's office called today and said they had talked to my insurance about Entyvio. She has also called patient assistance for me and is sending me paperwork. I feel like it is moving forward but no set date yet.
Posted 6/11/2014 4:17 PM (GMT 0)
Good luck pink I hope we're close behind you.
Posted 7/2/2014 4:20 PM (GMT 0)
Simponi is rapidly failing me and I am hoping that my Doc won't argue with me about Vedo. I saw him several months ago and he said there was another drug coming (Tysabri is the only thing I haven't tried so I was out of options and the Simponi is crap) but it didn't work for Crohn's (I'm usually on the CD board, but this post caught my attention) so he wasn't interested. Well, buddy...it's my gut that's jacked up not yours and I'm ready to start feeling better! Anyway, I see him on Monday and fingers crossed. Since the OP on this is older- has anyone else been able to start Vedo yet??
Posted 7/3/2014 10:40 PM (GMT 0)
Doc called today to say Entyvio still isn't available because "insurance won't cover it". Their infusion center won't stock it because it is too expensive. I asked about the patient payment assistance from the manufacturer but she still said the infusion centers don't want to carry it because of the cost. I don't understand why the doc can't just write the script, try to run it through the insurance and see if they will cover it and then the infusion center orders it from a specialty pharmacy. I have failed every other drug and have the best available BCBS plan so I figure I have a good shot of them covering it.
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