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Crohn's Disease Forum » Treatment » Entyvio/Vedolizumab » Entyvio (Vedolizumab) Support Group


 
07-08-2014, 02:09 PM   #31
dd3759
 
Join Date: Jul 2014
Location: alpharetta, Georgia

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has anybody had trouble with blue cross blue shield getting entyvio approval?
07-09-2014, 06:13 AM   #32
kromom1
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Sorry, don't have Blue Cross/Blue Shield. Good luck to you.
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Lisa

Diagnoses: Crohn's 8/07; steroid-induced diabetes 11/07; Remicade-induced Lupus 02/09, shingles 7/10, and hypothyroidism.
Medications: Entyvio, Methotrexate, prednisone, Protonix, Synthroid, fish oil, calcium, multivitamin, glimepiride. Failed Pentasa, Entocort, Humira, Imuran, 6-MP, Remicade, Tysabri, and LDN.
07-13-2014, 02:15 AM   #33
wowdew86
 
Join Date: Jul 2014

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I read that it has a half life 0f 25 days. im going for my first treatment and been doing a lot of reading cause im nervous cause of my reaction to remicade also almost killed me. I live in Alaska on an island of 10000 people so were really small. lately been going to uw in seattle for all my treatment but im 27 and got diagnosed in 2006 and been terror ever since lost 15 ft of my intestines so far with 3 surgerys for that with 2 hernia repairs and my gullblatter removed. I also have something called hydradinitis suprativa not really sure how its spelled but their a lot of fistulas on my buttocks and they gave me a colostomy for life cause they wont heal up and the multiple surgerys on my buttocks for them just did a lot of damage to my sphincter. im going for surgery to remove the rest of my butt hole in sept cus they say its the only way to heal them completely.. I see doctor alasndro fachera orinally from university of Chicago crohns center hes really awesome. this is my first time finding somewhere we can talk about this stuff.. its been really hard suffering everyday not having any good days takes a lot out of u. im really happy u guys are all here and and im not alone in this world. I hope everyone that is gonna try this I pray it works for u and me. hey they say the more positive u think the more positive stuff happends even though through all the hardship streak I been on for yrs its hard to think positive but keep trying never give up. KEEP THE FAITH
07-13-2014, 02:45 PM   #34
joy4
 
Join Date: Jul 2014

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We've been trying to get insurance approval for 3 weeks now. Starting on our 4th. Insurance says its not an approved drug until it's on the market for 6 months. We've appealed, but not heard anything yet. (Anthem BlueCross Blueshield).
07-13-2014, 03:27 PM   #35
wowdew86
 
Join Date: Jul 2014

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Sry ur haveing trouble with insurence. Just incase here is a number for disability lawyers their very good and fast got mine in 6 months and u dont pay if u dont win and if u win they take it out of the winnings and u get ur disability medicade which will cover this medication. 1 (800) 940-5602. Just try and give them a call and hear them out their fantastic.
07-14-2014, 08:05 AM   #36
Rockdawg
 
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Join Date: Nov 2012
Location: Charlotte, North Carolina

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I have been waiting a month now (Blue Cross Blue Shield)...I REALLY don't want to have to wait another 5! I am in North Carolina, by the way.
07-14-2014, 06:37 PM   #37
kromom1
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I got my first infusion this morning. It was very easy, took 30 minutes, then had to wait 30 minutes to make sure there wasn't any reaction (the nurse said I wouldn't have to do that next time). The only thing I felt during the infusion was a slight aching in my arm, but I think that was due to the medicine being so cold and going into that arm. When I got home, I felt really warm, slightly dizzy, and had a slight headache, but that all cleared up in a few hours.
07-14-2014, 09:31 PM   #38
Dee71
 
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Join Date: Jul 2014
Location: Villa park, Illinois

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Kromom1 the reaction you had to remicade is awful! I am so sorry you had to go through that and glad you pulled through! I am glad to hear that you finally got your infusion and it went well! I also had the ache in the arm I thought it also had to do with how cold it is and how fast they push the med.

Those asking about blue cross ins - I have blue cross illinois and it got approved in about 3 1/2 weeks. I did not have any pushback from the insurance. I have a high deductible ppo. I wonder if it is harder to get approved if you have an HMO?
07-15-2014, 12:03 AM   #39
awill07
 
Join Date: Jul 2014
Location: Chicago, Illinois

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Hi Dee
i will be taking my 3rd dose of entyvio in two days that will be my week six. I haven't had any improvement yet but am told that improvement usually starts between week six and week ten. I will try to keep you posted on any improvement in the next few weeks.

Awill07
07-15-2014, 07:46 AM   #40
Rockdawg
 
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SO excited!! Just heard from the doc that approval should be within a day or two! I will let everyone know once I get started.
07-15-2014, 11:23 AM   #41
kromom1
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Thanks Dee71!

Yay, Rockdawg - happy for you!
07-17-2014, 05:28 PM   #42
mendysue
 
Join Date: Jul 2014
Location: Madison, South Dakota

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Hi all new to the site just started discussing Entyvio with doctor but worried because I am positive for the JC virus-I have antibodies to the usual TNF agents tried humira remicade Imuran currently now on Methotrexate which I thought was going to be great but CRP going up symptoms increasing and now developed fistulas ugh so very tired from it all I do not know that my body can handle steroids again got diabetes from the last time
07-17-2014, 05:59 PM   #43
malmer7
 
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Join Date: May 2014
Location: sacramento, California

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I'm excited to say that blue shield approved Entyvio for me quickly, less than a week. I'm tentatively scheduled for my 30 min infusion (how great is that?) on Tuesday the 22nd. I say tentative because my GI is on vacation this week and he still needs to approve since it will have only been 6 weeks since my last Remicade infusion... He is hesitant about mixing both meds in my system and I don't blame him, but during my Stanford consult the doc didn't seem as concerned so we'll see. This HAS to work or I will be begging for surgery... I'll keep people updated as I find out if Entyvio ends up being all it's cracked up to be.
07-17-2014, 06:32 PM   #44
Patrice
 
Join Date: Jul 2014

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I am also JC positive & I have recently started the Entyvio.
I was told nobody in the trials got PML. I was also told
Entyvio has less chance of PML because it is targeting
the gut instead of the nervous system which Tysabi does. I also have
B/C for insurance & I was approved within a day. Hope this helps.
My 2nd infusion is Monday.
07-19-2014, 01:43 AM   #45
mendysue
 
Join Date: Jul 2014
Location: Madison, South Dakota

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Patrice hope you do well-I am just so worried about the PML thing-how mant have had fistulas and what things were used to try and get rid of them ad what was successful thanks for input
07-19-2014, 02:01 PM   #46
aimeey17
 
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Im getting ready to start this. Has anyone had any or heard of anyone's experience with this med and Crohn's fistulas?
07-19-2014, 04:16 PM   #47
stargazer
 
Join Date: Jan 2011
Location: edmonton, Alberta

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Hey guys, Ive been on this drug in study for over three years now. It has been a life changer for me. Biggest side effect for me has been headaches after the infusion and only on the day of. I also find myself tired sometimes however this could be partially becayse it is a bit of work to get an IV going on me. It is worth checking into for sure! I have been told its going to market in the fall, I think 2015?
07-19-2014, 08:25 PM   #48
nogutsnoglory
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It's on the market now as of a few weeks stargazer. Glad to hear it's a great success for you.
07-20-2014, 06:04 AM   #49
lgpcarter
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Join Date: Jun 2013
Location: Canada

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Not on the market in Canada, unfortunately. Health Canada typically wants to see some Canadian data before approving and tends to be more conservative with their approvals than the FDA.

Saw my GI this week and he said a big maybe for January 2015 for Canadian approval and perhaps only colitis and not Crohn's as the data isn't as strong.
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Diagnosed in with Crohn's in large and small bowel in 2000.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 4 weeks, Imuran 50 mg, Flagyl and Cipro 500 mg twice a day
Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone
07-21-2014, 01:56 PM   #50
Patrice
 
Join Date: Jul 2014

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Stargazer, if you don't mind me asking do you have UC or crohns? Also how long did Entvio take to start to work for you? I have crohns & my 2nd infusion was today. I read somewhere that it works better for UC . Thanks
07-21-2014, 03:00 PM   #51
grayk
 
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Sounds like a lot of us are receiving our first treatments. Has anyone had any positive results? I still haven't noticed any changes. I am going in for my third infusion on Friday, but then I won't receive the next one for another 8 weeks.

Just curious if anyone is having any luck yet.

Sending lots of good vibes!
07-24-2014, 06:58 PM   #52
tricia_c
 
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Location: North Andover, MA

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Hi, new here. Met with GI today, going to start Entyvio, waiting for insurance approval, they estimate 7-10 days. Diagnosed with UC Feb 2012, also have psoriasis and psoriatic arthritis both of which thankfully are under control. Have tried all the a-TNFs - Humira, Remicade, Cimzia without any luck, hoping this non-TNF drug works, if not it will be surgery! Staying on methotrexate, stopping Cimzia. Looking forward to hearing about others results with Entyvio, I'll post mine once I start my infusions.
07-27-2014, 07:34 AM   #53
Rockdawg
 
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Hey guys, Ive been on this drug in study for over three years now. It has been a life changer for me. Biggest side effect for me has been headaches after the infusion and only on the day of. I also find myself tired sometimes however this could be partially becayse it is a bit of work to get an IV going on me. It is worth checking into for sure! I have been told its going to market in the fall, I think 2015?
Stargazer,

Just wondering if you have UC or Crohn's? I am going to get started this week (I have Crohn's). I know in the trials that patients with UC did much better, so I was wondering what you have?
07-28-2014, 05:16 PM   #54
Rockdawg
 
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Finally, finally, FINALLY got scheduled for my first infusion this Thursday. I must say though, after looking at the clinical trial data, I am a little concerned about this drug an Crohn's. I saw that the remission rate was only like 17% or something like that...has anyone else looked into this or talked with their doctor about it?
07-29-2014, 07:58 AM   #55
Patrice
 
Join Date: Jul 2014

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I did ask my doctor about Entyvio & Crohn's. He didn't get into the percentages but he did say it is effective with Crohn's, usually see improvement around 8 weeks.
07-29-2014, 10:05 AM   #56
tricia_c
 
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Location: North Andover, MA

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Rockdawg - Looking at Entyvio package insert, looks like results for first two Crohn's trials show 15% clinical remission at six weeks, a third trial with patients who had shown clinical response at six weeks had 39% clinical remission at 52 weeks. remission would be fabulous of course, but I'll take a response, I got nothing with any of the anti TNFs. Good luck with your infusions!
07-29-2014, 03:59 PM   #57
Shellebean
 
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Location: College Park, Maryland

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I had my second (week 2) induction infusion yesterday- it's hard to wait 8 or more weeks to see if it works. My mouth sores went away so I'm hopeful!
07-29-2014, 10:41 PM   #58
EightySixed
 
Join Date: Dec 2011
Location: Wilmington, Delaware

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Okay guys and gals. I peruse this site often but haven't been compelled to share. I'm following this thread now, as I've tried near evey other med available between the immunomodulators, biologics and chemo types. I just left the er with the same runaround- here's something for pain now see your GI. Wonderful. I go Thursday and it'll be my GI here in Delaware's first time prescribing Entyvio. I have two options I know of- Entyvio or have my colon cut out with a perm ostomy. I'm trying to be optimistic! Just wanted to chime in an day it's awesome to see others giving this stuff a shot too. I am desperate, as I suppose everyone considering it is. I'll start to update as I get going on the med.

Can I ask what pre screening everyone has had to do to get the okay to start? I imagine tb and the norm liver function ect. But was wondering if anyone got the JC virus screening beforehand or is that not a major concern? I know it uses the same base med as Tysabiri and they "believe" it doesn't cross the blood brain barrier but cannot say for sure. Just wondering what everyone else went through.

Best of luck to all! We deserve to have our lives back!

Justin
07-30-2014, 11:21 AM   #59
LandShark
 
Join Date: Oct 2013

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EightySixed, I'm in a similar situation - I've been on just about everything, and am nearly out of options (currently on LDN, which has helped, but not enough). My gastro is letting me choose between Entyvio and Stelara (off-label, though he has a lot of patients on it and has only had one patient's insurance refuse to cover it after appeals). I have about a week to decide (he's on vacation)...

I am leaning towards Entyvio because it is (supposed to be) gut-specific. This specificity should make PML a non-issue. From what I've read, Takeda was made to monitor study subjects for PML as well as enroll more subjects overall to evaluate the risk - there were no cases of PML during the trials. I am JCV positive (we tested to see if Tysabri would be an option), but I'm not particularly worried.

As for pre-testing, my doctor sent me in for the usual (CBC, liver panel) along with hepatitis (A/B/C), TB, and CMV testing (this was a month ago - he wanted to be ready to go if my scope (last week) looked bad (it did)). He likes to cover all the bases.

I wish I didn't have the bad luck to have his vacation start the day of my scope - I would have liked to have gotten the ball rolling on insurance approval right away.
07-30-2014, 12:30 PM   #60
EightySixed
 
Join Date: Dec 2011
Location: Wilmington, Delaware

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Awesome. That's what I figured would be the protocol. Thanks for the reply Shark. I am going to move in that direction as well, I have Cigna and have never had any issues with medicines being approved. Tomorrow after work I see my GI, I assume I'll be one of the ones reporting here on progress as well if everything checks out.
There are a few people on the GIMonitor app that have started it also, but everyone is still too early to tell if it's helping yet. Great app btw, I frequent that thing often. (JustGoHarder) is my name on there.

Thanks again for the reply, wish everyone the best of luck.

Justin
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