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


 
05-28-2014, 12:17 PM   #1
Crohn2357
Senior Member
 
Crohn2357's Avatar
 
Join Date: Aug 2013

My Support Groups:
Entyvio Support Group

About this Support Group

About Entyvio (vedolizumab)
Entyvio, an integrin receptor antagonist, is a humanized monoclonal antibody that specifically binds to the alpha4beta7 integrin and blocks the interaction of alpha4beta7 integrin with mucosal addressin cell adhesion molecule-1 (MAdCAM-1) and inhibits the migration of memory T-lymphocytes across the endothelium into inflamed gastrointestinal parenchymal tissue. Entyvio does not bind to or inhibit function of the alpha4beta1 and alpha E beta 7 integrins and does not antagonize the interaction of alpha4 integrins with vascular cell adhesion molecule-1 (VCAM-1). The alpha4beta7 integrin is expressed on the surface of a discrete subset of memory T-lymphocytes that preferentially migrate into the gastrointestinal tract. MAdCAM-1 is mainly expressed on gut endothelial cells and plays a critical role in the homing of T-lymphocytes to gut lymph tissue. The interaction of the alpha4beta7 integrin with MAdCAM-1 has been implicated as an important contributor to the chronic inflammation that is a hallmark of ulcerative colitis and Crohn’s disease.(Reference: Takeda)

Ideas, questions, experiences, problems...
All about vedolizumab.

Members

04jag_2, 3kiddiesmumma's Avatar 3kiddiesmumma, abalow, Abbynormal's Avatar Abbynormal, abudman, ADC's Avatar ADC, aimeey17's Avatar aimeey17, akblok, aleshanicole's Avatar aleshanicole, Alfonso323, aloe, amber_griffin, Annetteten, Archeogirl's Avatar Archeogirl, ashley.p, Asra's Avatar Asra, athena's Avatar athena, awill07, AWoodGirl's Avatar AWoodGirl, badbelly, bandbmom's Avatar bandbmom, BlueSky's Avatar BlueSky, Bobbie, botrel4's Avatar botrel4, Brave, Brian'sMom's Avatar Brian'sMom, Browniegirl, Cacleoa7, calvincrash, CD mom's Avatar CD mom, CDnME, Chris Derue, cm3553, cnt, Colbydog, cornfieldgirl's Avatar cornfieldgirl, CrazyQ84, Crohnotrigger83, csabo, ctaylor_91, D.Mom, Daniel_E, DarrinA, Dave129, Davebc's Avatar Davebc, Dckgriley, dd3759, DDCleveland's Avatar DDCleveland, dee, Dee71's Avatar Dee71, Dnlknight, doglover1, DougUte's Avatar DougUte, dugkara07, Dunerfool's Avatar Dunerfool, EastCoast902's Avatar EastCoast902, ecziggy, EightySixed, Emmarie369, Eridon2002's Avatar Eridon2002, erniet1488, EStrong, evginmb, ey218's Avatar ey218, GABoy's Avatar GABoy, Gail Jothen, gardeniagirl's Avatar gardeniagirl, Gary's Avatar Gary, Gemmcn, GI Jane's Avatar GI Jane, Gladymar, gracesaffron, Grandma McB, grayk's Avatar grayk, Grumpy1's Avatar Grumpy1, Guerrero, HannaA, hingrum's Avatar hingrum, Honey Badger, hthompson631, itsmebabs, Jackie Aba, jbiggers's Avatar jbiggers, JDimarco, jenr3191973, Jesse085's Avatar Jesse085, jhenderfiumy, Jim (POPS)'s Avatar Jim (POPS), Jnaby0808, JOconnor, JoeD5x, john/char, joy4, jptpa, Jrapp, jtwist01's Avatar jtwist01, Justbeachy, justjulie42's Avatar justjulie42, Juulez's Avatar Juulez, karel23, KarinaP, Kate D, katiesue230, keichelb88, Kg11, kimmidwife's Avatar kimmidwife, Kisleeh's Avatar Kisleeh, kjhuds's Avatar kjhuds, kkaras's Avatar kkaras, klowee's Avatar klowee, KMoose's Avatar KMoose, Kr81Fl, kromom1's Avatar kromom1, k_dubs25, LandShark, Lauram4, lchele1203's Avatar lchele1203, leibee's Avatar leibee, Lezley39, lgpcarter, LindaS's Avatar LindaS, lizalou, Lizzzil, lseibert's Avatar lseibert, Malarkey's Avatar Malarkey, malmer7's Avatar malmer7, mamabird's Avatar mamabird, margielee, marshayates, mastical's Avatar mastical, mbradbrad, Medwards30, mellyag, Memmy29's Avatar Memmy29, Menard, mendysue, milner06's Avatar milner06, Mindy82, MirrorBride's Avatar MirrorBride, mirta, misshess's Avatar misshess, Misstrishx's Avatar Misstrishx, mitsuevors's Avatar mitsuevors, momofzach's Avatar momofzach, motherfish, Motohd66, MrsManley's Avatar MrsManley, mugsymagoos's Avatar mugsymagoos, Muley_Madness, ney's Avatar ney, nikita5175, Norseman's Avatar Norseman, Novice, Octobergirl, ohmybelly, okhoney's Avatar okhoney, Patrice, paul11's Avatar paul11, peluchde's Avatar peluchde, Phartologist's Avatar Phartologist, pink&green's Avatar pink&green, pink1, Pinktea's Avatar Pinktea, Pixcdee's Avatar Pixcdee, pjmel's Avatar pjmel, Pug Mamma, pwind, rea, redqueen!'s Avatar redqueen!, renan.brito, RexyGirl, richard1353, Rick S R, ripper327, Riverchick, RJF, Robrich's Avatar Robrich, Rockdawg's Avatar Rockdawg, Rose, rosewrite, runningman's Avatar runningman, sagette's Avatar sagette, Sally's Mom, Samboi's Avatar Samboi, sandrasiemens, Saratay05's Avatar Saratay05, Sclaybaker, sehart717, shantianna, Shellebean's Avatar Shellebean, Shem409, SherBear22, sk12383's Avatar sk12383, SKCARR, stargazer, Steveyank, Suegeorge, sully1102's Avatar sully1102, sunshinestate, suschex's Avatar suschex, sydnee11, tamargaye, Tennis2fault, texashulkster's Avatar texashulkster, The Mad Bagger's Avatar The Mad Bagger, theriz, they call it a come back, Timothy65's Avatar Timothy65, tinat, Toomuchtooyoung's Avatar Toomuchtooyoung, trayK, tricia_c's Avatar tricia_c, Tull, Twbuto's Avatar Twbuto, uberreem, valleysangel92's Avatar valleysangel92, VaultBoy's Avatar VaultBoy, vetteman, VilliVagabond, wall2ka's Avatar wall2ka, WearTheFoxHat's Avatar WearTheFoxHat, Wildanimalpark's Avatar Wildanimalpark, willgare's Avatar willgare, worldblee, wowdew86, WyoJae's Avatar WyoJae, zacofalltrades's Avatar zacofalltrades, Zim's Avatar Zim

Last edited by Crohn2357; 08-12-2015 at 06:13 AM.
05-28-2014, 01:13 PM   #2
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
Love to hear from anyone who was on it during trials or who is in talks with their gi to start now that it's approved.
05-28-2014, 01:14 PM   #3
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
So glad we have a support group for this now! I think there's a few people who joined recently who are using this, so I'll be sure to link this to them.
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-29-2014, 06:18 AM   #4
lgpcarter
Senior Member
 
Join Date: Jun 2013
Location: Canada

My Support Groups:
Joined as this is possibly next step if Stelara doesn't work. Not commercially available in Canada yet, but my GI has mentioned it as a possibility to me.
__________________
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
05-29-2014, 07:33 PM   #5
kel
Forum Monitor
 
Join Date: Apr 2009
Is anyone taking this yet?
06-01-2014, 04:43 PM   #6
Crohn2357
Senior Member
 
Crohn2357's Avatar
 
Join Date: Aug 2013

My Support Groups:
People, do you have concerns about PML? Will you order JC virus test? And second question: Will you use immunosuppressants(aza, 6mp, mtx...) to prevent building up antibodies againist vedolizumab?
This article http://www.atmjournal.org/article/view/2931/3851 says:
Immunogenicity was low in the study with only 4% of patients developing antibodies to vedolizumab; further less than 1% developed persistent antibodies.
06-01-2014, 06:02 PM   #7
lgpcarter
Senior Member
 
Join Date: Jun 2013
Location: Canada

My Support Groups:
Will definitely have to do more reading about it if I decide to take it, but not too concerned about PML as from what I have read, there were no cases of it in in the clinical trials that were conducted.

Not sure about concurrent immunosuppressants, either, will definitely read more and ask my doctor what he thinks.

Going tomorrow, and will hopefully get a better answer on when I can start Stelara. Only three weeks since my last Simponi dose, so will still be a while yet, I think.
06-01-2014, 10:50 PM   #8
badbelly
Senior Member
 
Join Date: Jan 2013
Location: San Francisco, California

My Support Groups:
I'm thinking of starting this soon. Humira isn't working for me.
__________________
Crohn's diagnosis Jan '13.
Current meds: Humira, Modafinil, pain meds as needed
Supps: VSL#3, multivit., d3, omega3, iron, b12
Past meds: LDN, cipro/flagyl, prednisone, pentasa
06-05-2014, 07:33 AM   #9
kromom1
Senior Member
 
kromom1's Avatar
 
Join Date: Jul 2008

My Support Groups:
Hoping to start vedolizumab within the next month or so. Paperwork is in process. Really excited!! Hoping to be able to get off prednisone.
__________________
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.
06-09-2014, 11:57 AM   #10
Rockdawg
 
Rockdawg's Avatar
 
Join Date: Nov 2012
Location: Charlotte, North Carolina

My Support Groups:
I am going to start this as soon as my doc can get his hands on it. Has anyone else's Gastro had any trouble actually receiving it from Takeda? I am hoping this will work well for me, because I was on Tysabri, which worked wonderfully, but as I am JCV Positive, I discontinued it after a year. Love to hear about anyone who is having success!
06-09-2014, 07:49 PM   #11
grayk
 
grayk's Avatar
 
Join Date: Dec 2013
Location: Houston, Texas

My Support Groups:
I am setting up an appointment tomorrow for my first Entyvio infusion. I have been dealing with fistulas and inflammation. Really hoping this medication will do the trick. I'm so tired of dealing with these fistulas and the roller-coaster ride that is Crohn's Disease. I will let you all know how the infusion goes and if I have any positive results. I believe my doctor helped with the research for this drug, so she was able to start treating patients with it fairly soon after it was approved by the FDA.

Wishing all my fellow Crohnies well!
06-12-2014, 06:41 PM   #12
kromom1
Senior Member
 
kromom1's Avatar
 
Join Date: Jul 2008

My Support Groups:
grayk - Did you get your first infusion, and how did it go?
06-17-2014, 05:19 PM   #13
grayk
 
grayk's Avatar
 
Join Date: Dec 2013
Location: Houston, Texas

My Support Groups:
I received my first Entyvio infusion yesterday. It was easy breezy. No pre meds were required, and the infusion only took about 40 minutes.

I go back in 2 weeks, then back in 4. I have to build up to every 8 weeks. Hopefully I will start to see some improvement.

I am staying on Methotrexate, but get to come off of Cimzia.

I will keep y'all posted on how this works out for me. I would love to hear if any of you have positive results from this new medication.
06-17-2014, 06:01 PM   #14
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
They just launched their site if anyone is interested http://www.entyvio.com
06-17-2014, 07:21 PM   #15
kromom1
Senior Member
 
kromom1's Avatar
 
Join Date: Jul 2008

My Support Groups:
Glad to hear it went well, grayk. Any side effects, yet? Hope it works well for you!
06-19-2014, 05:31 AM   #16
Crohn2357
Senior Member
 
Crohn2357's Avatar
 
Join Date: Aug 2013

My Support Groups:
June 17, 2014
ENTYVIO(vedolizumab) Now Available in the United States for the Treatment of Adults with Moderately to Severely Active Ulcerative Colitis and Crohn's Disease
http://www.takeda.com/news/2014/20140617_6609.html
06-24-2014, 10:32 AM   #17
Rockdawg
 
Rockdawg's Avatar
 
Join Date: Nov 2012
Location: Charlotte, North Carolina

My Support Groups:
Grayk, how long did it take for your insurance to approve the Entyvio? I have been waiting for weeks...notice any difference yet?
06-24-2014, 12:13 PM   #18
grayk
 
grayk's Avatar
 
Join Date: Dec 2013
Location: Houston, Texas

My Support Groups:
It probably took around 2 weeks for my insurance to approve it.

I haven't really noticed a difference yet, but I'm getting another entyvio infusion this Friday.

I had one night of joint pain... Not bad just something I don't usually deal with.
06-30-2014, 12:02 PM   #19
botrel4
 
botrel4's Avatar
 
Join Date: Aug 2011
Location: springfield, Illinois

My Support Groups:
I start taking Entyvio Monday, July 7th. Excited and nervous! I keep telling myself it's in God's hands.
07-01-2014, 09:39 PM   #20
MommiMindi
 
Join Date: Jul 2014
Location: Reisterstown, Maryland
My husband is actually the Crohn's patient. He had horrible side effects after 20 mos. on Remicade. We have an appt. on 7/3 with the GI. He has finally gotten approval from our ins co for Vedo. I feel like I haven't had much time to research but want to be prepared for this visit. What do I need to know? I'm concerned about side effects. My husband has severe Crohn's and has been on Prednisone for 3 mos now to keep him out of the hospital. He has active disease and is struggling through every day. Could this really be our miracle drug?
07-02-2014, 12:34 PM   #21
kromom1
Senior Member
 
kromom1's Avatar
 
Join Date: Jul 2008

My Support Groups:
I'm hoping it will be our miracle drug, too, MommiMindi!! The side effects look pretty typical: "Common side effects include common cold, headache, joint pain, nausea, fever, infections of the nose and throat, tiredness, cough, bronchitis, flu, back pain, rash, itching, sinus infection, throat pain, and pain in extremities." Nothing too horrible-sounding, and hopefully they don't occur often. Best wishes to your husband.

I'm getting my first infusion Monday, July 7th!!! Looks like we will be vedolizumab buddies, botrel4!

Rockdawg - It only took about two weeks for my insurance to approve it also. Hope you hear something soon!
07-02-2014, 11:07 PM   #22
Dee71
 
Dee71's Avatar
 
Join Date: Jul 2014
Location: Villa park, Illinois

My Support Groups:
Hi everyone,
I just had my first entyvio infusion today. I was taking tysabri and my Gi switched me due to losing response. I had about 2 good weeks a month. He hopes entyvio will keep me more stable. So far I have had fatigue, some joint pain and I just noticed I have a rash (I am not itchy but a rash that looks like goose bumps). Other then the rash it is similar side effects as the other biologics. The infusion was quick only a half hour. The iv push is at a fast rate. My insurance took about 2 1/2 weeks. I am lucky to have one of the top doc's in the nation here in Chicago, IL and he had all the proper paperwork ready for patients he was switching. The infusion center I go to said that since he has all of the right paperwork approvals where taking about 2-4 weeks depending on the insurance medical reviewer.
I hope this will work better then tysabri since this targets the gut only. I have failed all other biologics so far so this is my last resort. I am not worried about PML with this med as I continue to text negative for the JC virus and this med is not suppose to pass the the blood brain barrier.
I will get my next infusion in 2 weeks. I will give an update again after that.

Is there anyone who has had more then 1 infusion?
Thanks
Dee
07-06-2014, 06:57 PM   #23
kromom1
Senior Member
 
kromom1's Avatar
 
Join Date: Jul 2008

My Support Groups:
Good luck Dee71! I assume you are seeing Dr. Hanauer. I traveled to Chicago a few years ago to see him for advice about Tysabri. Very knowledgeable man! You are lucky to have him as a doctor. There are no Crohn's experts where I live. I also failed the biologics (Remicade almost killed me), and Tysabri lost effect after about a year.

I'm getting my first Entyvio infusion tomorrow, and I'm really excited. Do you know how long it is supposed to take to start working if it is going to help? I think I read somewhere that if it's not helping by about 14 weeks, you should stop. Has anyone else heard this?
07-06-2014, 11:48 PM   #24
Dee71
 
Dee71's Avatar
 
Join Date: Jul 2014
Location: Villa park, Illinois

My Support Groups:
Thank you kromom1! I wish you luck too. I hope your infusion goes well! It is short and I didn't have to sit after. I would like to hear how it goes for you. Since they do loading doses I think the norm for these meds to kick in is up to 6 weeks. My dr didn't say anything about stopping after 14 weeks if it doesn't work. He likes to to be on the optimistic side and just has me come back in 3 mons to see how I'm am doing. They are also monitoring blood and stool inflimation markers (those are never very impressive for me even when I'm in a full flare). I actually dr Rubin who is the other top dog at u of c. He is also a great dr. He is the only Gi doc who has not given up on me. I have failed pretty much all the meds on the market so I am really hoping this on works. I have my next infusion on the 19th. I was on remicade for 7 years and it worked great until I developed remicade induced lupus. The joint pain was unbaerable! I have had bad reactions to every thing else and 6mp makes my liver enzymes go through the roof after only a few weeks so that out also.
I am sorry you reacted so badly to remicade! Stay positive, this will be the one!! :-)
07-07-2014, 07:43 AM   #25
Rockdawg
 
Rockdawg's Avatar
 
Join Date: Nov 2012
Location: Charlotte, North Carolina

My Support Groups:
Dee,

Did your Remicade incuded Lupus clear up the longer you were off the Remicade? I developed MS after being on Remicade for 5 years, which COULD have been triggered by the Remicade. Now I am constantly wondering if it will fade away the longer I am off of the Remicade, or if I have MS permanently now...nobody seems to know, not even when I made a trip to the Cleveland Clinic...Still waiting for my insurance approval for Entyvio, and waiting with nervous excitement.
07-07-2014, 02:13 PM   #26
lchele1203
 
lchele1203's Avatar
 
Join Date: Jul 2014
Location: Houston, Texas

My Support Groups:
GrayK what doctor do you see in Houston? I see Dr. Ertan and he is one of the best.
07-07-2014, 07:00 PM   #27
Dee71
 
Dee71's Avatar
 
Join Date: Jul 2014
Location: Villa park, Illinois

My Support Groups:
Hi rockdawg,

I am so sorry you developed MS! Yes my lupus did go away after going off of remicade, it took a few months. From what I have heard at the crohns and colitis education conferences it is not uncommon to develop more then one autoimmune disease such as MS, RA etc.. I am not sure if the remicade can induce ms? Did they put you on any meds for the MS?
I hope your INS approval for entyvio comes through quick and that it helps your crohns!!
07-08-2014, 07:12 AM   #28
Patrice
 
Join Date: Jul 2014

My Support Groups:
Had my first entyvio infusion yesterday. Infusion only lasted 30 mins,only side effects were some dizziness & fatigue. Fingers crossed it works . Crohns for 38 years, many surgeries, gone through all other meds, currently on TPN.
07-08-2014, 07:19 AM   #29
Rockdawg
 
Rockdawg's Avatar
 
Join Date: Nov 2012
Location: Charlotte, North Carolina

My Support Groups:
Dee,

I am currently taking Copaxone for my MS. I know it may be some wishful thinking, imagining that the MS will "go away" the longer that I am off of the Remicade. But, I haven't had any MS symptoms since my initial diagnosis, and my last MRI was "stable", for what that is worth...
07-08-2014, 10:24 AM   #30
kromom1
Senior Member
 
kromom1's Avatar
 
Join Date: Jul 2008

My Support Groups:
Dee71 - I also developed Remicade-induced lupus (after only the first three infusions). Not a lot of joint pain, but my lungs and heart filled up with fluid, and I had to have pericardial window surgery and was in the ICU for 11 days on a ventilator. The lupus did go away over the next year, but no more Remicade for me! I have also failed pretty much everything else. I was supposed to have my first infusion of Entyvio yesterday, but due to a screw-up in the pharmacy, I had to reschedule until next Monday, 7/14.

Good luck Patrice and Rockdawg!
Reply

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


All times are GMT -5. The time now is 08:40 PM.
Copyright 2006-2017 Crohnsforum.com