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Entyvio (Vedolizumab) Support Group

Entyvio 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.
 
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theOcean

Moderator
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. :)
 
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.
 
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.
 
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.
 
Hoping to start vedolizumab within the next month or so. Paperwork is in process. Really excited!! Hoping to be able to get off prednisone. :)
 
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!
 
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!
 
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.
 
Grayk, how long did it take for your insurance to approve the Entyvio? I have been waiting for weeks...notice any difference yet?
 
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.
 
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?
 
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!
 
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
 
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?
 
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!! :)
 
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.
 
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!!
 
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.
 
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...
 
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!
 
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
 
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).
 
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.
 
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.
 
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.
 
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?
 
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
 
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.
 
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
 
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.
 
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.
 
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
 
Im getting ready to start this. Has anyone had any or heard of anyone's experience with this med and Crohn's fistulas?
 
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?
 
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.
 
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
 
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!
 
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.
 
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?
 
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?
 
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.
 
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!
 
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!
 
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
 
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.
 
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
 
Well, my doctor is back from vacation and he called me this morning (I was told he wouldn't be back until August, so this was a pleasant surprise).

I've decided to give Entyvio a go (Stelara will be next if I don't respond). The prescription has been written and the paperwork is going to my insurance...my gastro expects some back and forth, but doesn't expect a denial. Fingers crossed. I'm ready to get this started.

I hope I made the right call. There isn't as much data re: Stelara out there since it's still in trials for CD. I just felt more comfortable taking something targeted to the gut, despite the lingering PML worries.
 
New to this group and it has been 6 years since surgery to remove disease. Now crohns has returned. I was just approved to take this medication and it is so new any users out there have any thought about it...I had to stop Remicade infusions 7 years ago due to rare side effect but I got drug induced Lupus from it...Hope this isnt going to be an issue....... a little worried......
 
Hey guys, I have lurked on here for years although I just posted a bit as I was almost positive I was starting Entyvio, although the tables have turned very quickly. I am now having a total colectomy/ileostomy procedure done. The recurrence rate with my type of crohns (completely restricted solely to the colon) is about 10% being off all medication. I am in such bad shape, I am actually looking forward to having the surgery done.

Best of luck to all you, I really pray the Entyvio is a lifesaver for all of you!
 
Just got approved to start Entyvio today after seeing no response from Cimzia, will hopefully be starting in the next two weeks. No one seems to know what happens next if this doesn't work - fingers crossed and hoping for the best!
 
I've had two infusions so far of Entyvio that have went pretty well. I'm trying to determine if my issues now are side effects of the drug or because the drug isn't working. I've been feeling really blah - just no pep, I've been taking Tylenol every morning and again in the afternoon for headaches. The worst part is the EXCESSIVE gas to the point where I have to sit on the toilet in the mornings for 5 to 10 minutes almost constantly releasing gas...You can imagine the discomfort I feel when I get out of bed.
 
Botrel4,

I've been having similar problems. I've had 3 infusions and have dealing with headaches, low energy, and low grade fever. I'm worried the drug isn't working, but I have heard the energy and headaches could be side effects. Who knows! Good luck to you.
 
Just wondering if anyone on Entyvio has extra intestinal symptoms with their Crohn's and if so if you're relying on Entyvio alone to take care of it? My GI is pushing for me to try this, but I wanted to wait and see if Imuran was going to work first before trying it. I have really bad arthritis with my Crohn's, and I can't find any research on whether or not Enytvio helps with IBD related arthritis.

Also, is anyone taking this in conjunction with Imuran?
 
I am on Imuran as well.I have been on this for many years now. Just went to my GI today and have Entyvio setup for next Friday. Spoke to the infusion nurses today and they are finding people are tolerating this medication very well. They said they give acetominophin, benedryl, and zantac...Just thinking this might keep any small reaction down to minimal. So we will see..About 3 weeks after my last appointment and down 15lbs crazy not even trying to lose it. January was my last scope and all looked well. Now crohns is back so quickly it is crazy....
 
Sorry I didn't reply sooner, albeit "severe" and described as aggressive by my GI, I'm fortunate to have only been affected in the colon. Is hasn't, yet anyhow, mined to my small bowels.

So, chopping out the colon and hopefully will be largely med free, but my doctor did mention a very low dose of Humira to help maintain.

I was on it weekly before and I'm not sure it helped. Oh well! I'm all in, sad it gotto this point so quickly but it will be okay. Life goes on!

I had a lot of hopes for this medicine, the timing just didn't work out for me, in short, I just ran out if time is all!

Hoping it worked wonders for you! I was also interested in The SSI vaccine from QU Buologics, I couldn't help but wonder if they were kind of the same but I think they're totally different from what I've read.

Anyhow, best of luck everyone! I'll continue to follow this, who knows it may be a post op med for me! Keep rockin!
 
Hi everyone, I am a lurker but have recently started Entyvio. Diagnosed in 2010, I had been on lots of prednisone, imuran (pancreatitis), remicade(allergy), methotrexate (hallucinations, bad side effects), pentasa, and most recently humira. I am also on Sulfasalazine and Arava for the arthritis. Humira worked for awhile but stopped. I have bowel issues plus extraintestinal manifestations (disabling arthritis, eyes, skin). I see docs at the Mayo but because they are six hours away, we do alot of phone/email. He decided to put me on Entyvio. No prescreenings, just called in a rx to the local infusion center.

I received my first infusion on Monday, Aug 4. The infusion center gave me tylenol and benedryl and decadron before the infusion. That afternoon, I was so tired and loopy. Every day this week has been difficult because I am extremely wiped out. I wasn't this tired on Remicade.

I did contact the Mayo and they said 6% of people get fatigue. My diarrhea has increased as well which I saw was happening when the pulled me off of the Humira.

Anyone else have any side effects?
 
Just wondering if anyone on Entyvio has emyalgIastinal symptoms with their Crohn's and if so if you're relying on Entyvio alone to take care of it? My GI for me to try this, but I wanted to wait and see if Imuraentail oing to work first before trying it. I have really bad arthritis with my Crohn's, and I can't find any research on whether or not Enytvio helps with IBD related arthritis.

Also, is anyone taking this in conjunction with Imuran?
I have had extra intestinal manifestations like iritis, arthralgia, myalgia, and skin rash on hands (not all at once), i also curently have a rectovaginal fistula. I have been on methotrexate and cimzia going to be replacing cimzia with entyvio soon. Hope it works. Seems like TNF blockers arnt working for me anymore.
 
Hey guys, I have lurked on here for years although I just posted a bit as I was almost positive I was starting Entyvio, although the tables have turned very quickly. I am now having a total colectomy/ileostomy procedure done. The recurrence rate with my type of crohns (completely restricted solely to the colon) is about 10% being off all medication. I am in such bad shape, I am actually looking forward to having the surgery done.

Best of luck to all you, I really pray the Entyvio is a lifesaver for all of you!
I have that type of Crohn's in fact I was misdiagnosed with uc for many years I had total colectomy with j pouch in 2011. Unfortunately my Crohn's has manifested since in my rectum, eyes skin, and joints. The worst has been a fistula I developed. Still dont know whether the surgery was a good choice for me. Getting ready to try e ntyvio along with the methotrexate im already on. Also doing the perfect health diet eating plan.
 
Hi everyone, I am a lurker but have recently started Entyvio. Diagnosed in 2010, I had been on lots of prednisone, imuran (pancreatitis), remicade(allergy), methotrexate (hallucinations, bad side effects), pentasa, and most recently humira. I am also on Sulfasalazine and Arava for the arthritis. Humira worked for awhile but stopped. I have bowel issues plus extraintestinal manifestations (disabling arthritis, eyes, skin). I see docs at the Mayo but because they are six hours away, we do alot of phone/email. He decided to put me on Entyvio. No prescreenings, just called in a rx to the local infusion center.

I received my first infusion on Monday, Aug 4. The infusion center gave me tylenol and benedryl and decadron before the infusion. That afternoon, I was so tired and loopy. Every day this week has been difficult because I am extremely wiped out. I wasn't this tired on Remicade.

I did contact the Mayo and they said 6% of people get fatigue. My diarrhea has increased as well which I saw was happening when the pulled me off of the Humira.

Anyone else have any side effects?
Hi cornfieldgirl,
I have also have an issue with getting really wiped out after entyvio infusion. I have my 3rd one next weekend. After the 1st one it was delayed a day or so and then it knocked me out for about 3 days. After the 2nd it hit me about 2 hours after the infusion. I get extremely tired, dizzy and a lot of joint pain. I can't drive or go anywhere by myself, I tried to go to the store the day after and almost passed out, I had to go sit down. I switched from tysabri after being on it about 3 months and I had similar side effects on tysabri. I had headaches with tysabri but I do not have them on the entyvio. My doctor does not believe in giving pre-meds. I also think this med makes me more sensitive to the sun. I am normally sensitive but after being out for an hour are so last weekend I got bad sun poisoning and my joints flare up really bad again.
They do say that it can take 6-8 weeks to see improvement but I saw some improvement in my diarrhea after my last infusion so I hope after next weeks dose I will see more improvement.
I hope it starts to help you soon and the side effects get better too.

Dee
 
Hi cornfieldgirl,
I have also have an issue with getting really wiped out after entyvio infusion. I have my 3rd one next weekend. After the 1st one it was delayed a day or so and then it knocked me out for about 3 days. After the 2nd it hit me about 2 hours after the infusion. I get extremely tired, dizzy and a lot of joint pain. I can't drive or go anywhere by myself, I tried to go to the store the day after and almost passed out, I had to go sit down. I switched from tysabri after being on it about 3 months and I had similar side effects on tysabri. I had headaches with tysabri but I do not have them on the entyvio. My doctor does not believe in giving pre-meds. I also think this med makes me more sensitive to the sun. I am normally sensitive but after being out for an hour are so last weekend I got bad sun poisoning and my joints flare up really bad again.
They do say that it can take 6-8 weeks to see improvement but I saw some improvement in my diarrhea after my last infusion so I hope after next weeks dose I will see more improvement.
I hope it starts to help you soon and the side effects get better too.

Dee
I appreciate the feedback. It is Sunday and I am still so wiped out. The only thing I have noticed is that I have less joint pain; I think humira might have been the source of most of my pain. My bowels are a mess though- I wasn't expecting to be so sick. Hugs to you. I hope you have continued improvement.
 
Finally got insurance ok, first infusion scheduled for this Friday! I'll keep everyone posted on how it goes, side effects etc.
 
Its been awhile since I've posted in any way. Today is my turn. My first Entyvio dose. Remicade - fail. Humira - fail. Prednisone - the only thing that seems to work. I'm going to pre-medicate just-in-case. I've been told I'm the first one in my entire region to receive it. Nervous - yes. Excited-yes. I'll keep you posted.
 

nogutsnoglory

Moderator
I'm surprised we haven't seen Entyvio commercials yet. I'm kind of hoping they come out to bring awareness of crohns but actually informative unlike the humira ones.
 
haha, nogutsnoglory - my wife has been working on an Entyvio jingle since my first infusion a few weeks ago, i'm sure the commercial is coming soon.
my update on Entyvio:
i ended up receiving my first infusion while in the hospital on July 22nd (a few weeks before my 4th remicade infusion was due)
i didn't notice any side effects, but i was pretty doped up on narcotics at the time due to a nasty fall that put me in the hospital, and the pain i was experiencing due to an anal fissure
a week later, my symptoms continued to get worse and i checked into Stanford University Hospital - they said the Entyvio would likely take 12 weeks to know whether or not it will work for me. they also said that studies have shown that Entyvio did not do a great job out-performing the placebo on patients that were anti-tnf failures like me.
at Stanford they pumped me full of IV steroids for 5 days and calmed things down. the plan was to release me on prednisone and hope to bridge that gap until i'd been on Entyvio for 12 weeks.
i received my second Entyvio infusion on August 7th. i was tired the next day but really felt no other side effects.
unfortunately, today my stools seem to have lost any form i had, blood and mucus seems to be returning quickly, and my fissure pain is coming back quickly.
i was really hoping to give it the full 12 weeks to see if the entyvio would kick in. but if things keep going backwards in the coming weeks i will be headed back to stanford for surgery...
one note on my condition is that i do have indeterminate IBD at this point, and i've only had symptoms/disease for 9 months. it's been fast and aggressive and they think that has a lot to do with why meds have not worked thus far.
 
Hi am new to this whole furum business, but I have just had my second dose of entyvio and was wondering I anyone else feels like the life is being sucked out of you. I have had all the other basic meds but have now been labeled as a non responder I hate those words but and energy help would be nice, but I will say this dose was easier on me less dizziness but I may have pushed it too far the first time so take it easy. I would love some input I am ready for my come back though I may have never started I have had crohns half my life I am only 30.
 
Botrel4,

I've been having similar problems. I've had 3 infusions and have dealing with headaches, low energy, and low grade fever. I'm worried the drug isn't working, but I have heard the energy and headaches could be side effects. Who knows! Good luck to you.
I to have had massive headaches and no energy, they gave me all kinds of migraine meds but nothing worked, I was told it was from the entyvio I still am drained but after and er visit and lots of pain meds that knocked me out maybe sleep helped good sleep, and of couse prevenetive migraine meds, floriciet is the one I am on now and imitrex treximet is better, but it is a shame that to quite one beast they awaken another lol I hope this helps:smile?:rof::(
 
Hi cornfieldgirl,
I have also have an issue with getting really wiped out after entyvio infusion. I have my 3rd one next weekend. After the 1st one it was delayed a day or so and then it knocked me out for about 3 days. After the 2nd it hit me about 2 hours after the infusion. I get extremely tired, dizzy and a lot of joint pain. I can't drive or go anywhere by myself, I tried to go to the store the day after and almost passed out, I had to go sit down. I switched from tysabri after being on it about 3 months and I had similar side effects on tysabri. I had headaches with tysabri but I do not have them on the entyvio. My doctor does not believe in giving pre-meds. I also think this med makes me more sensitive to the sun. I am normally sensitive but after being out for an hour are so last weekend I got bad sun poisoning and my joints flare up really bad again.
They do say that it can take 6-8 weeks to see improvement but I saw some improvement in my diarrhea after my last infusion so I hope after next weeks dose I will see more improvement.
I hope it starts to help you soon and the side effects get better too.
Dee
Your post sounds just like me, I also thought I could go to the grocery store and I almost passed out I had to be rescued, I hate releying so much on others to help me I am always the one to take care of everyone, I feel as though this may be sucking the life out of me, I just hope for a miracle that may never come my family needs a break, the headaches and fatigue are awful did you find anything that helped yet, I have only had two infissions, I just dont want to do anything, I hope you get a miraacle too:getwell::sign0085:
 

nogutsnoglory

Moderator
haha, nogutsnoglory - my wife has been working on an Entyvio jingle since my first infusion a few weeks ago, i'm sure the commercial is coming soon.
my update on Entyvio:
i ended up receiving my first infusion while in the hospital on July 22nd (a few weeks before my 4th remicade infusion was due)
i didn't notice any side effects, but i was pretty doped up on narcotics at the time due to a nasty fall that put me in the hospital, and the pain i was experiencing due to an anal fissure
a week later, my symptoms continued to get worse and i checked into Stanford University Hospital - they said the Entyvio would likely take 12 weeks to know whether or not it will work for me. they also said that studies have shown that Entyvio did not do a great job out-performing the placebo on patients that were anti-tnf failures like me.
at Stanford they pumped me full of IV steroids for 5 days and calmed things down. the plan was to release me on prednisone and hope to bridge that gap until i'd been on Entyvio for 12 weeks.
i received my second Entyvio infusion on August 7th. i was tired the next day but really felt no other side effects.
unfortunately, today my stools seem to have lost any form i had, blood and mucus seems to be returning quickly, and my fissure pain is coming back quickly.
i was really hoping to give it the full 12 weeks to see if the entyvio would kick in. but if things keep going backwards in the coming weeks i will be headed back to stanford for surgery...
one note on my condition is that i do have indeterminate IBD at this point, and i've only had symptoms/disease for 9 months. it's been fast and aggressive and they think that has a lot to do with why meds have not worked thus far.
I'm sorry it's not working as planned or as quickly as you need it.

I'm surprised you are allowed to do both Entyvio and Remicade. What's the point if remicade isn't working? Isn't this too much immune suppression?
 
Well- 1st infusion of Entyvio went ok. I pre-medicated with 500 mg of Tylenol and 25 mg of Sudafed about 1 1/2 hours prior to my appointment. I requested they slow down the infusion rate-so instead of 30 mins it took closer to 45 min/ 1 hour. They then monitored me for an additional 30 mins. I dozed off while the infusion went along thanks to the Benadryl. Feeling just sort of out-of it- and slightly tired. Was able to drive fine and do grocery shopping afterwards. Let's see how tomorrow goes.
 
I was wondering if anyone thinks this med is working, because I am not sure, I couldnt get off the bathroom floor last night couldn't move my hands and I am hoping this to shall pass. Dont get me wrong I am not expecting to be cured but relief would be nice, any sugesstions on any good meds for energy. DOES ANYONE LIKE ENTYVIO?
 
It took two weeks, but I got insurance approval for Entyvio (Anthem/BCBS, if anyone's interested). I had to call my gastro's office, and his admin people harassed the insurance company (that was today - this happened with Remicade, too...had to call them, since they never bothered to let anyone know it had been approved). Yeesh.

So, first infusion is Monday (only day with open appointments). Hope they have it at the hospital pharmacy (I would assume so, I'm not the first patient to go on it here). Little worried to hear so many reports of fatigue...
 
Had my first infusion this morning, easy and quick compared to Remicade. No premeds, just check of vitals before and after, all was good. So far so good, no side effects at all. I really hope this stuff works. I take my weekly methotrexate tomorrow, (been on that since May) and I sometimes get quite tired from it, so it may be hard to tell if I do get tired if it's from the Entyvio or the methotrexate or both. We'll see.
 
Well, the night before my 2nd infusion, I was running a 101 fever. I called the doc and he said he would not allow me to have the 2nd infusion while running a fever that high:( I am also withdrawing from Prednisone (at 5 mg right now), and I honestly feel that the fever is just my Crohn's coming back.

I didn't really have any noticeable side effects after my first infusion, and I felt great in the two weeks that followed, right up until the night I started running that fever. BUT, I was also on 20mg, then 10mg, of prednisone at the time, so that could have been why I was feeling so good.

It worries me, however, that there doesn't seem to be a lot of positive responses on this forum so far...maybe the people that are feeling good are outside exercising, and this too busy to jump on their computers (we can hope for that I guess...)
 
I'm sorry it's not working as planned or as quickly as you need it.

I'm surprised you are allowed to do both Entyvio and Remicade. What's the point if remicade isn't working? Isn't this too much immune suppression?
I was wondering the same thing, NGNG. I had to wait 10 weeks between Simponi and starting Stelara as my GI said having both in my system "would keep him awake at night" worrying about infection risk.
 
I've also been worried about the lack of success stories, though I did see some during the clinical trials. Entyvio performed better for UC patients (we're hoping I respond like them, as we seem to revisit the Crohn's or UC? question on a regular basis). However, I've been warned that this drug doesn't kick-in as quickly as the other biologics can - I shouldn't really expect to see anything before I've completed the loading doses.

I hope to see some positive reports soon.
 
Just had the first infusion Friday, so I haven't seen the bill yet, but I expect even with insurance out of pocket will be significant. Looks like Entyvio may have a program similar to Remicade's Remistart program. The website claims that "most commercially insured patients will pay no more than $50/infustion" Here's the link, I'm going to call on Monday for more info.

https://www.entyvio.com/hub/
 
FYI, when my gastro's office was getting my insurance authorization paperwork together, they had me fill out all the Entyvio Connect paperwork as well, including the secondary insurance stuff.

I have excellent insurance, though, and I honestly expect my first infusion to get me to this year's out-of-pocket max. Don't think Takeda's gonna have to pay much for me.
 
I just wanted to give an update on the Entyvio. I am having my 3rd dose tomorrow morning week 6. I finally started to feel it was working slightly the middle of last week. My abdominal pain is less & joint pain is less. My energy remains low however I am on TPN at night & going to the bathroom all night ( urine) due to all the fluids. My doctor did say it usually starts at 8 weeks. He has me only on some crackers & ginger ale for 8 weeks, so the true test will be when I start food again. But last week I started getting very hungry, which I haven't felt in about 1 year. So I do think its working.

This is a great forum to know we are not alone !
I do have Crohns, not UC.
 
Ok so I have had two infusions now of entyvio and haven't premedicated on either, I guess I'm not really that scared of PML since there have yet to be any instances and as it has been stated earlier it's not supposed to pass the blood brain barrier. My question for some people on it, I'm at week 4 btw, but since I have started, my joints are KILLING me. And I mean knees, ankles, wrists, elbows, and back. Now I'm also on methotrexate, was on this before I started entyvio, dr had me continue this. Also usually the day after I take methotrexate it's usually REALLY rough. Anybody else having these problems and when are people starting to see results, if any? Also I have not done stelara or somebody had mentioned another drug but I can't remember what it is. I have been on remicade, Humira, Cimzia, pentasa, methotrexate(currently), imuran, Tysabri(no results and JC virus positive), and I'm also allergic to sulfa drugs.
 
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Regarding Entyvio Connect program, here's a website where you can download and print the necessary forms if your gastro's office or clinic doesn't have them or isn't aware of them (like mine wasn't). I imagine the Entyvio reps are very busy these days trying to get the word out on this new product, but word has yet to reach some places.

https://www.entyviohcp.com/connect/

As to how I'm doing after my first infusion Friday. Felt great all weekend, even after my methotrexate dose on Saturday. No marked improvement in frequency/urgency, but stools more formed, less diarrhea, and more complete emptying of bowels. This afternoon (Monday) however, a wave of fatigue hit. Not sure if it's related or is just from running around a bit today on my usual several times a night interrupted sleep.
 
Had my first infusion yesterday. It really is quick - I had to wait longer for the medication to make its way up from the pharmacy. No pre-meds (I was given Tylenol and Benadryl before my Remicade infusions). I was held for a half-hour post-infusion for observation, then sent on my way. According to the infusion nurse (she handles all of the IBD patients on IV meds here), the other patients on Entyvio haven't been complaining about any significant side effects.

About two hours after I left the hospital, the fatigue hit. Hard. I was asleep by 8:30pm. I noticed feeling feverish and a little nauseated when I awoke later in the evening. I also had a terrible headache, but I'm prone to stress-related tension headaches so I wouldn't blame it on the infusion unless it happens again. I managed to wake-up at my normal hour and get to work on time, so I wouldn't say the fatigue is still an issue...though I am a little dopey today (I'd blame that on the lingering headache, which is only now clearing-up).

My gut? Behaving a little better, but it's far too early to credit the Entyvio for that (I am also on Xifaxin and Uceris (every other day) right now).
 
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