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


 
07-30-2014, 05:31 PM   #61
VilliVagabond
 
Join Date: Apr 2014
Location: NYC, New York

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How much does this med cost?
07-31-2014, 11:27 AM   #62
LandShark
 
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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.
08-06-2014, 05:15 PM   #63
jenr3191973
 
Join Date: Aug 2014
Location: hudson, New York

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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......
08-06-2014, 05:54 PM   #64
EightySixed
 
Join Date: Dec 2011
Location: Wilmington, Delaware

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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!
08-06-2014, 08:19 PM   #65
lgpcarter
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Location: Canada

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Best of luck with the surgery! When will it be and will you need meds to after?
__________________
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
08-06-2014, 09:31 PM   #66
duh panda
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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!
08-07-2014, 09:07 AM   #67
botrel4
 
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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.
08-07-2014, 09:26 AM   #68
grayk
 
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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.
08-07-2014, 10:04 AM   #69
botrel4
 
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Good luck to you as well!!!
08-07-2014, 04:12 PM   #70
Octobergirl
 
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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?
08-07-2014, 06:38 PM   #71
jenr3191973
 
Join Date: Aug 2014
Location: hudson, New York

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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....
08-08-2014, 05:01 AM   #72
EightySixed
 
Join Date: Dec 2011
Location: Wilmington, Delaware

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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!
08-08-2014, 01:36 PM   #73
cornfieldgirl
 
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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?
08-09-2014, 08:30 AM   #74
aimeey17
 
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Location: suffolk, Virginia

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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.
08-09-2014, 08:40 AM   #75
aimeey17
 
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Join Date: Feb 2014
Location: suffolk, Virginia

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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.
08-09-2014, 10:13 AM   #76
Dee71
 
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Join Date: Jul 2014
Location: Villa park, Illinois

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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
08-10-2014, 05:01 PM   #77
cornfieldgirl
 
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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.
08-12-2014, 05:26 PM   #78
tricia_c
 
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Join Date: Jul 2014
Location: North Andover, MA

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Finally got insurance ok, first infusion scheduled for this Friday! I'll keep everyone posted on how it goes, side effects etc.
08-13-2014, 09:40 AM   #79
Dunerfool
 
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Location: Sacramento, California

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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.
08-13-2014, 09:50 AM   #80
nogutsnoglory
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Location: New York

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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.
08-13-2014, 02:31 PM   #81
dugkara07
 
Join Date: Aug 2014
Location: salem, Arkansas

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I developed Lupus after the humira and it is permanent. It's been 6 years and still here.
08-13-2014, 02:33 PM   #82
malmer7
 
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Location: sacramento, California

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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.
08-13-2014, 07:28 PM   #83
they call it a come back
 
Join Date: Aug 2014

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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.
08-13-2014, 07:37 PM   #84
they call it a come back
 
Join Date: Aug 2014

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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?
08-13-2014, 07:55 PM   #85
they call it a come back
 
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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
08-13-2014, 10:17 PM   #86
nogutsnoglory
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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?
08-13-2014, 11:50 PM   #87
Dunerfool
 
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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.
08-14-2014, 10:32 AM   #88
they call it a come back
 
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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?
08-15-2014, 02:20 PM   #89
LandShark
 
Join Date: Oct 2013

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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...
08-15-2014, 04:31 PM   #90
tricia_c
 
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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.
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