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Vedolizumab (Entyvio) concern.

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Crohn's Disease
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Posted 4/7/2015 10:29 PM (GMT 0)
Ran out of options with the crohn's meds. I asked the doctor about vedolizumab because I heard it had less severe side effects.  He is going to try it on me, but when I came home and read more about the side effects, I was surprised, they got some nasty ones too.  Trouble breathing...nose/throat infections, joint pains, flu like symptoms, worsened diarrhea.  I don't want to even start on some of the more serious ones.  Can someone encourage me and tell me the side effects aren't that bad.  I figured because it was organ specific, it wouldn't have many side effects?  What's the point of getting treated for crohn's if the medicine is going to make you even sicker.  When they mention these side effects, are they constant between one injection to another, or do they occur only in the first few days or week after injection, please, does anyone know?
Posted 4/7/2015 10:46 PM (GMT 0)
Hi Dorri, I have been on Entyvio for six months with minimal to no side effects. It's working ok but had to add MTX to get noticeable results, e.g lowered pred from 30 to 10 and entocort from 6 to zero
Do get some joint stiffness and joint pain seems to be the most common side effect.
Worth a try to see what happens
It is much less of an immune suppressor than remicade or humira
Posted 4/8/2015 3:12 AM (GMT 0)
I am using it. I didn't have any side effects at all but recently i've had some joint pain. I am not sure if it's from the entyvio or if it's from recently stopping steroids.
Posted 4/8/2015 3:27 AM (GMT 0)
Every drug has side effects. Even Tylenol and aspirin has side effects. Vitamins, you name it! Doesn't mean you will experience them though.

Besides, I'm sure you're aware of what kind of things out of control Crohn's causes. Those usually scare me more then possible side effects.
Posted 4/9/2015 4:13 PM (GMT 0)
I have been on Entyvio and have not experienced side effects at all. I hear from others that you may get a headache after the infusion.
Posted 4/9/2015 4:55 PM (GMT 0)
Please understand what the list of side effects means. It does not mean that you will experience those side effects. It means that some of the patients that took part in the clinical trials of Entyvio experienced some of those side effects. You can find out exact numbers either on the package insert or online.

Also understand that if someone got an upper respiratory infection, for example, while participating in the clinical trial, it has to be noted as an adverse event in the trial. There is a good chance that upper respiratory infection has nothing to do with the drug. Maybe that patient has young children in daycare who bring home a cold every other week and have completely run down the patient's immune system (speaking from experience here). It has to be reported in the trial and there's no way to know for sure if the drug caused it or not. The official definition of "adverse event" speaks to that: "An
adverse event can be any unfavorable and unintended sign
(e.g., an abnormal laboratory finding), symptom, or disease temporarily associated with the use of a drug, without any judgment about causality or relationship to the drug. "

All that being said, I have been on Entyvio for 9 months. I have only had two issues. One is fatigue on the day of infusion. The other is an allergic reaction at the end of the infusion where I start coughing uncontrollably. Pre-medicating with Benadryl (like they do with Remicade) has made that go away. Yes, that second one is scary but I've come in contact with zero other people who have experienced that with Entyvio. Overall, I'd consider my side effects with Entyvio to be virtually nothing, especially compared to what I experienced with Humira.
Posted 4/30/2015 4:52 PM (GMT 0)

Hello all,

New to this site and may be going on Entyvio starting next month. Bania, has it been working for you? I have UC so might work a little different but would like to know if it has been effective for you. Also, if anyone else has been on this please let me know how it has worrked for you.

Posted 4/30/2015 9:09 PM (GMT 0)
Just started mine and no complaints so far.....
Posted 4/30/2015 11:16 PM (GMT 0)
Hi fignewton,

Glad to hear it is going well for you. How long have you been on it? Are your symptoms getting better? Do you live in Canada?

Burninator
Posted 5/1/2015 2:53 PM (GMT 0)
Is Entyvio working for me? The honest answer is "I don't know." I had surgery which knocked me into remission and then I started Entyvio two months later. 13 months after the surgery I'm still in remission but I don't know if the Entyvio is keeping me in remission or if I would be in remission anyway because of the surgery. Either way, I'm staying on the Entyvio because I need to be on something.
Posted 5/1/2015 3:45 PM (GMT 0)
bania,

How did surgery put you into remission? any side effects from Entyvio. It is supposed to be released in Canada this month so might be going on it.

Burninator

Posted 5/1/2015 11:22 PM (GMT 0)
burninator, just received my 2nd starter dose. Next in 4 weeks. Did good on Remicade until I built up antibodies. Failed Humira, the first 4 shots was the best on humira, after that all down hill. Infusion for entyvio is nothing, pretty quick as well considering while on remicade I would be there for like 3 1/2 to 4 hours. Got the max dose. Felt so good on remicade. Joints didn't hurt, no aches and pains. Woke up eeling pretty good. Entyvio feel better then humira, have the aches and pains. The past 3 days I have been feeling extremely full and bloated. Pain in the abdomen area as well. Hopefully its healing pains if that even happens. Also I have been see blood in BM. Crossing fingers, I know its still early........
Posted 5/1/2015 11:49 PM (GMT 0)
burninator- I am in Ontario... Can you give me more info on where I can find out about this coming to Canada this month... I think I'm heading for an Ileostomy pretty soon... But for maintenace drugs for after I am leaning more towards Entyvio... I knew it wasn't approved here (Canada) yet.. But was trying to find more info as to when it may be?? Thanks!!!
Posted 5/2/2015 1:32 AM (GMT 0)
Thanks fignewton.I hope things start to look up. My doctor wanted to put me on Humira but I don't like what I have been reading about it. Hopefully approved for Entyvio. See my doctor this month so we shall see. I heard that it takes a few months to work so give it sometime.

Dawnc77,

I am also in Ontario. My doctor told me it was originally suppose to be out in March 2015 but it got pushed to 1 May 15, so today. He says that they have all the advertising, supply etc ready to go so should be able to get it from your doctor if you ask. Not sure if it would be prescribed if you are going for an ilestomy. Maybe give this drug a try before you do that. Do you have Krohns or UC?

Burninator
Posted 5/2/2015 7:18 PM (GMT 0)
I have Crohn's... They will probably want to wait a while after surgery... Before they put me on drugs.. I just have more interest in Entyvio... Will see I guess?
Posted 5/3/2015 1:42 AM (GMT 0)
Yes, I heard that it is a lot better and a lot fewer side effects. Good luck with your surgery. May God be with you during this difficult time.
Posted 5/4/2015 1:25 PM (GMT 0)
Burninator -
My surgery was pretty drastic - subtotal colectomy with an ileostomy. The worst of my Crohn's flare was in my colon, and that is now gone. They removed about 6 inches of small intestine, but that wasn't too affected luckily. I'm still dealing with some perianal issues but once I recovered from surgery I started doing great - I've gained 40 pounds in the last year! (For me, that's a really good thing.)

I started the Entyvio three months after surgery. The only side effect I have had is fatigue on the infusion day. Multiple times, I have had an allergic reaction to it towards the end of the infusion. Pre-medication with Claritin, Tylenol, and Benadryl has fixed that. (They're just treating it like a Remicade infusion.) Anyway, an allergic reaction to Entyvio appears to be very rare, and I'm still taking it despite it. Overall, I've had far fewer side effects than Humira. However, Humira and Remicade can start showing results within days, whereas Entyvio could take months. So keep that in mind.
Posted 5/4/2015 3:07 PM (GMT 0)
Bania,

Glad to hear that things are getting better for you. Knock on wood I'm far away from surgery right now. From what I heard Entyvio takes longer to work but has better results and much less side effects.

Posted 5/5/2015 1:38 PM (GMT 0)
I'm not so sure about Entyvio having better results than Remicade or Humira. Remicade and Humira did better in the clinical trials than Entyvio, though there's no studies of them head-to-head. Anecdotally, from myself, people on this board and in my doctor's office, Entyvio does produce fewer side effects, so I agree on that part.
Posted 5/5/2015 1:48 PM (GMT 0)
Fewer side effects sounds good to me. Don't want to start a drug where the side effects are worse than the condition. Thanks for the reply.
Posted 5/11/2015 7:26 PM (GMT 0)
I started Entyvio 4 weeks ago and so far nothing. I think the side effect of diarrhea is present as I am going quite frequently now.
Posted 5/11/2015 8:09 PM (GMT 0)
Hi bkblack,

Thanks for your post. Did you have bad diarrhoea before you started Entyvio? Have you seen any improvement in your condition? Do you live in Canada and if so where di you get the drug?

Dan
Posted 5/12/2015 1:22 AM (GMT 0)
Did anybody start entyvio to get rid of fistulas?
Any luck?
Or is remicade still the go-to?
Posted 5/12/2015 1:50 PM (GMT 0)
No studies have been done regarding fistulas and Entyvio. From a personal standpoint, I'm still battling fistulas with no change for the better, and I've been on Entyvio for 10 months. Go with Remicade if fistulas are your main concern.
Posted 5/13/2015 2:41 AM (GMT 0)
I'm at a stand still waiting for Entyvio to get approved in Manitoba/Canada. I wonder if one Province gets approved, then will all of the Canadian provinces get approved at the same time?
So far I can't even find information about research being done on this drug in this Province? Unless it is being done under another name or number as sometimes happens with these studies?
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