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Entyvio

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Ulcerative Colitis
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 238
Posted 2/18/2022 4:54 PM (GMT -8)
Starting Entyvio in 3 weeks. Vaccines will be up to date and Entyvio has been approved (after many discussions with Dr) . Just wanted to get a feel for the infusion time and any reactions/fatigue. 74 years old and a little apprehensive about starting my first Biologic. Lialda and Rowasa just will not get my UC under control and have decided no more prednisone.
Thanks for any insight on what to expect.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 2/18/2022 6:02 PM (GMT -8)
I think my infusion lasted about an hour. I didn't have any reactions and I don't remember being fatigued. People suggest to drink plenty of water that day.
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 238
Posted 2/18/2022 6:32 PM (GMT -8)

Sara14 said...
I think my infusion lasted about an hour. I didn't have any reactions and I don't remember being fatigued. People suggest to drink plenty of water that day.

I will add the water to my list-Thanks
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Mariposa444
Regular Member
Joined : Apr 2015
Posts : 32
Posted 2/18/2022 8:57 PM (GMT -8)
I have a home nurse deliver my Entyvio infusions every four weeks under our socialized medicine system here in Australia. It’s a lovely experience, we have a great chat and it’s all done in less than an hour. I’ve been on it since July and have had no side effects. The jury is still out on whether it’s actually working (I’m back on steroids from a flare now) but GI doctor wants me to be patient a little bit longer as it can be notoriously slow to kick in.
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 238
Posted 2/19/2022 7:54 AM (GMT -8)

Mariposa444 said...
I have a home nurse deliver my Entyvio infusions every four weeks under our socialized medicine system here in Australia. It’s a lovely experience, we have a great chat and it’s all done in less than an hour. I’ve been on it since July and have had no side effects. The jury is still out on whether it’s actually working (I’m back on steroids from a flare now) but GI doctor wants me to be patient a little bit longer as it can be notoriously slow to kick in.

That is nice having your infusion at home. Hope it starts working for you.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1826
Posted 2/19/2022 8:15 AM (GMT -8)
The actual drip lasts just 30 minutes. Entyvio isn’t weight-based like remicade and they can also run the drip faster than with remicade. Checkin and setup and all that goes with it takes about 20-30 minutes. I am usually in and out of there in 1 hr. I go every 8 weeks on a Tuesday at 11 am. Sometimes after I am a little tired the rest of the day, other times I don’t notice any difference. I try to drink a bottle (20 oz) of water before I go in — mainly because I have small veins and being hydrated does tend to make a difference. I’ve had the same 2 nurses at my infusion center for the 5 years I’ve been going so we always have a nice chat. Last year they added a 3rd nurse and she’s nice too. They all know my veins now and how weird they are so I only get one poke most times. Which is great !

The only side effect I’ve ever noticed is my lips get very dry that night. Not my mouth — just my lips. Which is weird right? Chapstick works on that.

Hoping for success for you! I was in complete symptomatic remission by month 4 with many small decreases in symptoms that made life so much more tolerable before that 4 month mark. Rectals— either steroid or mesalamine — foams , enemas or suppositories will be your friend during those first months.

Will be looking forward to your updates!
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 238
Posted 2/19/2022 8:35 AM (GMT -8)

FlowersGal said...
The actual drip lasts just 30 minutes. Entyvio isn’t weight-based like remicade and they can also run the drip faster than with remicade. Checkin and setup and all that goes with it takes about 20-30 minutes. I am usually in and out of there in 1 hr. I go every 8 weeks on a Tuesday at 11 am. Sometimes after I am a little tired the rest of the day, other times I don’t notice any difference. I try to drink a bottle (20 oz) of water before I go in — mainly because I have small veins and being hydrated does tend to make a difference. I’ve had the same 2 nurses at my infusion center for the 5 years I’ve been going so we always have a nice chat. Last year they added a 3rd nurse and she’s nice too. They all know my veins now and how weird they are so I only get one poke most times. Which is great !

The only side effect I’ve ever noticed is my lips get very dry that night. Not my mouth — just my lips. Which is weird right? Chapstick works on that.

Hoping for success for you! I was in complete symptomatic remission by month 4 with many small decreases in symptoms that made life so much more tolerable before that 4 month mark. Rectals— either steroid or mesalamine — foams , enemas or suppositories will be your friend during those first months.

Will be looking forward to your updates!

Sounds like you have the routine down pat. Hope I have as good a response and infusion experience as yours. Sounds like water is a must. Have you been able to taper off rectals. I am currently on Rowasa nightly. Would love to travel without those. Thanks for the information. Will keep you posted when I start.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1826
Posted 2/19/2022 8:51 AM (GMT -8)
I don’t use any rectals now My GI says I am in complete “deep” remission. I do still have problems with diverticulitis so occasionally use Canasa suppositories as they do seem to help a bit. I also sometimes have days where I feel a little crampy and have a 2nd or 3rd BM but whether that the DT or UC is hard to tell.

It’s also good to ask what your orders read as. Mine allows for a week either way in scheduling without a new order , so if you have a vacation planned and it happens to fall on the same week as an infusion, I’ve reschedule for 6 days before my normal 8 week timeframe. I’d rather have it early at 7 weeks than push it to 9 weeks. (Hope that made sense).
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 238
Posted 2/19/2022 9:15 AM (GMT -8)

FlowersGal said...
I don’t use any rectals now My GI says I am in complete “deep” remission. I do still have problems with diverticulitis so occasionally use Canasa suppositories as they do seem to help a bit. I also sometimes have days where I feel a little crampy and have a 2nd or 3rd BM but whether that the DT or UC is hard to tell.

It’s also good to ask what your orders read as. Mine allows for a week either way in scheduling without a new order , so if you have a vacation planned and it happens to fall on the same week as an infusion, I’ve reschedule for 6 days before my normal 8 week timeframe. I’d rather have it early at 7 weeks than push it to 9 weeks. (Hope that made sense).

I need to check to see how my orders read. That makes total sense about about timeframe for the 8 week scheduling. I know they said the 3 loading doses didn't have any wiggle room.
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 238
Posted 2/21/2022 9:40 AM (GMT -8)
Just got my first Infusion of Entyvio set for March 15th. Thanks for everyone's support.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 2/21/2022 9:54 AM (GMT -8)
Good luck!
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1826
Posted 2/21/2022 2:10 PM (GMT -8)
🤞🤞🤞😀
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rootintootin
New Member
Joined : Feb 2022
Posts : 2
Posted 2/23/2022 8:21 AM (GMT -8)
UC 24 yrs, 59 yo. Entyvio also my 1st biologic. Started working after week 2. Been on it 20 months. Been a lifesafer, now take no other meds, my ferritin was so low I also had to have iron infusions. My insurance denied it 4 times (yes! in US! where healthcare SUCKS) so Takeda gave it to me for free the first several times and now insurance pays bc it really really works for me, and iron infusions are not reall cheap. Ferritin- 14 to 222! This is the best I have ever felt since dx 24 years ago. Good luck to you
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 238
Posted 2/23/2022 8:38 AM (GMT -8)

rootintootin said...
UC 24 yrs, 59 yo. Entyvio also my 1st biologic. Started working after week 2. Been on it 20 months. Been a lifesafer, now take no other meds, my ferritin was so low I also had to have iron infusions. My insurance denied it 4 times (yes! in US! where healthcare SUCKS) so Takeda gave it to me for free the first several times and now insurance pays bc it really really works for me, and iron infusions are not reall cheap. Ferritin- 14 to 222! This is the best I have ever felt since dx 24 years ago. Good luck to you

Thanks for your update on Entyvio-Glad your are doing well and also that it is now covered by insurance.
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RyanC
Regular Member
Joined : Jul 2017
Posts : 134
Posted 2/25/2022 8:53 AM (GMT -8)
I was on Entyvio and then got vaccinated and it stopped working. Covid vaccine for some reason counter acts the medication and I’ve been flare and struggling to get something to work for last 6 months. I loved Entyvio, 1 hour in and out and no side effects.
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 238
Posted 2/25/2022 11:57 AM (GMT -8)

RyanC said...
I was on Entyvio and then got vaccinated and it stopped working. Covid vaccine for some reason counter acts the medication and I’ve been flare and struggling to get something to work for last 6 months. I loved Entyvio, 1 hour in and out and no side effects.

Sorry you weren't able to continue on Entyvio. Hope they get something that will work for you.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1826
Posted 2/25/2022 12:11 PM (GMT -8)
Just as a data point, for me the covid vaccines had no effect on my remission. I’ve had 3 doses so far. And my antibody response to the vaccine has been quite high.
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 238
Posted 2/25/2022 1:33 PM (GMT -8)

FlowersGal said...
Just as a data point, for me the covid vaccines had no effect on my remission. I’ve had 3 doses so far. And my antibody response to the vaccine has been quite high.

That is good news.
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Theanxiousaries
Regular Member
Joined : May 2021
Posts : 431
Posted 2/27/2022 12:56 AM (GMT -8)
I had my first infusion two weeks ago. Felt tired after but I put that down to two hours of adrenaline and anxiety. I had neuralgia pain the next day. My Dr said it’s not a side affect and isn’t sure it’s related. My next infusion tomorrow. I have had solid BMs a few times in the last two weeks. So it appears something is helping. Still taking 3x1.2g mezavant and 1mg pred which I will be completely off by Wednesday
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 238
Posted 2/27/2022 6:19 AM (GMT -8)

Theanxiousaries said...
I had my first infusion two weeks ago. Felt tired after but I put that down to two hours of adrenaline and anxiety. I had neuralgia pain the next day. My Dr said it’s not a side affect and isn’t sure it’s related. My next infusion tomorrow. I have had solid BMs a few times in the last two weeks. So it appears something is helping. Still taking 3x1.2g mezavant and 1mg pred which I will be completely off by Wednesday

Thanks for the update. I have my first infusion in 2 weeks.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1826
Posted 2/27/2022 7:28 AM (GMT -8)

Theanxiousaries said...
I had my first infusion two weeks ago. Felt tired after but I put that down to two hours of adrenaline and anxiety. I had neuralgia pain the next day. My Dr said it’s not a side affect and isn’t sure it’s related. My next infusion tomorrow. I have had solid BMs a few times in the last two weeks. So it appears something is helping. Still taking 3x1.2g mezavant and 1mg pred which I will be completely off by Wednesday

Fingers crossed for you TAA! Sounds like things are moving in the right direction!
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