Share Facebook
Crohn's Disease Forum » Your Story » Going to my first Entyvio infusion today


07-13-2015, 03:21 PM   #1
Grandma McB
 
Join Date: Jul 2015
Location: Eugene, Oregon

My Support Groups:
Going to my first Entyvio infusion today

My history of Crohns started in 1974. I was 21 years old and it took forever for a doctor to diagnose me. Crohns started in my large intestine. In 1980 had about 1/2 of large removed and reconnected. Then nothing until 2007 my colonoscopy showed my Crohns was were the small and large intestines connected and was narrowed. Had surgery and they removed the illiocelcal valve and reconnected the intestines. It took about 2 years and several drugs and finally was put on Humira which helped me tremendously! Now after my colonoscopy and ct I now have Crohns in a couple of places in the small bowel now besides where the small and large intestines were connected.

The doctor said I could change my Humira injection from every other week to once weekly or try the Entyvio.

Today I go in for my first infusion of Entyvio and I must say I am a bit nervous.
07-13-2015, 06:14 PM   #2
24601
Forum Monitor
 
Join Date: Dec 2013
Location: London, UK
I believe Entyvio takes quite a while to work so will you be doing any bridging therapy to tide you over until it gets to therapeutic levels? Something like prednisone, Entocort or enteral nutrition?

Are you adding an immunomodulator to prevent formation of antibodies?

Good luck with the Entyvio! I hope it's a wonder drug for you

You can read more about others' experiences with Entyvio in the sub-forum here
__________________
Stricturing jejunoileitis dx 1996 aged 17
Current treatment: stem cell transplant
Previous treatment: Humira + methotrexate
Past treatments: prednisolone, azathioprine, budesonide, pentasa, EEN (oral and NG), elimination diet, SCD, whipworms, 6mp, Remicade, anti-MAP antibiotic therapy
Surgeries: small bowel resection and strictureplasties in 2001, 2005, 2009, 2014
07-14-2015, 11:59 PM   #3
Grandma McB
 
Join Date: Jul 2015
Location: Eugene, Oregon

My Support Groups:
I have been on Imuran 150 mg for quite some time. Doc was wanting to increase the level but blood tests says I am at my maximum. My first infusion yesterday went just fine. No reaction to the Enytvio.
07-15-2015, 12:00 AM   #4
Grandma McB
 
Join Date: Jul 2015
Location: Eugene, Oregon

My Support Groups:
I have been on Imuran 150 mg for quite some time. Doc was wanting to increase the level but blood tests says I am at my maximum. My first infusion yesterday went just fine. No reaction to the Enytvio.
07-15-2015, 09:48 AM   #5
Sharkgirl
 
Sharkgirl's Avatar
 
Join Date: Nov 2014

My Support Groups:
I just started Entyvio 6 weeks ago and am very slowly seeing improvement; I also take Imuran and Lialda. Hang in there if you don't have results right way (I started to get very frustrated until I understood that this medicine wouldn't be an immediate miracle drug and that I need to give it time), I am very hopeful that this will put me into remission! Good luck!
07-15-2015, 10:08 AM   #6
Grandma McB
 
Join Date: Jul 2015
Location: Eugene, Oregon

My Support Groups:
Thank you for letting me know. Appreciate all the help and information that this forum has. I am 61 years old and was diagnosed about age 21. I feel very lucky that after my first surgery in 1980 and then until my 2nd surgery in 2007 I was not on any medicine at all. I actually had 2 surgeries in 2007 where they connected the small and large intestines had a hole so after I went home after the first one in 2007 I had to go back for a 2nd one and ended up spending a month in the hospital. What sent me into my surgeries in 2007 was that after a colonoscopy it showed that the intestines were narrowing down due to the crohns. Everyone's journey in living with crohns is so different. Good luck to you also on the Entyvio!
07-15-2015, 12:50 PM   #7
Crohnzie Girl
Senior Member
 
Crohnzie Girl's Avatar
 
Join Date: Jun 2013
Location: Carlisle, Pennsylvania

My Support Groups:
Hi all, I'm supposed to be on Entyvio but I'm scared. I took cimzia for 2 yrs and had to get an operation. In my eyes, what's Entyvio gonna do? Do drs even know the long term effects for this drug?
__________________
I have been on Asacol, Flagyl, Cipro, 6MP, Remicade, Humira, Cimzia and Azathiaprine. I failed each one of them. I'd be in remission for 6 mths at a time but then it come back full force!

Colostomy since 2013 best thing for me!

Looking for support and sharing stories.
07-15-2015, 01:26 PM   #8
Sharkgirl
 
Sharkgirl's Avatar
 
Join Date: Nov 2014

My Support Groups:
I was on Cimzia for two years and felt great but unfortunately it stopped working on me. I then got on Remicade and it didn't work as well as anticipated so I tried Entyvio. I was really nervous about starting Entyvio but in it all came down to me feeling better. I want to feel better and not have to call in sick to work all the time. The side effects are pretty typical. I was scared to because the drug is so new but again, I just want to feel better and don't want surgery so I took the plunge. I'm slowly starting to feel better and have high hopes. Did Cimzia work on you?
07-15-2015, 01:58 PM   #9
Crohnzie Girl
Senior Member
 
Crohnzie Girl's Avatar
 
Join Date: Jun 2013
Location: Carlisle, Pennsylvania

My Support Groups:
I don't think it worked as well as I hoped since I got really bad with my flare ups went on an antibiotic and caught C-Diff which is horrible if you've ever had it. I felt like I was too far gone for cimzia to work. Now that things have calmed down I'm still debating on this new drug. Entyvio it would be an infusion drip every 6 weeks for 30 mins. My hair is still falling out and when I get the sniffles it still takes me a little longer to go away than most ppl. I guess I just need a really really strong motive to once again be on another drug and to finally see some improvement.
07-15-2015, 07:38 PM   #10
lgpcarter
Senior Member
 
Join Date: Jun 2013
Location: Canada

My Support Groups:
Hi all, I'm supposed to be on Entyvio but I'm scared. I took cimzia for 2 yrs and had to get an operation. In my eyes, what's Entyvio gonna do? Do drs even know the long term effects for this drug?
They've got about 2 years of data from the clinical trials and according to my GI and the reading I have been doing, it looks the like the side effect profile is "good" meaning no huge red flags.
__________________
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 8 weeks, Imuran 50 mg, Flagyl and Cipro 500 mg twice a day
Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone
07-15-2015, 07:44 PM   #11
Crohnzie Girl
Senior Member
 
Crohnzie Girl's Avatar
 
Join Date: Jun 2013
Location: Carlisle, Pennsylvania

My Support Groups:
Thanks Igpcarter. That's good news. But idk it's enough for me to take that plunge yet. Lol
07-15-2015, 07:49 PM   #12
lgpcarter
Senior Member
 
Join Date: Jun 2013
Location: Canada

My Support Groups:
For sure! It is all about balancing the risks (and your comfort) of the side effects of the drugs vs the long term effects of inflammation on your body and damage in terms of intestinal scarring, etc.
Reply

Crohn's Disease Forum » Your Story » Going to my first Entyvio infusion today
Thread Tools


All times are GMT -5. The time now is 02:43 PM.
Copyright 2006-2017 Crohnsforum.com