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Crohn's Disease Forum » Treatment » Entyvio/Vedolizumab » Struggling with Entyvio


09-18-2015, 11:00 AM   #1
kjhuds
 
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Struggling with Entyvio

Hello! I'm a 41 year old wife and mother of 2. I've been 'surviving' with Crohns (sometimes barely) for over 18 years now. I've been on every med under the sun and it's eventually stopped working. I've had 3 surgeries, colon removed, ileostomy and reversal. They tell me Entyvio if my last option. I've had 3 infusions now and am slowly feeling worse. The headaches and joint pain are sometimes unbearable. I haven't seen any improvement with my guts yet and are getting very frustrated. I have never let this disease get the best of me. I've always fought hard to not let it take total control of my life but since starting these infusions I'm starting to feel like I'm losing control. The pain is getting the best of me. Haven't been to work all week and I'm starting to get down. When does this med finally start working and will the pain go away?
09-18-2015, 12:10 PM   #2
Fernando1
 
Join Date: Mar 2015
I had 5 Entyvio infusions, I thought I was getting better but actually I returned to being the same. Keep getting warned that Entyvio is slow acting that eventually it will work...it does not seem like it for me. The way you are describing it may not work for you either but do give it until the 6th infusion before you give it up. There isn't much else if you have already gone through the anti-TNF drugs like Humira and Remicade.

A remote possibility is Stelara which will be an off-label use (it is used for psoriasis), see this forum for people that are giving it a try.
09-18-2015, 12:28 PM   #3
kjhuds
 
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I was on Stelara for a year before they put me on Entvyio. It didn't do a thing for me. I was consistently in a flare that whole year. I wasnt on any meds for 6 months while I was waiting for the insurance company to approve Entvyio. I know my body has a long way to go to bounce back from not being on meds but being on this drug is almost worse then not being on anything. I've told myself that I've got to give it until at least the 6th infusion before I give up. Somedays the struggle just didn't seem worth it. Not normally a 'Debbie downer' but feel like this is draining every bit of normal I have left.
09-18-2015, 02:03 PM   #4
Robrich
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To get entyvio to work for me we had to add MTX sc 1ml/w after about 5 infusions and later increased the entyvio to every four weeks
That did the trick for me. Both helped and now in remission
For those who have been through many meds the 8 week doing is not enough med.
Good luck
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DX. Crohns 50 yrs. with fistulas for 20 years until remicade
Meds: MTX,ENTYVIO 9/14' augmentin,
pred. 10mg.
probiotics
d3, calcium, k2' magnesium, resveratrol,
Turmeric,paleo, bone broths
Past: humira no response after 6 mos., remicade amazing for 10 years then stopped working.
Entocort
6mp, Imuran never helped nasty side effects liver problems, caught pneumonia
Asacol, rowasa no response
Flagyl worked well but got PN cipro same.
09-18-2015, 02:23 PM   #5
ronniegam
 
Join Date: Nov 2013
Location: pully, Switzerland
Just to put my two cents in, I spent 3-4 months on Entyvio this winter. Not only did my Crohn's get worse but I was so sick that it made the Crohn's symptoms seem mild.

I had multiple, severe irritable bowel attacks which were exasperated by ingesting any dairy products which I normally tolerate very well. Normally during a flare I have pain in the lower right side of my bowel. Thanks to the Entyvio, aside from the IBS cramps, I had searing pain all across my bowel. My eyes became red, swollen, dry and scratchy to the point of distraction. My fatigue, which was all encompassing, became even worse. I had body aches. I was dizzy.

I have had Crohn's for 15 years and in that time I've had them all, Remicade, Cimzia, Humira... I have never been sick like this from any of them. I can only assume, judging from the posts on this subject, that Entyvio is problematic for a lot of people. Personally I would only use it as a last resort.
09-18-2015, 04:37 PM   #6
Fernando1
 
Join Date: Mar 2015
Robrich:

Is that a baby Ridgeback in your post or ...what breed ?

I had a Ridgeback for 15 years and looked exactly like your picture.
09-18-2015, 04:57 PM   #7
kjhuds
 
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Robrich: I was on MTX when I was on Humira. I ended up with a severe infection with a fistula that developed. They took me off both and now I'm a little scared of MTX. I've been told remission is obtainable with every med that I've been on and have never obtained it. This was going to be my saving grace. ARGH! Hate to let my frustrations get the best of me but with this pain it's hard to keep positive.
09-22-2015, 01:49 PM   #8
lgpcarter
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Hang in there, kjhuds! I am going for my 3rd Entyvio infusion tomorrow and also hoping to achieve remission with it. I haven't had surgery (yet) but have been on pretty much every drug.

I am also on MTX with the Entyvio. Seems like a lot of people are on a immunosuppressant along with it. Maybe that will help.
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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
09-22-2015, 08:17 PM   #9
Robrich
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Fernando yes she is, 100% from championship lines.
that was taken the day we brought her home at exactly 8 weeks old. She is now 17 mos. time to update the photo maybe?
She's my 3rd RIdgeback.
09-22-2015, 10:13 PM   #10
kjhuds
 
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Thanks everyone for your advice and just listening to me. It's been exactly a week since my 3rd infusion and I've been feeling OK again. It was a rough week but if this is going to work, it'll be well worth it! I'm the first in my area to receive Entyvio so there isn't anyone here that I can ask question and voice my concerns. The nurses try their best, and are wonderful, but without having anyone to compare me to really didn't have any solid answers. You have all been a life saver for me! Thanks again for being a major lifeline!
12-29-2015, 11:47 PM   #11
jptpa
 
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Will have my second dose tomorrow. Long time cronie. Best of luck to you.


09-22-2016, 05:59 PM   #12
itsmebabs
 
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i so wish everyone luck and good wishes on this drug.
I've been on Entyvio since December on the regular regimen but since i start failing around the 6th week on it the doctor wants me to take it every 4 weeks. Is it safe to do? Anyone else on that schedule with good results and not many side effects? This drug is my last shot. Also have a hard time with insurance and assigned pharmacy and doctors office to coordinate getting medicine. Seems I'm always on the phone fighting for something. have many other illnesses too and can't get disability. i'm scared of the future. Also live in NY and next year being forced on Marketplace health insurance which I don't know if any great/good GI's will accept and will the insurance cover meds. Also have to get dilation(ballooning) every 4-6 weeks because i get blocked where I had iliocolic resection. Can hardly eat much and buy Peptamen to fill in for nutrients plus when i can't eat at all. Scared when my money runs out since Im not working now and am a single payer for health insurance and being forced out of major insurance companies. I'm really scared if I can't get the care I need.
09-22-2016, 09:59 PM   #13
my little penguin
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Tagging kimmidwife
I know her did is on a shorter schedule
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DS - -Crohn's -Stelara -mtx-IVIG
09-28-2016, 05:56 AM   #14
lgpcarter
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I'm on every 8 weeks, but wanted to send support. I was on weekly Humira and more frequent Remicade back in the day and people seem to vary all over the place. I think the intervals is a bit go a guessing game as it depends how quickly your body metabolizes the drugs.
11-15-2016, 07:23 AM   #15
itsmebabs
 
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Thank you. Wishing everyone luck with this drug!!! Four weeks doing the trick for now but now with being forced onto Obamacare since self pay private insurance and being cut off in Ny don't know how I'm going to get it anymore since my GI doesn't accept and Marketplace doesn't seem to cover. Ugh! Nightmare!
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