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Crohn's Disease Forum » Parents of Kids with IBD » Entyvio- ER or no ER


01-14-2017, 11:04 AM   #1
Josuesmom
 
Join Date: Apr 2016
Location: Chandler, Arizona
Entyvio- ER or no ER

Hi all,

So, after getting no results on Steroids, Mesalamine, 6MP and Remicade my son was scoped and found to have the most damage since diagnosed (January 2011) We decided to do a gut rest, take him off al meds and do enteral feedings. We did that for a couple of months and things seemed a little better so we went ahead and moved from a NG tube to a G tube (nightmare complications he spent 8 days in the hospital because of that) we tried that for a bit and he was just not tolerating it (nausea, and rapid weight loss, 8 pounds the first week) Scoped again and still pretty bad damage in the esophagus (he can't lay down cause everything comes up) colon, and terminal ileum, along with pretty bad mouth sores, constantly, not to mention the pain.

After last scope GI Dr. decided that it wasn't working and he prescribed Entyvio as a last resort before considering surgery (which by the way, son says "no way" to surgery, he will turn 18 in two months) Anyways, he had his first infusion 3 weeks ago, started with limb and back pain the following day, it continued all the way to his second infusion which was last Friday (1/6/17) since then he has had severe back and left side pain, and now is very sick with flu-like symptoms (no fever) he can barely stay awake from severe fatigue (like, dozing off everywhere) Not to mention that his Crohn's pain, Lower right and left quadrant have been over the top.

So, my question is, has anyone here used Entyvio? and, should I be overly concerned with his new symptoms? Wondering if I should take him to the ER, as he is famous for just getting very sick from things that would not be a big deal to the rest of us. I am especially concerned because of the med he is on.

Thank you all for any insight.
-Esmeralda

Last edited by Josuesmom; 01-14-2017 at 11:33 AM.
01-14-2017, 12:23 PM   #2
Maya142
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Have you called the on-call GI? That's what I'd do first and see what he/she says.

I'm sorry to hear he has had such a hard time.

Is he still doing G tube feeds? My daughter has also had a G tube but she has Gastroparesis, so we needed to use a GJ tube (which was threaded into her small bowel) to bypass her stomach. When we did G tube feeds, her stomach's motility was so slow that she would just throw up.

If there is a lot of inflammation in his stomach, that could also slow down his motility. A GJ tube is very easy - it is placed by interventional radiology through the same stoma you have for his G tube - no surgery or anything.

I would also consider changing his formula - some kids need very broken down formulas when they are very inflamed, like Neocate or Elecare (which are elemental). Is he doing continuous feeds? Sometimes just slowing the rate of the feed can help.

Doing EEN in addition to Entyvio might help with his symptoms. Entyvio is known to take a while to work, so often steroids or EEN are used with it, to induce remission.

Good luck!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-15-2017, 05:32 AM   #3
Samboi
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Join Date: Jan 2012
Location: Australia

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I started Vedoluzimab (entyvio) at the end of last year. I have my next infusion this Sat.
The most pronounced symptom I have experienced is the extreme fatigue. I've been on a high dose of Pred, so I am more accustomed to having excessive energy. The infusion leaves me shattered though. I am hoping this will pass with time. I recalled that Humira had a similar effect when I first started taking it. I feel like I have been hit by a truck.

Only other thing I have noticed is the randomness of its effectiveness.
One day I'm fine, next day sick, then fine for a few days, then sick again. Very inconsistent so far. But my overall symptoms have improved. Slowly. Very slowly.
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Dx - Crohns Disease - 1992
Ileostomy - Jan 2012, Reversed Aug 2013
Pred works, all else seems to fail
Trying Vedoluzimab - running out of options
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01-15-2017, 10:21 AM   #4
steve55
 
Join Date: Jul 2012
Location: New York
Entyvio takes a while to start working like 4 to 6 months. I assume he already tried Remicade and Humira but I would think that Stelera would have been a better option at this point. Was this considered?
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