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Crohn's Disease Forum » Support Forum » Is Entyvio right for me?


08-23-2016, 09:30 PM   #1
snarf1033
 
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Is Entyvio right for me?

Tried Humira for 3 months didn't help. Doc wants to entry Entyvio now. Been in flare for probably few years with no relief. Symptoms include daily extreme fatigue, multiple loose stools, lethargic, muscle weakness hamstrings, soarness in lower belly and can't gain weight. Diagnosis was Mild Crohns in Ileum small intestine. Daily feels numb not sure how I get through the day just so weak. All blood tests normal.

Will Entyvio help me? So desperate for relief.
08-24-2016, 09:49 AM   #2
ronroush7
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I am not sure. I hope it does. Please let us know how you are.
08-24-2016, 10:31 AM   #3
valleysangel92
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Hello, I am currently facing the same decision myself after an allergic reaction to inflectra (infliximab). Entyvio is still very new, so of course there isn't a lot known about how successful it actually is, but, from what I am told, doctors are very fond of it.

I don't know how much you have been told, but it's a very clever medication that works directly on the white blood cells in the gut, but doesn't touch the white blood cells elsewhere in the body, meaning you don't get the systemic effects on the body that you do with humira etc. This doesn't mean there are no side effects, but they are generally considered less likely.

The downside to this is that it takes longer to work than the other biologics because it doesn't work on the white blood cells already attacking your gut, it just stops new ones, so you have to wait for the old ones to die before your gut can start healing. If you have crohns disease they will give you 14 weeks for it to start working before they decide it isn't for you.

Personally, I am going to give it a go provided i'm given the go ahead, as from my point of view I don't have anything to loose, I have tried all other medical treatments and am not allowed any of the TNFs due to my reaction, so entyvio is my last option before trial medications.

This is a very personal condition though, I guess it comes down to whether you feel its worth taking a chance on it. No one can tell you for sure it will help you, no treatment comes with a guarantee, but the only way to know is to try it.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
08-27-2016, 09:29 PM   #4
goofy
 
Join Date: Aug 2016
Location: West Haven, Utah
I have been on it for four months now, I am not seeing very big improvemnets
08-27-2016, 09:36 PM   #5
ronroush7
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I have been on it for four months now, I am not seeing very big improvemnets
I don't know how long Entyvio takes to work. Maybe you should ask your doctor about another biologic.

08-30-2016, 04:07 PM   #6
CrohnsHobo
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I have been on Entyvio for about 2 years. My doctor ran trails with the drug. I have taken and failed Humira, Stelara, Cimizia and Remicade, sub-total colectomy with temp ostomy and reversed, 20 years of Crohns.

So Entyvio was basically my last option before a permanent ostomy. On the plus side my intestines & bowl movements have been better than they have been in 20 years. It did take about 6 months before I noticed any change. Moved to 75% solid bowl movements, much less frequency 2-3 times a day down from 8-10. I generally feel good, or at least as good as you can for 20+ years of the disease. I get the infusion every 4 weeks.

Only real downside for me has been a persistent fistula for the past two years. Entyvio has not been any help with healing that.

In addition to the Entyvio I take Imuran and augmentin and Flagyl depending on how my fistula/abscess is going.
09-02-2016, 06:38 PM   #7
Edgey
 
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Tried Humira for 3 months didn't help. Doc wants to entry Entyvio now. Been in flare for probably few years with no relief. Symptoms include daily extreme fatigue, multiple loose stools, lethargic, muscle weakness hamstrings, soarness in lower belly and can't gain weight. Diagnosis was Mild Crohns in Ileum small intestine. Daily feels numb not sure how I get through the day just so weak. All blood tests normal.

Will Entyvio help me? So desperate for relief.
I'm in the exact same box.

be sure to update us on the results and i'll post when i try it too
much love
09-02-2016, 06:46 PM   #8
snarf1033
 
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My Dr. Is heading up a study that I am screening for next week. It's another biologic. Hopefully I get the medicine and not placebo in the test.
09-03-2016, 09:17 AM   #9
emilyg333
 
Join Date: Jan 2016
Location: Northbrook, Illinois
I took humira and it didn't work so I switched to entyvio. I am just finishing 14 weeks on entyvio and unfortunately it did not work. I didn't feel any improvements the entire time I was on it. I would give it a try because I know it works for some people. Wishing you the best!
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