Crohn's Disease Forum » Treatment » Entyvio/Vedolizumab » Swollen Lymph Nodes on Entyvio

12-17-2016, 02:41 PM   #1
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Swollen Lymph Nodes on Entyvio

My first infusion was 12/2. I had flu-like symptoms immediately afterward. A headache began during the infusion and was resolved on Day 12. I had never experienced swollen lymph nodes before but my neck and groin areas are swollen and it is painful. I had my 2nd infusion and I want to sleep.

Also, maybe it just isn't working yet but my diarrhea has increased, mouth ulcers have increased, painful skin rashes have returned. I would think I'm having a flare but the only time I did not have these symptoms is when I did not take any medication at all. Weight gain has been an ongoing issue. My normal weight range is 140-155. That is a normal healthy weight for me. I am almost up to 165 and I can barely eat!

Has anyone else experienced symptoms getting worse before they get better? I still have a ton of hope this medication may be the one for me. However, the swollen lymph nodes may be deal breaker.
12-17-2016, 04:08 PM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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I have never been on Entyvio but with the flu like symptoms and swollen lymph nodes I would consider calling your doctor.
01-06-2017, 07:53 PM   #3
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So far, the doctor is telling me that I need to stay on a maintenance medication and he would like me to give Entyvio some time before discontinuing. I now have huge scaly patches on my knees, elbows and ankles too. My Dr. prescribed Vitamin K for a week. I'm not sure what that is supposed to do--if anything. I am far more miserable on this medication than untreated Crohn's. I said the same thing about Humira though so maybe I'm just not good with meds.
01-07-2017, 08:12 AM   #4
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Join Date: Jan 2012
Location: Australia

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I started back in Dec. The only real side effect I have had is overwhelming fatigue. I'm still on a relatively high dose of Pred that I am tapering down from, so the fatigue is very surprising.
The only other issue is the inconsistency in effect. I am recovering from a flare that has manifested as proctitis. I'm fine one day, then horribly sick the next day. Sick for a few more days. Then totally fine again. I am baffled by how utterly random it seems to be.
I'm hoping for a more consistent effect after my next dose in two weeks.
Dx - Crohns Disease - 1992
Ileostomy - Jan 2012, Reversed Aug 2013
Pred works, all else seems to fail
Filgotinib trial Jan 2018

Crohn's Disease Forum » Treatment » Entyvio/Vedolizumab » Swollen Lymph Nodes on Entyvio
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