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Developing Entyvio Side Effects: thinking about stopping meds

Fri, August 13, 2021 9:28 PM

After being diagnosed with UC 8 years ago, I was originally started on Lialda and I did great for 3 years. Then I had a bad flare that no amount of steroids (oral or enema) could touch. I changed gastroenterologists and was started on Entyvio infusions. They changed my life! I have been in complete remission for 4 years on Entyvio. Complete remission fully confirmed 1.5 years ago via my last scope. My only side effects were fatigue the day of and sometimes day after the infusion. I travel 6 hours to the infusion center though so thought maybe that could be it. But after my May infusion, I got flushing, severe nausea, mild diarrhea, blurry vision, and loss of appetite. I felt better by the 6th week or so, saw my nurse practitioner, and she said she really didn't think it was from Entyvio. She wanted me to try it again. So I did in July, and I was sick for a week. Then felt a little better but still off. Last week I developed tingling and numbness in my limbs, confusion, loss of appetite, and of course weight loss, and mild nausea. I was swiftly brought in for further testing: brain MRI and EMG, praise be to God both were normal. All blood tests for mineral/vitamin deficiencies are normal. They still don't think it's Entyvio. I am getting a Entyvio trough and reactive antibody test in a couple weeks though to confirm if I am reacting to it. My gastroenterologist wants me to start back on Lialda. I'm nervous about going back on it and flaring. I'm nervous about going back on any medication in general. Is there anyone who has successfully been off meds with no flares or very mild flares? I have never had a mild flare. When I flare it's for a year or more and requires alternative medication. Thank for reading all this and your responses! 

Joined Aug 13, 2021

Sun, August 15, 2021 9:28 PM

Reply posted for UCDVM.

I have Crohns not UC and have been managing w Entocort - doc finally convinced me to go on still undecided Biologic. Haven't yet started and stories like this scare the hell out of me.

My flares are typically mild and last 2 days - admitted to the hospital once during a blockage but aside from that I'm able to control with 60mg of prednisone tapered to 10 over 2-4 weeks.

FPO Breaktheory
Joined Aug 5, 2021

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