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Autoimmune and methods for gut heal please share stories
Autoimmune Diseases | Last Active: Oct 3, 2023 | Replies (58)Comment receiving replies
Hi..thanks for your reply..much appreciated. They want me on Entyvio, I am scared of it due to the side effects. I have a unruptured brain aneurysm along with long covid syndrome which kicked my immune system pretty hard. I had remicade many years ago and did not do well. I also do not tolerate many drugs well, I am not on any treatment at this time. I was on Budesonide 9mg for 8 months which was a total nighmere for me. I would love to connect with your on your Entyvio experience when you have time. Thanks so much..kitty2
Replies to "Hi..thanks for your reply..much appreciated. They want me on Entyvio, I am scared of it due..."
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Hi, Kitty: My understanding is that Entyvio works specifically in the gut; it's not a full body immune suppressant like Remicade. I was on Remicade for 13 years, but had to go off of it because I developed lupus, though not from the Remicade. (My immune system system is out of whack and did that all on its own.) I did fairly well on the Remicade and wonder what happened with you, as you said you didn't do well.
In any event, I have had no discernible side effects so far from the Entyvio. I have many illnesses -- lupus, celiac sprue, UC, heart failure, chronic active Epstein Barr/chronic fatigue syndrome, and osteoporosis -- and I am extremely chemical/fragrance/drug sensitive. Perhaps I've been lucky that the IV drugs have worked for my UC; I was hospitalized when I was on steroids, the colitis was out of control.
Not meaning to push at all, but still wonder if you should at least talk to your gastro about the Entyvio, as its mechanism apparently is different than the Remicade's. I believe it also works differently than Budesonide. Is it the brain aneurysm that causes your concern about Entyvio side effects?
Once again, wishing you the best...