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@bayhorse

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...

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Replies to "Hi, Kitty: My understanding is that Entyvio works specifically in the gut; it's not a full..."

Hi..yes it is the brain aneurysm that causes the concern for me ..plus I have heard all the horror stories from all the people that have lost their hair after having Entyvio..I have had a lot of hair come out from my long covid alone. I was also hospitalized twice from the steroids, and 23 years ago I was on prednisone and wound up getting a severe infection that was resistant to drugs except for vancomycin so that was another week in the hospital and left with a port and had to give myself vancomycin twice a day IV for eight weeks. I proved I can not be on steroids. I got very ill from the Remicade , the first time I had it..I had a severe reaction to the drug while it was running in. Wishing you the best..I do so much better on the weekends. The physical work that I do is causing my gut to rev up. When I do not work on the weekend , I can live a normal life. Thank you for all your notes. Wishing you the best also..Sincerely, kitty2