Re: Entyvio

Anna625Member

Just curious what others' experience with Entyvio has been. I seem to have antibiotic resistant pouchitis, was on different antibiotics most of last year and started Entyvio in late December. I felt a lot of relief from it earlier this year and was going every 8 weeks, then felt it was wearing off after about 4-6 weeks so now I'm going every 6 weeks but don't feel much relief from it anymore. I just went back on Cipro, was supposed to be a 2 week dose but I had such awful back pain I stopped after a week and now I'm having all the same GI issues I was having before. I'm scared that the Entyvio isn't helping with the pouchitis anymore.

6/17/243:43 PM

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hansmanMember

Hi Anna - when I got Entyvio the same happened. After 4 weeks of infusions I felt it is wearing off. The Doc switched me to a 4 week cycle and it was working better. The Game Changer was 3 years later when they switched me to the subcutaneous injection each 2 weeks.

6/18/245:43 AM

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DJ HMember

I was similar, Entyvio worked at first but then started waning off. I ended up switching to Budesonide which works better than anything I had tried previously (I was on antibiotics, mostly Cipro, for 17 straight years previously). I sure hope Budesonide keeps working this well since these days I hardly even think about my pouch anymore since things are going so well. Hopefully I didn't just jinx it!

6/18/248:12 AM

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Anna625Member

Thank you both! @hansman was it hard to get used to giving yourself the shots, and do they hurt?

6/18/2410:41 AM

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hansmanMember

No, this was quite easy. It’s a pen not a syringe.

Don’t worry about that 😅

6/18/2410:53 AM

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PotsMember

Well I have just read the above discussion about the pouchitis! I am now ready to fire my gastro Dr for not bringing up this angle of treatment! Why do ds not listen to the patients. He is wanting my to reverse the surgery after 24 years. I don't want to do that. Hell no. I am on wait list to see this supposed good Dr for 2 months now and had to find my own treatment to get by. When I see him I will get answers about this or find another dr. I am fed up.

6/27/242:28 PM

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Anna625Member

Yeah there is a whole class of biologics that are immunosuppressants that can help.

6/27/243:11 PM

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PotsMember

Cool. Thank you. I will be pushing this when I see the good Dr. in 2 weeks. Thanks for the info. I was on Humira for 5 yrs. and this worked until I developed 998 antibodies that worked against it. I had to switch Drs and now This one wants me to do a reverse on the pouch and I don't want to! It is such a life changing thing to do, and I don't want to do that.

7/3/248:04 PM

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Scott FMember

@Pots posted:
Cool. Thank you. I will be pushing this when I see the good Dr. in 2 weeks. Thanks for the info. I was on Humira for 5 yrs. and this worked until I developed 998 antibodies that worked against it. I had to switch Drs and now This one wants me to do a reverse on the pouch and I don't want to! It is such a life changing thing to do, and I don't want to do that.

Is this doctor a surgeon or a gastroenterologist?

7/3/248:18 PM

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