Two years on Entyvio

[Dan1970]

Two years in and I am not in remission but it's the next best thing. I went on vacation, walked shopping all day, walked in ruins, walked up and down the beach, went swimming in the ocean and drank an ocean of beer...all without writhing around in pain or any threat to my dignity.

I've tried everything else - Remicade, which stopped working, Cimzia, which never worked, Humira, which never worked, CBD treatments, helmenthic therapy, diets and other stuff but Entyvio is working.

Crohns is a nasty disease. What works amazingly for one person might do nothing for the next. Good luck everyone.

 

[ronroush7]

Dan,that is great news. I hope it lasts for ages.

 

[stephie82]

That's great, and encouraging hope for all of us,. I hope it lasts forever!

 

[BigL]

Thats great! My daughter has been diagnosed with Crohn’s almost a year, more like 8 mos. The GI doc put her on Entyvio right away, nothing else. She was doing just ok, still having flare ups. The last time she went 2 weeks late to get the infusion and shes been having a bad flare up, like mouth soars, diarrhea, 1 day constipation- which she rarely has. Shes getting a prolectin test tomorrow n a trough level (i think thats what its called) n then she goes for another infusion, this Friday on her 21st bday. She made the appt, not me lol. Im soooo concerned for her. She says anything she eats, she sees in her stool... Does that happen to everyone else?

 

[BigL]

She is also getting an endoscopy 6 days after her infusion. I think its kind if risky being that your immune system is even lower for about 2 weeks after infusion. I just dont know if shes getting the right care from her gi. Im trying to look for another one for her, for at least a second opinion but its hard cause she has low income state health insurance. He also ordered an MRI for her. We had so many more questions for doc but he told us to come sit over here and we didnt even tealize the appt was over. Whats up with that?

 

[stephie82]

What is up with that? Could he have forgotten about you? He should have considered explaining it to you unless he explained to your daughter and thought that was enough? This may be a little inconvenient, but you should make an appt just to find out all that information you want to know? If you change doctors then do your research first or by word of mouth that your daughter is ending up in competent hands. All the best to her.