Farewell Entyvio, Hello Remicade

With Entyvio you can't adjust the dosage if it's not working 100%, You can adjust the timing though. That didn't work for me.

With Remicade you can adjust the dosage & frequency so it has more flexibility if you need it. Everyone starts at 5 mg/kg of body weight every 8 weeks. For most people that works but for some adjustments need to be made. If it's working for you but not 100% a change in dosage or frequency or both are possible.

The actual infusion itself is about 2 hours, but they also have to mix the med (like you are probably used to from Entyvio) and for the first few infusions they may want to monitor you for a while after. They never monitored me after -- not even after the first one which may be unusual but I never had any issues. Some people need premeds others don't. I have never had any premeds. If you are concerned ask your doc about it. Did you take premeds before Entyvio?

I have never had any side effects from the infusions. When I got my infusions at the hospital I would get them after work or on weekends and would go shopping after. Now I go to an infusion center and have them first thing in the morning and then work in the afternoon. Some people even work during their infusion. But some people have said they are tired or have a headache after the infusion. Everyone is different. Until you know how you will react, might be best if you can schedule them so that you can rest afterward if you need to.

Remicade levels & antibodies are usually only tested if you aren't getting a good response or you start to lose response or have other issues. Hopefully you will never need to have them checked.

Most people have a noticeable response after the loading doses, but for some it can take a while to reach full remission. So try to be patient. So hard to do but go by quality of life instead of quality of poops lol

I am on Remicade every 6 weeks at 10/mg. It is working well for me after Entyvio failed. My infusion takes about an hour and a half. I am tired afterward but I believe that is from the Benadryl and not the Remicade.

Thanks for your stories and a glimmer of hope. My first infusion will be in about week and I will report the results.
Exactly as CCinPA says there is no fine tuning of Entyvio. We went to every 4 weeks instead of 8, a low-dose Prednisone taper and more, trying to bring back a wimpy response that didn't last long.
I now have a better understanding of what to expect with Remicade. The infusion center mentioned premeds (Benadryl and acetaminophen) but I don't know yet if that is routine.