Two weeks ago I was ready to give up on it because I thought it always took effect in the first two weeks, if it’s going to work.
But then I heard it can take longer and in the last week I’ve been feeling a bit better. So maybe it is helping after all. I was aware my doctor would like me to have another infusion before making a decision about whether to stay on it and that’s fine with me now it seems like it might be helping.
I saw my doctor yesterday. Like I expected, she does want me to have the next infusion of Remicade. It’s scheduled for June 13 but she’ll move it up if I get much worse because of stopping the two medications. She’s doubling the Remicade dose for the next infusion to see if that works better. A couple of weeks after that I’m seeing her again.
She stopped two of my medications (Asacol and Canasa) since I’m doing a bit better and because they might be contributing to my symptoms – apparently they do in a small percentage of people.
She’s keeping me on Entecort for now, so that if the Remicade turns out not to be helping, at least I’m on something. It’s approved for five months so I can take it for three more.
She sent me to have blood tests after my appointment, to check the Remicade isn’t having any adverse effects.
Our health insurance company has now paid for the first two Remicade infusions which is reassuring since it costs so much (and will cost almost twice as much with the higher dose).