recommending remicade infusions. I really do not know much about the drug or the disease(only what the nurse told me and what I read on the internet). Can i get some opinions and/or advise about what I should do. I hear it can make him very sick and there are risks of infections.
5 Oct 2009
If ur son can get remicade go for it. It's very $$$ but if he can maintain good overall health it will help. I had several treatments & they really reduced my symptoms but he needs to be very aware of how quickly & severly he could get sick because it wipes out the bodys immune system. I came down with the 'flu and was hospitalized within 1 day I got so sick, got over that had another treatment & got pneumonia, after that I was advised to wait 6-8 months to get healthy again but had developed a resistence to remicade. If ur son goes on it avoid public places, school etc untill he's had enough treatments to see how low his immunity will go. Easier said than done I know I had a child in pre-school at the time & picked up every bug at his school. Good luck.
30 Oct 2009
HI Sorry to hear about your son.
I've had Crohn's since I was 20. I'm 40 now ugh... I started remicade in 98 when it was first out. It helped me to go into remission until 2005. I started it again in 05 and it has kept me pretty healthy:] I enjoy all lifes daily activites as well as am involved with my two teenage children. I just now in 2009 found out that my body decided that remicade no longer works for me. I will be starting Cimzia soon.
My advice for your son is try the Remicade. Crohn's is a weird disease it can affect every part of your body unfortunately. Make sure to tell him to write down if he has something strange happen like a bump on his skin or a canker sore in his mouth. These little things are important for the docs to understand if the medicines are working. I was always embarassed when i was young to talk with my doc. If for some reason he is to. Tell him not to be. Telling all the icky bathroom stories helps the docs understand what's happening and helps them to heal him. Being young he has a more then good chance to go into remission and possibly never have it return. Lots of prayers sent your way.
22 Feb 2012
First Infusion could not tell a difference - second infusion feeling no pain in abdomen and less bowel movements - been two weeks since second infusion - having sweats horribly and today every joint in my body is hurting - couldn't even walk around a store my hips hurt so bad but it beats the crohns symptoms
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