Please Help, I need advice

[seanm]

My name is Sean and I am 21 years old and have Crohn's Disease. I was diagnosed at 13 and after Asacol and Imuran didnt work I recieved 3 infusions of Remicade, 8 weeks apart. This put it into remission and I didnt take any medications for a year and a half until they reoccured and started the Remicade regiment again at 15. However this time, I had a reaction to the Remicade. A few days after the first infusion I started to have severe joint pain and could not move for several days. Eventually it went away but I did not know at the time that it was a Remicade reaction. During my second round of infusions 8 weeks later I had a reaction 10 minutes into the infusion when they had to completely stop it and take counter measures to stop the reaction. Luckily I went back a week later and I did not have any problems and was able to get the second infusion in. Ever since then I have done maintenance infusions every 10 weeks to present (About the last 6 years). My current concern is, I have a situation where I can not recieve the infusion at the normal 10 weeks. It is going to have to be pushed out to 14 weeks. Will there be a reaction or will it be a normal infusion? I ask this because my GI is minimally involved in my care and I only see the physician's assistant when I go in for visits. The assistant did not know whether there would be a reaction or not and took the stand lets see what happens. This obviously concerns me because I do not want to put my health at risk and go through that experience again (BTW I am working on switching doctors, I just couldn't switch in time before this upcoming infusion). Please any input would be greatly appreciated and thank you in advance for taking time to hear my plea.

 

[courtneyalice]

Each time before I go for my infusion of Remicade I take Benadryl because I had a very bad reaction to my first one. Taking that will most likely prevent a reaction.

 

[Starlight]

I'm confused to why you had 3 infusions, then they just stopped. Remicade is a drug that I hear for almost all people,once it's started, you can't stop. If you stop, your body develops antibodies to it, making it very likely that you would have a reaction if you received it again. I'm not surprised at all that you did have a reaction to it once started again.

I have been on it since 2006 and get it every 8 weeks. Longest i have ever gone was 9 weeks. I used to be able to handle 9 weeks fine, and was even wondering if I could stretch it out further apart, but no anymore. I think I'm going go have to start getting it every 6-7 weeks soon, and I'm on a double dose.

I would defiantly not go 14 weeks, especially if you have already had reactions before.
Especially since you have had multiple reactions. I would either try to do the best you can to get closest to the 10 weeks if possible, and if you have to, if possible, maybe even do it a week or two early. This is something you need to discuss with your doctor, nobody can tell you for sure if you would have a reaction or not, your doctor may not even be able to tell you that, but you need to let him know about the situation and see what he recommends. Good luck!