I will find a way or make one. –Phillip Sidney 1554-1586
All that I am and all that I shall ever be, I owe to my Angel Mother.
The Bucket List- Have you found joy in your life? Has your life brought joy to others?
Make sure your suffering has meaning…
I see you got tons of reply's. I just thought I share my experience with Remicade. I was on it for about 1 and 4 months.
Started off working amazing, was able to add things to my diet, like milk,green vegy's.But about 8 months after starting it. I got horrible joint pains. so they brought me to every 7 weeks, ok helping with the joint pains, but keep getting worse, closer to the time need the infusion, waiting a week in horrible horrible pain. so they brought me to every 4 weeks. No relief after they did that. My crohn's got supper worse, and I went crippled. What happend sometimes is your body starts to get use to it. I also found out because Remicade isn't all human, part mouse. People especially with Crohn's you can get antibodies from the remicade which is where the joint pains and cripplness came from.
This is just my experience. Remicade can be your sons 'med' and work for life for him. I was though ask the doctor about a med that could avoid the antibodies. I.e Imuran, MTX (I don't know the others)
I've just start humira, which is allot like remicade,and I am not crippled anymore (in less then a week with the help of imuran) and the pain is almost all gone.
I hope everything works out for your son! good luck
I totally understand your concerns about Remicade. Reading all the info scares the daylights out of a person. I was on Remicade every 4 weeks for 3 1/2 yrs. We found it just did not last long enough to go 6-8 weeks. It is very much a drug that should be taliored to a person' s needs. Initially they thought Remicade stayed in the our systems long er than it actually does. I had a reaction on my third infusion which is typical for one to happen if it will. They stopped my infusion and gave me IV soluable medrol & benadrly. We waited a bit and they resumed the infusion at a lower rate and I did just fine, From that time on I was given pre-meds & had no problems. My gi stopped my Remicade because it lost its punch with me. I developed a fistula last year and had to go back on Remicade. This tme around it made me feel pretty sick afterwards, I did it for several months. I now have Lupus induced by Remicade, but I do not regret ever using Remicade. I started Humira this year and its another very good drug.
Have your son take somthing to do either watch a movie, read just something to pass the time. I also suggest snacks, we tend to get hungry while there. I do not know if his is being done at the hospital or an infusion center. I hope it helps your son.