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My 20 year old son is having his second colonoscopy next week and then will begin Remicade treatments.  He has tried all the other meds and nothing has helped him.  He is constantly tired, losing weight, abdominal cramping and bloody diahrrea.   I have such mixed feelings about beginning Remicade.  Most of what I have read sounds good as far as patients claiming it has definitely improved their life.  However, whenever I read about the side affects it really worries me.  I don't really feel we have any alternative.  Let me hear from those of you on Remicade and if you feel like the pros outweigh the cons.

Concerned Mom

 Reply posted for JVC.

My son , in his early 20's, had his first dose a couple of days ago. He had a major flare -up. The change was almost immediate, really, and he says he feels so much better. I, too am petrified of  the side effects but i cannot watch him feel so sick and lose out on day to day activities. I guess monitoring blood levels at each infusion would signal the Dr if anything is amiss.   Good Luck

 Reply posted for DTA.

Thank you so much for your encouraging words.  He has his first treatment next Friday.  I am praying for a miracle.  I have heard nothing but good results from everyone who is on Remicade.  I can only hope and pray my son's results will be the same.  Thanks.

 Reply posted for JVC.

Hi Concerned Mom!

I hope your son's first treatment went well.  My son is 14 and started Remicade treatments about a month ago.  We finally have an energetic teenager!  We didn't realize how bad he felt until he started these treatments.  As a Mom, I too worried about the side effects.  We have to do what's right for our children now and deal with the rest later.  For my son, if Remicade doesn't continue to work, his last option will be surgery for a J-pouch.

I'll keep you in my prayers!

DTA

 Reply posted for wildcat.

Thank you so much.  I have received nothing but positive comments about Remicade.  His colonscopy went well and we are going for the Remicade next week.  I am just so tired of seeing him being so sick for the past year and I know he is to.  Now that the decision has been made, I just pray that he will respond as well as everyone else has to Remicade.  Again thank you.  You are so right.  It is always hard to make the decision.  We always worry about our children.  God bless you.

 Reply posted for JVC.

My son started on remicade 9 months after being dx with Crohn's in 2002. Within 2 weeks he was a different kid. I too was aware of the side effects and was concerned but I also realized if we did not get this disease under control there could be worse options. Currently he is weaned down to getting treatments only 2x per year. Its a tough decision, I know of ppl who waited and it was too late when they made their decision. As a parent you always struggle with doing the right thing. Often I had ppl question me why we were "so aggessive" so fast, but I had faith in what his doctor was saying- sometimes the doctors wait too long before they bring out "the big guns" It turned out to be the best decision we made.

 Reply posted for sandpiper.

Thanks so much.  Your comments did help me.  He is having his second colonoscopy tomorrow and then will begin the Remicade.  I am just hoping that his results are also good.  Appreciate your reply.

JVC

 Reply posted for JVC.

Hi,

My son has been on remicade for 6 mos and it has been great for him.  I had trouble with the decision too--it is a "big gun" and scary drug. 

One friend said something which helped me--that I was ignoring the obvious, happening-right-now risks of what this disease was doing to him, and focusing on the very small risks of therapy. 

My son feels "normal" now and that is worth a great deal to us.

good luck, I totally understand your worries.

 Reply posted for JVC.

no problem - my mom worries a lot too :)

 Reply posted for woahitslibby.

Thanks for your reply.  I guess I will always wonder if we are making the right decision and being a mom I will always worry.  It did help to hear that you are doing fine.  I hope you continue to stay in remission.  God bless you.

 Reply posted for JVC.

Hi, I'm 21 and am currently on humira.  I started on remicade when I was 19 but it eventually stopped working so I switched to humira.
For me, the pros do outweigh the cons - I wouldn't be on it if they didn't.  Although the side effects do worry me sometimes, I am willing to take the risk because the med allows me to have a quality of life that I know I would not have otherwise. - I am in remission and able to go to school and have a life.