Surgery v Remicaid

Hello, I am new to the forum and I hope someone can help me.

My 10 yr old son was diagnosed with UC May of 08. He did not tolerate Pentasa, the Rowasa enema or Asacol. He has been on a roller coaster of Prednisone going up and down between 40 and 20 mgs per day. He was put on 6-MP in Aug 08, by Dec I was able to wean him off the Pred for about 6 weeks before he started flareing. He was put back up to 30mgs of Pred and his 6-MP was raised from 50mgs to 75. He still wasn't doing well and his liver numbers were going up so his dr. dropped his 6-MP to 25gs and added in 50 mgs of Allopurenol while still dropping the prednisone. This combo seems to be working except he started having severe stomach pains along with the skin all over his body to tender to even touch. If he can't tolerate the Allopurinol our options are dwindleing. Remicaid or surgery? To have to worry about the possibility of malignancy, even possibly an incurable malignancy, I think is not worth it. I have really struggled with the thought of surgery, over the past year, as a last resort option. At this point I am leaning heavily toward surgery.
I know this has been wordy but I am hopeing that I can get some additional insight from someone else.

well i had UC and i went to the GI and i asked for surgery and he talked me into remicade, and i tried it, but now i wish i hadnt. It didnt work for me, now it does work for some people. But i was told that you need to be on someting like 6mp or immuran for it to work better.
So it worked for a few months then quit workign but even in those few months i constantly was waiting on it to quit working.
So i went for surgery, and it was the best decision EVER!!!

Maybe Shaz will come along, or you go over to the ostomy baord and post for her to answer, her parents had her colon removed when she i think 10 and she is very grateful to them for it.

I am so sorry to hear that your son is so sick. My heart breaks when I think of kids having this disease. Someone else posted a couple of days ago asking for input on surgery vs. continuing medical treatment, and I had just read the following articles that are on-line for free in the January 2009 issue of Inflammatory Bowel Disease, so posted a link to them. Here they are again...I hope they help.

1. Treatment of choice for acute severe steroid-refractory ulcerative colitis is cyclosporine (p 141-142)
2. Treatment of choice for acute severe steroid-refractory ulcerative colitis is Remicade (p 143-145)
3. Treatment of choice for acute severe steroid-refractory ulcerative colitis is colectomy (p 146-149)

Here's the link to that issue:
http://www3.interscience.wiley.com/journal/121549458/issue

All of the other articles in that issue are free, too!

I am debating the same question although it is for myself. Has anyone been able to find information on Remicade or Humira regarding much it increases your chances of getting a malignancy? Also, does your risk increase the longer you use it?

I have searched quite a bit, but not found anything too useful.

Hello ,this is very sad that such a young child is going thru this . it sounds like you are not tapering slowly enough off the prednisone. I usualy start on 40 mg and taper off 2.5 mg every week then when I get to 15 mg I taper off 1 mg every week.I do fine untill I get down under 5 mg then I have a flare then back on 40 mg.I am on 100 mg of purenethol which is mercaptopurine, 6 pills of Asacol,1mg of folic Acid,and acifex & my pred I was diag in 2003.Just had my #4 or 5th colonoscopy today.Good Luck my prayers are with you and your son.

remicade can make you stronger as in not sick, but since it lowers your immune system so i dont know if that would be good. I had to quit taking remicade before i coudl have surgery. But it wasnt workign for me.

Anyway, the longer you stay on remicade the greater your risk for developing somthing,, and also if you have a family member who had one of the types of cancer it can cause.

I really appreciate everyones input and concern!!!

His doctor really does not want to put him on the Remicaid because of the potential of malignancy.  We took him to the Mayo Clinic for a second opinion when his dr. started talking surgery.  All along I was leary of the Remicaid but when we took him to the Mayo Clinic, the dr there highly recommended it.  He told me that my daughters had a higher risk of developing breast cancer in their lifetime then he did with taking Remicaid.  This made me feel better until I relayed it to his regular dr to which she replied that yes that is true but..............breast cancer is treatable (of course all cancer is potentially fatal) but one of the types of malignancies he could develop from taking Remicaid was not treatable and was therefore considered fatal.  I asked her how long would he have to take it before I would have to start worrying about a malignancy.  I'm thinking 5-10 years, she told me 1-2 years.  I don't feel it is worth the risk in any way.  There also seems to be so many other non fatal but, never the less, life altering side effects from this drug.  My husband is leaning toward, at least trying, the Remicaid because he is having a diffcult time with the thought of him losing his colon.  I am aware that there can be complications from the surgery but in my opinion ,at the very worst case scenerio, I would rather that he have an Ostomy and know that he isn't going to develop cancer from his medication.  Obviously I realize he could still develop some other horrible diease or any number of terrible things can happen, thats life, but I won't have to worry about this one in particular.  Maybe I am looking at this wrong but I just have a very hard time with this medication.  

I have one other "wonder", why would one dr, from what is considered to be one of the best medical facilities in America give this drug such glowing recommendations when another dr from another very well respected facility not be so gung ho about prescribing it?

I really feel for you and your little girl. This is not easy to come to grips with at all. Hopefully the Asacol works for her. My boy could not tolerate any of those drugs that is why he has been on Prednisone so long. The Prednisone helps but it wreaks havoc with their body, moods, temperment, on and on I could go. My boy has gained almost 20 lbs since he started taking it. When he was in remission for those 6 few weeks he lost about 10 lbs. The whole "moon face" thing makes school really difficult, kids just don't understand.