My 11 year old daughter has been recently diagnosed with Crohn's. Fortunately, it was caught in the early stages, however, her GI wants to get her started on Remicade right away to close a fistula that was found in her lower intestine during a pelvic MRI examination. To our dismay, my wife and I have read copious amounts of information regarding the side effects pertaining to Remicade. Does anyone have any thoughts or experiences he or she would like to share regarding said medication? Thank you in advance.
Doctor wants daughter on Remicade
- Thread starter the93prof
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Welcome the93prof.
I've asked the moderators to move your post to the parents forum where you will find many other parents who share your concerns and can help answer your questions from a parent's perspective.
My son is on Remicade and it saved his life. I would not hesitate to put him on it again. The effects of undertreated and untreated CD are much greater than the very tiny risks of side effects from the medications used to treat Crohn's on an ongoing basis. They are certainly safer than prednisone which is the main alternative.
AT first everything is very overwhelming and it feels like you are being asked to take huge risks with your child's health. What can be hard to grasp is the danger of not treating the Crohn's. Our children often don't look or act really sick until they are at death's door. But if we could see their insides we would be shocked and take action. Imagine your skin being swollen, open sores some bleeding and deep, places where scar tissue makes the skin tight and inflexible. That's what their intestines are like.
I look forward to seeing your posts on the Parent's board soon.
All the best
I've asked the moderators to move your post to the parents forum where you will find many other parents who share your concerns and can help answer your questions from a parent's perspective.
My son is on Remicade and it saved his life. I would not hesitate to put him on it again. The effects of undertreated and untreated CD are much greater than the very tiny risks of side effects from the medications used to treat Crohn's on an ongoing basis. They are certainly safer than prednisone which is the main alternative.
AT first everything is very overwhelming and it feels like you are being asked to take huge risks with your child's health. What can be hard to grasp is the danger of not treating the Crohn's. Our children often don't look or act really sick until they are at death's door. But if we could see their insides we would be shocked and take action. Imagine your skin being swollen, open sores some bleeding and deep, places where scar tissue makes the skin tight and inflexible. That's what their intestines are like.
I look forward to seeing your posts on the Parent's board soon.
All the best
afidz
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I thought this thread would be better suited in the remicade section as that is mainly what you are asking about, but please, feel free to talk to the parents as well, they have a great support system in there and I know they can help you with support that I am sure you need. Here is the link if you haven't already found it.
http://www.crohnsforum.com/forumdisplay.php?f=49
http://www.crohnsforum.com/forumdisplay.php?f=49
Look as pale, and started getting his appetite back, after 2 weeks when he went for his second dose he had already gained 6 pounds back and his iron level went up! It is absolutely amazing how much better he looks, feels and acts in just 2 weeks with 2 doses. He is also on 6mp with the Remicade. Is your daughter on an immunomodulator drug as well?
No. According to her GI, the Crohn's was caught in its preliminary stages, however her pelvic MRI exposed a (one) fistula that he wants to attack aggressively before it develops an abscess or any other complications develop as a result of said fistula. Her GI also wants to be proactive in terms of her treatment because he doesn't want the onset of her transition toward puberty to be delayed, plus, he wants her to grow to her full adult height.
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If it works, great. But it's based on a mouse/human antibody an I quickly developed an immune response to it. But Humira, which is 100% human antibody, has worked for me for 6 years, although its losing its effectiveness and I'll have to witch to a different type of biologic.
So don't get discouraged if it doesn't work.
So don't get discouraged if it doesn't work.
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Welcome !!!!
DS was on remicade at age 8.
It was the best med ever for him.
He eventually had an allergic rxn but DS is a really allergic kiddo ( drugs food etc )..
He is now on humira and Mtx .
Humira for crohn's and Mtx for arthritis .
Good luck
DS was on remicade at age 8.
It was the best med ever for him.
He eventually had an allergic rxn but DS is a really allergic kiddo ( drugs food etc )..
He is now on humira and Mtx .
Humira for crohn's and Mtx for arthritis .
Good luck
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Hi and welcome!
There are many many parents on here with kids on Remicade! My daughter has been on Remicade and Humira and is now on Remicade and Imuran (for both Crohn's and juvenile arthritis).
The side effects are scary but at some point the disease becomes scarier, and you find yourself so very thankful for these drugs!
Look around the forum - there is all sorts of information here. Good luck!
There are many many parents on here with kids on Remicade! My daughter has been on Remicade and Humira and is now on Remicade and Imuran (for both Crohn's and juvenile arthritis).
The side effects are scary but at some point the disease becomes scarier, and you find yourself so very thankful for these drugs!
Look around the forum - there is all sorts of information here. Good luck!
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I just meant the warnings and the stuff you hear about the drug. To be honest, my daughter has been on biologics for years and has had NO side effects or reactions or anything really. She calls them her "favorite drugs" because they help so much!
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Same here DS has been on humira for over a year no side effects
Got it. My daughter had her first dosage of Remicade today. Despite the Crohn's being caught in the very early stages, there is a fistula that her doctor found after examining her pelvic MRI and he wants to attack it (the fistula) aggressively so that it closes. He tells me that had it not been for that one fistula, he would have placed her on a much milder medication.
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The good news is kids who are on biologics within three months of dx have the best chance at changing the disease course ( reducing the risk of future surgery ).
Hope the fistula closes quickly
Hope the fistula closes quickly
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We love Remicade here! My 14 yr old was dx'd at age 8 and has worked his way up the med tree (pred, Pentasa, Azathioprine) to Remicade. I wish we would have started it a long time ago. We probably could have skipped out of surgery, a fistula and abscess if we had. The fistula and abscess last fall are what prompted the change to Remicade. I hope your daughter does well on Remi. Keep us posted!
Im recently diagnosed as well & quickly progressed to being on Humira. It was easier for me to accept having the illness than to reconcile having to start scary drugs that I had little hope of not being reliant upon in the future. It seems so daunting. But I started Imuran and it wasn't kicking in, most recent CT showed abscesses healed but a new fistula. I willingly started Humira once I realized this disease is progressing and could really cause major problems. If I've avoided surgery even for an extra 6 months or year, I'm glad. Just a grown-up perspective. I'd put my kids on a Biologic if this had happened to them & I knew what I know now.
Lucy was on remicade but it stopped working and switched to humira and on it for a year now with no scary side effects. The decision to start a biologic is very difficult as they are big scary drugs, having said that I don't know where Lucy would be without them, humira has been life changing.
Welcome to the forum, but sorry about your daughter's recent dx. My 9 yo son was dx'd last yr, but is on Methotrexate, so sorry, no experience with Remicade. But with a fistula, it seems completely reasonable to me that the GI would want to treat this aggressively. All the meds are scary. They scare me as much as the disease itself. But, they are necessary for healing, and I hope Remicade works wonders for your daughter. Take care!
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