
Reply: Remicade
My 12 year old son has UC and he had a very bad flare back in October - he lost about...
Posted by beckyatmoms
My 12 year old son has UC and he had a very bad flare back in October - he lost about 27 lbs and ended up in Johns Hopkins for a week. Until that point he was only taking Lialda. During his hospital stay when they realized he was not getting any better they gave him his first dose of Remicade on Wednesday night. By Thursday morning he was eating, drinking and not having hardly any symptoms at all. It really has been a miracle drug for him. He gets infusions every 8 weeks and hasn't had any problems since he started it. Just like any medication you will hear that it works for some and not others but I would say it is worth trying.View Thread
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11 Year Old Son with UC
My son was diagnosed with UC when he was 10. Last month we spent a week at Johns...
Posted by beckyatmoms
My son was diagnosed with UC when he was 10. Last month we spent a week at Johns Hopkins because he had his first flare which resulted in an over 20lb weigh loss, dehydration, etc. During our stay there they added Remicade along with his Lialda (which he has been on since his diagnosis). The Remicade worked wonders. By the next day he was eating again and starting to feel like himself. Today he is going for his 3rd infusion.
I am terrified of this medication. It seems to have soooo many possible serious side effects. Now he has a rash across his chest and under his arms.
If anyone on here takes or has taken Remicade, could you tell me what kind of side effects you have experienced?View Thread
Posted bybeckyatmoms
I am terrified of this medication. It seems to have soooo many possible serious side effects. Now he has a rash across his chest and under his arms.
If anyone on here takes or has taken Remicade, could you tell me what kind of side effects you have experienced?View Thread
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11 Year Old Son with UC
My son was diagnosed with UC when he was 10. Last month we spent a week at Johns...
Posted by beckyatmoms
My son was diagnosed with UC when he was 10. Last month we spent a week at Johns Hopkins because he had his first flare which resulted in an over 20lb weigh loss, dehydration, etc. During our stay there they added Remicade along with his Lialda (which he has been on since his diagnosis). The Remicade worked wonders. By the next day he was eating again and starting to feel like himself. Today he is going for his 3rd infusion.
I am terrified of this medication. It seems to have soooo many possible serious side effects. Now he has a rash across his chest and under his arms.
If anyone on here takes or has taken Remicade, could you tell me what kind of side effects you have experienced?View Thread
Posted bybeckyatmoms
I am terrified of this medication. It seems to have soooo many possible serious side effects. Now he has a rash across his chest and under his arms.
If anyone on here takes or has taken Remicade, could you tell me what kind of side effects you have experienced?View Thread
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Reply: 11 Year Old Son with UC
Thank you for your reply Hannah. It does make me feel better that you haven't heard...
Posted by beckyatmoms
Thank you for your reply Hannah. It does make me feel better that you haven't heard about anyone having too bad of side effects. I know I don't really have a choice but to have him take the Remicade and I try to keep in mind even Tylenol has a long list of "potential" side effects. It's just scary when one of those is an increased risk of cancer. In think his tiredness is from the Benedryl because after a few hours it is gone. The night of his infusion he even went to basketball practice and seemed fine.
I can say that it has worked miracles for him so far. He has not gained all the weight he lost during the flare but he is on his way
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Posted bybeckyatmoms
I can say that it has worked miracles for him so far. He has not gained all the weight he lost during the flare but he is on his way
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| Watch This DiscussionReport This| Share this:11 Year Old Son with UC Thank you for your reply Hannah. It does make me feel better that you haven't heard...
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Reply: 11 Year Old Son with UC
Thanks for your response Jaime. Drew had his 3rd infusion this week and he handled it...
Posted by beckyatmoms
Thanks for your response Jaime. Drew had his 3rd infusion this week and he handled it very well. He was tired for a little while afterwards (a few hours) but then bounced right back. The nurse said he won't have to have the benedryl or tylenol prior to the infusions anymore so I'm hoping that is what was causing the tiredness. We will see. His next infusion is scheduled for January.View Thread
Posted bybeckyatmoms
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| Watch This DiscussionReport This| Share this:11 Year Old Son with UC Thanks for your response Jaime. Drew had his 3rd infusion this week and he handled it...
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Reply: 11 Year Old Son with UC
Thanks for your reply. His third infusion went very well and the Doctor seems to be...
Posted by beckyatmoms
Thanks for your reply. His third infusion went very well and the Doctor seems to be very happy with his progress. I just keep telling myself that ALL medications have side effects, that doesn't mean he will experience them all. The increased chance of fatal lymphoma is just terrifying! But we really have to choice so I guess I will just try to put it out of my mind (easier said than done).View Thread
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| Watch This DiscussionReport This| Share this:11 Year Old Son with UC Thanks for your reply. His third infusion went very well and the Doctor seems to be...
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Son just diagnosed with UC
My 10-year-old son was just diagnosed on Monday with Ulcerative Colitis. I don't know...
Posted by beckyatmoms
My 10-year-old son was just diagnosed on Monday with Ulcerative Colitis. I don't know much about the disease and was hoping some of you may be able to shed some light on what to expect with this. He was bleeding with his bowel movements which led to a colonoscopy and ultimately this diagnosis. Does diet play a large role? What types of medicine do doctors typically put you on? I have an appointment to talk to the Dr about all of this but I wanted a "real world" opinion. Thanks.View Thread
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Reply: Son just diagnosed with UC
Thank you so much for your replies. The info you provided was very helpful. Thanks...
Posted by beckyatmoms
Thank you so much for your replies. The info you provided was very helpful. Thanks again
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Posted bybeckyatmoms
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| Watch This DiscussionReport This| Share this:Son just diagnosed with UC Thank you so much for your replies. The info you provided was very helpful. Thanks...
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