My daughter was diagnosised back in June with severe Crohns and it has been a journey too. She was on Humira for 9 weeks until she had a major skin reaction. At first we that it was chicken pox but after numerous skin biopsies the confirmed it to be a severe skin reaction. So at this point we are off Humira on Entocort waiting for Humira to get out of her system. Skins needs to calm down. Our next journey will be on Remicade. Has anyone else had this problem with Humira? And how have you done on Remicade?
Reply posted for tdjeva.
HI,
I am sorry to hear that your daughter has server Crohn's Disease, I know that is not very much fun when you are told that. But, at least you know and can tackle this head on. I have server Crohn's as well, first diagnosed after a year of knife stabbing gut pain in 1987 when I was 21 years old. I could not wait to go under the knife and it all worked great! From 2003 until 2010, the Crohn's was totally out of control, I had about 8 operations, I was a police officer to and missed lots of work. I was home bound several times, at ton of hospital time, and lots of pain from wound care and procedures. In '09, I got a partial coloectomy with a permanent ostomy now and have never felt better, and can be very active again. I am even playing in a ice hockey league, and I don even notice the ostomy at all! I was on Remicade for 3 years, it worked fine at first, but by the time I was on it, the Crohns was just to sever. I never had any problems with Remicade at all. I am on Humira now and love the stuff, simply due to its much more user friendly. Just so you know and everyone is different, but in my case. I did have pneumonia in both lungs and was in the hospital for almost a week, then it reoccurred again about a month later. I was on Remicade and Humira. Make sure you really like your GI doctor and have really good trust in him or her, that is vital and a huge peace of mind. Let me know anytime if you would like advice, and how things are going!
Andrew
Reply posted for tdjeva.
my 12 yr old is on remicade I was scared to put her on it but everything else we tried didn't work, she has been on about a year and we haven't had any problems till now but not sure if its the remicade or something else? we are doing tests. she had a seizure and has had some eczema, joint pain and headaches. hope this helps
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