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Old 04-13-2009, 04:22 AM
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msdrea83 msdrea83 is offline
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Join Date: Oct 2006
Location: Santa Cruz, CA
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msdrea83 msdrea83 is offline
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Join Date: Oct 2006
Location: Santa Cruz, CA
Posts: 252
15 yr Member
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Originally Posted by LordWood View Post
As i have mentioned before i have Crohns disease. Started at a year and a half with ulcerative colitis and than in 2004 was diagnosed that it changed to crohns. When i was younger with the ulcerative colitis after finding i was allergic to the regular medications used to treat ulcerative colitis they put me on high doses of prednisone and immuran which lucky enough kept my ulcerative colitis under control with only the occasional flare up in the fall. After 2004 my crohns then started not being under control and started flaring up and staying flared up for way to long. This was a huge problem as i was also still in school and because my school had bomb threats we had a bathroom pass thing where if the teacher was nice they would let you go but u had to get there signature and than sign out of the class and than sign into the bathroom which because of the threats only the one bathroom near the office was open and problem is when u have crohns u dont have time for all this. After attempts of even higher doses of the meds it still wasnt working so i went on a new treatment of Humaria and terexol problem with that treatment was because of my RSD and the nausea i had become very skinny and trying to give myself the shots was hard and also the treatment itself wasnt working. I was then refered to another doctor after my current one because he didn't know what to do he gave up on me. So after getting in with the next doctor he put me on IV Remicade and it was the best treatment i had ever experienced it kept my crohns at bay and did very well. Problem is now its starting to not work again and i am going back to it messing up my life. The doctor upped my remicade and also put me on another medication to go with it. But it seems like the Remicade is starting to lose its touch. Any other RSD patients find anything to help them??


I was dx with UC when i was 16 months old. up and down on the steriods... had a full colectomy when i was 10. it was under control, well i guess it would be non existant then, till about.... 6 years ago. I was put on remicade about 3 years ago, started at the 5mg, was doing good at every 3 months or whatever... then was having flares earlier, so we went to every 6 weeks, then to every 4. then increased it to 10mg. the remicade stopped helping about 2 months ago, after 2 and a half years. i just started taking humira. its helping. but not as well as i'd like. but its workable. they're not even sure if i even had UC back then, or if it was crohns all a long. the only reason they for sure know its crohns now is because i have a fisculas.

i'm going to stanford at the end of the week to see one of my GI's about what happens when the humira stops helping.
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LordWood (04-13-2009)