Guest guest Posted October 8, 2007 Report Share Posted October 8, 2007 Hi all - I have a few questions about your experiences with Remicade. Pearl Ann started Remicade 2 weeks ago this Wednesday for her Crohn's Disease. She responded almost immediately with her diarrhea disappearing and pain being almost non-existent. Then last Wednesday, a week later, she started having diarrhea again, and blood in her mostly normal stools. Then over the weekend she started complaining about her fingers hurting, then her eye (a symptom she has had in the past) and today it is her knee, her eye and her stomach (with two bouts of diarrhea). She hasn't been that fatigued, although she has been napping very consistently once a day (something she had dropped before all this started back in August). I should also mention that we have been weaning her from steroids 1 cc a week. She is down to 4 from 10 a day. I noticed the symptoms reappearing the day she went down to 4. So is this normal after a first Remicade treatment or should I call and asked to be seen before her next Remicade appointment on Thursday? Or could this be connected to the steroid weaning? She's only 3 years old so it's hard to get a lot of information out of her. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2007 Report Share Posted October 8, 2007 Hi and -- My husband received Remicade between 2001 and 2002. It worked wonders for his UC, but after a while he started having some pretty bad side effects. He stopped taking it, and fortunately found another solution to the UC (he's been flare-up free ever since). In answer to your specific questions -- what you described did not happen to him, and he has never had those kinds of problems going off steroids. I would probably try to talk to the doctor before her next infusion, just to be on the safe side. With that said, there is probably a pretty significant difference in how a young child reacts to the drug in comparison to a 31-year-old guy, so I'm not sure any of what I have to say is very helpful. I am sorry your little girl is dealing with such serious health problems. Sincerely, Dawn Weinberger www.carlanddawn.blogspot.com > > Hi all - I have a few questions about your experiences with Remicade. > Pearl Ann started Remicade 2 weeks ago this Wednesday for her Crohn's > Disease. She responded almost immediately with her diarrhea > disappearing and pain being almost non-existent. Then last Wednesday, > a week later, she started having diarrhea again, and blood in her > mostly normal stools. Then over the weekend she started complaining > about her fingers hurting, then her eye (a symptom she has had in the > past) and today it is her knee, her eye and her stomach (with two > bouts of diarrhea). She hasn't been that fatigued, although she has > been napping very consistently once a day (something she had dropped > before all this started back in August). I should also mention that > we have been weaning her from steroids 1 cc a week. She is down to 4 > from 10 a day. I noticed the symptoms reappearing the day she went > down to 4. So is this normal after a first Remicade treatment or > should I call and asked to be seen before her next Remicade > appointment on Thursday? Or could this be connected to the steroid > weaning? She's only 3 years old so it's hard to get a lot of > information out of her. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2007 Report Share Posted October 8, 2007 I was under the impression that if you start Remicade you can not stop? Also what other solution did you husband do? Shirin, Arman, Niki & Mateenarman_shirin@... Re: Remicade Questions Hi and --My husband received Remicade between 2001 and 2002. It worked wondersfor his UC, but after a while he started having some pretty bad sideeffects. He stopped taking it, and fortunately found another solutionto the UC (he's been flare-up free ever since). In answer to your specific questions -- what you described did nothappen to him, and he has never had those kinds of problems going offsteroids. I would probably try to talk to the doctor before her nextinfusion, just to be on the safe side. With that said, there isprobably a pretty significant difference in how a young child reactsto the drug in comparison to a 31-year-old guy, so I'm not sure any ofwhat I have to say is very helpful.I am sorry your little girl is dealing with such serious healthproblems. :(Sincerely,Dawn Weinbergerwww.carlanddawn. blogspot. com>> Hi all - I have a few questions about your experiences with Remicade. > Pearl Ann started Remicade 2 weeks ago this Wednesday for her Crohn's > Disease. She responded almost immediately with her diarrhea > disappearing and pain being almost non-existent. Then last Wednesday, > a week later, she started having diarrhea again, and blood in her > mostly normal stools. Then over the weekend she started complaining > about her fingers hurting, then her eye (a symptom she has had in the > past) and today it is her knee, her eye and her stomach (with two > bouts of diarrhea). She hasn't been that fatigued, although she has > been napping very consistently once a day (something she had dropped > before all this started back in August). I should also mention that > we have been weaning her from steroids 1 cc a week. She is down to 4 > from 10 a day. I noticed the symptoms reappearing the day she went > down to 4. So is this normal after a first Remicade treatment or > should I call and asked to be seen before her next Remicade > appointment on Thursday? Or could this be connected to the steroid > weaning? She's only 3 years old so it's hard to get a lot of > information out of her.> Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2007 Report Share Posted October 8, 2007 Wow, really? His doctor took him off of it after about 18 months. But this was in Remicade's early days, so maybe things have changed (on a side note, I believe Remicade played a significant role in the rapid decline of his liver functions). As for the other solution, he totally eliminated pork and shellfish from his diet. His symptoms were gone within 3 weeks, and he has not a flare-up since. His annual colonoscopies show a healthy colon. It was pretty amazing. -Dawn > > > > Hi all - I have a few questions about your experiences with Remicade. > > Pearl Ann started Remicade 2 weeks ago this Wednesday for her Crohn's > > Disease. She responded almost immediately with her diarrhea > > disappearing and pain being almost non-existent. Then last Wednesday, > > a week later, she started having diarrhea again, and blood in her > > mostly normal stools. Then over the weekend she started complaining > > about her fingers hurting, then her eye (a symptom she has had in the > > past) and today it is her knee, her eye and her stomach (with two > > bouts of diarrhea). She hasn't been that fatigued, although she has > > been napping very consistently once a day (something she had dropped > > before all this started back in August). I should also mention that > > we have been weaning her from steroids 1 cc a week. She is down to 4 > > from 10 a day. I noticed the symptoms reappearing the day she went > > down to 4. So is this normal after a first Remicade treatment or > > should I call and asked to be seen before her next Remicade > > appointment on Thursday? Or could this be connected to the steroid > > weaning? She's only 3 years old so it's hard to get a lot of > > information out of her. > > > > > > > > > ________________________________________________________________________________\ ____ > Yahoo! oneSearch: Finally, mobile search > that gives answers, not web links. > http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Arman, You can't stop Remicade treatment and then restart it again. Quote Link to comment Share on other sites More sharing options...
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