Guest guest Posted January 19, 2009 Report Share Posted January 19, 2009 Hi Michele, sorry to hear you have to deal with these issues with such a young child. I went off of remicade in October, I was having a lot of sides from it and was flaring again with my monthly cycle anyway so figurred why bother. I was also doing strict SCD at the time I started flaring so quit that as well. I was just really frustrated with the diet and the treatment and then symptoms came back anyway. I started LDN (low dose naltrexone)in November and things seem to be much better. My labs were up slightly in December despite the daily bloodloss. January has been pretty good, averaging one to two daily bm's mostly all formed with very little blood. I even had my monthly this past week and things were not nearly as loose, bloody, and numerous as in the past. LDN is just a more safe alternative if you really want to stop the remi. Just like any drug, ldn does not always work for everyone. There is a trial study going on with adolescents and crohn's at Penn State Hershey. I think there's info about it at the main site at http://www.lowdosenaltrexone.org/index.htm The first study found two-thirds of crohnnies go into remission. I just thought I'd throw that in here for something else you could think about for him. Take care, Miss > > Hi, > > > > Has anyone ever come off Remicade and stayed in remission with SCD (or > without SCD)? If so, please tell me about your experience. > > > > My son started Remicade a year ago for perianal Crohn's. The ped gastro > said that if the Crohn's is quiescent for 4-5 years, we can talk about > taking him off and see what happens. He is 9 and very resistant to trying > new things - SCD or not. > > > > Thanks, > > > > Michele > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.