My daughter was at the very beginnings of a flare a few days ago. She has been tapering off of Pred and was down to 10 mg, so we now know she is steroid dependent and the Methotrexate is not putting her into remission Blood tests show she is not an idea candidate for Remicade, but her Dr. thinks it is worth a shot to start her on it in addition to the Methotrexate, and get her completely off of Prednisone (YAY!!!) I am so nervous about this. Even though my husband has been on Remicade for 2 yrs with great results, the thought of putting my 13 yr old on it makes me nervous. She was the 1% who developed pancreatitis while taking mesalamines...is she going to be one of the few who ends up with Lymphoma? I desperately want her to have remission and get her life back to "normal" ...she's been out of school since December, gained tons of weight and feels so isolated and bad about herself...of course I want nothing more than to give her a chance at remission. She hasn't felt good in almost 2 yrs, with the exception of a month here and there. I am interested in LDN, which her Dr. says is useless (I was expecting him to say that) but I don't want to have any more time go by with her feeling like crap and worrying about having a flare & ending up in the hospital again...I think the emotional aspects are way harder for her than the physical.
I guess I am just venting, as we are in the process of setting up the Remicade appointment for this week...but I would still love to hear your thoughts and experiences.
Thank you so much!
13 yr old daughter diagnosed UC 12/08
Current treatment METHOTREXATE
1st shot 3/20/11
weaning off 5o mg Prednisone
also taking Aloe, VSL, prilosec, Folic Acid
too many flares to count :(
previously on 6MP, Asacol, Lialda, Rowasa, Cortocoid enemas
Developed pancreatitis 2/10 after being on Rowasa & Lialda
Husband dg'd Crohn's 2/09 at age 46 -
Remicade every 8 wks