When my teen was on it they were fatigued, but when we increased the dose it got REALLY bad--said legs felt "numb", was so weak and couldn't get out of bed while at the higher dose but to go to the bathroom and MAYBE the kitchen to get something to eat in bed. Dr. didn't believe it could do that, but it sure did--that is why we went with Remicade. Great decision for us--feels totally normal again!! We figured if you are still doing so poorly what good is the medication when you still can't function? I guess it all comes down to personal tollerance and expections of quality of life. Luckily our other option (Remicade) has been a Godsend! We were SO freaked by the potential side effects, but now we are just freaked that it will quit working!! It is so hard when the meds to help fight the disease have such terrible possible side effects!! We just try not to think about the "what ifs" and enjoy every day of feeling great. We know if/when Remicade stops working we will most likely be facing surgery (we hope there are other options available at that time), but until we have exhausted everything, we aren't about to go there yet.
Kelsie (mom of UC teen--moderate/severe pancolitis; Remicade only now and doing wonderfully!)