Posted 9/26/2013 6:43 AM (GMT -7)
I don't know how to put this tactfully, but Pred is probably making your son more sick and weak than the Crohn's is at this point. It's more than his bones you have to be worried about if he stays on that drug for years.
Personally, I would get off Pred even if the symptoms come back. Your son has been on it for so long, he will need a very slow tapering plan for the last 10mg; his adrenal glands will be completely shot. They won't be producing any of their own cortisol, because the Pred has been supplying cortisol (far in excess of what the body naturally produces) for all this time.
I'm not an expert in Pred and tapering plans, but I would think a few months would be required to get off the last 10mg of Pred entirely. However, that would be my goal: get off Pred. The symptoms will probably return, but - and I don't mean to sound callous - that's by the by at this stage. Your son cannot stay on Pred for the rest of his life, so he is going to have to deal with symptoms eventually.
Look into: special diets (SCD or liquid/elemental, principally); clinical trials your son can join; stem cell transplant therapy; helminths; anti-MAP therapy; and last but not least surgery.
I know your son has tried and failed the biologics already, unfortunately, which is why you should start looking into experimental/rare treatments. If your son's current GI doesn't know anything beyond the biologics, ask for a referral to a GI or, even better, a Crohn's specialist/researcher who does.
I feel for you both. The truth is, this disease absolutely sucks when you don't respond to the standard meds (and sometimes sucks even if you do). I hope you can find something which works which isn't Pred.