Advice needed

Hi Rbckbfamily,

First of all, you've come to the right place for advice. You'll get plenty here.

My Daughter went through a very similar experience as your son. The fact that he's developed an abscess, indicates that there is severe inflamation, and that the current treatment plan isn't working.

Many of us Remicade users wrestled strongly with the decision to make that transition. It is a difficult decision for sure.

In hindsight, I wish we would have went the Remicade route much earlier. This is why many GI's advocate the top down approach. You have to realize, that if you done treat this disease effectively, it could do some serious irreversible damage. You can't let this disease rage out of control.

I'm not a Dr. and I don't know what the long term holds, nor does anyone else here. Most are much confident about taking Remicade now than say 10yrs. ago. No matter what your feelings are on it, Remicade is the current state of the art treatment for Crohn's.

It might get him through the next several years, then who knows, something better may come along. There's certainly alot of uncertaintly to deal with.

Good luck with your decision.

I'm sorry about your son. I haven't used biologics, mostly due to cost, and it wasn't around when I was having my worst flares years ago. I had to get by on prednisone, IV steroids, Cipro and Mefoxin when I had sepsis from the disease. I've used both Entocort and 6MP as maintenance drugs. I stopped them after years of use because they didn't do much for me, though I know others do well on them.

I know how hard a decision you're having to face and it's hard to know what to do, but from my experience, it's probably going to take a harder hitting treatment than either of those two drugs to get things under control. All these treatments, whether Remicade, steroids, or 6MP, carry potentially serious risks. 6MP use has the potential for lymphoma development years afterward too. Having to weigh risk versus benefit is no easy task. At least now the GIs are aware of the risk of allergic reactions with Remicade and are better prepared when administering it.

I'm not being very helpful, I know. Although I've turned down my GI's advice to go on it, if I were facing another serious flare like years ago, I would agree to try it or another biologic.

I know from my own daughter's medical problems that it was harder to take those risks for her than for myself. I hope whatever you decide will go well for your son. -Joy

I would recommend it. I was put on humira when i was 17, and switched to remicade when i was 18 but i wish they put me on remicade first because this is the best i've felt in three years