Newcrohnswife, I'm so sorry to hear that the steroids (etc.) haven't helped at all. I'm also a bit surprised; from what I've read, only the most severe cases of crohn's don't respond to steroids. *Most* cases get at least some improvement, but from what I gather from your post, your hubby has had zero improvement.
I've mentioned this before, but I'll say it again... I'm currently out of work due to my CD, so I spend way too much time researching it. From what I've read, people that don't respond to steroids *usually* don't respond *as well* to the upper tier treatments. I'm only mentioning this because I don't want you to be disappointed if the upper tier stuff (6-mp, humira, remicade, methotrexate, etc.) don't help as much as you have heard they would. Many of them are billed as treatments for people that don't respond well to, or cannot tolerate, steroids. Unfortunately, what they are not so quick to tell you, is that people who's Crohn's did not respond well to steroids usually won't have as great of a benefit from the upper tier stuff. Emphasis on *usually*. That isn't to say that your hubby is doomed to a life of misery. Your GI may very well find a treatment program that greatly increases his quality of life, or possibly even puts him in remission.
I have mild CD, and even mild CD can destroy your quality of life. I just can't imagine what you and your hubby are going through.
I'm currently on week 4 of Humira. I have noticed alot of improvement in my arthritis, but only minimal improvement in CD symptoms. My doc also gave me a prescription of Imuran to go with the Humira, but I chickened out and didn't start it. I plan on starting it today, as well as getting the blood test done to make sure my liver can properly deal with it.
There is much debate in the GI world right now about how to treat CD. Many GI's are now recommending *at least* immediate steroid treatment, and others are saying it's best to start out right away with the big guns. I really wish I would have started with the big guns... maybe I'd be back to work by now.
Many people will argue this, but my opinion is go aggressive to start: Imuran and Humira.
I forgot to make a comment regarding the debate over whether people using Remicade should also taken another immunomodulating drug at the same time (azathioprine [Imuran], 6-MP, or methotrexate). It is often done to reduce the possibility of developing antibodies to Remicade. However, in postmarketing studies of Remicade, there were six cases (five fatal) of hepatosplenic T-cell lymphoma, a rare and aggressive cancer, in children and young adults taking Remicade together with azathioprine [Imuran] or 6-MP. That is why some doctors prefer not to have their patients on an immunosuppressive along with Remicade. Some are switching to the combination of methotrexate and Remicade, but there is no guarantee that this particular type of cancer will not occur on the methotrexate/Remicade combination as well.