extra intestinal manifestations respond to steroids but not colon, what about IV steroids

I posted this on the UC board too since sometimes this board seems a bit slow moving, but it would be nice to have someone with Crohn's colitis or just Crohn's in general give their perspective.

I have a pretty stubborn case of Crohn's colitis and recently had to start taking prednisone again after being off it only 2 months. I get really bad arthritis, to the point where I can't put any pressure on my feet without really bad pain, so I can't walk, and I get erythema nodosum and skin issues. I started on 60 mg of prednisone which helped the extra intestinal symptoms but my colitis is getting worse and doesn't seem to be responding. I dropped down to 30 mg recently and now am getting some arthritis back again. Yikes, because that's still a pretty high dose.

I started Imuran about 3 weeks ago, and I heard at the least it takes 6 weeks to see any effect, and really it can take 3-6 months. I've done Remicade with Methotrexate, and Humira. The only thing that worked temporarily is Cipro, which I can't take forever and then getting pregnant and getting that pregnancy flare under control, the hormones from the last half of pregnancy and nursing hormones kept it in check.

My GI is wanting to admit me to the hospital to try IV steroids along with TPN, which I did during my pregnancy, but I still had some symptoms as I tapered down when I was released. I'm not sure if I should go or not. I hate the hospital but I also am not really having much quality of life right now. I suppose I could go back up to 50 mg of pred, but wow, that's really high and I could potentially be on that dose for 3 months if the Imuran even kicks in.

I'm kind of at a loss right now. I could try another biologic, but I want to see if the Imuran will work, it's just a long time to feel like crap and just be hanging on by a thread. I wonder why my extra intestinal symptoms respond to steroids but not my colon, anyone else have this or any ideas? I'm getting really discouraged and am having a hard time trying to remain positive. I've done so many freaking diets which seem to have no effect on my disease and spent so much money on supplements, I don't even know.

Any ideas? Are IV steroids even going to work on my colon since I started at 60 mg anyways? I'd rather avoid the hospital. They want to do another colonoscopy as well which I just had one in February. Why? I can tell you for sure my colon looks messed up, no need for that. Help please, what do you think you guys would do?

I'm sorry you're having a really hard time with all of it. Prednisone is like the one thing that works for me but only at higher doses and after I start tapering the symptoms come back, especially the arthritis.

I've done the IV steroids on top of prednisone when I wasn't getting better during a bad flare and it did help in my case, but I don't know if that would be the case for you.

I have bad arthritis with my disease, which for the past 11 years has become more prominent than my intestinal situation. I think colon disease tends to have the arthritis issues more so, but I may be wrong about that.

I did the 6-MP for several years and it never helped that I could tell but it has helped others. This disease is just so different for each person. I hope whatever you decide to go with helps you. -Joy

I would avoid steroids at all costs. I'm only 44 years old and have the start of a cataract thanks to intermittent steroid use over the years. I know that they are a quick fix but find another way if at all possible. I will be refusing treatment with steroids going forward, the toll they take on my body isn't worth it.