I flared pretty much for 15 years, the biologicals where just coming out when I was so severly blocked that I had no choice but surgery. I lived with my CD mostly unmedicated for years, and I wouldn't call that an easy life.
I had the same reaction to Immuran, though my GI at the time, now fired, dismissed the severe joint pain and then blamed me for the reaction pf a temp piquing at 108. Not fun. Good thing you got off it, you would have gotten worse. Obviously Pred doesn't work for you either, so moving to other meds is worth a try.
Obviously you need to keep trying meds, biolgicals, Humira or Remicade 6MP and Cimzia are your options.
I have another option, but let me say, your GI may know nothing of it as it's just beginning to be researched. It's called Low Dose Natrexone.
Cheap, cheap, cheap.
Does not suppress immune system, in fact it modulates/supports it.
Minimal side effects, sleep loss and weird dreams that go away.
Cannot be taken with all immune suppressants, except a small dose, 10mg or less of pred.
Like I said, it's has been used for CD off label, and is now being researched by Jill Smith at Pen state in US. Someone here posted an abstract of her findings from a double blind study which show similar efficacy to present treatments. It's been used to treat other auto immune diseases, MS, Fibro with good success.
It can be proscribed by any doc in US and Can, but finding one who will may or may not be a challenge.
So you'll need to to your research and take the abstract to your doctor too.
Some links to help you:
You can always have your doctor get in touch with Dr J P Smith at Penn, to find out more.
Crohn's is a hassle, it won't let you forget about
it, and it's probably wise to keep an eye on it.
Hang in there, BE well
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.
Post Edited (MToronto2) : 5/10/2010 10:35:18 PM (GMT-6)