I had a recent bad flare that has been 6 months now and I can't get over it. I was on super high pred (80mg) and even after I had weaned down I was having all the side effects you were mentioning. Horrible stuff and I couldn't function with my kids. The asacol, etc, didn't seem to be working, so the new doc wants to go with imuran for 9 months and remicade indefinately. My biggest problem is once you're on it you aren't suppose to go off b/c you will develop antibodies and you can't get back on it. My hope is that I will end up like all these people I've talked to getting infusions at his office....they are on remicade, nothing else, and flare free...for like 8 years! So no 12 pills a day, no prednisone, nothing but an infusion every 2 months. Granted I have to drive 3 hours each way, but still better than pills every day (b/c I forget). I've had one infusion and I feel better (well, different anyway). Lots of things factor in, but I think it's working somewhat at least. When I was getting my infusion I met a lot of people that it WAS a miracle drug for, and I met one that it wasn't and he still had a ileostomy. But the remi had still somewhat worked for him, just hadn't lasted from infusion to infusion. I met SO many people who had SUPER bad problems from the steroids....cataracts in both eyes, knee problems, etc... It scared me into the remicade I think since it seems to have less side effects. And my doc said a lot of the warnings on remicade are not really true. He specifically told about
the heart problems warning. They apparently gave the drug to "death bed" patients with heart problems hoping as an anti-inflammitory it would help them...it didn't. They died anyway. But for some reason they linked it to the drug. He also said the cancer (from the imuran/remi combo) was trumped up. Statistically it was higher, but in reality it was more like 2 out of 1000 people got the cancer as opposed to 1 out of 1000 (he used different numbers). And this guy is apparently close to a god in these things. I mean, to hear the patients talk about
him... I've never heard anyone who had anything good to say about
a GI doc!
I also go a lot by the pregnancy ratings...imuran and 6mp are class d b/c they are unknowns...remicade is class B, which should be ok.
dx late April 2005 with pancolitis UC after birth of my son (second child)... meds didn't work (or rather they would work and then randomly stop)
Started SCD and vit e enemas 12/9/05...that and meds = remission 12/11/05, off meds 12/20 (were on the way out before that), stopped continuous enemas 3/23 and use them only when I feel a flare coming on.
Beautiful perfect baby boy born with no drugs and only vit e enemas during pg - 10/14/07
He also had no gas or discomfort while nursing from me being on the diet.
Didn't use the enemas last flare since I was nursing and regretting it now, wasted time in the hospital with drugs that did nothing but ravish my body, now on my own and almost better... vit e, weaning pred, licorice