Next stop, Remicade

Hey everyone,

I take it that this story is fairly typical. I was diagnosed with UC about two months after I quit smoking, at age 29. I was put on Lialda, which worked great for about 9 months. It stopped working for me, and I was then put on Imuran. Well, the Imuran stopped working (to be honest, it never worked that great anyway) and the next course of action my GI specialist wants to take is Remicade. The only thing i'm taking right now is Lialda, and i've modified my diet to eliminate most high fiber/processed foods. With that being said, i'm not sick to the point that I can't leave the house to go to work, but some days are definitely challenging, and it has had an effect on my social life to a GREAT degree. The only reason that I haven't tried Remicade yet is because i'm honestly afraid to. I've had cellulitis twice, and have gotten abscesses on occasion, and i'm just worried that knocking out my immune system would be begging for trouble. My GI doc didn't seem to think that this would be a big issue. I've finally reached my tipping point, and have to do something. Although Remicade doesn't seem like the healthiest, most risk-free option, i'm sure that anywhere from 5-10 bloody bowel movements a day (which is what i'm experiencing now) isn't exactly the image of ideal health either. Any suggestions/advice?

I've been getting Remicade infusions for over 15 years and have had no problems with infections. I also drink Kefir, add turmeric to my food, and drink ginger root tea. Asacol and dicyclimine are my only other drugs for UC. Have only had great results with Remicade. Other than the expense of it. Best of luck to you!

Remicade is the only uc medication to put my uc into remission. I'm now 1 bm a day without urgency. Prior to remicade, I was 8 months into a horrible flare, steroid-dependent at 20mgs, 6 urgent bms a day, and having multiple accidents per month. I haven't been sick anymore than normal, and have had zero side effects. It's made a huge difference in my quality of life. I can forget about my uc.

We're all a little nervous before starting the next uc treatment as there's always risks. An important thing to note. Remicade doesn't shut down your immune system and you don't have to become a germaphobe. Remicade interferes with your immune system's ability to signal/request "send inflammation over here" using a protein known as tnf-alpha. The less inflammation your body requests, the better your uc symptoms are as there's less inflammation in the large intestine. You do need to be mindful of the types of infections that typically require antibiotics to treat (e.g., UTI, bronchitis, sinus, etc.) and request treatment earlier, rather than waiting for it to go away on it's own. As you're immune system is less effective at combating those types of infections, so seek out treatment early if you suspect you are seeing the signs of them. Common cuts, scrapes, and bruises aren't anything to worry about and are no different than before biologics. You might get an extra cold per year on biologics, and it might last several days longer than usual. It's a good idea to be more vigilant on hand washing when others are sick, as door knobs and other frequently touched objects are common vectors for spreading colds and flus. I keep a bottle of hand sanitizer at my desk during cold season.

The only other advice I can give, is bring entertainment (a book, an ipad, or something) to your remicade infusion as it's a very boring 3 hour process. And try not to worry so much. Remicade is pretty quick working. If you're going to get a response (and about 60 percent of patients do) then it'll be within the first 2-4 weeks after starting remi.

Good luck, and let us know how it goes!