NOD2/ Card 15 Genetic Testing

I am newly diagnosed and have been posting for the last 2 weeks since diagnoses.  I have tried to read anything I can to learn about my disease to be educated and make good decisions about my treatment.  I recently learned about the genetic testing for NOD2/Card 15.  The presence of these markers "could" indicate a more aggressive disease in crohn's patients.  I know that this is all research at this point and they do not know if this exactly correlates with outcome.  I am very interested in finding out if I have this marker and was wondering if anyone else had this testing.

Also the Prometheus testing Anti-CBir 1 test on mine came out 31.1 and the reference value is <21. and this is suppose to be corelated with small bowel fibrostenosing and internal penetrating disease. 

So now I am scared about all this and am very interested in getting further markers tested. 

Maybe I should choose the remicade based on all this...just afraid of all the side effects.  I don't have good luck anyway. 

 

Have not had any genetic testing done but let me offer a word of caution in this area. Even though you may want to have this done to have a better understanding of this disease and how it is going to affect you......genetic testing NOT paid for out of pocket, i.e.; getting your doctor to order it and the insurance company to pay for it is NOT a good idea. It gives your insurance company way tooo much information on you and could backfire on your future insurance claims. They are always looking for pre-existing medical reasons not to pay a claim and God forbid you get in the situtation of losing your insurance, seeking out another insurance company and they have THAT kind of information in their pockets! Proceed with caution.

I did Remicade for over a year with much success until building antibodies to it. Would recommend you keep some Benedryl on hand for infusion days just in case you have a reaction. Also, try and schedule you infusion days on Fridays so if you have flu like side effects for a couple of days, you'll have the weekend for down time. I have recently changed to Humira and so far so good. Good luck to you with your decisions and as always welcome to the board!