Crohn's Disease and Remicade?
My husband suffers from Crohn's and the Dr. has put him on a IV med called Remicade. Anyone ever had experience with this med?
Update:He has improved tremendoulsy on this medication. He has been taking it every 6 weeks for almost a year now. He is, however; skeptical of the side effects. His doctor has told him that Remicade has caused TB in some people. Well now he thinks that he will get it and not be able to be around me or our boys (3 and newborn) which I think is silly to worry about what could happen insead of appreciateing the good days! But then again, I am not the one with the disease, I'm just a care giver and it's very hard on me to see him hurting like that. I would like him to continue as long as it's working. It's just that not a lot of people have had exp. with Remicade, heck most of the people that we know don't even know what Crohn's Disease is.
Comments
I was diagnosed with CD 16 years ago, and started getting Remicade infusions every 7-9 weeks about 4 years ago. It's helped quite a bit to keep the disease under control. Your husband needs to make sure that he takes a benadyrl (or equivalent) and tylenol right before the infusion so that any side effects are minimized. The nurse should give him this.
Research has shown that remicade is more effective over the long term if you continue to take immunosuppressives such as 6-mp (mercaptopurine/purinethol) or similar meds while you are undergoing Remicade therapy. In addition, if a person gets infusions, stops getting infusions, and then starts getting them again after a period of more than one year, the remicade won't be as effective.
It's an expensive drug. Hopefully you have good insurance. When I went to the endoscopy center for my infusions, my co-pay was something like $1500 a time! My doctor and I figured out that, with my insurance, it was better for him to write me a prescription so that I could pick up the Remicade at my local pharmacy and then carry it (in a cooler) to his office where one of his nurses administers the IV. I only have to pay a $30 co-pay for the Remicade, and a $30 co-pay for the office visit.
I do have to order the Remicade through the pharmacy a week ahead of time so that it can be ready when I need it, but that's an easy thing to do.
My doctor is an hour away from where I live, and I tried to find a local hospital or treatment center where I could get the infusions, but none of them were willing to do so because of liability issues of me bringing the remicade. They were worried that I wouldn't keep it refrigerated properly, but my doctor has been my doctor since I was diagnosed, so he knows that I'd follow the directions with the meds.
Anything else you want to know? Just add on to this question, and I'll try to answer for you.
I also suffer from Crohn's and I had 3 injections of Remicade about 8 yrs ago. It didn't work for me and I now have an ileostomy. Has his experience been ok so far?