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Oh no,,confused more then ever.

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Ulcerative Colitis
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Posted 12/16/2011 6:41 PM (GMT 0)
Ok, I wrote awhile back about my son getting a fistula . So the doc thinks he might have crohns colitis since it is just
in his descending colon and ileum..Doc wants him to take Remicade every 6 weeks instead of every 8 weeks. Son decided to see another
doctor just for another opinion. New Doc said, if he has crohns/colitis,,he'd like him on drug, Humira. where he'd give himself a shot every2 weeks.
Now son is confused. Don't know what to do...Remicade has him doing ok until the fistula happened... he is afraid to go off it because due to
the antibodies he couldn't go back if the Humira didn't work as well. And he isn't so crazy about giving himself shots. The Remicade has been a
real blessing for him...absolutely no side affects at all...feels good after,,no joint pain,,no other medications...but this new doctor really confused him.
Now he doesn't know what to believe or what to do. I just ache for him and feel so helpless. Any suggestions from anyone with crohns/colitis?
Since Remicade works so well, would Humira work too. ???? thanks for any advice to consider.
Posted 12/16/2011 7:24 PM (GMT 0)
I think pb4 has Crohn's Colitis but I don't see too many mentions of it here. I know Humira is used more often for treating Crohn's so I do understand why that may be a good option for him but I don't see the harm in trying Remicade every 6 weeks to see if the fistula improves and if his condition stays stable. Humira will be an option if he doesn't improve.. You may even consider seeing another GI for a 3rd opinion. I know it's a hassle but it may make the decison easier. I am sorry you're feeling so stressed, it is tough dealing with IBD but in reality, we have ups and downs, let's hope he heals and stays in an up for a very long time.
Posted 12/16/2011 8:42 PM (GMT 0)
Thanks Moderator... I feel for all you folks on this board, not just my son. It aggravates me to no end to think that there may a cure out there, like the fecal transplant therapy, but they are dragging their feet. The Pharmacy companies would lose a lot if a cure came along..and they couldn't sell Asacol or 6 MP which is expensive. My son tried it long ago, but didn't do much good, Remicade is a true blessing for him and he only goes a couple times in the morning and he is good all day. Before, he'd go anytime, anywhere, at his job,,anywhere...so he became a recluse and lost his job. He started his own little carpet cleaning business and can set his own hours.
Trouble is,,he cannot afford insurance,,,it is out of sight for him,,so he relies on the PAP program and they help with the Remicade. Thanks for your tips.
Posted 12/16/2011 8:58 PM (GMT 0)
If he does decide he wants to try humira, I believe they also have a PAP program.

Check out this link:
http://www.myhumira.com/InsuranceHelp/FAQ.aspx

I think if I were in your shoes, I wouldn't want to switch medication either. When you find something that works, it's such a relief, you don't want ot rock the boat unless you have to. You may want to ask on the Crohn's board about Humira vs. Remicade. I believe there are people on both having success.

Posted 12/16/2011 10:09 PM (GMT 0)
cra43, why don't you bring this question over to the Crohn's forum. Plenty of Humira & Remicade users over there, and lots of BTDT fistula experience too.
Posted 12/17/2011 3:36 AM (GMT 0)
Hey cra43, as notsosicklygirl mentioned, I have crohn's colitis but luckily have not had a fistula in my 20 yrs of having it...many patients have used Remicade as it's suppose to be the best for healing fistulas quicker, and many have/do use Humira as well...it's very individual for each patient and many CDers have used both meds when one doesn't work, they try the other, that's realistically the option you are now faced with for your son, try one, see how it goes and if necessary try the other.

Best of luck to your son!
Posted 12/17/2011 7:20 PM (GMT 0)
Thank you all so much for all the info and advice. I think my son my just stay on the Remicade since it is working,,and do what his first doctor
suggested,,and take it every 6 weeks instead of the 8 weeks... thanks again.
I keep reading this forum in hopes someday there is a cure.
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