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Posted this question before with no response-please help with issue of remicade possibly not working

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Crohn's Disease
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Posted 9/30/2007 7:53 AM (GMT -8)
I had a new fistula form after my 2nd infusion. After my 3rd infusion it closed for about 2 weeks but busted open again right before 4th infusion. After my 4th infusion, it has gotten worse-more blood and pus.

So, does that mean it's not working for me? I really could use some advice here.....I won't see the Dr. until after my 5th infusion and I am going to Mt. Sinai a week before the 5th infusion but would like to know how to address this issue with the new Dr.

Thanks in advance,

Ginger

Posted 9/30/2007 10:10 AM (GMT -8)
Mine took 5 infusions before it was completely closed.  But I was also on a high dose of flagyl and levaquin.   What dose of remicade are you on?  I might try increasing the dose, and only having 4 weeks in between your infusions to see if that helps close it.  If it then does work, you can always start stretching out your infusions to 6 or 8 weeks.   You obviously had some response to it after your 3rd infusion....so hang in there and try to be patient!  I know...not easy or fun!

Posted 9/30/2007 10:23 AM (GMT -8)
I do agree with the above response!! Do not give up yet. No, I do not believe this means it is not working for you. This is a big drug and it may have some side-effects and some bodies take a lot longer to get used to drugs when they are new. I would maybe up your treatment. Why don't you get in to see your Dr sooner than after the 5th? It can take Remicade a few times before it actually starts to work. Don't give up!!! My best advice. It is hard, we all know. I think you need to be very firm with your doctor.

Most patients with Crohn's are on other medications ALONG with Remicade. Are you? The less meds the better to us BUT I would def. mention this to your Dr. Do some research online and maybe ask other people on here what meds they tried or were on while on Remicade and see what people say. Did it work? Did it not? Do you take any supplements as well?

Good Luck!
Posted 9/30/2007 11:58 AM (GMT -8)
It takes awhile for Remicade to work - I think I had 7 or 8 infusions before my fistula healed up. Give it time, or ask about upping the med or putting them closer together.
Posted 10/1/2007 4:41 AM (GMT -8)
Hi Mine used to close and busrt open again sounds to me like the Rem. is working .I used to bleed too and I am pretty sure that it means it is trying to heal . Just give it more time like others suggested . Best Wishes. lol gail
Posted 10/1/2007 11:28 AM (GMT -8)
Thank you all! I really needed reassuring. The last time I saw the Dr. he was not very positive about my bodies response to remicade so it made me very nervous. I will probaly wait to see what the Mt. Sinai Dr. has to say instead of seeing my Dr. before my next infusion. I really want a 2nd opinion. I thought I should also be on an anitobiotic but my surgeon said it was not necessary. My GI said to ask the surgeon so I am off to Mt. Sinai! These guys don't seem to know much.....

Thank you again,

Ginger :-)

Posted 10/1/2007 12:24 PM (GMT -8)
I would ask about flagyl and cipro...they have the best track record for healing fistulas especially when used together. Let us know what you find out. Hang in there!
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