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

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ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 9/30/2007 8:53 AM (GMT -7)   
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
36 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (28 surgeries including abscess I & D, exploratory surgeries, 2 C-ton drains and 1 fistula plug) Count does not include self bursting abscesses.
1st Remicade infusion 6/5/07.  Lots of joint pain, and a new fistula since the 2nd infusion 6/19.
Praying I'll get better soon so we can have a baby.
Ginger :)


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 9/30/2007 11:10 AM (GMT -7)   
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!

lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 9/30/2007 11:23 AM (GMT -7)   
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!

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 9/30/2007 12:58 PM (GMT -7)   
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.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/1/2007 5:41 AM (GMT -7)   
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

ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 10/1/2007 12:28 PM (GMT -7)   
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 :-)
36 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (28 surgeries including abscess I & D, exploratory surgeries, 2 C-ton drains and 1 fistula plug) Count does not include self bursting abscesses.
1st Remicade infusion 6/5/07.  Lots of joint pain, and a new fistula since the 2nd infusion 6/19.
Praying I'll get better soon so we can have a baby.
Ginger :)


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 10/1/2007 1:24 PM (GMT -7)   
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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