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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Remicade for the second time


02-07-2013, 12:55 AM   #1
nmgonzo
 
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Remicade for the second time

I am just curious if anyone has ever been on Remicade, taken off, tried Humira and Cimzia then back to Remicade? I was on Remicade for several years and it kept my fistulas under control. I was taken off due to some joint pain. Since then I have been on Humira and taken off that due to repeated outbreaks of shingles. Currently on Cimzia but my fistulas are running wild! I had seton placement last Friday and they placed 8 setons and I know that there is another fistula without a seton in it. Remicade was the only med that actually worked for me and I have asked about going back on it but was pretty much dismissed by saying that it wouldn't work. Has anyone ever tried to go back on it?? I desperately want to try it at least. I am so frustrated with what my life has become because I know that it can be better. I would totally deal with the joint pain just to have these fistulas heal up once again. These stupid things have affected every part of my life. If anyone has any insight I would appreciate it very much. Thanks!
02-07-2013, 10:27 AM   #2
Dukeis
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I was on Remicade for 7 years. I had to stop it because of a fungal infection. They tried to restart it about 1 1/2 years after and it never worked for me. Seemed to work when they first started it for about 5 weeks. They made me wait until the 8 week point to have another dose. They never did the loading doses like they do when you first start remicade. I sometimes wonder if they would have done the loading doses if it would have worked again.
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02-07-2013, 01:11 PM   #3
nmgonzo
 
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I wonder too. It seems like they would have started it as if you had never had it before. That is where I am at. Wondering ,what if?! I figure what they are doing now is not working, why not try it?! So, have they put you on anything else in place of the Remicade? Is it working?
02-07-2013, 01:12 PM   #4
nmgonzo
 
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Sorry, I see now that your on Humira.
02-07-2013, 02:55 PM   #5
Dukeis
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Yes I'm on Humira. It works pretty well on the Crohn's.
02-07-2013, 04:18 PM   #6
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I was previously on inflixamab went into remission was taken off it and a year later i've just been put back on it. Had my first dose yesterday but i haven't noticed any difference today though perhaps i need to give it a little time. I'm going to be given another dose in 2 weeks then 4 then every 8 weeks..so i'll let you know how i get on
Andie x
02-07-2013, 06:32 PM   #7
Dukeis
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I was previously on inflixamab went into remission was taken off it and a year later i've just been put back on it. Had my first dose yesterday but i haven't noticed any difference today though perhaps i need to give it a little time. I'm going to be given another dose in 2 weeks then 4 then every 8 weeks..so i'll let you know how i get on
Andie x
Please do keep us updated. I'm really interested if it works.
02-07-2013, 07:00 PM   #8
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Will do Dukeis, in fact i'll start a thread and post every few days over the next 2 weeks to record my experience, i'm more than happy to help others i'd like to put something back into the forum as its been so helpful for me

Andie x
02-07-2013, 07:07 PM   #9
Dukeis
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Will do Dukeis, in fact i'll start a thread and post every few days over the next 2 weeks to record my experience, i'm more than happy to help others i'd like to put something back into the forum as its been so helpful for me

Andie x
That will be interesting! Hopefully it will help others. Just wish my doctor at the time would have did the loading doses.
02-07-2013, 07:41 PM   #10
System-X
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I'm interested in this outcome too!

Thanks
02-08-2013, 02:28 AM   #11
nmgonzo
 
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Yes, please keep us updated andreagillespieuk.
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