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Remicade if you start to flare before your infusion how long does it take after

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Posted 7/26/2009 11:15 PM (GMT 0)
to get it under control? I am in so much pain today and a horrible relapse with my infusion coming Tuesday I am wondering
how soon I will get relief?
Posted 7/26/2009 11:45 PM (GMT 0)
I went into a flare a week or so before my last 2 Remi infusions back in February and April. I am sorry to say (and don't mean to be the bearer of bad news) but they determined that Remi wasn't working for me anymore, so I can't use it anymore. They did blood tests (sent them away to the infamous Prometheus labs) and determined that there was plenty of it in my system and I was still flaring.

I hope this doesn't happen to you! I only got started on it in October, so, who knows if it ever really worked for me. (I was on Pred for most of that time, so that was probably what helped!)

Anyway, good luck with your next infusion, I hope it works out for you!

Jen
Posted 7/27/2009 3:04 PM (GMT 0)
I can't even imagine what I will do if the Remicade doesn't work this time! I am really hoping for an overnight fix!
Posted 7/27/2009 3:07 PM (GMT 0)

Jen O said...
I went into a flare a week or so before my last 2 Remi infusions back in February and April. I am sorry to say (and don't mean to be the bearer of bad news) but they determined that Remi wasn't working for me anymore, so I can't use it anymore. They did blood tests (sent them away to the infamous Prometheus labs) and determined that there was plenty of it in my system and I was still flaring.

I hope this doesn't happen to you! I only got started on it in October, so, who knows if it ever really worked for me. (I was on Pred for most of that time, so that was probably what helped!)

Anyway, good luck with your next infusion, I hope it works out for you!

Jen

Jen--what is your doctor recommending now that remicade isn't working? I started remicade in june and haven't had any results (I am miserable!). Thanks!
Posted 7/27/2009 3:41 PM (GMT 0)

Hi there...I was just browsing the site to see if there was anyone else having no luck with remicade!  I have had 3 infusions so far and seem to be just as bad as before I started. Urgency and blood in bm and tons and tons of gas!  UGH!!  I am a slave to the bathroom, I cant even enjoy going to dinner without staying for at least a half hr after to make sure I go to the bathroom before I get in the car!

I was so scared to try remicade but decided it was best to try and then to find  results is disheartening.  So many people have a great outcome but I guess it just was not the med for me.

So I guess I am curious as to what other options people have been given.   I was told I could start humira next but I have read that if you dont respond to remicade then you may not to humira. 

I am staying positive but its tough at times as you all know!

Thanks for your input

Amy

Posted 7/27/2009 8:29 PM (GMT 0)
Amy and uclife:

My original doc (a general GI doc) when right for the Remi when the IV steriods didn't get me out of my first flare.  I had been admitted to the hospital for about 10 days and they were really pushing surgery on me and I didn't want it.

(October 2008)

Fast forward to May 2009, I switched to an IBD specialist because the doc was still pushing surgery on me and I knew there were other options out there.  The new doc says lets give Azathioprine (Imuran) a try.  I'm on the 5th week of that now, off Prednisone for about 2 weeks now. 

I am pretty good.  I still have nicely formed stools and about 3 times each morning.  (my pre-UC standard)  I do have a bit of urgency, but I don't really know if that isn't just me having a bit of anxiety.

The new doc originally suggested we try Humira but it isn't approved in the US for UC yet (hopefully it will be soon) so my insurance won't cover it.

Hope that helps guys!

Jen

Posted 7/27/2009 8:48 PM (GMT 0)
The night of my remicade infusion everything is usually all better for me. I don't know what I would do if remicade didn't work. It seems to have instant relief for me. It makes all the bleeding go away.
Posted 7/28/2009 1:44 AM (GMT 0)
Jen O- are you sure your insurance won't cover Humira if Remi fails? That was the case with me and they approved it almost instantly. (Humira is failing for me now though, sigh). Anyway, you should be able to get Humira. Plus, I have heard it will be fully approved for UC this fall.
Posted 7/28/2009 1:55 AM (GMT 0)
Thanks Jen O! It sounds like maybe humira is the next step, if it is paid for. I guess I'll see what my GI recommends when I go back in a couple weeks. Maybe a higher dose of remicade would do the trick. I see some people do 10 mg/kg.
Posted 7/28/2009 1:56 AM (GMT 0)
I guess I am not 100% sure if the insurance will pay for the Humira or not, but I'm just going by what the doctor told me.

Sometimes I am happy about how I am feeling, sometimes I am not. I just don't know what I should be happy with, I guess. I write symptoms off as part of the disease.

Probiotic, it seems like I am maybe like you. I am hoping this Azathioprine thing works, at least long enough for Humira to get approved, or it looks like I am headed for "surgery soon" like it says in your sig. And you have been dealing with this dreaded disease for all those years, and I am not even at the one year mark and I have failed with so many meds already.

VERY FRUSTRATING!!!!

Jen
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