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

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Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 7/26/2009 6:15 PM (GMT -6)   
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?
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22
Hospitalized for 3rd time after 2nd Remicade for "opportunistic infection due to suppressed immune system" 5/13 - 5/15

Current Meds: Remicade (3rd infusion 6/8/09), 4th scheduled 7/28/09, Probiotics

Discontinued: Prednisone, 6MP, Colazol (hair loss)


Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 7/26/2009 6:45 PM (GMT -6)   
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
Age 34, Diagnosed with UC September 2008
Current Meds:
Started Azathioprine 100 mgs 6/22/2009 and Apriso 4 tabs daily 6/11/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Flaxseed Oil 2000 mg per day
Multivitamin
Also tried: Remicade, Asacol, Rowasa, Cantasa, Prednisone 2 times for about 3 months each


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 7/27/2009 10:04 AM (GMT -6)   
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!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22
Hospitalized for 3rd time after 2nd Remicade for "opportunistic infection due to suppressed immune system" 5/13 - 5/15

Current Meds: Remicade (3rd infusion 6/8/09), 4th scheduled 7/28/09, Probiotics

Discontinued: Prednisone, 6MP, Colazol (hair loss)


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 7/27/2009 10:07 AM (GMT -6)   
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!
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


uclife
Regular Member


Date Joined Aug 2007
Total Posts : 50
   Posted 7/27/2009 10:41 AM (GMT -6)   

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


Amy
32 yr old
Pancolitis since oct 06  told I have crohns-colitis over lap 10/08
waiting on that remission
asacol 12 daily, canasa suppositories, protonix, iron supplement, ativan, Prednisone started at 30mg now on 10mg daily. 
Started remicade 4/28/09....no notice of relief yet
Trying to stay positive!!
 


Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 7/27/2009 3:29 PM (GMT -6)   
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
Age 34, Diagnosed with UC September 2008
Current Meds:
Started Azathioprine 100 mgs 6/22/2009 and Apriso 4 tabs daily 6/11/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Flaxseed Oil 2000 mg per day
Multivitamin
Also tried: Remicade, Asacol, Rowasa, Cantasa, Prednisone 2 times for about 3 months each


redhah
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/27/2009 3:48 PM (GMT -6)   
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.
23 yr. old female
diagnosed age 15, current meds: Remicade every 8 weeks, iron
have taken: azathioprine, asacol,colazal, prilosec, prenisone, rowasa + cortisone enemas, flagyl + vancomycin for c-diff
hospitalized three times: 2002 April (2 weeks) 2003 December (1 week) 2006 (1 week), have had pick line,
have had 4 colonoscopies, had blood transfusion Feb 2008


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 7/27/2009 8:44 PM (GMT -6)   
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.
Pancolitis >20 years, allergic to all 5ASAs
(To pharma: enough already with the umpteen variants of Asacol!)
Tried everything under the sun (natural and alternative), low carb SCD
Some partial success with TSO but  too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering increasing pred again,
homemade fecal infusions, maybe surgery this year soon
 
 


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 7/27/2009 8:55 PM (GMT -6)   
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.
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 7/27/2009 8:56 PM (GMT -6)   
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
Age 34, Diagnosed with UC September 2008
Current Meds:
Started Azathioprine 100 mgs 6/22/2009 and Apriso 4 tabs daily 6/11/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Flaxseed Oil 2000 mg per day
Multivitamin
Also tried: Remicade, Asacol, Rowasa, Cantasa, Prednisone 2 times for about 3 months each

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