What's next after remicade?

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Wisconsin
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/18/2009 10:18 PM (GMT -6)   
I had my first GI issues in 1995. After a Barium enmea and coloscopy, I was told I hadnon specific colitis. In 2000, I had more issues and was diagnosed with UC. I began Asacol but stopped it after things got better. In 2005, I had severe issues, 12-14 x a day with blood, mucus, bloating and pain plus the inability to control things. I was doubled on the Asacol and after that didn't work did the Predisone which didn't help. Finally the Remicade came through. I  get it every 8 weeks and it has changed my life. I had my first reaction (flushed, difficulty breating) last dose and it was determined the nurse ran the IV too fast. BUt now, here's my question...if I get another reaction to the remicade, I'm done and I don't know what's next.
 
Any ideas? I'm diagnosed with UC for over 8 years, and have a family history of colon cancer.

Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/19/2009 7:33 AM (GMT -6)   
Usually Remicade is the last option before surgery. But now some Uc'ers have started Humira. I don't know if it's been approved yet by the FDA in the states for Uc or even how some people have come to get on it - truthfully I don't even know much about Humira. But I have read numerous posts by people here having some success with Humira when Remicade failed them.
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sarah123
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Date Joined Jan 2006
Total Posts : 16
   Posted 2/19/2009 8:24 AM (GMT -6)   

i'm actually voluntarily finishing my remicade treatments (after 1 1/2 years) this month! hoping to get pregnant later in the year. my MD basically said that unless something flares up- then its just my IMuran for now.... she also said that 1. remicade could be started again but that htere is always a chance of it not working 2. humira....when i started remicade, humira was still in the trial phase for UC pts (in canada)...but she said likely by next year (if i need it), it will be available..lets hope my drug plan pays for it! 

maybe if remicade isn't working for you, humira might be a better option anyway? can do it from home- a lot more freedom.

 

good luck.

 

 


Nor_TX
Regular Member


Date Joined Nov 2008
Total Posts : 360
   Posted 2/19/2009 9:20 AM (GMT -6)   
I've been having Remicade for almost 4 years now, and about 1 1/2 years ago I developed a reaction to it when it is one hour into the infusion. The way they treat the reaction is to stop the drip, give me extra Benedryl and let the reaction pass. They they start up the infusion again and I continue through without any more incidents. My reactions manifest themselves in a high spike in blood pressure (50 to 60 points), my face and chest gets very red, sweating, nausea, extreme difficulty breathing. The nurse and I have it figured down to about 4 minutes before the reaction, which always starts when the IV is about to go from 40 to 80. She now stops it, administers the meds, waits about 10 minutes for the Benedryl to kick in and starts the IV up again. This is a new nurse and the difference is that she treats the reaction BEFORE it happens, rather than waiting for it to start. This has made the reaction much less violent. The doctor does not want to stop the Remicade since it is doing such a great job. It really has given me my life back. He feels that since we have developed a "plan" to deal with my reaction, he feels we should continue.

I take Claritin the morning of the infusion. When I get to the office, they give me 2 Tylenol, 2 Zyrtec and 50 mg. of Benedryl and 50 mg. of Solumedrol. I get another 50 mg of Benedryl just before the reaction. The reaction lasts no more than 4 to 6 minutes. I rest for 10 minutes and then she starts the IV back at 80 and the whole procedure lasts a little more than 3 hours. Granted, I am pretty tired and sleepy, but I drive home and get into bed and sleep for the night. All in all not too bad.

I am very lucky that my new nurse is a "no nonsense", let's get this done type of person and now that my infusions have been moved to every 4 weeks, I feel I am in pretty good hands.

Good luck to everyone on Remicade.

Nor
Presently on: 500 mg. Remicade every 6 weeks
                   15 mg. Methotrexate/injection weekly
                   12 Asacol daily


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 2/19/2009 9:34 AM (GMT -6)   
Yes, I was going to ask if you were taking any pre-meds before the infusion. I was taking Benedryl, but when my infusions were changed to the fast track, the Benedryl made me too sleepy to drive, so I changed to Claritin (or Loratadine) and a Tylenol before heading in for my infusion. Remi has been heaven sent for me too; I think about switching to Humira, but there's the "flare scare" factor going on in my mind. If the Remi stops reacting, I'll change over to Humira too.

Carol

Remicade - will have my 27th infusion on March 19 Vitamin B-12/Biotin, Probiotics
 
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mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 2/19/2009 10:01 AM (GMT -6)   
my doc just mentioned remicade to me yesterday since my current meds do not seem to be getting this flare under control...
even with all the scary stuff i'm reading about this drug it seems like it makes a big improvement for a lot of people...
now i have to figure out the ins situation...yikes- it's not on the drug list, but it says the list is only for drugd dispensed by a pharmacy, not in the doc's office so maybe it will be covered??? need to make some calls.
anyone know of any goor remicade resources to look at? i looked at the new medications threads, but didn't see too too much...
thanks!

ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 2/19/2009 5:05 PM (GMT -6)   
I just did my 2nd Remicade infusion yesterday (I skipped the 6MP/Imuran step completely due to the severity and timeframe) and *fingers crossed* so far it seems to be helping even though I'm still freaking out about the poss side effects when I let myself think about them. I did discuss w/ my docs what would happen if Remicade didn't work and they indicated that at that point they can argue w/ insurance for Humira or another drug (I think one of the docs said Cimzia rather than Humira which surprised me) even though it hasn't been approved for UC. Like Sarah123 said my GI believes that Humira will be approved for UC next year. Based upon Nor_TX post it sounds like they can make modification/adjustments to your infusion that will allow you to continue taking Remicade even with a reaction. I know that I have read that there are many people that automatically get Benadryl before they get their infusions to reduce the reactions that occur (or to reduce the potential for reactions).

There also seem to be a lot of trials out there to get into (abatacept, golimulab, etc.) which offer additional med options (if you're lucky enough to get the drug) so there's more out there than just surgery as an option if Remi does end up failing or your reactions are too extreme. I know that in talking to my sis (medical statistician - not just a family member that thinks she knows stuff smilewinkgrin) she indicated that the data out there is showing that the drugs that work on one autoimmune disease are working on all - they just have to deal w/ the testing and results for each disease to get it approved by the FDA so it takes forever and as we've all noticed, it seems like UC is one of the last diseases that the drugs are tested on. My objective is to keep my colon for as long as I can because it seems like there are new drugs and new information that can lead to new treatments coming out all the time and if I can keep it for long enough, there's a chance that I can hope to control this disease for good. shocked I'm REALLY looking forward to that day!!! yeah
Ducridr - 34 - female

Diagnosed w/ severe pancolitis 11/20/2007

Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 40 mg (started at 40mg Nov 08 - again), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day) Coumadin (for blood clot) 5mg/day, 1st Remicade treatment 2/4/2009.

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