Remicade and flare ups

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jasperthedog
Regular Member


Date Joined Mar 2008
Total Posts : 68
   Posted 7/2/2008 1:14 PM (GMT -6)   
I am on Remicade currently.  I go next week for my 4th infusion.  I as supposed to get the infusions every 8 weeks.  I keep having these "mini" flares that start around 6-7 weeks after my infusion.  My GI's nurse was going to consult with my Dr, but said they may increase my dosage of the Remicade to 10mg per kilo and if that isn't working up the frequency of the infusiong to every 6 or 7 weeks.  What is the maximun dosage of Remicade that you can get at one time?  Also what is the most frequent schedule that you can get the infusions? 
Thanks,
Cara

jamo0001
Regular Member


Date Joined Apr 2007
Total Posts : 75
   Posted 7/2/2008 1:27 PM (GMT -6)   
I had/have the same issue.

I believe you can receive either 5 mg or 10 mg q kilo. My GI also let me get infusions as frequently as 5 weeks; it wasn't until I was needing them about every other week that he changed the treatment plan.
James

21 yrs old, diagnosed severe ulcerative pancolitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007; 16 Jun-22 Jun 2008
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007
Imuran (azathioprine) 50 mg x 4 daily
Iron, Vit C, Vit D, Zinc, and seemingly always on Flagyl
Eating fruits and vegetables like there is no tomorrow...


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 7/2/2008 2:25 PM (GMT -6)   
Same thing happened to me and my GI moved me to a six week schedule. I am due this Saturday. Last time I had a lot of bleeding into my fourth week and got an infusion at five weeks, but I only just started getting bleeding a few days ago to it looks like six weeks this time.
Meesh
Diagnosed UC April 27, 2006; mild arthritis in lower back, dx'd May 2008
8 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08; 5/24/08
Current meds & supplements: Lialda, 4 tabs in the morning; Protonix; Lexipro 10 mg; Xanax as needed; Tramadol as needed for arthritis pain; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Past meds: Prednisone 4/06-4/08; Entocourt EC; Rowesa; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 7/2/2008 3:54 PM (GMT -6)   
same thing with me- I am now on the 10mgs per kg dose, every 6 weeks. That's about as close as my GI likes to push it- I've heard you can do them as frequently as every 4 weeks. Although, that's a lot of a heavy drug, ya know!?!?! I was on the 5 mg dose for a long time, about a year, before it started to lose effectiveness- I'd get symptomatic at week 4-5. So we upped the dose & shortened the dosing schedule. It's alright- I do get symptomatic around week 5, but am just holding out for now. There's always Humira, I keep telling myself.... eyes
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 100mgs/day
Culturelle
 
 
 
 


Imlivinrite4Him
New Member


Date Joined Jul 2008
Total Posts : 5
   Posted 7/2/2008 4:15 PM (GMT -6)   
confused  Can someone give me some info on the remicade as far as how long you can take them. What the cost is where you are.  Mine is 10,000 a treatment.  I am in the whole so far for 20,000 with at least 20,000 more to go.  I have taken Asacol my latest med my dr had to take me off of cause it was causing anxiety attacks headaches the whole shabang.  Colazal, 3 mp i think is the other one.  Now i am on steriod shots since the pills freeze me up.  I really need help here with this have had this for over a year now and it is better but not good enough.  My dr called me a tough cookie.  Not a good compliment I tell you.  Any info and help would be greatly appreciated.  Imlivinrite4Him

jasperthedog
Regular Member


Date Joined Mar 2008
Total Posts : 68
   Posted 7/2/2008 6:22 PM (GMT -6)   
There is a rebate program for the Remicade. I think it is called Remistart. Someone might know the name or the website. I have really good insurance so it only costs me $35 per infusion. My Dr's office has an infusion center in the endoscopy suite so I have it there. If I had it at the hospital it would only cost $100 per infusion. My Dr said I would take it as long as it is working, so I don't know exactly how long that is. I go next week for my 4th infusion and he is upping the dosage from 5mg/kilo to 10mg/kilo since I keep having flare ups often. Hope it works for you if you start it!
CARA  31years  FEMALE
Medications:
Remicade
Lialda 2 pills a day
Prilosec OTC
Vicodin/Tramadol as needed
Phenergran/Zofran as needed
Cortifoam
Viactiv Calcium Chews
Digestive Advantage


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 7/2/2008 9:08 PM (GMT -6)   
My insurance pays 100%, no copay at all either. I have it done at the local hospital's infusion clinic. I never saw a bill for it, but I asked the nurses once one time how much it was and they said at my dose it was $4,000 an infusion! If I ever lose my insurance I am sooooo screwed!!

Meesh
Diagnosed UC April 27, 2006; mild arthritis in lower back, dx'd May 2008
8 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08; 5/24/08
Current meds & supplements: Lialda, 4 tabs in the morning; Protonix; Lexipro 10 mg; Xanax as needed; Tramadol as needed for arthritis pain; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Past meds: Prednisone 4/06-4/08; Entocourt EC; Rowesa; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07)


AngelTT
Regular Member


Date Joined Jun 2005
Total Posts : 213
   Posted 7/3/2008 7:13 AM (GMT -6)   
I get infusions every 6 weeks and my doc said it really isn't good to establish a shorter time frame than that. I have still flared while on Remicade also but it wasn't as bad as a few years ago. I still have to take Prednisone here and there to calm things down.
34 year old female, Diagnosed Ulcerative Colitis 5 years ago
Current Meds: Remicade every 6 weeks, Prednisone 10mg (tapering), Prevacid, Sustenex, Lialda, Lexapro (anxiety), Synthroid, Iron, vitamins, Fish Oil
Expecting first child 12/08 via gestational surrogate!!!!


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 7/3/2008 7:39 AM (GMT -6)   
I am at 10mg. and my remi costs 10,000 a pop as well. I have heard of every 4 weeks in extreme cases and as far apart as 12.

I met a lady who has been on remicade for over 10 years and she has had no side effects at all. So i am not concerned about how long one can be on.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/3/2008 9:21 AM (GMT -6)   
My insurance covers 80% of the Remicade treatment. Meesh, I wish I had your insurance!

My GI said if Remi works for me, I will have to take it "indefinitely" since people usually start flaring if they go off of it.

For those of you who have been taking Remi, how long was it before you noticed positive differences (big or small) and when did you reach remission?
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (2nd infusion 06/26/08), 2.4 g Lialda
*exploring the option of surgery
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/3/2008 9:31 AM (GMT -6)   
Remicade is considered a maintenance drug. Some docs will give short bursts to induce remission, but most won't and that isn't the recommended use of the drug. Remember that, like all of the medical treatments available to us, Remi doesn't work for everyone.

I noticed small differences after my second infusion and big ones after the third. Generally if you haven't seen improvement by the fifth infusion, you aren't going to respond to the drug.

Here is the patient assistance site for Remicade:

http://www.centocoraccessone.com/patientassist/patient.jsp
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

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