A Different Remicade Question

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Regular Member

Date Joined Dec 2008
Total Posts : 115
   Posted 8/2/2009 6:53 PM (GMT -6)   
Hello All,
             I have chronic left sided UC  now and have been getting worse over the past few months and my MD is really pushing the Remi. I'm well aware of the good, bad & ugly so here's the question.
How many members here have had success with Remi that are left sided UC only? And of course I'd like to hear from any left sided UC members who Remi hasn't worked for as well.
Thanks so much in advance!
550 mg. - Imuran daily
     5 mg. - Pred daily
   20 mg. - Prilosec daily
   35 mg. - Fosamx weekly

Forum Moderator

Date Joined Mar 2003
Total Posts : 10407
   Posted 8/2/2009 7:15 PM (GMT -6)   
I have left sided involvement only, and Remi has kept me in remission for more than three years now.

I haven't had to take any Pred since starting the Remi. I do still take Colazal for maintenance.
Ulcerative colitis forum co-moderator
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"

Regular Member

Date Joined Dec 2008
Total Posts : 115
   Posted 8/2/2009 7:17 PM (GMT -6)   
Thanks Judy...it's appreciated.
600 mg. - Imuran daily
     5 mg. - Pred daily
   20 mg. - Prilosec daily
   35 mg. - Fosamx weekly

Regular Member

Date Joined Apr 2009
Total Posts : 249
   Posted 8/3/2009 1:03 PM (GMT -6)   
Hi festeris...I am in the same boat as you right now. My GI is pushing Remi for me also but I am having a hard time accepting the fact I would have to have IVs. I hate needles....everything about needles. I could get use to the fat it would just take me a while to do so. I work full time and have 2 boys ages 1 and 5 and just am not ready to do that yet. I am trying to get colazal covered by my insurance but they will not because mesalamine didn't work for me and they say most likely colazal won't work for me either. Anyways I am looking in to the pros and cons also. I just want to be able to get off prednisone.
Colonoscopy on 4/23-diagnosed with severe ulcerative proctitus
12 Asacol/day - don't think it actually is working
proctofoam at night
prednisone (10 mg) tapering - upped it again til august 6
Vitamin D
Azathioprine (50 mg)   serum sickness reaction 
pentasa  didn't work
canasa   didn't work
Waiting to feel healthy again and waiting on the next plan of action since can't take azathioprine....

Veteran Member

Date Joined Aug 2007
Total Posts : 650
   Posted 8/3/2009 1:28 PM (GMT -6)   
I wanted of prednisone too...actually I refused it. So Remi or surgery really were my only two options... Started remi and I feel great.

btw.. after the initial 2 or 3 its every 8 weeks.. .that's not much...

specially if you've had UC for a while.. you have to get your blood work done a lot and stuff...
Kara, 22F Married. 
Previously- Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Latest: Had first Remicade infusion on 07/30/09, next scheduled for 08/13/09. Doc. talking about lowering Lialda to 2 a day or off completely. Formed stools...usually 1 or 2 a day :D
Medications: Lialda 2 twice a day, Remicade, Protonix.
I am so sick of this disease!

Ashley O
Regular Member

Date Joined Jun 2008
Total Posts : 72
   Posted 8/3/2009 2:22 PM (GMT -6)   
Hello festeris101

I had left sided UC for about 4 years before it grew up into my entire colon. I was on Remicade for 3 years and was in a complete remission for about 2 1/2 of those years. I was feeling almost 100% better days after the first infusion and better and better after the rest of the start up doses. I highly recommend Remicade. It gave me my life back when I couldn't leave the house for a year and had to leave high school because high doses of Prednisone weren't enough. Unfortunately all good things come to an end and for me that was true of Remicade too. I built up the mouse antibodies and grew resistant to the medication slowly between 2 1/2 to 3 years of Remicade. My disease spread through the rest of my colon and I had to stop Remicade. My doctor says I probably grew resistant to Remicade after so short a time is because I'm younger. Older people have a better chance of being on Remicade longer before building up antibodies. But I suggest you try it anyway because even if it works for a little while, you get your life back. And there will always be something new to try down the road.

Good Luck!

Ashley O
Female, Age 20, DX w/Proctitis UC October 2005
DX w/Pancolitis June 2009
Currently close to Remission. WHOOOO!

Present Meds: Lialda 4 pills every morning and Canasa Suppositories nightly.

As Needed: Immodium, Clonazepam 1mg for anxiety

Past Meds: 40 mg Prednisone Daily 2005-2006, Miralax, Ginger Supplements, Remicade every 8 weeks Aug 2006-June 2009

Veteran Member

Date Joined Mar 2008
Total Posts : 1202
   Posted 8/3/2009 7:45 PM (GMT -6)   
Left sided only--and Remi is liquid gold for us. Nothing hard about the infusions compared to the disease in a flare. No more Pred-it was awful for my daughter. We are still on 6mp for now, and Colazal, but hope for a reduction in meds soon. Remission is wonderful.
Daughter,15 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Prevacid, Flagyl, Prednisone- 50mg to 0, 4 major flares '08.Hospital four x. Low residue diet,
6MP, Colazal , Cortifoam enemas,
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal

Regular Member

Date Joined Dec 2008
Total Posts : 115
   Posted 8/3/2009 8:19 PM (GMT -6)   
Thanks so much for all your input. I've been in a flare since July 4th and I'm getting desperate. I've begun the SCD diet about a week ago and because I can't get this flare under control, I think the diet may be further irritating my situation. I called my Doctor to see if I could up the pred just a little to get the flare down and of course he said to come in and begin the Remi.
I think I'm going to give the flare till this weekend to calm down if not, thanks to your feedback, I'll give the Remi a shot. In the past 7 years of Colitis I've lost:
My wife
My job
My residence
I miss my life... cry
600 mg. - Imuran daily
     5 mg. - Pred daily
   20 mg. - Prilosec daily
   35 mg. - Fosamx weekly

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