How long can oen stay on remicade

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nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 9/4/2007 8:31 PM (GMT -7)   
I have a second opinion doctor appt this Thursday and am taking pentasa and entocort since last Tuesday as I am newly diagnosed with terminal ileum crohns.  I keep hearing great things about the remicade but wondering how long can one stay on this drug without building antibodies since it is also made of mouse protein?  Is it just for active inflammation and then you go off of it.  I can't find this info anywhere.  My stomach is hurting so bad and I want a solution to this nightmare.  I understand it is life long but right now I would love some relief!!  Wondering if remicade is the answer.
 
Thanks!!

onebloodonelife
Veteran Member


Date Joined Feb 2006
Total Posts : 842
   Posted 9/4/2007 9:10 PM (GMT -7)   
First, welcome! Sorry you have to be here, but I'm glad you found us.

You're still really new to the medications, so unfortunately, you're probably going to have to wait it out to see if Pentasa puts you into remission or not. Usually, but not always, Remicade is saved for patients who haven't responded to Pentasa, or Asacol, a similar drug, or immunosuppressants, like Imuran or 6MP. For example, when I started Remicade, I was on 60mg of Prednisone and 150mg of Imuran, still having very active disease in my terminal ileum, bleeding with bowel movements, etc.

You can stay on Remicade as long as it works. I got about a year out of it, but many people stay on it much longer than that. I ended up having a delayed reaction after my GI increased my dose from 5mg/kg to 10mg/kg every 6 weeks.

Remicade does help put people with active inflammation into remission, but then, it is a maintenance drug, and you continue to have infusions every 8 weeks or so to prevent another flare. Because of the serious side effects and the long term nature of starting Remicade, you really need to be sure you want to go on it, and discuss it extensively with your doctor.
Crohn's Disease for a year and counting
Imuran: 150mg
Remicade: Every 6 weeks 10mg/kg, next infusion: July 26th
Dicyclomine and hyoscamine for intestinal cramping and spasms
www.myspace.com/onebloodonelife
http://studentwebs.winona.edu/catraun4902 <--This link will be changing, but for now it works!


JohnD
Regular Member


Date Joined Aug 2004
Total Posts : 472
   Posted 9/4/2007 9:11 PM (GMT -7)   
I've been on it for a little over 3 years now. I don't know if there is a max amount of time a person can be on it.
39, Married
Had problems (pain, bleeding, nausea) since age 13.


Dx'd with Crohn's in Spring of 1991.

Resection that December

Broke the L1(mid back) in 1999

went on Remicade in early 2004.

Pain Doc believes the LLQ pain are pinched nerves

Electrical spinal cord stimulator implant july 3, 17, Aug 27
on the third try now.. :( ..


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 6839
   Posted 9/4/2007 10:43 PM (GMT -7)   
There are several people at my infusion center that have been receiving infusions for over 5 years. Myself, I went 2 years and 10 months before my GI and rheumy decided I needed to switch to something else. It served me well during that time and my gut still remains in remission. The Remicade is no longer controlling my joint problems which are more severe than my gut problems.

I must respectfully disagree with oneblood. Whether a newly diagnosed patient starts out on Remicade or tries other more conventional medications first is more likely based on two things: 1) Disease severity and 2) whether the doctor approaches Crohn's treatment from the step-down theory or the step-up theory.

There is much discussion among the GI community about whether "hitting" the newly diagnosed with a drug like Remicade brings about faster remission, reduces disease progression, and reduces patient suffering. Many GIs think it does and many of the studies back that theory. Other GIs are more cautious and believe in giving the more conventional, widely used drugs a chance to bring about improvement in the patient's condition.

I hope you get the information you seek at your second opinion visit and please let us know what happens.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 9/5/2007 4:20 AM (GMT -7)   
Hi, I have been on Remicade for over 2 years and will be on Remicade for life.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


onebloodonelife
Veteran Member


Date Joined Feb 2006
Total Posts : 842
   Posted 9/5/2007 6:16 AM (GMT -7)   
Yes, Ides is correct about the top down theory. I have only personally seen GIs who believe in the bottom up theory, so I don't have experience with the other. Also, as Ides said, it does depend on disease severity. Has your GI mentioned what he/she classifies your disease as? Have you noticed any change since starting Pentasa and Entocort?

Good luck at your second opinion appointment!
Crohn's Disease for a year and counting
Imuran: 150mg
Remicade: Had a delayed reaction, waiting for Humira approval
Dicyclomine and hyoscamine for intestinal cramping and spasms
www.myspace.com/onebloodonelife
http://studentwebs.winona.edu/catraun4902 <--This link will be changing, but for now it works!


sukay
Veteran Member


Date Joined Feb 2003
Total Posts : 1421
   Posted 9/5/2007 6:38 AM (GMT -7)   

I have been receiving Remicade every 8 weeks for about 7 years now. I was steriod dependant. It has helped out so much with my arthritis (due to long term steriod use) and my Crohns symptoms are very manageable. I do flare from time to time but overall Remicade has been a HUGE help for me.

Good Luck and let us know what you and your doctor decide on which treatment is best for you at this time.


~Sukay~
 
Crohns Disease-Remicade since 1999, Methotrexate
Fibromyalgia & Arthritis
Bipolar & Panic/Anxiety-Trileptal, Xanax, Trazadone, Wellbutrin


mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 9/5/2007 10:33 AM (GMT -7)   
Over 5 years now, and no signs of letting up. I did get an increase in dosage about 2 years ago, I'm up to 1000mg every 8 weeks. No side effects, no reactions, just lots of symptom free living.

I'm going to stay on it as long as it works.

If for some reason it doesn't work for you, don't despair, there is always Humira, which does not have the mouse protein and from the last symposium I went to, there are a number of new versions of these drugs coming out in the very near future.

Hang in there.
Matthew McKenna,

"I'm just along for the ride."

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