Has anyone else been on Remicade?

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New Member

Date Joined Oct 2008
Total Posts : 11
   Posted 11/6/2008 10:02 AM (GMT -6)   
I was just wondering who else out there is/ or has been on Remicade?  I want to know how long it took before you were in remission if you even are, and how quickly the treatment worked for you?  I'm hoping whatever feed back I get from any of you will help me figure out if I need to be talking to my Dr. about different treatments along with the IV...your responses would be great.

Regular Member

Date Joined Jul 2008
Total Posts : 113
   Posted 11/6/2008 10:37 AM (GMT -6)   
i started remicade about a couple months ago when i was in the hospital. I had the first 2 loading doses and saw no improvement..which pissed me off cuz they say ur supposed to feel better a day or 2 after the first...not until the 3rd loading dose did i start to get better..and by better i mean no blood and actual real solid stools..of course i was on a liquid diet in the hospital for weeks and large amounts of prednisone so i dont know what helped me...i just had my first dose of it outside of being in the hospital last friday...leading up to that i was starting to have blood again and go more often...and its gotten worse now...i dont think it has worked for me..im having more blood now and going atleast 5 to 8 times a day...but its better than how it was before..im just worried its going to come to that again...if i were u try the first 3 loading doses, i was told by my doctor that ur not considered a failure on remicade until u have all 3 loading doses..see how that goes and if ur still not improving try something else..i think im gonna switch to humeria soon if i dont get any better...good luck tho!
21 year old female
Diagnosed with Crohn's August 2008 (hospitalized for over a month right after)
Taking...canasa, rowasa, 6mp, and Remicade every 6 weeks
As needed...zofran, lortab, tylenol 3, bentyl
Weaning off of Prednisone!

Regular Member

Date Joined Oct 2005
Total Posts : 129
   Posted 11/6/2008 10:52 AM (GMT -6)   

I've had an excellent experience with Remicade.  I think some people are hesitant to try it because going in for infusions can be inconvenient, but I'd walk through fire for this stuff.  My reaction was pretty immediate, I went into full remission within a few weeks and within 6 months was pregnant (don't worry that's not a side effect of the Remicade...but for me that was my goal. :) )

Some tips-

--I'm assuming you have health insurance, and that perhaps it's time for open enrollment for 2009.  Talk to your HR department about the insurance options available (if you have a choice of companies or even a choice of EPO vs PPO.)  The actual cost of Remicade is upwards of $6k per treatment (most people have treatments every 8 weeks) meaning that if the insurance company covers even a healthy 90% you will still have a lot to pay.  The most expensive offering may not even be the best coverage - with mine, the EPO pay structure is more beneficial than PPO for Remicade.  Take a close look at all of your options there.  And remember that whatever you will end up paying in the end - try to sign up for an FSA account so that at least that amount will be tax-free.  While you're asking, ask about Humira too - the costs may be lower since it's done at home versus in a hospital.

--If you move forward with Remicade and work a desk job, talk to your boss about getting a laptop and Internet card so you can work remotely - that way you won't have to use sick or vacation time during treatments and can still be productive.  Either way, try to schedule your first few treatments in the afternoon so you can go home and sleep afterward - some people get very tired following treatments (not me- I am energized and can go right to work after, but everyone is different.)

--Bring a snack and water to the hospital, as well as something to keep you entertained (or a pillow/blanket so you can sleep.)

--Have your significant other or a trusted friend read the side effects - don't read them yourself (I recommend this for any new drug you try.)  Studies show you're more likely to experience a side effect if you know about it.  If you don't know what they are, maybe you won't have them - but if you start to feel strangely in any way you can have that partner to tell you if this is just a normal side effect or if you should call your doctor.  I did this and have had no negative effects from the treatments.

--The day after your first treatment, schedule your next one.  My hospital gets booked up quickly and I always want to make sure it fits within my schedule.

Regular Member

Date Joined Feb 2004
Total Posts : 437
   Posted 11/6/2008 10:52 AM (GMT -6)   
i was on Remicade 5 years ago. I was on it for one year and was taken off from allergies to it. It put me into a 4 year drug/symptom free remission.

Regular Member

Date Joined Dec 2007
Total Posts : 131
   Posted 11/6/2008 11:26 AM (GMT -6)   
Just had my first Remicade infusion on Monday. So far, so good. I had the typical G.I. symptoms from my Crohn's, (weight loss, lots of trips to the bathroom, lots of bleeding, fistula, abcesses, etc.) as well as severe arthritis induced by the Crohn's. My joint pain is SOOO much improved just two days later, I have a voracious appetite, and I'm only having to use the restroom once or twice a day now. I swear the fistula I have is already healing too! Energy levels are way up.

The listed side effects are scary, and it kept me from trying this for almost 1.5 years. I could kick myself now for suffering so much. I sure hope I continue to do well with this stuff. I am literally excited to wake up the last couple of days (and I'm NOT a morning person! LOL!) I feel like a different person (like my old self.) I was dead-set against trying this for a long time. I guess I got to the point where I'd do anything, and now I'm glad I did try it. There were two other people in the infusion room getting their infusions when I went. They had both been on it for two years and had great results. The guy next to me even ran half marathons now!! Wow. I can't wait for Spring to get out and play golf again! I am so excited I could cry. yeah
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
Remicade (First Infusion 11/3/08) yeah

Regular Member

Date Joined Jul 2007
Total Posts : 137
   Posted 11/6/2008 11:48 AM (GMT -6)   
I started it fall of 2006 and did really good for about 9 months, was feeling great, the best ever since diagnosis.  Then the joint pain came back and got really horrible.  My doc said it was time to switch to humira because I had built up a resistance to the remicaide.  I have been on the humira ever since and really like it.  Other than some fatigue and a small red patch right after injection I have had no side effects.  And about a month after I made the switch my insurance company sent me a note that they would not cover remicaide any more and to try humira...go figure.  I like remicaide until my body rejected it.  Good luck and hope you do well!

Dx CD 2003 but probably had it 10 years prior

Dx Primary Sclerossing Cholangitis 2006

GB out '95, Appendix out '96, Kidney stent '02/stone removal '02, Resection '04, fistulectomy '06 2x, tubal '05

Currently on 100mg 6mp-50 mg,  and Remicade every 8 weeks, Ambien, predsnisone, humira 

Veteran Member

Date Joined Feb 2003
Total Posts : 1811
   Posted 11/6/2008 12:09 PM (GMT -6)   
I took my first dose in Jan 2001, within 24 hours I was a new person - I even ate an Arby's beef-n-cheddar that my hubby sneaked into the hospital for me. (So much for my "low-res" limited diet.) I stopped taking it in June of this year and I would say that it really stopped working for me around Nov of 2007, but it took me 9 months to figure it out. GI says I built up a resistance to it and so I switched to Humira. I can't imagine what my life would have been like without it. It helped me have 2 babies and kept me somewhat stable.

Regular Member

Date Joined Mar 2006
Total Posts : 494
   Posted 11/6/2008 4:53 PM (GMT -6)   
I had 3 infusions of Remicade. It didn't agree with me, I was getting serum sickness........and then it actually started causing severe pain in my breasts (I have saline implants) and started rejecting the implants. Had to go to a surgeon who advised me of this. I had to go off of it and the pain stopped months afterwards....
Diagnosed Crohns 1/06
CD of Terminal Ileum
Taking Pentasa. Adverse reactions to Remicade. Also take Forteo Injections, Actonel, Calcium and Vitamin D, B12 injections.

not creative
Regular Member

Date Joined Mar 2007
Total Posts : 466
   Posted 11/6/2008 5:24 PM (GMT -6)   
I’ve been on Remicade for about a month, I felt better about two days later. I’ve only had the first two loaders but I feel better than I have in a long time.
I have another infusion next week, I’m looking forward to it like an 7 year old on December 23rd!
Laurenne, 24 Graduate from University of California, Davis. BA-Anthropology
Dx'd w/ IBS and CD in 2002
On Remicade, Tetracycline, Zoloft, Lialda and Imodium

Regular Member

Date Joined Oct 2008
Total Posts : 27
   Posted 11/6/2008 5:36 PM (GMT -6)   
I just took my 2nd dose of remicade last friday......this stuff has seriously saved my life, within a day or two of the first dose i started feeling better, my digestive system began to regulate, no more blood, no more stomach pains, bowel movements became more and more formed and less frequent...now 3 weeks later, I've gained 25 pounds, i'm at 145, was at 120....putting on weight just as fast as it was coming off before...its crazy...now i can eat whatever i want, and i've been testing out alot of my former trouble foods, almost being reckless....and nothing negative has happened.......i'm on other drugs too..but i'm pretty sure its the remicade that has turned my crohn's around and put my into remission....
hope it helps you and everyone else that decides to try it.....good luck!
29 years old, crohn's since december 07, fresh out of the hospital for 2 fistula/abscess surgeries, feeling much better, could it be remission???
currently taking:
asacol, prednisone, purinethol, vicodin, remicade
acidophilus/bifudus probiotic, organic whole food multi-vitamins
"Flow with whatever may happen and let your mind be free. Stay centered by accepting whatever you are doing" -Chuang Tzu

Regular Member

Date Joined Jan 2006
Total Posts : 449
   Posted 11/6/2008 9:24 PM (GMT -6)   
I was on it for 2.5 years. GREAT drug! Put me into remission from a SEVERE flare after the 3rd loading dose (week 0, week 2, week 6, then every 8 weeks thereafter). After the 2nd dose, I felt a tad better, but was weaning off of steroids. By the 3rd dose, I was down to a low dose of steroids and beginning to feel better.

I built up immunity to the drug, unfortunately, but those 2.5 years on it were remarkable! GL! Hope it works for you!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old

Regular Member

Date Joined Oct 2008
Total Posts : 33
   Posted 11/7/2008 12:16 AM (GMT -6)   
Remicade and Methotrexate have been great drugs for me. I was down to 94 pounds and suffering from a severe flare of the Crohn's and my Ankylosing Spondylitis was crippling me; now, nearly 18 months later I am at 147 pounds and haven't used my canes in 18 months! I've read on here about others who have had adverse reactions to Remicade, but for me it saved my life. Going from being in a flare of the Crohn's and AS for two years to being in such a strong remission is amazing. After nearly 20 years of being so sick I thought I would be better off dead, life for me has begun again! Good luck to you, and I hope you find a treatment plan that works for you.

Veteran Member

Date Joined Oct 2004
Total Posts : 3042
   Posted 11/7/2008 5:31 AM (GMT -6)   
Hi i am on Remicade for 5 years and I am doing real good with it.
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.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis

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