Remicade - PLEASE help me decide if I should go on it!!

Should I start taking Remicade instead of Lialda?
Yes, Remicade has worked for me - 92.3%
Maybe wait and see with the Lialda - 7.7%
No, Remicade did not work for me - 0.0%

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Regular Member

Date Joined Oct 2007
Total Posts : 390
   Posted 4/21/2008 5:32 PM (GMT -7)   
So i am currently in a flare, taking Lialda for about a week, it might be working a little bit on some symptoms but I am developing others:
currently have:
the big D with blood and mucus (sorry sorry sorry if TMI)
fissure & skintag
the Lialda seems to be helping with the frequency of when I have to go and I do have less gas it seems.  However, I have developed:
2 erythema nodosum (the big red, hot-to-the-touch welt-looking bumps on the shins)
a crop of red pimple-looking bumps across my chest (last time I got sick they were on my lower back)
I still have a low grade fever and have no energy.  So the big question:
Should I wait to see if the Lialda works better or
Should I start taking the Remicade?
Please, any experiences with Remicade would be so greatly appreciated.  I am afraid to start taking it but don't want to be sick any more if I can do something to help it.  I was on 6mp for the past year (while weaning off prednisone) and my neww dr realized 6mp does NOT work for me, it was the preed that was keeping the flares away.
Please help!!  Any advice!!
32 yr old female
Crohn's colitis
currently Lialda, 6mp (not much longer), multivitamin, calcium, percocet for the fissure pain, folic acid

New Member

Date Joined Apr 2008
Total Posts : 19
   Posted 4/21/2008 5:47 PM (GMT -7)   
I and my doctors have been fighting to get me back on remicade for nearly six months now. The only reason I went off it is because of health insurance bureaucracy. (I'm prior military who received treatments while on active-duty. Thanks to the CD diagnosis, I was retired and I've spent the last six months dealing with veterans insurance trying to get back to where I was treatment-wise...)

It worked great for me and I did not have any apparent side-effects. FYI, I've never particularly suffered from the abdominal pains, but the arthritis was completely tearing me up until the Remi. After I went off the Remi? Arthritis came right back...

Scott Mumble-Mumble, SSgt, USAF (med ret)
DX April 2007, Suffered symptoms for many years longer
Taking Asacol (2400mg), 6MP (75mg), Flagyl (750mg), Cipro (1000mg), Relafen (1000mg) daily. about to restart Remicade or Humira depending whether or not I've developed antibodies to Remi.

Money isn't the root of all evil, Prednisone is the root of all evil...

Veteran Member

Date Joined Oct 2004
Total Posts : 3042
   Posted 4/22/2008 6:03 AM (GMT -7)   
Hi I have been on Remicade for almost 5 years now. I have no-side effects from the drug. I also enjoy being in remission.
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

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 4/22/2008 6:09 AM (GMT -7)   
I have had tose EN bumps, and they aren't going to go away unless you get your gut under control. I then developed a fistula, and a huge rectal abscess. I started remicade 3 1/2 years ago, and life has never been better!

Regular Member

Date Joined Jul 2007
Total Posts : 456
   Posted 4/22/2008 6:29 AM (GMT -7)   
In understand your concern.  I didn't want to start Remicade at first, either.  But it has been a huge help to me.  I'm not back at pre-Crohn's normal, but I'm able to work a 40 hour week without collapsing, the d is under control, and I've even started to work out a little bit again.  I'm so glad I finally decided to try it.

Regular Member

Date Joined Jun 2006
Total Posts : 289
   Posted 4/22/2008 9:01 AM (GMT -7)   
I had relief from my CD symptoms beginning the day after my first infusion. I've been on Remicade now for 1 year, and I think that it has helped immensely. I'd give it a try if other options are not helping you.
Current Medications:

Pentssa, 1000 mg qid
Vitamin B Complex
Trader Joe's Probiotic
Folic Acid
Remicade infusion; every 8 weeks
Ambien, PRN
Seasilver Whole Food Liquid Nutrition

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 4/22/2008 9:03 AM (GMT -7)   
Remicade gave me my life back for 2 years with no ill side effects. I would say go for it! Good luck!
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl

New Member

Date Joined May 2006
Total Posts : 4
   Posted 4/22/2008 1:55 PM (GMT -7)   
I was diagnosed with Crohn's disease about 5-years ago. While in the hospital, my doc put me on all Crohn's medications, including Remicade. Within a relatively short period of time, I started feeling better. I think that Remicade had a lot to do with me getting better, along with a lot of prayers. I still have days that I don't feel great and my stomach is tore up, but I'm really doing fairly well. I now get Remicade every 8-weeks. I have tried to extend the interval, just to see if I still need to be on it and some of my old (bad) symptoms started to come back. The long term side effects do concern me and I have discussed them with my doc, but Remicade has significantly improved my quality of life and it beats the alternative right now.

As odd as it sounds, I don't mind going for my Remicade infusions. I find it therapeutic to talk to other patients who are going through the same thing that I've been through. Since I've been on Remicade for 5-years and am doing fairly well, I can share my story with others and give them some hope, especially those who've tried everything and nothing has worked.

Good luck!

I'm currently only on Remicade (previously on Asacol and Prednisone).

Regular Member

Date Joined Oct 2007
Total Posts : 390
   Posted 4/22/2008 3:27 PM (GMT -7)   

Thank you so much to everyone for your advice and input!  I talked to my dr today and am going to do it - I have been on Lialda for 2 weeks and thought I was getting a little better but I am not really.  I have also developed the big red welts on my shins (erythema nodosum?) and still have a low grade fever along with the D and the fissure.  Gosh, it's like a party for evil symptoms! :)

I am going to start the Remicade and feel better about it after listening to everyone's stories, so again THANK YOU.  I was hesitant but am going to give it a shot.  Up until this point nothing but Prednisone has worked for me.

Veteran Member

Date Joined Feb 2007
Total Posts : 734
   Posted 4/22/2008 7:00 PM (GMT -7)   
Remicade made my life so much better for 3 years. It finally quit working and I just switched to Humira, which seems to work quicker, is cheaper and easier to give. So best of luck with Remicade. Take care of yourself. You are in control of your choices!

Regular Member

Date Joined Nov 2007
Total Posts : 99
   Posted 4/23/2008 7:50 AM (GMT -7)   

Hi All!  Can those of you who have seen the positive results of being on Remicade please encourage my hubby and long did it take for you to start feeling better?  Just on average, since I know everyone is different.  I know that life will never be the same "normal" as it was before, but I hear people talk about how Remicade gave them back some kind of life, and I want that so badly for hubby!

He has had 2 infusions so far, and due for his next on 4/29.  He is very discouraged because to him it feels like he is feeling worse than before.  He also takes pentassa, percoset, and an antibiotic (he has a fistula).






Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!

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