Yes's - 36.4%
No's - 9.1%
Whys - 0.0%
Why nots - 0.0%
Did great for me? - 45.5%
Was a nightmare for me? - 9.1%

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Apr 2008
Total Posts : 8
   Posted 4/7/2008 1:53 AM (GMT -6)   
Hi all.I have had Chrons for over 37 years.I had the majority,all but 1 c.m., of my large intestine removed at age 20.I am now 52.After my surgery I was blessed with years of remmision & minor flares. As we all know Chrons never goes away.Well its back with a vengenance.I have tried Immuran and had an alergic recation.I then was put on Entecort and gained weight back and have been feeling great.I went for a flex sigmoid last wed and the doc says the chrons is very aggresive.Thing is I still feel great.He put me back on prednizone,and cortisone enemas.I go back to see him Thursday.We have had many discussions about Remicade and I know he will suggest it again.I have heard of many bad experiences with Remicade.I know this is a last resort treatment for Chrons.Has any one else had these thoughts and or discussions? Am I being pairanoid for no good reason? My bigest concern is I feel great and have none of the usual flare up effects.Well thanks for your ear, and replies are appreciated.
Rememeber Paulines words...Living ith cronic illness builds courage!!!

Have a good one!! I do.

Regular Member

Date Joined Apr 2003
Total Posts : 34
   Posted 4/7/2008 5:46 AM (GMT -6)   

I had remicade a few years ago, and it worked really well for me. It's effectiveness did decrease after the first couple of months, but it gave me a boost at the time, and i've only needed the usual meds since then. I didn't have any bad effects from it.

Also, on the symptoms front - i've also thought i was doing pretty well at one point, only to be told that the crohn's was bad... i have a feeling the prednisone gave me the effect of feeling better, without decreasing the flare as much as was necessary.

Hope that helps.

Veteran Member

Date Joined Oct 2004
Total Posts : 3042
   Posted 4/7/2008 6:34 AM (GMT -6)   
Hi, I am on Remicade its been almost 5 years. I have no-side effects from the drug. The Remicade has kept me from having a second surgery.
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

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 4/7/2008 6:38 AM (GMT -6)   
Hello Twitty,

Welcome to the Forum! This is a great place to learn about people's experiences with various treatments. Many people here are currenlt on or have tried Remicade and the similar drug, Humira. I suggest you search previous posts because there are always discussions about Remi going around.

Let us know what you decide!

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 4/7/2008 8:26 AM (GMT -6)   
I have been on remicade for almost 4 years. No side effects! It has given me my life back!

I certainly don't consider it a last is the last resort for me.

Veteran Member

Date Joined Feb 2007
Total Posts : 734
   Posted 4/7/2008 9:19 AM (GMT -6)   
I just went off Remicade after about 4 years. It worked great for me until the end and I became very sick. Just started Humira on the weekend. For me it was a blessing and easy choice.

Veteran Member

Date Joined Feb 2004
Total Posts : 730
   Posted 4/7/2008 12:10 PM (GMT -6)   

Twitty ;

you sound just like me ! So similar - dx over 25 years ago 51

I also had a ft of sml intestines removed - a few flare ups over the years but mostly remission -

however, when I did flare a few years ago it hit like a brick ; with no warning - as I think back over my past I realize that most of my flares were like that for the most part except for early on -

I had been on Remicade after my last flare ( in 2004 ) but went off after a year ; as well as quit the asacol ( which made me hurt more ) I felt better with no meds during this time then I did w/meds...

Had my 2 year colonosocopy a few weeks ago which showed active disease and 2 fistuals - so now I am having to go back on the cade - Like you , I feel really good - it is very hard to have to go on such "big guns" as my gi calls it when I dont feel sick -

BUT - if you are like me , the disease seems to hide, staying quiet until it attacks with all its weapons ! Then as most on here will attest to as well as the docs - it is a REALLY good idea to get going on the meds -

I don't regret stopping them , because during the time I was on it all - honestly I felt worse then I have for the last 2 years -For 2 years I have felt really good ! However, maybe I could have avoided the fistuals coming back ( ?? ) who knows? They can still come back if the meds stop working right ?

I am loving my doc right now ( we have had some not so good times : ) , but he knows me now ...and even though he wanted me on the prednisone he knows how much I hate it, he is willing to wait for me to start the cade !

Keep in touch and let me know how you are doing and what you decide - also what are your symptoms like when they do happen ??




Dx with Crohns 23 years ago
1 surgery ; 15 years ago ... 
Cervical DDD and restless leg syndrome
Currently on ;  Requip ,  Diovan ( for high bp )

Aimee =)
Veteran Member

Date Joined Jun 2004
Total Posts : 1020
   Posted 4/7/2008 2:54 PM (GMT -6)   
I was on Remicade for 2.5 years - it was great for me and gave me my life back.

I did build antibodies to it after that and started to have reactions. They pulled me off it and I moved to Humira, which has also been great.

It's done under a doctor and nurses' care in case of reaction, and you can get premeds prior (I didn't until I started to react)

Regular Member

Date Joined Jan 2006
Total Posts : 135
   Posted 4/7/2008 4:43 PM (GMT -6)   

I have been on Remicade now for about 17months.  So far so GOOD.  but, i have no large intestine.  everybody experience is different. yeah   



U.C.  diagonesed in 95

Large intestine removed in 02

Remicade in Nov 05


Forum Moderator

Date Joined Nov 2003
Total Posts : 7056
   Posted 4/7/2008 6:08 PM (GMT -6)   
I took Remicade for almost 3 years. It put my gut into remission. No side effects from the infusions. I eventually had to stop taking it because I built antibodies to the protein in the med.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?

New Member

Date Joined Apr 2008
Total Posts : 8
   Posted 4/8/2008 1:02 AM (GMT -6)   
Hi all.Thanks for all the great responses they are well taken.My symptons,when I flare,are dieahera,loss of weight,fistulas,and loss of appetite.I have not had any for well over a year now.The last one was the fistulas.Doc had me on entecort and I was loving it till the flex sigmoid last week.I go to see him Thursday and will let you know what he has to say.
Sounds like the remicade is a mixed bag.I know its "the big gun" and I have a problem pulling it out of the holster at this time nono   I also have heard once you go off it there is no going back on it.I also know as it runs its course it looses its bang because we become resistent.Seems like a something I should not do at this point O well we will see what the doc says Thursday and hope for the best.I will keep you posted. Till then I wish you all remission.
Is there any way to reply to certain peoples questions or do I just do it in my reply?
Thanks for all your help.....Jimmy
Remember...Living with cronic illness builds couarge!!!!!

Have a good one!! I do.

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, October 28, 2016 5:24 AM (GMT -6)
There are a total of 2,713,293 posts in 299,178 threads.
View Active Threads

Who's Online
This forum has 153758 registered members. Please welcome our newest member, MJ0404.
198 Guest(s), 4 Registered Member(s) are currently online.  Details
Rspwed, Easy Ace, island time, ks1905

Follow on Facebook  Follow on Twitter  Follow on Pinterest

©1996-2016 LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer