how did you deside Remicade was not working for you ?

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Veteran Member

Date Joined Jan 2009
Total Posts : 829
   Posted 4/4/2009 9:45 PM (GMT -6)   
I have had 3 infusions of remicade now and i don't feel any different
But i am extreamly itchy all over my body and i am feeling pins and needles in my left arm with some loss of strength.

I was wondering if these where side effects and are they enough to take me off remicade ?

How many infusions did you get until you found a difference ?
And if you had any reactions how extreme did they have to bee so your doc took you off remicade?
And if Remicade did not work for you did Humira work better ?
24 year old female
Diagonsed with Crohns disease in December 2008..
Medication - Asacol, Remicade, Entocort

Regular Member

Date Joined Dec 2008
Total Posts : 57
   Posted 4/5/2009 6:35 AM (GMT -6)   
Good Morning, I am about to have my 4th infusion of Remicade tomorrow. The first time I tried, I saw what I thought was some relief for about 2 weeks. After that nothing. Between the Rhumi and the GI, because after 30 years of both Crohn's and Colitis, the symptoms have now attacked my spine, muscles, Thyroid, knees, etc., they have agreed to double the infusion from 5 to 10 grams or however it is measured. The GI did explain to me that Remicade needs to build up in your body and does not help quickly. I was on Humira and that did nothing for me. I also take 24 drops of Opium over the course of the day and Lialda 4 pills a day and Pameme. My GI is great and we have tried so many different meds but I am not yet ready to give up on the Remicade. I usually have 25 attacks a day and some days now I may only go 10-15 times a day. When I get the infusion I close my eyes and try to visualize it going through my body. I have had high hopes for it working because it did work for me a little in the beginning. I also am on a very strict diet. I eat no Gluten, wheat, no dairy, no fresh fruit and no fresh vegetables. I really stick to it because I know how painful it is if I don't. For 20 years I denied that I was sick so now I am paying a high price for my stupidity. I am willing to do anything to get to the point where I may have a somewhat "normal" life. So I will stick with the Remicade for a while and see if maybe it helps. My GI has told me that my intestines and colon are so damaged after so many years of Crohn's and Colitis that I will never be "normal" again but there is always hope. I hope that you find an answer and don't have to suffer so much.

Veteran Member

Date Joined May 2006
Total Posts : 1177
   Posted 4/5/2009 9:49 AM (GMT -6)   
Hi there. I am a little concerned about the pins and needles in your arm and loss of strength. Crohn's can cause vitamin deficiencies such as B-12 deficiency that can also cause peripheral neuropathy like what you're describing; however, there are also other things that can cause such symptoms. Remicade is known to sometimes cause peripheral and central nervous system disorders. Please see a neurologist, and get a head, neck and spine MRI to rule out remicade induced MS like syndrome. Once you rule that out, you can continue with remicade with some peace of mind.

Remicade can sometimes take a while to work, and sometimes, you may need to add another immune suppressant such as imuran or 6-mp to the mix to achieve remission. Talk to your doc and see if he thinks that will be a good idea for you.

I hope you get some relief soon.

Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, and in crohn's remission, knock on wood

Veteran Member

Date Joined Jan 2006
Total Posts : 768
   Posted 4/5/2009 1:51 PM (GMT -6)   
I took remicade for 2 months? something like that and never felt any different and then had problems like yours and then got these spots all over my legs and some on arms and got rushed to dermotalolagist? ( How do you spell that) and I was allergic to the medicine. I have not been good on any I have tried so far. Except preg. which I hate. Spots and other problems went away about 2-3 weeks after I quit the stuff. Most people have great results, guess I'm not most people.

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 4/5/2009 2:46 PM (GMT -6)   
Got lupus from it.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

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