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Remicade No Longer Working


Sat, June 11, 2011 11:15 AM

My son his 24 years old and has had Crohns since he was 12.  He cannot take any of the medications because they cause pancreatitis, but remicade has been working well until recently. 

He had an iliectomy in December, and is still on the remicade, but it is no longer working.  His doctor said there are no other options available because remicade is the most aggressive treatment.

I am heartbroken and dont know where else to turn to help my son.  Any ideas or suggestions would be greatly appreciated.

Thank you.

FPO melissa w
Joined Apr 20, 2011

Mon, June 13, 2011 9:09 AM

 Reply posted for Melissa W.

Find a new doctor.  Remicade is NOT the most current and most aggressive treatment.  A book published within the last year by a doctor affiliated with a hospital in MN is a great tool for access to what the current standard of information, treatments are and where things are going < ie what may become available in the next couple of years.  I highly reccomend this book as  a tool to be in control of your own ( or your childs) health with IBD

IBD Self-Management: The AGA Guide to Crohns Disease and Ulcerative Colitis by Sunanda Kane

Available at Amazon.com for 10.00 as an ebook, and my local library had a copy 3 months after it was published.

FPO katya
Joined Sep 15, 2010

Tue, May 24, 2011 7:39 PM

 Reply posted for Melissa W.

Hi,

I can totally understand your upset.  My son was diagnosed wth a very severe case of Ulcerative Colitis on his 21st birthday. He is now 27 and after 3 doctors and years of steroids and other drugs, the 3rd doctor started him on Remicade. Bob was in remission of 8 months when the drug stopped working and he immediately became VERY sick. The doctor tried double doses 3 times and non e of them helped. Bob had no choice left but to have his entire colon removed. This took place September of 2009. He had the Bag for a few months and then surgery #2 on January 2010 to build the J pouch. Then his third on March 12, 2010, to connect the new pouch and remove the bag.  He has been dealing with Cuffitis and very low red cell count. He just went in on 5/19 for a upper scope and lower flex sig.  NOW he has ulcers throughout his J pouch and a foot up into his small intestine, and on his esophagus. The doctor says it crohns. We are TOTALLY deflated and are now researching all over again.  Bobs life stopped at 21, had to drop out of college twice and was Just able to get through a semester this year. He agonizes about getting hs life on track, while he watches all his friends get married, have good jobs etc.  It is truly heartbreaking. There was a study going on testing Human Growth Hormone use with Methotrexate, and they got positive results in people with Crohns, but the Govt Shut it down..for some reason. I am looking into all of that as well. I find for me that as long as I am being proactive, I dont feel so very helpless. I wish your son and you all of the luck and best wishes possible. These kids all suffer so much.

If you want to you can email me @k32155@aol.com

Take care,

Karen

FPO mysonsmom
Joined Feb 13, 2009

Fri, May 20, 2011 1:12 PM

 Reply posted for Melissa W.

Melissa:

My daughter was on Remicade for 6 years with much success.  However, last year she tested positive for antibodies to Remicade and had to stop her infusions.  Since then, we have tried both Humira and Cimzia.  We were about to try Tysabri when our doctor suggested adding weekly Methotrexate injections to the Cimzia routine.  That was about 5 weeks ago and my daughter is doing very well for the first time since the Remicade failure.

Hang in there.  I hope you find something that works soon.

FPO ansleysmom
Joined May 20, 2011

Fri, April 22, 2011 6:37 AM

 Reply posted for Bucket.

He has been on so many different meds that we aren't sure about humira, but will check with his doctor.  The remicade has been a lifesaver for the past 10 years!  I wish you the very best for your son!

FPO melissa w
Joined Apr 20, 2011

Fri, April 22, 2011 6:35 AM

 Reply posted for alanschachter.

Thank you for the advice and feedback.  We will definitely check out the things you've recommended. My son's doctor also just told him about a stem cell study that they are doing on Crohn's patients - with excellent results.  It's been going on for 4 or 5 years but still in the testing phase.  He may be a candidate for it.

FPO melissa w
Joined Apr 20, 2011

Thu, April 21, 2011 7:33 PM

 Reply posted for Melissa W.

My son is 14, has had CD since 12 also, but has just started Remicade, so I don't have a lot of experience, but I thought when Remicade no longer works, he could then try Humira.  Has your son used that yet? 

FPO bucket
Joined Oct 12, 2009

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