Crohn's Treatment that is not an immunosuppressant

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Brad P
Regular Member


Date Joined Feb 2010
Total Posts : 51
   Posted 3/1/2010 4:04 PM (GMT -7)   
Hi all

I am caught between a rock and a hard place. Since 2002 to fall 2008, I was on Imuran to help control my Crohn's. I may have had a flareup every 1-2 years that 30-35mg of Prednisone over a 6-7 week period would fix. Fall 2008 I was dx'ed with a large tumor, small bowel cancer. I stopped the Imuran immediately as there was always a slight risk it may contribute to getting some form of cancer, but for me it could never be proven.

So now, after 6 months of chemo from Dec 08 to May 09, recovery from chemo during the rest of 09, my Crohn's seems to be active in the duodenum area plus whatever else too such as bacteria and/or yeast that can not be confirmed. Antibiotics and Pred seemed to help over Christmas quite well actually, but since mid-January my condition has gradually decreased. I don't have any pain or cramps but constant heartburn in the throat, stomach discomfort / upset, decent appetite but could be better, days of low energy, and weight loss.

So having said all that, my GI suggested trying Imuran again to help get the Crohn's settled, even if its a small dosage for now. I was on the fence with this and talked to my oncologist who said any immunosuppressant drug has a risk in theory. But he said I have to weigh the risks of going on Imuran again against the quality of life I am experiencing now....hence the rock and hard place.

So my question is...is there a maintenance drug for Crohn's that is NOT an immunosuppressant??

Thanks
CD since Fall 1987
Small Bowel Cancer - Sept 2008
Surgery to remove tumor - Oct 1st, 2008
Chemo - Dec 2008 to May 2009
Jan 2010 - NED


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 3/1/2010 4:51 PM (GMT -7)   
Those same auto immune drugs seem to have done the same thing to me. I now have a ileostomy that has made life much better. I took some chinese medicine for the crohn's and it worked great but once I had the surgery, no more crohn's either so hope it stays that way.

good luck to you in your search.
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy


Valerie3
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Date Joined Feb 2009
Total Posts : 529
   Posted 3/1/2010 5:56 PM (GMT -7)   
The only drug I can think of are the 5-ASAs, but they don't work for most people. All of the others have some effect on your immune system, unless you decide to go the natural route. You're in a really difficult position, I can understand why you're torn. I don't know what I would do because you definitely don't want your cancer to relapse, but at the same time you don't want to have a terrible quality of life either. What about trying TPN then going on some sort of 5-ASA after?

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/1/2010 5:58 PM (GMT -7)   
what about LDN?
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_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…


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/1/2010 8:26 PM (GMT -7)   
Yes LDN and Dieting is really the only way that doesnt suppress the immune system..

If only someone was sure if we had OVER or under active immune systems.. immnuosuppressants would be ok. lol

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/1/2010 10:17 PM (GMT -7)   
I was also wondering what are you taking to control your heartburn?
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_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…


Brad P
Regular Member


Date Joined Feb 2010
Total Posts : 51
   Posted 3/2/2010 3:45 AM (GMT -7)   
I take Pantoloc for heartburn and Pentasa already. Have been taking both for years. Pentasa will do little for Crohn's in the duodenum.

I am also taking Glutamine and acidophilious. And Diflucan for possible yeast at the moment.

The LDN...I read about that before...I should note that to suggest to my GI in 2 weeks. Thanks!
CD since Fall 1987
Small Bowel Cancer - Sept 2008
Surgery to remove tumor - Oct 1st, 2008
Chemo - Dec 2008 to May 2009
Jan 2010 - NED


yankeespg23
Regular Member


Date Joined Dec 2007
Total Posts : 63
   Posted 3/2/2010 11:00 AM (GMT -7)   
You can ask about Asacol or 6MP. both 5 asa's
34 yr old Male from NYC, DX with Crohn's in oct of 1987
Resection in 1990
Remicade as of  Aug 6th. 2009
Entocort 3mg, 3 pills each morning.
 Cipro 2x a day.


Brad P
Regular Member


Date Joined Feb 2010
Total Posts : 51
   Posted 3/2/2010 12:06 PM (GMT -7)   
yankeespg23 said...
You can ask about Asacol or 6MP. both 5 asa's


Asacol is another possibility too I guess. I was on that many years ago, like 15+, and was switched to Pentasa. Asacol is an anti-inflammatory.

6MP is similar to Imuran as far as I know. From medicinenet.com

medicinenet.com said...
Azathioprine (Imuran) and 6-mercaptopurine (6-MP, Purinethol) are medications that weaken the body's immune system by reducing the population of a class of immune cells called lymphocytes. Azathioprine and 6-MP are related chemically.

CD since Fall 1987
Small Bowel Cancer - Sept 2008
Surgery to remove tumor - Oct 1st, 2008
Chemo - Dec 2008 to May 2009
Jan 2010 - NED


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 3/2/2010 2:21 PM (GMT -7)   
The anti-inflammatories (sulfasalazine, Pentasa, and Asacol) are the only generally accepted maintenance medications that are not immunosuppressive. As others have noted, they are not likely to do much for duodenal Crohn's. You mentioned that you did well with tube feeding as a boy. You could use an enteral nutrition formula as a maintenance medication also, taking 750 or 1000 calories or so per day alongside your regular diet. You do not have to use a tube; you could get one of the flavored versions so you could take it by mouth. If you or your parents remember what you used as a 12-year-old, you might be able to get the same formula (since you know it worked for you before).
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