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Crohn's Disease
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Posted 9/26/2008 2:03 PM (GMT 0)
Hi everyone.  My husband was diagnosed with crohn's 14 years ago.  He's tried a couple different drugs including prednisone, azathioprine, remicade, humira, bentyl, and a few more than I cant think of off the top of my head.  In 2005 he had a resection in which they removed 13 inches but his symptoms returned almost immediatly.  He has never been in remission, and so what I was wondering is if anyone has tried a new/different drug that has helped them.  Just some suggestions to bring to the doctor would help.  Thank you.
Posted 9/26/2008 2:05 PM (GMT 0)
Antibiotics?
Posted 9/26/2008 4:40 PM (GMT 0)
Mac221,
there are lots of new treatments on the horizon that may be worth looking into. Some off the top of my head are Tysabri and Cimza. Both which look promising. Hope this helps.
Posted 9/26/2008 6:51 PM (GMT 0)
I have used exclusive enteral nutrition (liquid diet) right now Peptamen 1.5, I have used Nutren 1.5/2.0 also. Exclusive EN got me into remission but for me some inflammation came back after I started eating again.

Currently I also use VSL#3, a very strong probiotic undergoing clinical trials, and Primadophilus reuteri, another probiotic.

Xifaxan, a non-absorbed antibiotic, shows promise and is in clinical trials right now. You might consider that drug, it is expensive but works well for some. That needs to be used in combination with a probiotic like VSL#3.

Other possibilities are Cimzia, Humira (both are similar to remicade in terms of mechanism), Tysabri, or the anti-MAP antibiotic cocktail.

Also possible is diet modification--SCD, Maker's, or just eliminating carbs/dairy/etc.

Could he possibly be considered for a clinical trial, epecially Prochymal (stem cells) if it is still recruiting?

Good luck.
Posted 9/26/2008 7:52 PM (GMT 0)
Thanks for the replies, I'll look those all up.  We already do a diet modification, no dairy, no red meat, not a lot of fats.  We're trying to look into some clinical trials, his doctor is at uf gainesville, fl, so that might be promising.  thanks again.
Posted 9/28/2008 7:52 PM (GMT 0)
If you are looking at the dietary route, please- please- read "Life Without Bread."

Restriction of dietary carbohydrates has been proven to put- and KEEP- Crohn's disease in remission better than 80% of the time in studies that go for three years and longer.
Posted 9/28/2008 7:59 PM (GMT 0)
There is a new clinical about to start - ABT-874. I am going to be doing this clinical. It sounds promising.....

I was recommended against Humira and Cimzia because they are TNF blockers. Essentially, what Remicade is. So, we're moving onto the clinical in hopes it helps.

What about Imuran? Seems to be helpful to a lot of people...
Posted 9/29/2008 1:26 PM (GMT 0)
Well I will definatly check out that book, thanks. I've looked at the specific carbohydrate diet, but thats just not practical because most of the stuff that's on the "good" list causes pain. And as for the imuran, he's on 250 mg a day, as well as bentyl prednisone and he takes prilosec. thanks for all the responses, they've given me somewhere to start looking for new ideas.
Posted 9/29/2008 5:54 PM (GMT 0)
There is a prochymal trial in phase III that's recruiting patients. From everything I've read, including some who have been on past trials here on this site, it seems to be very promising and quite safe. My son, age 9, is unfortunately too young to qualify. You must be 18. I would strongly encourage you to consider.

JSMOM
Posted 9/30/2008 12:57 AM (GMT 0)

I have been doing some reading on low-dose naltrexone.  It has few side effects unlike many Crohn's drugs and is not too expensive.  I read about it on this site.  Good Luck

Posted 9/30/2008 10:46 PM (GMT 0)
One other last-ditch thing to try: helminths (Necator americanus, the common hookworm). There's one clinic in Mexico that does it for some extortionate price; they're objectionable to many, but they will give few (if any) signs of their presence, and are harmless in the quantity that are applied. A very few individuals who may or may not be shills have opined that their condition has improved markedly.

If the $3000 bill dissuades you, then getting a job at a sewerage plant in the southeastern United States and flapping feet in the, er, Mississippi mud should do the trick in terms of inviting the parasite in- although you may get a much larger load than is generally desired.
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