Was listening to a radio show about a drug, LDN, LOw Dose Naltrexone. It;s said to have excellent results with a variety of autoimmune diseases, including Crohns and UC. Here are a few links to info and studies.
http://skipspharmacy.com/ldn.php - Skip was the guy interviewed. http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone
http://www.lowdosenaltrexone.org/ldn_and_ai.htm
http://www.lowdosenaltrexone.org/ldn_trials.htm
http://ldn.proboards3.com/index.cgi

I can only conclude that it would work equally well for pouchitis. Side effects are said to be minimal, other that sleep problems the first week.
Anyone tried this? Anyone willing to give it a try?

I know Dave has tried it with favorable results, right Dave? Is it still working for you?
http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/7601...301020102#4301020102

I use LDN but not for anything related to my J-Pouch or IBD. I started using it in June for Ankylosing Spondylitis. It has nearly cut the pain in half for that problem, but doesn't address the progression of the disease. The information presented for the use, and success, of LDN for Crohn's is encouraging. It is supposedly also helpful for MS symptoms for many individuals. I too would be interested to find out the benefits, if any, of LDN for pouchitis.

I have to wonder about PSC ...though large doses of naltrexone can be hard on the liver...PSC is also autoimmune, right? Wonder if LDN would be worth a try, Jan??? Thoughts?And anyone elses thoughts as well, but I have to admit, Jan ,you sure have a knack for thinking things through .
LoriP

If your pouchitis is IBD related, I suppose it is possible that the LDN might be effective for that. I could not find anything specifically about it. Also, for PSC, I could only find references of using it to treat the pruitis (itching) associated with PSC, but it is contraindicated if you take narcotics.

To be perfectly honest, I really don't understand the mechanism by which this drug seems to work in these illnesses.

Jan

I had some experience of Low dose Naltrexone during my sons treatment for lymphoma and fungal systemic infection. I wasnt able to obtain it on prescription here so had to divide the 50mg pills into smaller doses.This was a very fiddly and probabaly inaccurate process.
The drug works as an opiod antagonist and when given in small doses it blocks the receptors temporarily for 2 hours or so after which time the body starts releasing larger amount of endorphins then normal which they refer to as acascade.They assert that there is 2-3 fold increase in the blood circulation beta endorpins which normalise the immune response.
I cannot comment on its efficacy relating to the IBS or UC . My son s cancer is gone though but of course he had a whole bunch of treatments and this was just part of an overall programme.

I have very recently been doing some research on LDN. Given it's momentum as a treatment for a whole bunch of auto-immune diseases, I am actually very surprised that my search through these j-pouch archives has unearthed only one person - Dave - who has claimed any experience with it for pouchitis.

I am very serious about giving it a try; it seems harmless enough, after all, and I don't have to stop my antibiotics to see if it helps. Once I find a doctor who is willing to prescribe it for me, I'll update this forum on my progress.

Thata the thing Paul..I could never find a doctor in the UK at least that would prescribe it. I know dr Bihari will do prescriptions by post but they cost quite a bit.Do let us know if you are sucsesfull in finding one. They are like gold dust.

Well, I'm afraid to say my first experience with low dose naltrexone was a bust. I took one pill of 4.5 mg before bed, and then woke up a few hours later with a violent reaction of diarrhea and nausea that lasted several hours. I spoke to the pharmacist the next day about this reaction. He said I could try starting at 1.5 mg and working up to 4.5 mg in steps. Still, I'm hesitant to put that stuff into me in any dose, after this experience.

I was always under an impression you need 3mg tops. The effect is lost if you take higher dose.Its meant to block the opiate receptors for 2 hours only and it should eb taken before 12 midnight to synchronise with cardicam rythm.
Your pharmacist may be correct . Or you may just be intolerant to this drug. The 4.5 dose was probabaly too high.How did you measure the correct dosage anyways?

The dr. at Penn State who did the first reported study on the effect on Crohns is looking for research volunteers. http://www.hmc.psu.edu/colorectal/research/naltrexone.htm
Might be a great opportunity for anyone with Crohns. As far as dosage I believe they grind the 50 mg dose into 4.5 mg doses. For MS I thing they are only supposed to take 3 mg, so I guess they are able to control the amount they grind.
I just had my jpouch redo and now Dr. Fazio says he believes I developed Crohns. Unbelievable after all this hell. So now I'm more interested than ever in any experience with this.
on another note - 1 week out of takedown surgery and my bowels are not cooperating. Really scared for the future.