New member w/ AIH

[Guest guest]

Hello all,

I'm here to do some digging around to find out what others with AIH are doing

for themselves. I am thinking that LDN could be helpful but want to know how

others do with it. Here's a short recap of my story...

In 1999, I was diagnosed with ulcerative colitis at the age of 19. Was in and

out of the hospital for a few years (with lots of drugs tried - 6MP, Pentasa,

Prednisone, Cyclosporine) , then had a remission kind of for a few years only

staying on Pentasa. Had a flare + hospitalization in 2007, then a flare in 2008

where I developed a fistula. At this time, the drs changed my diagnosis to

Crohn's (since fistulas are more common with Crohn's than with UC). I went on

Remicade and TPN for a few months to give the fistula a chance to heal. Then I

developed autoimmune hepatitis (but they can't rule out drug-induced AIH). I had

AST/ALT in the 500 range and they confirmed diagnosis w/ a biopsy. I started

with Prednisone 30 mg/day in Nov 2009, and have tapered slowly to 3 mg/day as my

LFTs stay in the normal range. However, over the last 1.5 months my AST and ALT

numbers have been creeping up to twice the upper limit. The hepatologist has

bumped me to 5 mg/day but the numbers have continued upward. Last week they

showed:

Alkaline phosphatase = 45 (range 33-115)

AST = 71 (range 10-30)

ALT = 93 (range 6-40)

I've read a lot about LDN and I know that it would be helpful for my

indeterminate UC/Crohn's. I also started the Specific Carbohydrate Diet on

1/7/10 which is also good. My end goal is to get off the Remicade because of the

horrible side effects and what its probably doing to my liver.

My problem NOW though is the Autoimmune Hepatitis. I feel that I cannot do the

Prednisone any longer, with the crazy side effects and my steroid-induced

osteopenia. I know they will try to increase me to a high dose again, and it

took me more than a year to get as low as I am now. He is also suggesting a

second liver biopsy to see if the disease is progressing, and CellCept if the

Prednisone no longer works. I've tried 6MP in the past for the UC but it was

toxic to my liver. Also tried azathioprine but it spiked my LFTs. I don't want

to be on anymore of these scary drugs!

Has anyone used LDN for AIH? How did you do with it?

Does anyone have any words of wisdom they can impart? Any ideas I can try?

Thanks for any help you can provide!

Caroline