AIH

Mel, welcome to the forum!   I know some liver patients have benefited from taking milk thistle.  While everyone seems to be touting Omega 3s these days, I don't know how safe they are for someone with liver disease.   I do not have AIH (have hep C and cirrhosis), but we do have some members here with AIH who hopefully will post a response to you.  All supplements, vitamins, etc., should be cleared through your hepatologist prior to taking them, as they might be contraindicated in your particular case.

Again, welcome!

Hi Mel1234,

I would err on the side of caution when dealing with a potentially life threatening illness. I, too, have AIH. There are no long-term stats on alternative therapies for AIH. The one truth is that if left untreated, death occurs within 10 yrs. I'm not sure what your rationale was to drop Imuran and remain on 10mg of pred....pred alone will keep your LFT's within normal range, especially if they were in the normal range when you got to the 10mg. Luckily, dropping the Imuran didn't cause a flare but it isn't to say that once you wean off the pred without the Imuran as a back-up (steroid-sparing medication) that you don't flare then (and I truly hope this works for you and you don't). The other issue is that the long-term effects of prednisone are far worse for you than the long-term (possible) side effects of the Imuran.

All of your treatment decisions should be addressed with your hepatologist (better to see a hepatologist than a GI doc). You can confer with this MD friend, your primary and your hepatologist as all of the people responsible for your care should be on the same page. Is this MD friend of yours well-versed in autoimmune disorders, specifically AIH? I understand that many folks who don't have a liver disorder take supplements to try to avoid liver issues and be healthier....however, once a liver disorder strikes, all those options are off the table. Your long-term health is of primary concern and I would worry about leaving it up to things that have no clear long-term data in a diseased person as opposed to in a healthy one.

Those are my 2 cents, for what it's worth,

Jerry 1
I too used a cholesterol reducing drug...Lopid back in the very early nineties. It was the precursor for Lipitor.

My suspicion is that taking Lopid for a very short time is the reason for my AIH. Unfortunately, I cannot prove it.

For more than 6 or 8 years after taking the Lopid my health deteriorated rapidly. I developed sinus problems only to be treated with antibiotics.
And as we all know, someone with AIH. Antibiotics is not their friend. Some might even say that it may also be a contributor to AIH. But that's for research to decide.

In addition to chronic sinusitis I developed a very advanced case of arthritis throughout my body. There were times it was almost impossible for me to get out of bed.

Then in 2001 I went to a University Medical School physician where I was diagnosed with AIH. My doc started me out on 40 mg of Prednisone and 500 mg of Imuran ( don't quote me on the Imuran qty). Within a year, the doctor had gradually reduced my dosage to only Imuran. Unfortunately, within a couple of months after being off the Prednisone I incurred another sinus infection. Which was again treated with antibiotics. So up went the AST and ALT and back on the Prednisone I go.

This has been very much my health pattern for the last eight or nine years...off Prednisone for a couple of months then having to be treated for a some sort of infection...sinus... insect bites, you name it. Then back on Prednisone for another round.

With a lot of blood work monitoring I am hoping to find the water level for my Prednisone dosage. Coupled with a small amount of Imuran, a high dose of Omega 3 and Milk Thistle.

I believe going totally off Prednisone is not in my future.

But I will say my quality of life has improved substantially over these past few years. Taking the Omega3, Milk Thistle and the low dose of Predisone has totally eliminated my joint problems and keeping my Hepatic Function Panel numbers in range...life is good right now.