Have you tried alternative therapy for AIH?
3
Yes, Omega3 - 60.0%
1
Yes, Milk Thistle - 20.0%
0
Yes, other - 0.0%
1
No - 20.0%

 
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mel1234
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 9/15/2009 8:14 PM (GMT -6)   
I am a new member to this awesome chat room. Let me begin by saying that I was diagnosed with AIH in 2001. I have been taking prednisone and Imuran
on and off since 2001 (mainly on). Over the past 8 years, my liver enzymes have flucuated between normal and elevated. (mainly elevated as high as 2.5 times normal).

My recent discovery which I would like to share and ask for your feedback is I began taking Omega3 and Milk Thistle about 6 months ago on the advice of a very good friend/MD. My primary physician was not enthusiastic about taking an alternative treatment. When I started the Omega3 and Milk Thistle, I decreased my prednisone to 10 mg a day and eliminated Imuran entirely. Today, I received my hepatic function panel results and EVERYTHING is within the normal range. Naturally, I am very excited about this and wonder if anyone else has experienced these positive results?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/15/2009 11:47 PM (GMT -6)   

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!



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 9/16/2009 3:34:13 PM (GMT-6)


Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 458
   Posted 9/16/2009 3:06 PM (GMT -6)   
 
 
I to have AIH and was diagosed in 06 had an 11 month remission after being on 20mg of Prednisone for 6months then had a relapse.  My liver enzymes were in the 900's and my Hep doctor feels is was drug induced from taking Lipator and an Levaquin.  I have been on Ogma 3 for many years and have also taken Milk Thistle will no lasting results hope you have better luck.  Currently fighting rising liver enzymes and am on 20mg of Prednisone for the last 4 weeks without to much success see the Hep Doc tomorrow.
 
Jerry1

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 818
   Posted 9/16/2009 4:08 PM (GMT -6)   
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,


Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg
 
 

Post Edited (DGinSD) : 9/16/2009 3:59:06 PM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/16/2009 4:34 PM (GMT -6)   
Dany, thanks for your post.  As a result, I have edited my initial one.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


mel1234
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 9/16/2009 9:27 PM (GMT -6)   
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.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/16/2009 10:35 PM (GMT -6)   
Jerry, I wanted to mention that there is a Class Action Suit being filed against the makers of Levaquin on behalf of those who have suffered liver problems as a result of taking it.  I saw it on TV (I'm in FL.)  I recently had to take Levaquin for 12 days for pneumonia I contracted in the hospital after surgery.  I certainly hope it hasn't done more damage to my liver, but I haven't had any liver panels done lately.  I have a feeling that it may be long-term use of Levaquin that may be responsible for any liver damage, and not that taken for a short period of time for infection.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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