Alternative treatment?: As I got the... - PBC Foundation

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Alternative treatment?

MeWithPBC profile image
8 Replies

As I got the diagnosis PBC in September'12 and on a treatment of Ursofalk. After 6 months some new bloodtests indicated that was'nt sufficient, so now I have to take fenofibrate as well.

Since the itching comes and goes (I have Questran for that), and I feel very confused and I am obviously very unhappy about it, my father now suggested me to go to for an alternative treatment... I'm a bit doubtful about that, so I wonder if anybody is getting an alternative treatment... I would be happy to read any experiences on that!

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MeWithPBC
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8 Replies
zipitydoo profile image
zipitydoo

i would wait and talk to your liver specialist before doing anything. i have read only today about herbal remedies being hard on the liver.

MeWithPBC profile image
MeWithPBC in reply to zipitydoo

Thanks, I haven't found anything yet...

I'm seeing the specialist in 2 weeks, I'll talk him about it!

cowren profile image
cowren

Mewithpbc

I have also alternative are not always best you must trust in your consultant give the new med a chance before makin any decision

Best wishes Karen

The only alternative thing I can think of that might be of an aid is milk thistle. I experimented with it myself last year and got good results back and then I ceased for a few months but then restarted Dec 2012 and my most recent blood results (Feb 2013) showed the LFTs to be a great improvement.

I've explained further under my profile on the question 2 before this one that starts:- "I haven't tried milk thistle but will read up...."

Hope this perhaps is of some use?

Lindilou profile image
Lindilou

Just out of interest, how many mg of Urso were you taking?

I was on Urso for few years and my bloods kept rising, to the point my consultant thought I had AIH/PBC and i was put on steroids, which made no difference either.

I Started on Milk Thistle which bought bloods down and then increased Urso from 500mg a day to 1000mg and they have been their lowest since being diagnosed 11 years

I did try a nutritionist, I detoxed with a liver cleanse diet for 6 weeks (lost nearly 2 stone). I took all the vitamin supplements that I was told to and my bloods went up slightly! However, it taught me what was good for the liver (food wise), the weight loss was handy as I gained the weight once I started on the steroids :-(

Best of luck x

MeWithPBC profile image
MeWithPBC in reply to Lindilou

I'm taking 1000mg a day since the beginning. I have to go back for bloodtests next week...

I have gained some 6 kg already :(

Tx for your answer... I'll talk him about the milk thistle!

Lindilou profile image
Lindilou

Fingers crossed the blood goes down on your return. Regards to the Milk Thistle, maybe ask for a trial period on it and ask for bloods to monitored, its worth a try.

The weight is a pain, I have just started yet another Weight Watchers eating plan, been really good and lost 5 lbs so far but I would usually be heading for a bigger weight loss at this stage. Still its a loss so im happy

x

Biddyb profile image
Biddyb

Looking for alternative treatments, in last issue of Bear Facts magazine published by PBC Foundation a sufferer wrote to say she took a tablespoon of Coconut Oil melted with Orange Juice daily, I started this as my thoughts were that I would do no harm, last ALT readings were down from 87 to 35. May be a miracle I don't know will see next months results how they lie. I do yo yo but never this drop. Please post any alternative remedies always worth a bash

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