Alternative treatment?

[MeWithPBC]

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!

[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 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]

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

[Hidden]

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]

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 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]

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]

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