Alternative treatment?

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!

7 Replies

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  • 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.

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

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

  • 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?

  • 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

  • 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!

  • 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

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