Over the counter

[Urso462]

Since I can't take urso could I take milk thistle. Pharmacist didn't know anything about it.

[butterflyEi]

Hi Urso462

I have heard of people using Milk Thistle (silymarin) but apparently there are no studies to support the efficacy of using it.

Was your specialist unable to offer you any alternatives?

Are you a member of the PBC Foundation? If not free to join through the link above. In the members section there is a Compendium which is very informative. I think it is around page 42 that there is information about medication.

Not sure which country you are in but in the USA a new drug called Ocaliva has been liscensed and it is currently going through the process in Europe.

Hopefully someone with experience of Milk Thistle will be along shortly and can give you a more definitive answer.

best wishes

[susanburgess in reply to butterflyEi]

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[Urso462 in reply to butterflyEi]

Thank you for your reply. I will check out the PBC foundation thing. No they didn't offer me alternative yet. And I am in USA. They have not said anything about Ocaliva. I have heard about it and it's super expensive. Probably would not be able to afford.

Wishes to you as well

[ginam in reply to Urso462]

It also causes itching.

[susanburgess]

I have had pbc for 16 years and I take milk thistle 2 every morning. I get mine from simply supplements phone number 08009880292 hope this helps.

[Urso462 in reply to susanburgess]

Thanks for reply.

[Kevviv]

Hi take milk thistle for 10 years

[Urso462 in reply to Kevviv]

Thanks for reply

[Hidden]

Hello Urso462.

Milk thistle is reported to be good for 'cleansing the liver' but it's not mentioned by consultants, etc as I don't think there is evidence to support it.

I did do my own experimenting with milk thistle a few years ago now. I bought mine from a UK company (Nature's Best) before new UK legislation came into force a couple years ago so I was buying higher strength of silymarin as it is known. I bought capsules that did enable you to pull apart the shell and make a 'tea' with it if desired. I did think that my first LFTs a few months after taking the milk thistle seemed to be helping with their reduction but the next LFTs weren't so. (Seems that a certain time of year since about 18mths after starting the urso December 2010 I go up and down and make a wavy line on the graph. It has been like this ever since.)

I withdrew taking the milk thistle and after a break of about 6mths or so restarted but can't say I got any better results at the next LFTs from when I just take the urso.

The milk thistle wasn't cheap and I just came to the conclusion in my use that it wasn't making any difference.

Then the milk thistle was changed, the strength isn't what it used to be. The milk thistle was never advertised as being for a liver condition, just that it might help with 'cleansing the liver' originally but since legislation noticed that it is being marketed as just a temporary 'fix' after over-indulgence (ie the recent festive season). I personally now think that the strength of the milk thistle that is marketed for someone with PBC might not be if milk thistle can indeed be of some aid in this new potency.

I doubt a pharmacist can make any comments on a product that they don't sell. Even the UK Holland & Barratt can only state what their product labels say too as they do sell milk thistle (I have bought from there in the past pre-legislation but now it is very expensive and in a weak potency too.)

On another note, when I was taking the milk thistle I have to state that I did not encounter any problems at all but long-term usage I cannot say. I'm wary of taking anything now I have PBC and luckily I've not even had cause to reach for anything like paracetamol since pre-early 2010.

[Urso462 in reply to Hidden]

Hi peridot, I do have fatty liver as well as pbc so perhaps the thistle will help with that. Not starting it yet. Giving my tongue a chance to heal. Reaction from urso☹️

[Jackie71]

I'm going to throw a spanner in the works now when I was first diagnosed that was one of the things I was told not to take, can't remember the reasoning. I was of the same opinion as everyone else that it is supposed to benefit the liver, perhaps it was to do with taking the Urso?

Happy New Year to you all and let's hope 2017 is kind to us.

[TracG]

I was diagnosed in 2010 and and prescribed URSO. I checked to see if there would be any benefits from taking milk thistle. My liver consultant told me there is no medical evidence it is beneficial to patients with PBC. He said taking this may affect my blood results which makes it difficult for doctors to monitor my liver function. As his advise was not to take it is haven't.

Let's hope 2017 brings new options for us all.

Happy New Year 😊

[Ktltel]

I'd ask a Naturopath or a doctor who knows about natural remedies etc. Do what you can to build up your immune system. PBC is a autoimmune disease. Build up your resistance the best that you can while avoiding anything that can compromise your liver. Google liver friendly foods and foods to avoid when your having liver issues. Hope this helps.

[Urso462 in reply to Ktltel]

Thanks Ktltel. Good advice!

[Hidden in reply to Ktltel]

There's a good leaflet about diet on the British Liver Trust website as personally Ktltel, I do not trust a lot of information out there on the net.

[DianaRo]

I'm intolerant to urso. I mentioned taking milk thistle to both my gastro and hepatologist and they said it was being used for fatty liver disease but there were no studies on using it for PBC. Neither of them had any objection to my taking milk thistle. They encouraged me to try it. I've been taking it for about three months with no side effects. It's greatly helped my digestive issues. I don't know yet if it's reducing my liver panel scores.

[Urso462 in reply to DianaRo]

Hi DianaRo, I do have fatty liver as well as beginning of pbc. Good luck with scores. Let me know.

[Ktltel in reply to DianaRo]

Hi DianaRo, what stage of PBC are you in? What happened when you took the URSO? Did your doctor tell you of anything else you could do to slow the disease down? And finally, how fast does the disease progress without taking anything? I'm interested as I too can't take URSO. Don't see a hepatologist until Feb. 8th. Stressed out.

[DianaRo in reply to Ktltel]

Hello Ktltel -- I was diagnosed Stage 2 through a liver biopsy two years ago. I haven't been staged since that time. I had excruciating stomach pain on the Urso -- like taking arsenic. I was completely disabled by it and also diarrhea. I was prescribed all kinds of pain killers which didn't take the pain away. It was the most horrific pain I've ever had. Both my gastro and hepatologist said I wasn't going to be able to tolerate it. They hoped I'd qualify for the Ocaliva clinical trials but I needed an average score of 615 on the alkaline phosphatase and mine was only about 590. It was 715 on my last test. It's available now by prescription but would cost me $70,000 (US) a year. Medicare won't pay for it. There is nothing else available at present to take so I'm just being monitored. I don't know how fast the PBC is progressing. It varies on an individual basis.

[ginam]

I've been taking it for a month. I also eat oatmeal, oatnut bread, etc with every meal. I haven't been having any pain or itching and my liver panel has been normal. I also stay away from processed foods including hot dogs which I found made me itch. Read this article from top to bottom to help you decide about milk thistle.

draxe.com/milk-thistle-bene...

And this article on oats.

webmd.com/cholesterol-manag...

And another good one. drdavidwilliams.com/foods-t...

[Urso462]

Hey ginam, good articles! I will keep this in mind.