Herbal Supplements

[Legs8323]

Does anyone with PBC take herbal supplements along with their prescribed medications to help lower liver enzymes? If so what kind, and have they actually helped. I was diagnosed stage 0-1 in 2009, but could not tolerate URSO, so I've not been taking any medications for the past 12 years. I had a fibroscan for the 1st time on Monday and now I'm at stage 1-2 (7.5 score). Doc wants to put me on URSO again but not sure if I can tolerate it, and I'm interested in possible herbal supplements that could help.

Any suggestions will be greatly appreciated.

[OdinsMom]

I cannot take urso so am taking ocaliva. There is also the option of fenofibrate. Clear any herbals with your dr because some may have a detrimental effect by making the liver work more. I'm post tx and have recurrent PBC. The first time without urso and no other choices I did detox massages, acupuncture, acupressure and energy work

[Esnofla in reply to OdinsMom]

Start on a low dose of Urso and gradually increase to your required dosage. May help you tolerate it better.

[OdinsMom in reply to Esnofla]

It does not. I've been at this since 2007 and well aware of what works for me. I take ocaliva with wonderful results and no side effects

[rderezin]

My dr after a hospital stay last year after consulting with an infectious disease specialist added vit D and a probiotic..Please only take anything additional only after discussing with your dr.

[Stub007]

Wish I could help: I tolerate URSODIOL and a multivitamin.Good luck!

Don

[Texasliz]

My Hepa says no herbs for us. He’s done hundreds of liver transplants due to herbal supplements damaging PBC patients. Read every label and if an ingredient is herbal, don’t take it.

[2bear in reply to Texasliz]

Hi can u tell me moreAbout this ? My Hep says same

[Texasliz in reply to 2bear]

If the ingredient list is in italics, and you can’t pronounce it, it’s likely herbal.

[2bear]

Hi thank i Yes exactly. - and then again what do we do - milk thistle - teas -For example the tea itself may be health promoting but where is tea from -etc what does it have in it besides the tea - even the idea of liver detox - ur whoa probably knows mine.

[Legs8323 in reply to 2bear]

Do you take milk thistle.?

[2bear in reply to Legs8323]

Hi. Milk thistle was one that he was t adamantly against. I haven’t though. Do u? Then again we would need to know where from etc .theoretically could be helpful let’s say but the other components thst I mentioned before can ge problematic. Are u in US ? . did u ever see Medical Medium book covering the LIVER ?

[misskiki in reply to Legs8323]

I take 1000mg milk thistle , 2 times a day. My dr didn’t think it would help me but that I could take, I take 600mg of ur so nightly too .

[Legs8323]

I live in North Carolina in the USA. I don’t take any medications presently as I think that antibiotics I took years ago caused this liver disease I have now. The research I’ve done indicate medications as a very possible trigger for PBC/AIH.

[Hils67]

Hi, I’m hesitant to recommend herbal remedies as no doubt lots of people will shoot me down in flames. However, in my experience a properly prescribed herbal tincture has helped me loads. My herbalist knows about the PBC and prescribes a tincture on that basis after a 2 hour consultation.

I cleared it with my consultant who was sceptical but didn’t think it would do any harm. I keep a graph of my blood test results and when I don’t take the herbs (sometimes I don’t bother as they taste foul and are expensive) my numbers go up…when I last took the herbs properly as prescribed I got my numbers almost down to normal in 18 months. Unfortunately my herbalist has stopped practicing and now I’ve had to find a new one…so because of COVID I’ve been without my herbs for 18 months and now my numbers are rising again…so I’m back on my herbs again and already feeling better after just 2 weeks. So I’m hoping next blood test shows improvement.

I’m only in early stages of PBC though, so no cirrhosis or fibrosis at the moment. Good luck x

[Legs8323 in reply to Hils67]

Hi Hils67,I've had PCB since around 2008 and have never been able to take medication and as of last week have very little fibrosis (stage1-2) and no cirrhosis. Ultrasound came back with no remarkable damage. I tried URSO for a year and can't tolerate it and it really didn't bring my numbers back to normal anyway. I would like to try a more natural way to reduce my labs. I've read that mike thistle and curcumin can benefit the liver and inflammation. Are either of these on your list of herbs that have helped you?

[Hils67 in reply to Legs8323]

I do have milk thistle in my tincture but also lots of other ones. I would be reluctant to buy over the counter herbs as they’re not very well regulated. I also have nettle in my tincture, rose, lavender, dandelion and a few others. It’s worth seeing a herbalist for proper advice as they know about any contraindications. For instance, some say turmeric is good, however, you should only have a little as too much can damage the liver. So it is a fine balance. Good luck x

[Hils67 in reply to Legs8323]

Hi there, just thought I’d give you an update on how my herbs are working. After being in my herbal tincture…which was formulated and prescribed by a qualified herbalist, my ALP has started coming back down. Before herbal treatment it was rising and was up to 269, today after 5 weeks of taking the tincture (5mls x3 times a day) it is down to 198…which is quite significant. I’ve had this result before but stopped the herbal treatment as it’s quite expensive £50/month…but I’m going to stick with it this time.

I would urge you to see a qualified practitioner as some herbs can be bad for the liver so it really needs someone who knows about PBC and fully knowledgable about herbal tincture dosage rates etc.

Good luck x

[2bear in reply to Hils67]

Hi thank u for ur post. I would like to knowMore. I wonder whether herbs can cause or assist somehow in impacting the bile ducts leading to this diagnosis. I had been taking them for years prior to diagnosis. I don’t know … but I’m very into eastern medicine -

[Hils67 in reply to 2bear]

I think your best bet is to talk to a qualified herbalist. My knowledge of herbs is quite limited, but from my research there are many herbs such as nettle and dandelion which are inflammation moderators…in that they moderate the inflammation in the body rather than suppress it, which is healthier. But there are so many different herbs which all react differently to different people…so a qualified herbalist will work out which herbs work best for you. I think a little knowledge can sometimes be dangerous and doing research on the internet is difficult due to so many different sources out there! That’s why I had a consultation with a qualified and registered herbalist. Good luck x

[2bear in reply to Hils67]

Thank u so much. The person with whom I consult is a teacher of chinese medicine and trains all over the world. There are many considerations and that’s the issue. .. where do they come from , our particular issue and everyone different - etc etc so it’s hard to know. We will all keep exploring and sharing. Thanks again.

[DianaCoats]

I always hesitate to post about supplements or naturopaths as people are fast to respond, "my hep says no". Which is fine except every single one of us is different and our bodies respond differently. Western medicine is designed to treat the "bulk" of folks without taking into account all our differences.I see a naturopath and take numerous supplement to decrease inflammation. Without inflammation, there is no PBC.

I am not going to post what I take because it may not be right for you. But I do know there is more to managing this disease that what your "Hep" says.

And I'm skeptical that "hundreds of transplants" have been caused by folks with PBC taking supplements. Those numbers are a bit hyperbolic when you look at the total of transplants that happen yearly.

Listen to your body and do what's right for you.

[Texasliz in reply to DianaCoats]

My Hep who does transplants, has been in practice for decades and is one of the most well known specialists. He also heads up a huge hospital. He has the credentials, so I trust him. At my first appointment back in 2012, I took him all 10 of my supplements. He only approved ONE of them. I am no worse, and am living well. He kind of specializes in herbal damaged livers, so he has likely done more of that type transplant over the years. The bottom line for me is that I am doing well, and my doc monitors everything I swallow. Can't beat that success rate, huh? Good luck to you, and be careful with herbs.

[ninjagirlwebb in reply to Texasliz]

I run everything by my hep before I take it. He is okay with me taking a multi vitamin, fish oil, calcium and he recommended D3.

I also run any other meds other docs prescribed by him if I read that it may impact the liver.

[mrspeffer2]

Good Morning....I too cannot tolerate URSO. I believe that is due to a reaction to the list of fillers they put in it. Have you read the ingredients! shocking that all that is in something to help our livers. My new Hep wants me to start URSO, but knowing my past history of it, I started researching. TUDCA is a natural form of Bile Salts with no fillers. Google TUDCA and PBC and you will find positive research results from many sources. There is a formula to determine dosage. I take 500 mg 2x's a day. I weight about 120 lbs. Although I basically started it about a week ago, I'm already noticing "changes" for the good in my bowel movements. The research says it may take a few months to begin to show changes in labs.I am using the brand recommended in the research. Double Wood TUDAC 500 mg. TUDAC is the acronym for Tauroursodeoxycholic Acid. Only ingredients extra are rice flour and a gelatin capsule. Bought it on Amazon. Be well