Okay, reading here is making me overcome my aversion to taking URSO, especially since I was diagnosed 6 years ago and for the past three weeks my liver has been aching a lot, right under that lowest front right rib. I also read the posts about Mayo Clinic - I’ll try to get myself up there this summer (2019).
Question, in the lines of “naturall” and “homeopathic” treatment for liver disease, dandelion, milk thistle, artichoke, and morning lemon juice are highly recommended, but my understanding is that the reason is because these foods STIMULATE bile production! However, with PBC aren’t we trying to REDUCE bile production, because the bile that is produced in the liver can’t come out because we have damaged bile ducts and it builds up in the liver and causes the pain and cirrhosis that destroys the livers of PBC patients??? It seems like those foods “recommended” for liver health will be very UNHEALTHY for livers of people with PBC. Please tell me what you think - thank you!
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The reason uso is good for the liver is because it ups the flow of bile through the liver which keeps the bile ducts open and slows down the progression, hope this helps
Are you sure that's how it works? Man, I hope you're right. I was thinking I needed to be careful about celery and stuff because it also increases bile production too. The M3dical Medium says to deink celeey juice but I have been afraid to do it.
Have you tried his stuff? Is it a diet or what? I didn't know about loads of celery causing high blood pressure. ..there's always some damn thing, isn't there? And thank you for that info.
Haha yeah I know. Always something - I have all his books Thyroid, Liver -
A lot makes sense but I check in with my acupuncturist who is CHINESE medicine dr and PhD in herbology and very sensible. It’s interesting because she has always taught me that everyone is different and their particular condition will determine what to do and how much etc. for example sometimes there will be recommendation for stem and or root of the herb. Your particular condition may not respond well .. so yeah - always something. - it’s good to share and follow up with our particular resources so we can compare. Take care.
That is not true actually. I did the celery juice with apples for a whole month daily. My blood pressure is so low that I've come off medication now. My doctor was shocked I was only 100/65 and that was without medicine! But, my liver enzymes have gone up a bit so celery juice does not help.
There's no cure for primary biliary cholangitis, but medications are available to help slow the progression of the disease and prevent complications. Options include:
Ursodeoxycholic acid (UDCA). This medicine, also known as ursodiol (Actigall, Urso), is commonly used first. It helps move bile through your liver. UDCA doesn't cure primary biliary cholangitis, but it seems to improve liver function and reduce liver scarring. It's less likely to help with itching and fatigue. Side effects may include weight gain, hair loss and diarrhea.
Obeticholic acid (Ocaliva). This is the newest medication approved by the Food and Drug Administration for primary biliary cholangitis. Studies show that when given alone or combined with ursodiol for 12 months it can help improve liver function.
Fibrates (Tricor). Researchers aren't exactly sure how this medicine works to help ease primary biliary cholangitis symptoms. But, when taken with UDCA, it has reduced liver inflammation and itching in some people. More studies are needed to determine long-term benefits.
Other medications. Many other drugs have been used or studied for treating primary biliary cholangitis with mixed results. They include methotrexate (Trexall) and colchicine (Colcrys).
SCThompson I am glad you’re going to go to Mayo. My liver gets sore and achy and is due to inflammation in the liver. I was cirrhotic at my diagnosis and I thank God I found out when I did and was started on Urso! It has slowed down my PBC dramatically. Also, I am very fortunate to live only 30 minutes away from Kansas University Medical Center to see not only my Hepatologist, but all my other specialists (there are many) for one stop shopping. With their computerized charting the left hand always knows what the right hand is doing.
So, SCThompson I can’t stress the importance enough of getting started on treatment for your PBC! In a short time you will feel so much better. 🤗
I am Asymptomatic and do not want to take urso,which I believe is my choice, I will see what my next scan is like and if it's improved then lifestyle is the drug
Lifestyle may help over all health, but it definitely is NOT a drug to address PBC. Urso slows down the progression of pbc so that it doesn’t damage the liver. Without taking it is taking a chance. Symptoms also do not correlate with pbc stages. Can not use that as a guide. Just my 2 cents.
I stopped it a few years ago due to bad side effects; hair loss, stomach ache, vomiting. Got it in tablets about a year later and took 1 a day for a week, then increased to 2 for a week then 3. In that year, my liver panel doubled and the fantastic itch started! Needless to say, I am of course back on it. Trust me, you will be sorry if it progresses. This itch is wicked and goes on for about 12 hours a day where you cannot even sleep. Good luck!
Hi, I’m currently taking URSO and my Gastro dr and GP have done an experiment with me taking herbal remedy in conjunction with the URSO. URSO alone and my numbers steadily rise but with taking the herbal remedy which includes milk thistle and some other herbs, my numbers steadily lower. Generally I feel much better with less itching when I’m taking the herbal stuff too. So, for me at least I’m happy to take both URSO and the herbal stuff.
I think producing more bile to keep the bile flowing helps keep the bile ducts clear and less inflamed. It’s the inflammation which stimulates the production of more antibodies which attack the healthy cells, ultimately destroying the bile duct cells. The key is to keep inflammation low through healthy eating ie not putting too much strain on the liver and keeping the bile flowing.
That’s my understanding...but I’m not an expert. I just know what’s working for me atm.
My herbalist made up a special tincture for me to help with PBC and my stress levels. It’s made up of rose, milk thistle, skullcap, schisandra, dandelion root, lavender, Passion flower, chamomile. Some herbs are for the liver and some for the overactive brain, some to calm and relax.
Seems to work for me and my GP and gastro agree it seems to be helping.
Interesting. My acupuncturist who is an herbalist (ph.d )
as well says she was concerned with combination of herbs with urso. I would be curious as to how u are doing. Are u also doing any more of medical medium suggesting.?
I asked myself similar question at diagnosis about foods/supplements claimed to improve immunity: why improve an immune system that can't stop attacking me? I just eat healthily and accept I don't know the answer to my question. It is healthy to question. But not all our PBC questions can be answered yet. Until they are, we can trust the evidence that urso works to delay progress of PBC in most people.
Is it ok to ask you, have you been prescribed urso and do you take it? If not, can you say what stops you? I ask if it's ok because your post refers to taking urso but avoids saying if you do. Direct contact with PBC Foundation would likely be a great help to you to discuss this personally. You can be sure that they are not into persuasion and have no agenda, just Bear Facts.
Probably should take urso right away. Try it to see how it affects you & then you can address issues with your medical team as they may or may not arise. If you respond well, you waste valuable time in getting treatment by postponing the urso. While on urso, you can still research any of the natural remedies but be sure to run anything you take by the doctors to ensure that it is safe for you to do so. Just my humble opinion. Do what you feel is best.
I would agree with Hayley, URSO isn’t really a drug it’s more of a supplement but the sooner you start taking it the better and more effective it is. Side effects are minimal and usually short lived.
Also, I don’t rely on natural remedies but on a combination of URSO and natural remedies together with trying to eat foods and drinks which put less strain on the liver...ie whole foods, in processed foods, low fat, low carbs. I also take kefir which is supposed to be good for gut health and autoimmune conditions.
Who knows which bits are working? Seems to be working,for me, whereas only one thing on its own doesn’t work. I think it’s all about balance.
I am not one who "jumps" to take prescription medicines and I always look at the potential gains versus known negative effects. I have also used alternative modalities when I deemed them helpful. So I looked in to the science behind URSO when I was told to take it for my PBC.
Regarding URSO- my simple understanding of it--- we have 5 or 6 main type of bile acids at work in our system. URSO is helpful to us because it "changes the ratio" of these bile acids to a more optimal level, making flow better so as to reduce potential scarring in the tiny Biliary channels.
So, while it is not a cure for PBC, I don't view URSO as a "dangerous" drug (except of course to those who are allergic and have bad reactions to it)
And I see it as a positive help in hopefully holding back progress of PBC. Also, I like the fact that it HAS been in use for 20+ years so there is knowledge regarding long term use- personally for me,I don't see a down side to taking it. I did have to get used to it- in the beginning- but thankfully I did. Each of us must make peace with our choices. None of us signed up to have this rare progressive auto immune disease..
I didn't even KNOW what the He** my "Biliary system" was when the dr. told me dx. hugs to all.
Hi there! I've heard we should stay away from things like Milk Thistle and other home remedies because they're not properly studied and unregulated. I too had an aversion to URSO, was told to start taking it 4 years ago, didn't, and my PBC progressed RAPIDLY. Ugh. I just started taking it in early December so I'll find out March 10 when I take my next tests if it's helping (it's slow acting so you have to wait 3 months to do blood tests again), but I ALSO did a bunch of things that I hope will help as well -
One thing my doctor said (a liver specialist from the Walter Payton Clinic) was "first, we have to stop the insult to the liver." I said "ok sure, what's the insult?" He said, "I don't know." Apparently, it could be a NUMBER of things. SO. I decided to completely change my lifestyle thusly:
1. Drastically reduced my sugar intake. I'm a sugar junkie, and the liver turns sugar into fat, which damages the liver.
2. Drastically reduced my "bad" fat intake. No more saturated fats, no more processed crap food, I check the labels on EVERYTHING I ingest for both fat and sugar. It's low, or it don't go...into my mouth!!!
3. I stopped ingesting aspartame. That messed me up YEARS ago with Graves Disease, another of my umpteen autoimmune diseases. In the last year, after going from pre-diabetes to full-blown diabetes (yet ANOTHER autoimmune disease I have), I started eating a lot of sugar-free stuff with aspartame again after years of not ingesting it. I don't know if that's the insult, but since it was a problem with the Graves, who knows? Couldn't hurt to stop it.
4. I started drinking coffee which allegedly, when drinking 3 or LESS cups per day, can supposedly slow, halt or reverse fibrosis (my big issue now), although the jury seems to be out as to whether or not this actually applies to PBC - but whatever, I'll try it, and we'll see...
5. I stopped swimming. I was swimming every day. Chlorine off gasses something called "disinfection by-products" which when inhaled and/or absorbed through the skin allegedly can cause liver problems.
6. I've reduced my portion sizes to 6 small meals / snacks per day in an effort to take pressure off my liver.
7. I'm trying to limit my carb intake to between 50 and 75 carbs per meal. Refined carbs are allegedly bad for the liver.
8. I'm eating better food. ORGANIC *EVERYTHING*. No american-grown vegetables or grains unless they're organic (I've been vegan for 10 years, but a junk-food vegan). I used to eat pretty much just pancakes, baked goods, potatoes, rice and a few vegetables here and there. Really, really stupid. But whatever - I'm here now, still vegan, but I'm eating a ton of green vegetables, leafy, broccoli, radishes and carrots are supposed to be good for bile health, so I have those too, tomatoes, avocados. I also eat a red lentil pasta called POW that's pretty good, gluten free; I didn't care for their yellow lentil pasta but the red I like! I also eat a lot of quinoa instead of rice and potatoes.
Anyhoo, that's about it! I'll check back with you all once I figure out if this has helped at all (or not!)! If not, I understand that there is another drug that can be added on to the URSO called bezafibrate that might also help when taken in conjunction with URSO.
We just gotta hang in there, and keep fighting the good fight. It's all we can do.
Best of luck to you, and to all who read this. Hugs, LG
My consultant at the hospital recommended maximum of 5 cups of coffee - minimum of 1.
1 is better than none and and more than 5 is a waste of time. Apparently studies have shown that coffee can slow down progress of liver disease. Although the studies were for cirrhosis and liver cancer he said no reason for it not to apply for PBC. There are results of studies online.
OH YES AND PS - I noticed that I had stomach discomfort at first, but I think it was because I was eating TOO MUCH when I took it (it said to take with food but I was nervous and ate too much). When I reduced my portions, I never had a problem again...
This has given me a fine line to tread but I shall do my best to answer.
The data tells us (in quite an unequivocal way) that Urso response is the key to longer life with PBC. The data shows us that an early diagnosis and Urso response leads to normal life expectancy. The data also shows us that partial response is better than no response (which usually means no Urso).
As an aside, there are second-line therapies available and more and more data is becoming available on them. However, we have been using Urso for over 25 years and so have 25 years worth of data. It is important to know that these days, non-response to Urso is not necessarily an obstacle: as the new therapies are seen to make a positive impact.
Back to the original Q... There has been no data released, peer-reviewed and verified that tells us of any natural remedies for PBC.
However, there has been a lot of data that tells us that PBC survival has improved enormously since we have started using Urso for PBC. Historically, 40% of PBC patients not on Urso were cirrhotic within 10 years. Many of the old studies some of you find about 5, 7, 10, etc years survival (please see a different rant in the pinned posts for that subject) are all from the days before Urso was being used. (only part of why they are inaccurate and totally out of date).
So, whilst I cannot and will not make any recommendations, I would ask you to seriously consider the use of Urso. We, as the PBC Foundation, are a fully independent charitable organisation that exists to support, inform and advocate for patients. Our job is to look at all of the current information and to share with you best practice.
All of the major guidelines on the care and management of PBC direct clinicians that every single patient with PBC should be offered Urso as a treatment, in a dose appropriate to their individual weight.
If we can be of any help, do feel free to contact us.
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