Does anyone have diet and supplement experience and advice to help bring fibroses down?
Resist temptation to say you don’t know any other than Ursodoil, obeticholic acid, Fenofibrate and clinical trial Setanix
I’m looking for supplemental treatments to practice along with these treatments western medicine has to offer
just looked up a question about turmeric and PBC. A specialist said it causes more bile and that’s not good. Then I read this mice study:
Results
Liver damage, cholestasis and fibrosis were reduced in Mdr2−/− mice after curcumin feeding. Moreover, curcumin inhibited cholangiocyte proliferation and expression of activation marker Vascular Cell Adhesion Molecule-1 (VCAM-1) in Mdr2−/− mice. Curcumin - similar to PPARγ synthetic agonist troglitazone - directly inhibited TNF-α induced inflammatory activation of cholangiocytes in vitro, whereas these beneficial effects of curcumin were largely blocked by a PPARγ synthetic antagonist. In addition, curcumin blocked proliferation and activation of portal MFBs by inhibiting ERK1/2 phosphorylation, thus contributing to reduced fibrogenesis.
so do we take turmeric or not?
What about
Ginger
Cayenne
Lemon
Kale
Kimichi
Could a shot of this daily help reduce inflammation, fibroses?
I use all of the above. My liver enzyme levels haven’t gone up.
I feel like to reduce my over all inflammation I need to reduce fibrin and help my apoptosis process get rid of damaged cells.
I have a couple of other issues with excessive fibrin so I take the below.
I drink ginger/turmeric tea with peperin quite often.
I also take serrapeptase, Natokinase, and Lumbrokinase, Berberine, methylated B vitamins, vitamin C, Bromelain, and Algal Oil
I would research all of these thoroughly on reputable sites and talk to your dr about what you do take and check your enzymes just to be safe.
I like the way my Dr put it, Everything goes through the liver, even healthy food and vitamins, so the fewer things you put through it, the better.
Hi there. Research Milk Thistle. I have used MT since I was diagnosed. My ALT and AST are back to normal and my Alk Phos is down from 280s to 160 and continues to decrease each test. Of course a healthy lifestyle with e exercise is just as important as the right meds and supplements. The liver loves exercise!! I use Liverwell by weliveconscious.com. I have seen it in the top 5 supplements from several publishers of supplement reviews. Good luck to you!!
P.s. ... I just started taking fenofibrate for cholesterol. It has shown positive results in the UK for treating PBC. I am on no other treatment for PBC yet.
I was diagnosed in late 2015 went on Ursodiol in mid-2016 after trying to reduce my liver LFTs nutritionally didn't work. At the time, I did a lot of research and found an Australian physician who recommended taking Vitamin C (1000 mg 2x a day) and Selenium (200 mcg 2x/day). I have also radically changed my diet, drinking a lot more water, limiting oils to healthy ones, cutting gluten completely and eating a much more veggie and fruit rich diet with less meat and very little dairy. Over the 7 years my fibroscan score has gone from 8.2 to 3.9. Because I've done all these different things I really can't say what has worked the most.
thanks for sharing this michi1, all my 3 PBC inflammation markers went down to top edge of normal range last month whe I reduced sugar, processed foods, additives, red meat, alcohol and all my supplements, daily exercise. I kept taking Ursodoil. I also took 2 weeks of fenofibrate that caused flu symptoms. So I stopped. I also took a daily 4oz shot of blended lemon, ginger, kale, cayenne, now I’m going to take a month of the above without fenofibrate to see if enzymes stay normal. I’ll keep you posted. Keep us posted on your blood tests, life style and what you do to reduce fibroses
Jlruggie
that is interesting to hear about your symptoms on fenofibrate. I recently got on that two weeks ago as well, and I have been extremely sick. I figured I would give it another week and get tested and see how my labs are doing and if my body adjust to the medication.
yeas that what I was told as well, you get to tolerating fenofibrate flu symptoms better every round. Unless my lemon, cayenne, ginger and kale shots along with cutting sugar, processed foods and alcohol did it, fenofibrate got my enzymes to normal. Top of normal range but normal after just 16 days. Let’s see what next blood test says with no fenofibrate
thanks so much. Much appreciated. I’ve been so sick and trying to understand if I just caught another virus or if it’s the drug. I had a feeling it was the fenofibrate. But I have had PBC for 13 years and my alkaline phosphorus is still above normal levels. I was going to give it another week and see if things get better and do my labs to see if the medication is actually working. Super helpful.
well me too, high enzymes, I asked for a liver biopsy and violla, stage 3 fibroses. I got serious about nutrition and lifestyle, doc rec fenofibrate again. It works to lower enzymes but I stopped it due to symptoms, see if lemon, cayenne, greens and ginger shot works
I’m understanding from pharmaceutical research PhD brother that over 500 vit c per day will damage kidneys
Also cheap vitamin capsules companies use phylates and plastics banned in Europe to save money without regard for how it poisons people buying it elsewhere
If you find a way to make sure our supplements for PBC and reducing fibroses and enzymes don’t have poisons in them, please share here
Thanks for the information. I've been doing this for 7 years and have seen no negative impact on my kidney function. My ALF numbers are in the bottom half of the normal range, and my fibroscan score has gone from Stage 2 to a Stage 0, and at 58 I feel great and look better than I did in my late 30s. I don't buy cheap vitamin capsules but what I pay may or may not buy better quality ingredients and there is no way of knowing. I choose not to live my life afraid of everything ... that just creates chronic stress which may be the most toxic thing of all. We can only do the best we can with what we can access where we live. So, knowing what I am doing is working for me is enough for me to continue doing that.
I am a strong believer that our bodies are capable of removing a lot of toxins, but that we have a threshold above which our bodies just can't cope with more. I believe all of us here in this group surpassed that threshold which is part of the reason why we are dealing with an autoimmune disease. In every aspect of my life, I try to limit my exposure to these things but we can only do the best we can. The fact is we live in a world where we are assaulted by toxins in every way. The air we breathe, the water we drink, the food we eat, the fabrics that touch our skin, personal care products, work and relationship stress, etc. etc. etc.
I found an anti inflammatory supplement that has most of the ingesuents you take, Natokinase, and Lumbrokinase, Berberine, methylated B vitamins, vitamin C, Bromelain, and Algal Oil, looking forward to start taking it so I can follow a similar lifestyle change and reverse my stage 3 Fibroses
A few months ago I started to take a Bromelain supplement but the change in my fibrosis score pre-dates that. I did it to try to address arthritis in my knee. It's made a big difference and the claim the seller makes is that it dissolves fibrin over time actually eliminating the material that causes the joint pain ... presumably it could do the same for fibrin in other places. It's called Heal-n-Soothe and is made by a company called Living Well Neutraceuticals. It has a bunch of other stuff. It doesn't have Vitamin C or Selenium which are what I've been taking all along.
this was an old study done in 2010 but since I was diagnosed in 2009 I found it when it first came out and have taken tumeric since then. It seems to have helped me.
(can’t seem to get link to work but it is an article in Science Daily titled Indian spice may delay liver damage and cirrhosis, study suggests and was published in the British Medical Journal). It specifically cites PBC.
research over 10 years is considered outdated
yes it likely is but tumeric seems to have helped me. By now there may be other studies.
anyway suggest everyone talk to their doctor before starting ANY supplements.
I quit all supplements for 2 - 6 week sessions and blood tests every 6 weeks, even calcium, vit e, k, c and d, fiber. I’m hopefully getting these from my morning greens and cayenne, ginger, lemon, kale shot. No more turmeric for 6 weeks, phd researcher told me to stop two days ago
I asked my liver doctor if I can drink tumeric tea and he said it was fine. But likely the strength is tiny vs a supplement. I also take vitamin D, Calcium, and fish oil which liver doctor approves.
He also told me I can have a drink every now and then if I want to. I seldom drink but have like maybe maximum 12 drinks a year.
I am early stage pbc, diagnosed 9 years ago.
my doc said there’s nothing nutritionally I can really do beyond not drink alcohol more than once a month. He’s the PBC specialist on GI staff at Pearlman Center in Philly. My clinical trial researcher at Einstein is giving lots of info about what to do with nutrition.
Sounds you got this covered! I just try to eat healthy and keep it simple.
I’m always looking and researching diet and what goes in my body, why take chances. I tried to keep it simple but for me that didn’t work, since I’m in stage 3 fibroses. The next step is stage 4, terrible symptoms and a liver transplant. Therefore I’m doing everything possible to lower enzymes, reverse fibroses. When doctors say there’s nothing more they can do, I’m not listening. There’s more. Cut sugar, red meat milk, additives, pesticides, mold, plastics. Load up on lemons, citrus, broccoli, kale, lettuce, cucumbers, organic olive oil, avocado, beets, chard, ginger, cayenne, egg “s, salmon, kimichi…
Yes take a proactive approach!
Look up D-mannose my doctor has just told me about this for UTI when I looked into it it appears to be beneficial to liver too
I’ve signed up for Prof Tim Spector’s ‘ Zoe’ study to see whether analysis of gut biome and targeted altering of diet will have a positive effect
I too have signed up for Zoe for the same reason DebatDG9.
I’m expecting my Zoe kit some time in September - how about you? We are in to our 3rd week of eating 30 plants per week. It’s going well I’m enjoying experimenting and feel good. Too early to say if any changes - but surely can’t do any harm
So I'm currently awaiting all test results hopefully in the next week or so. Very interesting process but until I get my results won't know precisely how I need to adapt and will be interesting to discover if what I think is an already healthy diet actually is! Enjoy it when you do yours!
how do I sign up for prof tim Spector Zoe study too?
This is the link - quite expensive but I’m prepared to pay to get any advice about staying as healthy as possible. I found out about him by listening to Radio 4 “Just 1 thing” with Michael Mosely
let us know please how that goes. My specialist finally after 2 weeks of asking, said it’s fine for me to take 1500 ml Urso for a year and 3 months for my ransomed clinical trial for Setanixit, fibroses reducing drug
Hi, I’ve had success with supplements to completely normalise my liver readings after being a non-responder to Urso. I saw a naturopath who does advanced microbiome testing and works in the same clinic as my liver specialist. The supplements he put me on were:
Sodium butyrate
Milk thistle
Slippery elm
PaleoFibre
Garlic tablets
Lactobacillus rhamnosus
Inulin
I’m now on Lactobacillus reuteri instead of Lactobacillus rhamnosus and PHGG (partially hydrologised guar gum) instead of PaleoFibre). The naturopath has made alterations based on 3 lots of advanced microbiome testing. After being continuously elevated, my liver test results completely normalised and have stayed that way. The above supplements were based on my specific microbiome results and may not be the right combo for someone else. My intestinal permeability healed and an overgrown pathogenic bacteria has come right down to safe normal levels.
After being hugely better for months I had a return of significant fatigue and cognitive dysfunction that I had a year ago. However, my liver tests remained normal. Apparently this can be the case even in early stage PBC, contrary to earlier ideas that cognitive issues arise later in disease progression. The liver specialist put me on obeticholic acid which has been shown in experimental studies to help with cognitive issues. It is thought to do this by restoring the blood-brain barrier. Several weeks in I have a marked improvement in both cognition and fatigue, so it seems to be working.
Just as a note, I only briefly got to read the above discussion as on a road trip and writing this quickly, but I too had a strong reaction to Fenofibrate early last year. It was like having a severe flu with neurological symptoms as well. I could not tolerate it. Although obeticholic acid seems to have increased itching somewhat, I’ve had no other side effects.
Take care and all the best. Happy to answer any questions but also in and out of phone reception in rural Australia at present, so may take me a few days to respond.
Also, testing showed I’m highly allergic to dairy. Cutting this out along with gluten (sensitive to but not allergic) has led to a huge reduction of inflammation in my body and no more sinus infections/congestion. I was also found to be allergic to beef and lamb. I feel these allergies may have developed out of autoimmunity. Doing much better without these foods.
I’m going to try all that, why not. After my next 6 weeks of lemon cayenne ginger kale cucumber celery cabbage shot 2x per day. I have no one to check my micro biome levels so I may as well just try it, it can’t hurt!
I guess the main thing to take care of is that you are not too over abundant in particular bacteria. In some studies some people with PBC have had an over-abundance of Lactobacillus species. That was not the case with me, hence the naturopath added it in as a beneficial bacteria. You can get microbiome testing done but it is on the expensive side. For me the supplements are very specific to my micriobiome results and have been adjusted as those change over time.
Sodium butyrate tends to be low in people with PBC which has an association with fibrosis. Ideally you want your body to make its own butyrate rather than rely on the supplement. In my case the supplement is helping but still hasn’t brought butyrate levels up as much as would be ideal. I have found it is very nuanced and complex how all these things interact.
P.S. Lactobacillus rhamnosus has been beneficial in relation to preventing liver fibrosis in mice according to a study I tried to copy and paste but can’t. But if you google: Lactobacillus rhamnosus GG liver fibrosis mice - you should find it.
Tourquoise
I’m going to local organic health food store to ask for the producers on your list
Hi, I hope it helps. I guess just keep in mind supplements are like meds and can also interact with other meds. My main reason for mentioning it is to give you and others hope, especially for anyone like me who is a non-responder with Urso. It was only with the supplements that my liver readings normalised.
For me the microbiome testing was the important piece of the puzzle. I’d be more cautious without it with regard to supplements because I like to know exactly what is going on. Also, it’s important not to take too much of anything. I went from having too little of certain beneficial bacteria to being over-abundant in it, so that’s why the naturopath changed the Lactobacillus species. I’m being monitored over time by him and he is in communication with my liver specialist. So just take care and get some good advice on dosages.
It’s interesting after months of great improvement I had the fatigue and cognitive symptoms return even though my liver results remain normal. I’m greatly improved again now with the obeticholic acid added in. There’s still so much they are learning about this disease.
PBC 
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