Has anyone been able to lower ALP and GGT without meds?

[FarahS]

Just curious if anyone has managed to do this through life style changes, diet and exercise, maybe during the early stages of PBC?

[Kakey]

No. Definitely not. I was undiagnosed for a number of years (AMA Negative). My lfts were being regularly monitored, and they climbed up and up. When I did finally get Urso, they dropped to acceptable levels.

That is obviously only my anecdotal evidence, and as such pretty worthless. But it tallies with advice from experts, like the PBC Foundation. Diet is not a treatment, although a healthy balanced diet is recommended.

Honestly, you don't mess around with PBC. I deeply regret the way my diagnosis was handled, and the missed Urso because of it.

[iagra]

Can only speak for myself. The only way I was able to lower ALP and GGT is with URSO.

GGT after several months settled in the normal range. ALP fluctuates, I'm happy if it is no higher than 200.

[Walker222]

I will know soon

TUDCA is key and

Other supplements phosphatidyl choline vit d and LDN low dose naltrexone but not clear yet if it’s working but numbers have been decreasing

And auto immune protocol diet

[st-Jude in reply to Walker222]

TUDCA, would like your feedback

[Walker222 in reply to st-Jude]

TUDCA is basically a natural form of URSO - not sure if it’s working yet enough but I started at ggt 899 its 230 now and ALP 425 it’s 196 now

I also am doing diet and other supplements

[loufish in reply to Walker222]

Out of interest how do they produce the more natural Tudca ? I know bear bile was used for urso in the past - when you say natural do you mean nit from animals

[Walker222 in reply to st-Jude]

CELL CORE TUDCA

[Lm205 in reply to Walker222]

I’m on urso and I’m wondering if I can take tudca while on urso … I have some tudca from cellcore ….functional dr had me on it but … still unsure.

[Walker222 in reply to Lm205]

one or other

[kishna in reply to Walker222]

Curious how the LDN is working for you? Do you have any side effects? My Functional Dr wants me to try it. Not sure I want to. Although my Hepatologist said I could.

[Walker222 in reply to kishna]

no side effects this far

Don’t know if working yet

[Turquoise2075]

Hi FarrahS,

I’ve been on Urso since being diagnosed with PBC in November 2020. After a year my ALP and AST continued to be high. I was then trialled on Fenofibrate which made me ill and I had to stop it. I then had success with supplements and dietary changes with my ALP and AST completely normalising. However, I still take Urso and have no intention of coming off it. I suspect the other changes in my body may be allowing it to work better now.

Unless you are getting bad side effects from Urso I would think it’s wise to stick with it. If you are having bad side effects you can discuss options with your specialist.

Urso is interesting as it apparently helps with gut dysbiosis among other things, and it was correcting gut dysbiosis and intestinal permeability that shifted my lab results. This was found over a 3 month trial period where I had advanced gut microbiome testing before and after the supplement and dietary changes. It’s like the Urso just needed some help, but for many it controls their PBC very well. My recent Fibroscan put my liver in the normal range but did find possible evidence of mild fatty liver. Overall though I seem to be much improving now.

[2bear in reply to Turquoise2075]

hi what supplements did u take that u found helpful

[Turquoise2075 in reply to 2bear]

Hi, the supplements I was given are inulin, one called PaleoFibre, sodium butyrate, extract of Silybum marianum (milk thistle), slippery elm, enteric-coated garlic tablets and the probiotic Lactobacillus rhamnosus.

These were given based on my specific microbiome test results, so might not be the right combo for the next person.

My butyrate was low which can be a sign of fibrosis in PBC. It has now increased. The goal is for the body to make its own butyrate, but the idea of the supplement is just to help it along. The garlic helps with butyrate production too.

My digestive system works much better and a number of symptoms have disappeared, including dry scratchy eyes, debilitating fatigue levels and most of the itching. I also get very little upper right quadrant pain now. I used to feel it constantly before and mostly I don’t now. But I think in my case staying on Urso is a good idea and necessary as I know I wasn’t heading in a good direction before things turned around. I feel like the PBC has kind of gone into remission and my goal is to keep it there.

[2bear in reply to 2bear]

thank u so much turquoise appreciate

[Turquoise2075]

P.S. I just realised in the above message I wrote ALP and AST. That was meant to be ALP and ALT. Sorry, getting my As mixed up!

[Grams2020]

I was diagnosed with suspected PBC but not confirmed in 2020. AMA positive. Slightly elevated ALP and GGT. Fibroscan showed no fibrosis or fatty liver. Started Urso 500 mg. immediately. Stomach issues so dr. suggested taking every other day until stomach issues settled down. They did but every time I started taking it each day stomach issues returned. Dr. said keep taking it every other day. My LFT’s dropped significantly and have never elevated. My last appointment in November he hinted at possibly taking me off Urso bcz my LFTs have been normal for 2years with taking low dosage Urso every other day. That will be determined in Nov 2023 based on this year’s LFTs and fibroscan.

I’m vegetarian but eat fish. I exercise daily with yoga, running and I meditate daily. I’m 67 years old. I’m fairly active.

So maybe it can be controlled without Urso? I’ll find out in November. Will post update then.

Cheers all!

[st-Jude in reply to Grams2020]

that would be amazing to only take Urso every other day

[pbc-zero]

I only take milk thistle and my numbers were back to normal last check. I was unable to tolerate urso and the side effects of Ocaliva were so frightening that ... I just can't!! Exercise is always, always a huge part of health for your vital organs. An extended period of daily movement is my golden rule. Remember, anything that comes in contact with you, absorbs and filters thru your liver. Cleaners, lotions, face creams, perfumes, etc are toxins. Limit those and your liver will thank you! Eating healthy is my problem as convenience is a driving force for me. Got to work on that part of my health but praying for good test results coming up soon. I hope the best for all of you as well!!

[st-Jude in reply to pbc-zero]

no Urso and good numbers?

[pbc-zero in reply to st-Jude]

Yes

[FarahS in reply to pbc-zero]

hi PBC-zero, I’m interested in how you managed this without urso. So no other medication? Also when diagnosed were you early stage, and maybe your ALP and GGT weren’t that elevated to begin with?

I have also made HUGE diet and lifestyle changes in a hope it will improve my numbers.

[pbc-zero in reply to FarahS]

My numbers were not terribly high, as some, and it was discovered very early. I had no symptoms, just routine blood tests. Many things were ruled out. I was diagnosed with a liver biopsy.

[FarahS in reply to pbc-zero]

Hi PBC-zero,

Do you mind if I ask what your ALP and GGT numbers were when you were diagnosed?

My ALP was 153 and I got it down to 110; my GGT was 205 and I have it now to 133, all through major diet and lifestyle changes. My only symptom is the chronic urticaria and angeodema, and recently my Albumin is slightly low….so I’m interested to know if this is possible to maintain healthy levels at this stage of PBC without meds?

[pbc-zero in reply to FarahS]

You really need to address those with your Dr. Everyone is very different when it comes to all the "numbers" that you need to watch. I have no problems with those.

[Kakey in reply to pbc-zero]

pbcfoundation.org.uk/newly-...

[Kakey]

Some might like to read this, or refer to it. It is lengthy and wordy though.

bsg.org.uk/wp-content/uploa...

This is an excerpt, please excuse the random numbers, I'm not sure what happened there.

Table 5 Frequently encountered clinical questions

Frequently asked questions

Current opinion

Can patients with PBC take exercise?

It is perfectly safe to take exercise with PBC and in fact there is some pilot trial evidence that exercise therapy is helpful for the treatment of fatigue.213 Patients with PBC frequently lack confidence to undertake exercise so support can be useful291

Do patients with PBC need to follow a specific diet?

Expert opinion is that the vast majority of patients with early stage disease, and who are not overtly cholestatic, have no dietary problems and can eat a normal healthy diet. Where patients have cholestasis or one of the associated malabsorption syndromes, fat malabsorption can be an issue which can lead to nutritional problems.292 In this group, fat-soluble vitamin deficiency should be considered251 293

Should patients with PBC give up smoking?

General advice for health is to stop smoking. There is, however, also specific evidence in PBC to suggest that smoking is more prevalent,294 and may be associated with more aggressive disease.122 There is therefore a specific rationale for patients with PBC to avoid smoking

Can patients with PBC drink alcohol?

There is no evidence to support an association between either the development of PBC or disease severity, and expert opinion is therefore that there is no reason why patients with PBC cannot drink alcohol within accepted safe limits. Patients with advanced liver disease are however advised to abstain from alcohol

Are any drugs contraindicated in PBC?

As with any liver disease, expert opinion is that caution must always be applied in therapeutics; however, there are no specific concerns regarding drug toxicity in PBC per se

Is PBC associated with cancer risk?

This issue has been extensively looked at295 and the only malignancy associated with PBC is HCC in patients with advanced disease296 (with a particularly increased risk in UDCA non-responding patients and in male patients.297 Previous concerns regarding breast cancer risk have not been substantiated in well-designed studies298

Is PBC inherited?

Daughters in particular of patients with PBC show a slightly increased risk of the disease, but this does not represent Mendelian inheritance.37 It is thought to represent either shared immunogenetic susceptibility or, potentially, shared exposure to environmental triggers. The lifetime risk of the daughter of a patient with PBC in the UK developing PBC is less than 1%, and on this basis screening is not routinely recommended

Is cardiac risk increased in PBC?

This has been extensively explored and there is no robust evidence to suggest that cardiac atherosclerotic risk is increased in PBC,299 300 despite the elevations

in cholesterol seen in the disease. Patients with PBC

do, however, have a normal level of cardiac risk

and appropriate cardiac preventative screening and intervention is recommended. Differential cholesterol assessment is necessary because of the HDL hypercholesterolaemia of the condition and the smoking association is key

Is PBC transmissible to others?

No; although infectious agents have been postulated

as triggers for disease, there is no evidence that shared exposure triggers disease and patients should be advise

[Eppy in reply to Kakey]

thank you Kakey most interesting and reassurance

[Jlruggie]

even with Ursodoil in 20 years my ALP, AST and now bad cholesterol haven’t been in normal range.