PBC alternative treatments, such as Livatone

[melbafromelba]

Just wondering if any of you are taking Livatone or similar non-precription medicine for your PBC...and how it is working. I have just been diagnosed and dr doesn't want to prescribe traditional meds unless I have a liver biopsy..which I don't want to have. So thought I would try Livatone...or some similar meds for next 3 months to see if it will get my APs done. Thanks for any input

[Oidra]

I have been prescribed Urso for the last 17 years and have never had a liver biopsy.

I had always assumed that when you are diagnosed as having PBC, Urso is given as the first line of defence so I am wondering if I am out of date with thinking this ? Did your Doctor explain why?

[melbafromelba in reply to Oidra]

For my 1st visit I saw nurse practitioner..who knew less about PBC than me. Of course for the last 2 weeks since I was diagnosed, I have read and read. She said that the biopsy was the only way to be 100% sure..even though I have elevated AP and bilirubin. I have already had ultrasound, mri and mrcp. She stated the test for auto immune disease could have been false positive. My husband asked her why not repeat that instead of subjecting me to liver biopsy. She had an attitude because I don't want liver biopsy. Hopefully dr will put me on within 3 months. I don't have any symptoms yet. Will take the Livatone till then I guess. Really annoying.

[Sachin1234 in reply to melbafromelba]

Why you have to wait 3 months for biopsy? It's a liver issue should be considered as a emergency.. when I was diagnosed my dr. Scheduled next day biopsy

[Rosehip19]

I feel tempted to say 'change your doctor'. Saying you can't have Urso (which most would consider desirable) unless you have a biopsy (which many would consider not essential) sounds to me like blackmail. No proper research has been done into alternative medicine and I would always be sceptical. Good luck!

[Hidden]

I agree with oidra and rosehip19. I would seek another opinion, ive never had a liver biopsy do not intend having one. I've been taking urso for eight years. I always understood the earlier you started on it the better it is for you.

[melbafromelba in reply to Hidden]

Thanks for your reply

[cfsummerford72]

Total agreement. As far as everyone is aware right now Urso and Octavia are prescribed for PBC. Each persons doctor has gone about different methods for the diagnosis. Most often your blood work pattern. My doctor didnt require a biopsy but wanted to know where I was at based on my blood work started elevating in 2012. My opinion if your doctor doesnt put you on Urso then asked to referred to someone with more experience with PBC. Some of of have stated that we prefer a medical university hospital and often have to drive long distances to get to one. But this is a serious matter. Be your own advocate. The quicker you start treatment the best chances you have to slow the progression.

Best of luck

Connie

[melbafromelba in reply to cfsummerford72]

Thanks. For some stupid reason, they set my appt up with nurse practioner who knew less about PBC than me. (I have read alot in last 2 weeks.) I will see dr in 3 months. She stated the auto immune test could have been false positive...but my AP was elevated and bilirubin slightly up. My husband asked her if she thought that why not redo the test since I was having my liver enzymes checked thru blood work anyway? That made sense to us, but not her. I have already had ultrasound, mri and mrcp. Thanks for reply.

[Wocket]

No biopsy here and I was given Urso 5 months ago. My treatment is up to date and my hepatologist diagnosed me from my bloods (something to do with antibodies) I'm sure other people will be able to tell you more than I.

[GrittyReads]

You need to ask your Dr what are the 'exact' terms of your diagnosis for PBC. Also, do you have symptoms of PBC? eg fatigue, itching, muscle and joint pain, brain fog.

If you have definitely got PBC, then - as all the others, above, have already said - the first line of treatment for PBC is to be given Urso: straight away.

PBC used to kill a lot of people, but since the discovery of Urso, it does not do that: now most people with PBC die of old age, or of something else, but that is because they take Urso, or they have Urso with one of the new drugs that help those who Urso doesn't help. But the initial line of treatment is still Urso. I have not heard of the drug you mention.

I would talk to the trained advisors at the 'PBC Foundation' they host this site - link to their website at top of this page. There you find phone or email details to talk to their advisors. Also, their website is a mine of wonderful help and information. However, first, I would also gather all your letters from the Drs, hospitals, and all medical results with your blood tests and so on. So that you can tell the PBC F advisors exactly what has been found.

My only thought to explain your Dr's decision, is if there is some doubt about whether you have PBC or not.

Some people just have AMAs (usually for PBC, that = the AMA 'sub-type' : AMA-M2), but their liver function tests are normal. This can mean that PBC will eventually develop, or you may be one of the 10% or so of people who have AMAs but do not develop PBC. [I have AMAs, have had since 1992, maybe all my life, but still no sign of PBC, although I have lfts checked every year - some people just have AMAs].

However, if your lfts are abnormal in a way that is typical of PBC, but you do not have AMAs, you may be one of the small % of people who have PBC without AMAs. For these few, the only diagnostic test left to confirm PBC - or rule it out - is to have a biopsy. If you are in this situation, I would have the biopsy.

Sorry this is so long, and complex. I will happily explain more, but really: if you do, definitely, have PBC, then Urso is the first line of treatment, and if there is any doubt about what you have, then you need to have it fully explained to you, and have all other possible fully tested for. Maybe it would help to discuss all the results with someone else : eg the PBC Foundation advisors.

Take care.

[Hidden in reply to GrittyReads]

Great information for 'melbafromelba', GrittyReads.

One thing though, melbafromelba doesn't actually say that she is seeing a Doctor, only a "nurse practitioner" (I'm in Australia, and I'm not too sure what a 'nurse practitioner' is, let alone able to prescribe) - could you, or anyone for that matter, explain the role these 'nurses' have within the health system?

Thanks in advance

Di

[GrittyReads in reply to Hidden]

Hi Di,

Thanks for the fact-check. I was busy, but alarmed when I saw the post, and just rushed to skim others answers, then posted. 'Fraid I don't know what a n-p is, either.

Take care,

Gritty

[melbafromelba]

Thanks for your reply. My liver enzymes were up..my AP and slightly elevated bilirubin. I don't have symptoms yet. But from my reading, that is common in early stages. I have already had ultrasound, mri, and mrcp. Stupidly the scheduled me with nurse practioner who knew less about PbC thand me (I have done LoTS of readying.) She said it could have been false positive on auto immune. Husband asked her why not run that test again....since I was having blood work again for liver enzymes. She saw no point in that....but didn't understand why I didn't want liver biopsy. I will take livatone until I see dr in 3 months. If he will not put me on URSO will be time to find someone who will. Thanks for your reply.

[kandiepat]

Hi, isn't liver tone one of Dr Sandra Cabots supplements? She is known as the Australian liver doctor. She will reply to your email if you go on her website and ask her any question. I have done this a few times. I took Livertone when I thought I had a fatty liver pre PBC diagnosis, my enzymes came down but went up when I came off her liver diet. I don't take it now because I'm on Urso. Kandiepat

[GrittyReads]

I don't know where you live, but I think my GP would have prescribed me with Urso if the wait was so long for a specialist, and I had high lfts and the autoimmune factor - presumably you mean AMA-M2. I wouldn't take odd substances.

Sorry I didn't read your other posts where you explain about the nurse-p ... not sure what one of those is. ?? Can't you see someone else? I only waited 6 weeks to see a consultant, and I had normal lfts, just AMAs. Do talk to the 'PBC F' if you can, and read their website. As someone else has said, we have to become our own bst experts, as even many GPs know little.

Take care.

[Jo_Br]

Hi Hidden and GrittyReads a Nurse Practioner in the Uk is a really good person to see ordinarily they have many of the GPs qualities same as your Dr but often have a lot more time to see a patient for ongoing medical health management. They often are way more in tune with patients as they have that nursing background. At my last practice, I chose them over the GP's. Here is some info if you are interested nursinginpractice.com/artic...

However with PBC for me personally, I also would say ask for a referral/second opinion with a hepatologist melbafromelba

I saw my GP and he was brilliant and researched PBC so is informed as I am, but happily admitted he was not best placed to manage it, a NP would be the same. As we all know many Drs and sounds in this case, that if they are not up to date on PBC, have time constraints, or unwilling to read up the correct tests and treatments and knowledge, any progression is going to only impact the patient further.

I also refused two gastro consultants, one put me on meds I did not need and other admitted no real knowledge of PBC but wanted me to have a biopsy and booked it. I cancelled it as I had read enough to know it's not 'for me' going to help with PBC knowing the stage at present.

I along with a huge amount of support from the PBC Foundation with approaching my GP who as I say is open, I got a referral to one hep who retired and then another.

I sound militant but I was terribly nervous about 'going against my GP or gastro guys, 'our lives in their hands' makes you worry about being refused referral and being stuck with somebody you just admitted to doubting. I did it very politely but firmly, my health and the only say I have in it at present is how I am treated.

I think we all need somebody who specialises in liver auto immune conditions at least at the outset, as it turns out I really needed that specialist as my PBC is in a sub group of PBC so even more unknown. This was from a consult via a hep at another location to me.

[SandraS]

My Sister is the nurse practitioner at my gp surgery, I may be biased but she is much more knowledgeable than my gp about my treatment. In saying that neither the doctor or my sister have prescribed any meds for pbc i was sent to gastro for diagnosis and he prescribes all my meds. Not sure where you are but here in the uk biopsy is not routine in diagnosis. I agree with others and get a second opinion. Hope you get sorted soon.

[Hidden]

Thanks for the replies to my question re: 'Nurse Practitioner', GrittyRead, Jo_Br, and SandraS. Now I understand what they are/do - we do have something similar here in Australia in many of the larger Doctor's surgeries. In all my 28+ years with PBC I have never been seen by one so was wondering what their roll was within the context of PBC - here, they prepare patients for simple procedures that doctors perform in their surgeries.

Di

[Belliver]

Hi Melbafromelba; is this doctor a gastroenterologist ? Is it possible to advance specialist appointment to earlier date? Ask dr/nurse practitioner for criteria that they following for diagnosis and just who exactly is going to do the liver biopsy? I'm not a doctor, not trying to give medical advice, but doesn't sound like this doctor / nurse practitioner very professional , get a new doctor & report this one to regulatory medical authorities . I am very shocked that you are treated in this manner.

Regarding 'Livatone', I not familiar with supplement standards where you live, -- I'm in the US & supplements not well regulated here-- Anyways ,I've had benefit of quite a few Hepatologist appointments & they all strongly advise against ANY 'liver' supplement. Try to adopt low fat, liver friendly diet, lots of water, no alcohol , until you see liver specialist , then see what he/she recommends . He will repeat some blood tests & let him know that you leery of biopsy via treatment withholding if you don't comply. Also, be sure to get copies of blood test results & copies & reports of MRI,U/S, MRCP etc for your own records AND to take with you when you see specialist. Good luck !

[Shulsey]

I have known of my having PBC since 2012 & have been on Urso since. Recently, in June, started Ocaliva. I wouldn't advise that you take this Livatone. I have been seeing a heptologist from a university hospital since March due to being at the start of stage 4 with cirrhosis & small esophageal varicies among other issues. My heptologist always says to stay away from such thing because we truly do not know what is in it. Could cause more damage than helping what's already done. I feel you should search for a liver specialist. At least a GI doctor. Someone who knows what they're talking about. Plus they are making you wait for three months, that's plain ridiculous.🤔😳

Stay strong❣️

Shannon

[PBCRobert Partner]

Please contact us.

I have some questions that would perhaps lead to the best opath for you now. I am typing with a broken thumb so trying to keep written replies short.

Happy to call you or Skype, wherever you are.

Yours,

Robert

[e-mail]

[melbafromelba in reply to PBCRobert]

I thought I would see the gastro dr in oct -- 3 mths after i saw the nurse practitioner who was a butt...don't think she knew much about pbc. But then I got a letter from dr this week saying that my liver enzymes were normal the end of july..the prior 2 liver enzyme panels were not -- with elevated alkaline phospates and bilirubin. From what I have read about pbc, they can fluctuate up and down. I don't understand why they just wouldnt check for the auto-immune again...since they ran blood work again anyway. I am not sure if I should call the dr and ask if he plans on putting me on URSO...or just see if my gp will put me on urso. What do you think? You can email me at [e-mail] and thanks.

[Jlruggie]

please let us know how this turns out. Most of are taking Ursodoil because that’s all western medicine will give along with obetecholic acid and fenofibrate to reduce enzymes and fibroses. There’s a clinical trial. That and stop drinking is all western medicine has for us. Liverwell by weliveconscious.com Is my next trial, it’s milk thistle.

[Jlruggie in reply to Jlruggie]

I’ve had 3 biopsies after 25 years diagnosed, stage 3 at 3rd biopsy and I’m only 66. And that’s with Ursodoil and general healthier than most life style. I’m pulling out the big guns now in alternate medicines and anti inflammatories to go back to stage 1-2 fibroses. Liver biopsy huts like crazy and it takes 3 days to recover. Take the least amount of pain pills as possible and use ice and cayenne lemon ginger and greens shots, and a castor oil pack for at least an hour or sleep with it

[gwillistexas in reply to Jlruggie]

I had my first biopsy in 2020 after 2 enzymes were elevated. (Diagnosed in 2017). Stage 2 fibrosis. I had my second biopsy June 26th after being sent to Dallas in May by my regular hepatologist for mri/mre after another hep did a fibroscan in March and said stage 4! I got my report today and pathology report says stage 1. I was so relieved. I have on been on ocaliva since diagnosed. It seems it is working wonders. My biopsy’s have been a breeze. No pain or anything. Went back to work the next day. I’m 68.