Lots of questions to ask

As I am new to this and only being diagnosed a week ago with pbc. I have lots of questions to ask. Some of which I am writing down ready to ask my consultant when I next visit the hospital. I have yet to have scan in 2 weeks then a follow up appointment for the results in 6 weeks. In the meantime I am reading what my consultant has given me to read and also learning lots on this site from all of you. So has anybody heard of " Propolis" It is a natural resin found in the buds of trees which bees then collect and use to disinfect their hives and its apparently very good for the immune system of bees and humans ! . Then it is collected from the hives and produced as an alternative medicine to help in our immune system.. However I have been told this by a bee keeper.and read up on it... When I asked my GP he was reluctant and said he cannot comment as both propolis and milk thistle has not been medically proven nor backed up by the medical board. Also these products bought from health shops also contain other additives and are not therefore pure products. Does anybody else have any views on alternative medicines or therapies. I would not dare take anything unless it has been recommended from either an expert or somebody else who has pbc. Also what are the best foods to eat and what to avoid. I know to avoid sat fats and salt. Also I hardly drink alcohol anyway , special occasions only, but is this now out of the question ? Even though I have never been a fan of fruit and probably only ever eaten a handful of fruit in a year, I am now forcing myself to eat it. I have also noticed you all talking of bilibrium levels ???? that I dont know anything about but now know I must ask what my level is and what is dangerously high, high med etc. When you get pain what do you take ? Is paracetamol ok ? I see Ibruprofen is a no no .. comical really my last GP had me on that for almost 4 years.... I suppose I can join the gang on asking " Why me ? How did I get PBC ? " Also why is it more common in the UK than the rest of the world ?

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  • Sand, I'm not a doctor however the amount of reading I've done on this subject astonishes my doctors, including my doctors at the Mayo Clinic. As I stated earlier, my mother was diagnosed with stage 3 PBC in 1987 and is still alive today, I was just diagnosed with the same about a month ago.

    Eastern Medicines use of Bear bile (natural Ursodiol) was first recorded in Tang Dynasty, 659 A.D. Ursodiol was derived and used successfully from live bears for millennium and western medicine found it had astonishing properties for treating specifically PBC, hence Western medicine synchronized the chemical compound in bear bile the 80ies and we use it today. There is one drug for PBC, but it's a damn good one, it's important you don't get all upset and try all kinds of crazy alternative medicines, all my doctors told me this, it's important you stay strong of mind and body and continue doing what you're doing, odds are ursodiol will do wonders for you has it has by dropping my bilrubin from 5.9 to 3.0 during my first 2 weeks of use.....................Stay cool we all are going to get through this together..

    Abstract

    Bear bile has been used in Traditional Chinese Medicine (TCM) for thousands of years. Modern investigations showed that it has a wide range of pharmacological actions with little toxicological side effect and the pure compounds have been used for curing hepatic and biliary disorders for decades. However, extensive consumption of bear bile made bears endangered species. In the 1980's, bear farming was established in China to extract bear bile from living bears with "Free-dripping Fistula Technique". Bear farming is extremely inhumane and many bears died of illness such as chronic infections and liver cancer. Efforts are now given by non-governmental organizations, mass media and Chinese government to end bear farming ultimately.

    Pharmacological study of bear bile

    Modern pharmacological research showed that bear bile has the following pharmacological actions: (1) antimicrobial and anti-inflammatory effect, (2) anti-hepatotoxic effect, (3) choleretic lithagogic effect, (4) anti-liver fibrosis, anti-tumor, anti-pyretic and sedative effect, (5) anti-convulsant and analgesic effect, (6) lowering lipid and hypotensive effect, (7) anti-tussive and anti-asthmatic effect, (8) improving eyesight, (9) anti-stress and relaxing effect [22,31].

  • Sandy, don't drink, watch salts and fats and don't mess with crazy diets and alternative BS, it's important to keep weight on, stay strong, if you know you blood levels it's good to watch those before you begin ursodiol and after, this is were you can see the improvement, my mother had completely normal reading within 6 months of use, I believe nearly 80% of people on ursodiol improve their liver readings, this is the best of Eastern and Western Medicine..

    Ursodeoxycholic acid (UDCA) is currently used in clinical practice worldwide not only for the dissolution of cholesterol gallstones, but also, mainly, to treat patients with chronic cholestatic liver diseases. However, the mechanisms of action of UDCA at the hepatocyte and cholangiolyte levels are still not completely understood. Much progress has been made from the first concept that the only mechanism of action of this bile acid was its choleretic action. One of the most fascinating mechanisms of action that was evoked for UDCA is its immunomodulating and anti-apoptotic action, which could, in part, be explained by its interaction with the glucocorticoid nuclear receptor at the hepatocyte level. Glucocorticoids, whose prototype is dexamethasone, are the major ligands of the glucocorticoid receptor. The biological effects of glucocorticoids are driven by a multiple-step reaction including binding of the steroid to the glucocorticoid receptor, DNA binding, receptor transformation, nuclear translocation and either positive or negative gene transactivation. In this issue of the journal, Weitzel and co-workers clearly demonstrated that the binding of UDCA to the glucocorticoid receptor is unspecific. Therefore, the anti-inflammatory, cytoprotective and anti-apoptotic actions of UDCA should be due not only to the mild interaction with the glucocorticoid receptor, but also to transactivation or transrepression of different cytoplasmic proteins that are involved in the survival pathway.

  • Hi there, I don't take urso because it doesn't suit me. Let your consultant guide you on alternatives. It's dangerous for us to prescribe for each other, we are not doctors or specialists in the field. I always listen and observe and if something catches my eye I will discuss it with my consultant who is the expert. I don't bother with the GP because most of them at my local surgery haven't got a clue what PBC is. I will have a drink sometimes (my consultant said it is ok). Everyone with PBC is different and has symptons to a higher or lesser degree than others which doesn't go hand in hand at whatever stage they have been diagnosed with. If you are from the UK, I would recommend you contact the PBC Foundation in Edinburgh and get on their mailing list too.

  • Hi Coxy888, I note in your reply you say you dont take Urso as it dosn't suit you, can I ask what you mean by that, I was on Urso for about 18 months and had to stop as it was making me increasingly ill, I told my consultant I couldn't take them as they made me ill and he wouldn't believe me, however, I still don't take them, I have told him so but he didn't suggest anything else,do you take anything for your pbc.I don't really have any symptoms apart from the fatigue, also my LFT's are still ok

  • Just a few ideas regarding the main post:

    - Propolis is not found, as such, in nature, but is a result of resins that bees collect and process. It has a lot of healing substances, among which flavonoids. Generally speaking, it is one of the best things to use on every day wounds (small cuts, small skin infections) and when with tonsilitis.

    *Sandgroundergirl - ask the bee keeper you know about "bee bread" and what it is known to be used for, especially liver related, for your information. There are studies on Propolis and milk thistle as well, just picking out randomly fyi (some of them refer to a hepatoprotective action as well).

    ncbi.nlm.nih.gov/pmc/articl...

    vetmedmosul.org/ijvs/media/...

    hindawi.com/journals/ecam/2...

    New Study Shows Honey, Propolis Flavonoids Protect Liver

    beehealthyfarms.blogspot.ro...

    Obviously, a specialist (in medicine and such natural remedies as well) would be the best to ask.

    PARACETAMOL - officially it is safe, as far as I know, "in a small quantity". But I have come across studies showing that Paracetamol (as well as ibuprofen, but that's no secret anymore) has liver toxic effects. I, personally (I underline, personally), knowing all I know about the liver (and despite active interest, I know quite little), would avoid it if I had a liver problem. I avoid it anyway or try to take it as rarely as possible, only when really with a cold or a headache.

    ALCOHOL - according to many specialists out there, it's a basic thing to do : if your liver is not functioning properly, then avoid as much as possible alcohol. Many say that "drinking like a normal person, 1-2 glasses a day" is NOT an option for liver patients. Now, it's up to each person, what they choose to believe. Again, strictly on a personal note, I would care enough about my liver, if it were affected, and drink as little as possible.

  • *Maybe* your doctor would like to have a look at this - search this on Google please, it is a PDF I cannot copy/paste here.

    Hepatoprotective Efficacy of Propolis Extract: A

    Biochemical and Histopathological Approach

  • I like how you have asterisked 'maybe' Cristina as I doubt my GP would bother to search anything on Google!!

    I doubt my GP would even read the PBC Foundation GP leaflet but I am going to try and see if it will be accepted in person at some point.

    I can't even get the Practice Manager at mine to respond to a letter I wrote first on 5th Nov and then again 22nd Nov (but that is another future posting - see my recent blog)).

  • Hello sand...

    I think we all have views on certain things and it is to me what you think yourself and I know I have to add here, along with medical supervision.

    I tend to be one of these people myself who does find certain things regarding the medical profession a bit odd. You mention that your doctor can't give some sort of go-ahead regarding propolis (of which I don't know much about, except something to do with bees. I do love honey tho'!) and also milk thistle, it stands to reason that they won't as it goes that drugs have to be licensed and on some sort of pharmaceutical list it appears.

    I have Readers Digest guide here to 'natural healthcare' and it also has certain conditions, symptons, as well as certain herbal supplements, etc. The book does state throughout every page that if you have a condition to seek a doctor's advice prior to taking anything. I looked up propolis and found like a previous poster put, it is a bee resin. It is actually, according to this guide I have used for healing skin abrasions. I expect you've not to have some allergy to bees possibly. Royal Jelly is mentioned. Personally I prefer the honey and this yr in particular been buying the Manuka 10+ or 15+ ones. Great on toast as opposed to butter/margarine as less fat and to me a natural sugar.

    Regards milk thistle, I have looked up that myself as I had heard that it was good for liver-related disorders. I have also read that a lot of PBC patients, quite a few contributors to this site also, like myself, take milk thistle these days. This isn't my quote but this guide states that milk thistle 'is one of the most extensively studied and documented herbs in use today' and 'scientific research continues to validate its healing powers, particularly for the treatment of liver-related conditions'. This herb is 'sometimes given in injectable form in hospitable rescuscitation rooms to combat the life-threatening, liver-obliterating effects of poisonous mushrooms'. Apparently milk thistle has 'virtually no side-effects' and 'considered one of the safest herbs on the market'.

    I noted what you stated about certain additives being in these products but at the end of the day as I see it, so does pharmaceutical medicines. There is actually talc as one ingredient in one of the ursos. I know for a fact that my urso (URDOX) that I had been getting since Dec 2010 at diagnose is slightly different as the brand name has now gone from the packaging so I suspect it is the bulking agents in the tablets that caused me to have temporary side-effects similar to when I originally started urso in 2010. I'd not have noticed but for feeling different and then checked the tablets I had got a few wks prior to starting in Sept.

    Now I've always been a great fruit and veg eater but often wonder over the years if that was doing me any good. Fruit and veg can be full of contaminants due to modern farming/ harvesting. I still try to eat plenty of fruit and veg even today. I used to be a social drinker but wasn't one for going out regularly and when I got the first abnormal LFT in March 2010 I just quit any alcohol and never had any since (unless you count wine gums on a rare occasion, ha, ha!) and that does not bother me full stop. (What does is socialising now which isn't much as I clam up thinking and wonder how I'll handle being offered a drink by someone who doesn't know I apparently have PBC. My family have never changed their habits over drinking I have to say.)

    I honestly didn't think I had much wrong with me in 2010 and thought at the time due to overworking and feeling tired and developing the itch it would just go away but obviously never did. (I only itch these days and confined to night-time.) I wondered how on earth I had got it as never had heard of it until 5mths before being diagnosed when I found it in a library ref book. I've gone through allsorts of thoughts over the last couple years but think now I'm just starting to get on living and forgetting as much as I can about this 'thing'.

    I find the mention of painkillers as in paracetamol quite bizarre. Think in the States it is called Tramadol? Paracetamol can actually cause liver damage and tho' deemed safe in small usage in PBC I personally wouldn't reach for any unless it was absolutely necessary. Prior to being diagnosed with PBC I rarely took painkillers unless necessary (always used to reach for the aspirin as back in the 1960's when I was born, here in England as a lot of you will remember we had powders for children that were aspirin that we used to be given. Then over time the powers-that-be in the medical field deemed aspirin unsafe for the under-12's and paracetamol was the 'new' painkiller).

    I do think that with the medical profession a lot of doctors wouldn't give a go-ahead for herbal remedies simply because they are actually informed what to prescribe. The big drug companies have such a hold on what's available and at the end of the day doctors also make mistakes too. I personally don't see a doctor and then leave them to what they actually think. From past experience (my first late husband) ignorance with doctors' views isn't exactly bliss.

  • Some of you are saying you "don't take urso because it doesn't suit me" I'm not sure some of you really understand the gravity of this disease...Ursodeoxycholic acid (UDCA) is currently the only FDA-approved medical treatment for PBC. When administered at adequate doses of 13–15 mg/kg/day, up to two out of three patients with PBC may have a normal life expectancy without additional therapeutic measures. The mode of action of UDCA is still under discussion, but stimulation of impaired hepatocellular and cholangiocellular secretion, detoxification of bile, and antiapoptotic effects may represent key mechanisms. One out of three patients does not adequately respond to UDCA therapy and may need additional medical therapy and/or liver transplantation.

    ncbi.nlm.nih.gov/pmc/articl...

  • I definitely agree with hopepbc here re urso (or UCDA as it still seems to be known Stateside).

    I am against taking medications but took urso at diagnose in Dec 2010 to see what happened. I have undertook repeat bloods at intervals to check and decided I'd keep up and see over a few yrs if there was a pattern (seeing as my GP isn't very co-operative, he thinks words like 'doing fine', 'improved from last time' etc is sufficient) as last yr at this time my bloods started on a slight increase again after a positive start on urso.

    I have had initial side-effects at the start of taking but persevered. I still have reservations about urso being the answer myself but for now I will continue to take urso. I feel positively fantastic currently and have done for some time regardless of having the itch at night.

    The one thing I can't figure out is that one of the side-effects of taking urso can be itching and for me I seem to suspect that urso is not helping any there for me but prior to taking it I was itching slightly worse than presently but saying this if urso is not helping itchwise and I itched before taking it, can't see point in withdrawing to see as I just know that the itch will more likely return to the state it was prior to taking so I won't have gained anything at all!

  • Hi When I was first put on Urso, I didn't notice anything, but a build up after a few months resulted in me having a few side effects which were unpleasant. I had the backing of my consultant to stop taking the Urso. I was diagnosed by accident, many people go undiagnosed for years. I have no idea how long I have had PBC, but I have had the liver disease rash on my chest for getting on for 20 years so assume I have had pbc for that length of tme. I took urso for about a year, so seem to have done quite well without it. If things change, I will review taking the urso after weighing up any pro's and con's with my consultant who is able to discuss what is best for me as an individual. We are all different and respond to urso differently. At the moment, I have good quality of life, I suffer very few symptons and am able to hold down a full time job. I am lucky to be able to do that. I have a good quality of life at the moment and don't want that to change. I respect others opinions regarding the urso and would say in the majority of cases, there doesn't seem to be any side effects and therefore it would be recommended to take it as research has not come up with any alternative just yet.

  • Couple things here, FIRST, itching is a sign of PBC or liver disease, NOT a symptom of URSO, Secondly studies have shown that the itching rarely ends even if the PBC is controlled, Finally, it is said to be a very ominous sign if the itching stops, alluding to the fact the the liver has taken a turn for the worse.

    The prognosis is ominous when pruritus disappears, xanthomas shrink, jaundice develops, and serum cholesterol decreases.

    merckmanuals.com/profession...

    PRURITUS=ITCHING

  • God, hopepbc, you're terrifying me lol :)

  • Thanks everyone for your kind words of advice, concern and support. I am learning !!

  • Sorry Jun, don't mean to, I've simply alway spoke frankly and expected to be spoken to the same, however looked at your profile..."LFT results still elevated but reducing. Weening off steroids and now on azathioprine. Have a good low fat diet and try walking an hour a day. Try to keep smiling"

    You're doing the right things and have the right results, I've always been very scientific and objective and I'm trying to handle this the best way I know how, as I said my mom is still alive and has had stage 3 since 1987, your blood test numbers will be the best indication of how well your liver is doing, how well the urso is working and what you should concern yourself with. My original bilrumbin numbers were terrible and it concerns me, but they were nearly halved by urso in 2 weeks so I'm hoping for the best, like you say "keep smiling", I'm glad I found this place, it's very therapeutic.

  • Hi hopepbc, only reading your comment from 29 November now, don't know how I missed it. Thanks. What I was half joking about was your comment re: the itching stopping and the jaundice. I never had the itch (other than very mild and rarely) and the first symptom I had was jaundice. I've had biopsy etc and now that my bloods are stabilising (on an imuran now) I only have to go back for bloods in a month and consultant in two months so at least less time consuming. Hope it keeps up. Lately for first time ever I am finding some digestive problems, think it may be mix of meds or maybe just out of routine over Christmas, so I won't panic yet. I do hope you are doing well.

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