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Hi, my name is Linda Villanova and I'm from Uxbridge, Ont. Canada and I'm 55.

Diagnosed with PBC Jun 2015. Came back from vacation in Feb and got shingles then back to back chest infections and fatigue which propelled me to my Dr who did blood work, and more blood work and then off to Gastro guy - and surprise! I am on Urso which reduced counts from 690 to 297 in 3 mths, but when I went back for appt 3 mths later #s were up to 308 (pooh). So now I have bloodwork monthly for 3 mths and then back to Gastro guy - unless it starts to rise - which means a biopsy and possible steroids. Not thrilled about either. I have fatigue but not to the extent I've seen on many posts here. Luckily I can work from home a couple days per week which helps. No itching or jaundice. I have had the Fibro u/s and Gastro guy said there is damage but the liver can regenerate so he's not too bothered. Don't know the number. He also said coffee is good for the liver so to drink 2-3 cups/day - anyone else hear that?

The frustrating part seems to be the lack of info or direction with what I can do to help myself. I do yoga 2x/week, walk the dog etc and am able to pretty much live normally with some bouts of fatigue- I just go to bed early or get cranky :)

Miss my wine !

So glad to have found this site and people that understand.

16 Replies

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  • Hi Linda, I am 55 too and was diagnosed with PBC in August 14. It took over a year for my ALP to return to normal levels. Unfortunately my AST is 115 now so they are talking about a possible biopsy to see if there is any evidence of autoimmune hepatitis. I feel well thankfully and do not suffer from itching, I get tired but not sure if that is just my age!

    I do yoga and walk the dog daily. I am trying to eat a healthy diet and lose a bit of weight. I have read that coffee is good for the liver and just in case that is correct I have a couple a day! Miss my wine too.

    This forum is very helpful and is invaluable when you need any advice or are worried about something. Nice to hear from you.

  • Sounds like we have a lot in common! Thanks for the info on coffee - I thought that was contradicting my GP but guess this is different. Gastro guy said it could be a yr - fingers crossed it's not a secondary condition which he warned me about when I first saw him. Assume that's what you may be up against too. Please let me know how you make out...such a strange disease

  • Hello LindaVillaNova.

    I once posted on here regarding an article that was in WDDTY (What Doctors Don't Tell You") that stated that coffee drunk moderately (around 2 cups per day) was not bad at all for the liver. Can't remember who published the article as it did state but it did feature in WDDTY (this being originally a paper magazine but it is also now online).

    My LFTs (liver function blood test) started to come down following diagnosis Dec 2010 (I was 46 at the time) and then after a year I had a bit of small climb and since seems for me that 6 months I can do a bit of climbing and then the other 6 months coming back down again. I have never had my LFTs back to normal nor another blood test the GGT that tends to be taken with liver disorders. WE are expected to have abnormal LFTs in PBC but I think that it often is a case of needing more time to actually see how the LFTs are actually performing with the urso. You started off with drops in the LFTs so that is a good sign.

    I am in the UK and was diagnosed with 3 factors - the LFTs being abnormal, itching and at the time fatigue (the former has altered over time, now tends to be confined to later at night, the latter vanished sometime in 2011) and I wsa then found to have positive 'high titre' of antibodies AMAs. A biopsy wasn't necessary after diagnosis and quite frankly from what I have appeared to have learned one now wouldn't alter the treatment and it can be said that the biopsy area isn't necessarily an accurate picture of the liver as a whole, it can be notso good in one part, perfectly healthy in another.

    I've not as yet developed any further symptons I know of with the PBC and I just go off how I am. There is the PBC Foundation based in Scotland and also another called Liver North that is in England that I have found quite useful. If you make yourself a member of the PBC Foundation you can read newsletters and their binder online and the Liver North has their newsletters past and present online without being a member. They do a free dvd all about PBC (I got a copy several yrs ago) and you fill out the form online.

    livernorth.org.uk/

  • Thank you! Yes I have joined he Foundation as well. Thanks for the info and Glad to hear you're in 'maintenance' mode. Strange disease - rather like wrangling cats:)

  • Hi Linds

    Reading your post has me wondering what dosage of Ursodeoxycholic u were taking to reduce your blood test result?

    I have just been diagnosed with PBC and it's helpful reading everyone's posts about coping with it.

  • Oh sure 500 2x/day

  • Hi Linda, I'm from Wasaga Beach, Ontario, also 55, and was diagnosed with PBC in 2013. I recently posted info I'd just discovered which is the fact that we have a PBC Society in Canada. Even after having numerous conversations with our Liver Foundation regarding my PBC, and seeking guidance for it, I was not informed about the PBC Society. I'm unsure of what they offer but am looking into it, meanwhile, I love this UK online forum and will continue to participate. They are most supportive, infirmative, and caring.

    I am in Newmarket once or twice a month if you would like to meet for coffee.

    Take care

  • WOW - isn't it strange we get little to no info from our own Drs?

    Yes I would love to do coffee sometime and I do shop at the mall in Newmarket from time to time. What's your name?

  • My email is cj_waters@hotmail.com,

    Jane

  • Hi Linda! Welcome!

    I had read on the internet that 2 cups of coffee per day could be good for you. Its good to know that a doctor recommends it too. I read somewhere that it is rich in antioxidants and has been shown to help to reverse fatty liver disease and slow down the progression of chronic liver diseases.

  • Awesome! Glad to hear that!

  • Hi Linda, as seajeanie from Wasaga Beach mentioned we have a Canadian PBC Society. We have members right across Canada. We work with the top PBC Researchers and Doctors in Canada who continue to search for causes and treatments while striving to find a cure.

    We would love to send you some of our material - you can reach us email at

    info@pbc-society.ca

    We have regional groups that get together for coffee or lunch. Let me know if you are interested and if you end up meeting seajeanie I'd love to join you!

    Visit our website pbc-society.ca (soon to be modernized).

  • Absolutely!

    You should send a card to all the gastro docs to give to newbies - may help with the shell shock of the diagnosis. I didn't get anything when I left except a prescription and advice to only have 1 glass of wine socially/week...

  • That's more than I received! I agree with your idea of an info card for docs to hand out. My doc didn't even look me in the eye.

  • Hi, LindaVillanova! I had very little info when first diagnosed 10 years ago, in fact was mis diagnosed with PSC, but was put on a Urso anyways. My advice is to have a consult with a hepatologist ( bunch of them in Toronto-- big liver centre there) , your gastro Doctor shouldn't mind-- if he does, get a different one! These super- specialists maybe will see you in conjunction with your gastro Doctor .. In any event, try to adopt liver friendly habits, certain foods should be avoided, careful with supplements, booze is out or just very, very occasionally, lotsa water, low fat diet. My gastro guy told me to get Hep A & Hep B vaccines, flu shot every year. Even tho you just had bout with shingles, should you maybe get shingle vaccine? Most important--- get copies of every test, blood work, report , biopsy, every time you see Doctor, keep a book of these results so when you see a new doctor or clinic, whatever, you have the information they need, you have to get familiar with the terminology--- it's not hard, but very important. Do you have positive AMA's? --anti mitochondrial antibodies? What was in the blood work that led them to this diagnosis? This is an auto- immune disease . Get thyroid checked regularly, watch out for dry eyes, dry mouth. (. Dexa scan for bone density usually done more often for PBC patients ,(every 2 year), blood work for fat soluble vitamins(A,D, E, K)-- malabsorption sometimes an issue, When you see the hepatologist ,be sure to have your questions written down so you don't forget. Lots of PBC patients can find stamina an issue---have to pace yourself . Exercise like yoga, tai chi, Pilates, very good for the immune system. There are very reputable websites; mayo clinic, Cleveland clinic, pub med, nih, clinical trials.gov. for information. Re liver biopsy.......I had one, frankly wish I had seen a hepatologist BEFORE I had it . This is not a well known disease even amoung the medical professions, you have to become knowledgeable about your situation, blood work results, scans, etc , so that you can make the best choices, ask the right questions about & for your medical care, good doctors will appreciate your participation. I have discovered that my numbers (LFTs & other markers) fluctuate over a period of time , I remember it took about a year on Urso for my original numbers to settle down. Takes a while to absorb all this stuff, don't feel overwhelmed, I find myself nodding in agreement to many of the postings on this site & it is a comfort to read the posts of fellow PBC people. Best Wishes!

  • Thank you so much for that advice! I was wondering about the Hep shots - thought it odd neither my GP or gastro guy suggested them - and yes I will be getting shingles shot (have to wait 1 yr after having shingles before you can get it - so next mth)

    Appreciate the info, Thank you!

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