from Canada

I am writing from Canada and after a year of testing, been diagnosed with PBC. The specialist here knows very little about the disease and has told me there is no known cause or cure. I began taking Urso seven months ago, along with some pills to help me sleep without itching and some more to do something with the bile. I found I was sleeping about 20 hours a day and felt fatigued all the time. I could not get an answer from him as to what stage I was at. When I asked my family doctor, he read the report and the specialist didn't say for sure it was PBC. He sent me to another doctor who has started me on 50,000 units of Vitamin D a week.

To make a long story short, I have stopped taking all this medication and stopped going for weekly blood work. I cannot take all the tests and probing they are doing on me. I ended up with no sense of taste and sleeping. While I was tired before the medication, at least I had a quality of life.

Now I am not sure what to do or what will happen. I read this website all the time and it has helped a great deal. I cannot find a doctor that specializes in PBC here. I live in Hamilton, Ontario.

If any of you have a recommendation, I would be very much appreciate it.

23 Replies

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  • Hello Dianneblake.

    I started itcing early 2010 when I was 45. Had fatigue at the time but never thought anything about it due to working hours then. I was found to have abnromal liver function test (LFTs) and had various bloods to rule this and that out and it was then said I had a problem with my liver. Had a scan of liver and surrounding organs several months later and was found to look pretty much normal.

    Itching continued 24/7. I saw a consultant at hospital start of November 2010 when I was 46 by then. By early Dec I was diagnosed with PBC and started on urso.

    Due to it being found I had antibodies known as AMA (anti-mitonchria antibodies) along with abnormal LFTs and also another blood test the GGT too (used in liver problems) and 2 symptons at the time I was diagnosed with PBC. I have never had a biopsy as the hospital consultant was not in doutb as to a diagnosis.

    Itching slowly started to alter over time. I now tend to itch at night and often have broken sleep due to it. Fatigue for me vanished at some point during 2011 but I also think that was part due to taking urso and improved bloods and also making a few changes to my life.

    I know in America it seems norm for anyone to be diagnosed with PBC to have a biopsy if they've not had one for diagnostic purposes. In the UK it isn't the norm unless a doubt about diagnosis. A biopsy is said to be used for staging of PBC but I am not interested myself. I also think that the small sample of liver that would be taken might not show an accurate picture of the liver as a whole as certain parts could be worse than others.

    Certain medications can have an impact on the liver and the bloods. I've so far not requested any medications (normally it is Questran (or colestryamine which I believe is the generic) that is started as a first line for the itch. Seems it works for some, not others.

    I was sceptical about urso in the beginning due to the factr I hadn't had any prescriptions from a doctor since 1999. I always avoid if possible. I had a few side-effects in the early days of the urso (heartburn, a bit of tunny bloating and thought the itch was worse) but my bloods started to improve quite drastically in the early days with urso so I continued.

    Urso tends to be the only licensed medication to have for PBC. Said to improve bile flow as with PBC we have a compromised biliary system. With this improvement it is thought to help slow down the progression of PBC. It does seem from reading this site over the last few years now that PBC can vary greatly from one person to another. Some it never seems to alter, others find they are progressing.

    My consultant said after diagnosis that he reckoned I'd started with PBC a 'few years prior'. I go with how I feel and decided long since I'd take everything as it comes as those things might never be so meanwhile not worth worrying about them. I enjoy life as much as I can now. I do feel the quality of my life is impaired somewhat due to the itch at night. I find I cannot sit still for very long come early evening onwards as I start to feel quite prickly so I seem to be on the go most of the time. There are a few things now that I know I'll never probably do again (go to a movie at night for eg) but on the whole if I didn't have the itch I'd think I was quite normal.

    Have you just tried taking the urso and seeing how you feel. I know taking urso for me things didn't improve rapidly, it probably took me over a year on urso to feel like normal again.

    Urso unfortunately is said to perhaps improve on the itch but not make it go away though I have read of one poster to this site who said hers vanished on urso. Mine hasn't as yet and doubt it will. Fatigue is something else too that urso doesn't seem to be able to really improve on.

    There is the PBC org the American site for PBC but not sure if anything like that in Canada.

    If you check out the Liver North website (that is in the UK) they can send you free of charge a dvd all about PBC if you fill out details online. They have newsletters you can look over online. There is of course the PBC Foundation as you are more than likely aware being on this site.

    Hope you find some definite answers that you are after. Even though we have PBC at least with answers you can start to come to terms with it all and then get on with life. I have been itching now for 5 and half yrs., diagnosed almost 5yrs. I often wonder myself these days what it was like never itching!

    livernorth.org.uk/

  • Hello Peridoy..... My Mom was from Newcastle Upon Tyne World War 11 survivor!! Here in The States there is a new Med for PBC very very effective in trials but being pushed through fast by our FDA.,......Intercept Pharmaceuticals New York NY I am sure they will have in Europe It's called OCA please contact Intercept Pharma online for info last I heard it is 1 to 2 years away from mass market or maybe they have Clinical trials in UK.... Good luck and God Bless Be well

  • Hello mollymom and thank you for the input.

    I have heard and read about the OCA trials and one thing stood out that in some participants their itching got considerably worse and it was noted about the itching even though it apparently gave better blood work for PBC.

    I have been taking urso now since Dec 2010 and I know at the moment I am not for wanting to actaully swap over to a different pharmaceutical due to the findings re itching on the OCA trials.

    I believe that in the UK when it is marketed as it is said to be so next year at some point all being in order (I have read in a recent newsletter from one of the liver charities) that patients who are non repsonders to urso would be the first to start taking the OCA.

    I had initial side-effects when I first started taking urso back in Dec 2010 and then I encountered again when the original urso I took was withdrawn and I had a different pharmaceutical company's. At present I don't want to switch as things to me seem on an even keel despite having this itch at night.

    I will certainly keep on checking back re the OCA and if it does prove that it might be a better alternative to the urso and it is being prescribed I would then certainly do a switch.

  • Yes I've heard about the itching with OCA but in my case I would rather be alive and itching then not here...URSO not working worked for first 3 years though so I am grateful for it. I respect your opinion , and, as we all have separate experiences with PBC I wish you good health.

  • That is exactly right mollymom....With all due respect to Peridot I think she forgets that as non responders to Urso we were facing a blank wall until the advent of OCA. My LFTS sky rocketed after 7 years on Urso and it was only that I was lucky enough to be recruited into the OCA trial that has seen ALP and GGT reduce significantly......a fact for which I am very grateful......There are nearly always side effects with medications but surely the focus should be on whether the drug being trialled achieves what it set out to. The answer with OCA seems to be a resounding yes. This is also wonderful news for those who will be diagnosed in the future and require more than Urso.

    Hooray for research !

    All the very best mollymom

    Karaliz

  • Thanks so much continued good health

  • Hi Dianne, for itching try taking cholestyramine Light powders - research on Internet and get GP to give to you - works well for me and from time to time I get terrible itch. Find a hepatologist - a hep man will know all about PBC. In my opinion best thing you can do for yourself is don't drink alcohol, cut down on fats and carbs, cut out sugar and take exercise - it's good advice for anyone, but for anyone with poorly liver it can make enormous difference to how you feel. Now I've just got to take my own advice! I try. Best wishes x

  • Hi Dianne

    They usually biopsy for a true account of how much liver damage there is. I've had one every 5 years. Fortunately I do not suffer with itching but do have extreme fatigue. I take Urso every day to slow things down, that's about all you can do re medication.

    Be mindful of what other meds you take as I found out, certain painkillers, antibiotics and even some supplements can send me yellow!

    I've been diagnosed for about 12 years along with coeliacs and have just acquired inflammatory arthritis, our immune systems ain't what they should be I'm afraid.

    You really need to push for an expert in this field, although there is no cure, it does help to have someone reassure you that all is well and monitor the situation.

    Good luck with your quest x

  • I was diagnosed 5 years ago and not a day goes by that I don't think about it but always take the urso. It took a long time for system to settle down and not feeling sick but if that is what keeps my liver ticking along then I take them. Please try the Urso again, maybe cut down on the dosage and increase it over period of time. I am sure that diet is the key to helping, you have to remember that everything that you eat/drink goes through the liver and your liver is damaged and can't process everything as it used to. You need to give up alcohol, little fat, and eat healthily and use lots of creams on the skin to soothe the itch - mine eventually did go away.

  • Contact the pbc foundation, they will be able to give you some sound advice. If you have been diagnosed with pbc then I would strongly advice you to continue with your urso. Generally it doesn't cause any side effects. Good luck.

  • When my sister was diagnosed with PBC URSO was not available......she had liver transplant but sadly passed away at the age of 56.....I am now 71 and have PBC URSO has kept my LFT stable......I take naltrexone for the itch...YOUR DOCTOR MUST KNOW ABOUT PBC TO HAVE PUT YOU ON URSO.....my advice KEEP ON IT!!!!

  • You don't need to give up alcohol and diet doesn't affect the PBC either, of course you need to eat healthily as anyone does. Stick with the URSO it may help, it may not!!

  • I eat what i want and do have a glass of wine with a meal on occasion, I had a problem with my ursofaulk at first and gave them up for a week to settle my stomach out, a lady on here told me to try them with my evening meal so I did, I started with one , then two and then three all at once with my evening meal or straight after, it works for me and my gastro okayed it so give it a try.

    By the way I lived just off Upper James for about 12 months then came home to the UK. XX

  • Please talk to the PBC Foundation straight away.

    The link to their website is at the top of this page, and there you can find the email link and phone numbers to talk to one of their advisors.

    I understand how you feel, but I really don't think stopping your medication, suddenly, is the right solution. You need someone comforting and clued-up to talk to.

    We can help a bit, but we are not experts, and PBC can be very different for different people. Often we can only talk about our own experience of the condition - and quite often it's not that helpful to talk about our PBC experiences, if they do not fit your circumstances, closely - or answer your questions.

    I'm sure the PBC Foundation will be able to guide you to the best PBC help there is near you. Meanwhile, why not send a post to Dollydaydreams and ask if she knows of any PBC societies or other advisory links in Canada.

    I'm sure there will be good help in Ontario, just that - unfortunately - the medics you've seen so far, don't know what it is. Nothing unusual, lots of GPs in the UK have never treated (or sometimes even heard of!) PBC, and even some liver consultants may not have encountered it. My GPs are lovely, and did know a bit about PBC, but they didn't have a clue who the really best PBC people in the UK were: I found that out from the PBC Foundation newsletter, and from asking folk on here.

    I would even consider a second post on here, just asking for people in Canada to send you links to good PBC medics near you. NB don't post at weekends, as people tend not to check in here, so often.

    Take care,

    Gritty

  • Thank you so much. I really appreciate the help.

  • Hi Diane, I live in Canada also (Montreal), have been diagnosed with PBC for about a year now, though they suspect I've had it for several. Am lucky to have a good doctor who seems well versed with this disease. I've had a few scans, blood tests now every 6 months and he has arranged for a fibro-scan, which apparently will help to determine the stage I'm at. Have been on Urso the whole time, but I have to say, I am still getting used to it. I find you have to determine what is the best way to take it..for me, it's one pill in the morning & 2 at night with meals. The fatigue is the worst for me, and bloating. It was also just confirmed that I have Sjogrens as well. This is such an individual disease, but the pbc foundation will guide you. I find just coming on here everyday & reading posts from people who understand and 'get it' helps. I don't post often, but thank you fellow pbc'ers for making me feel a part of something, fir the understanding, advice & occasional giggles! Give yourself some time to adjust and never be afraid to reach out.

    Cheers!

    P.s. After almost a year on Urso, my bloods were much better.....

  • Hi Diane, Please reconsider taking the urso and see if you can be referred to one of the big liver centers in Toronto, think it's at Toronto Western Hosp , I know the liver transplants are done at Toronto General, so there are doctors at those 2 centers that specialize in Hepatology. Perhaps they have support groups that meet which might be helpful ( closer to home ) It sounds like your doctor is not communicating with you very well , doesn't sound like you understand what they are doing ( weekly blood work!?!?) or the reasons why. Get paper copies of your bloodwork results, scan reports, make a list of your medications, prescribed & otc for your own records and any new doctors you meèt and impress upon the doctors how unhappy you are with the current state of affairs. Don't give up! All the best to you.

  • Maybe contact the Canadian Liver Foundation for Dr... if Canada has a Liver Foudation they must have google PBC Doctors or Canadian Liver foundations... hope this helps ask your primary doc or ins provider Good luck to you and good health to you always

  • Hi Dianne I read your post the other day and by sheer coincidence received an article from my doctor which was published in the British Medical Journal. At the end of the article it has a list of useful resources for patients and health professionals, one of which is Canadian PBC Society (www.pbc-society.ca) They can be contacted via

    info@pbc-society.ca

    Hope this is helpful. Take care x

  • Hi, I live in BC and I have been very lucky with my Dr's. Don't give up keep looking for that Dr that know about pbc. I am sure there are liver specialists in your area.

  • Fatigue is reported to be the number one complained side effect of PBC. Although there is no connection as to why. The disease itself offer very little to almost no answers as to the cause. I stumbled across this today and hope it can help answer some questions you may have. liverfoundation.org/downloa...

    When I was diagnosed with PBC, my liver was completely cirrhosed. I was at a local hospital and my family was given 2 options of where I could be transferred. (I live in Florida, USA) I was given the option to go Shands hospital in Gainesville Florida, or Go to a hospital in Boston Massachusetts. Not sure exactly where in Canada you are in terms of distance from the U.S. but that is always an option. However, the U.K. (Where this wonderful PBC foundation is located) seems to have so much more to offer. Do not give up, the hardest part (for me anyways) was accepting what I was diagnosed with and accepting the fact that is have to be on medication for the rest of my life. I am on prograf and cellcept. I often wondered why so many others were on Urso, but it's because the Prograf is for after transplants (which I wound up needing, because of the stage my liver was already in) Urso is used to help slow the process of the disease and helps move bile out from the liver and into the small intestine. (Most of this info is in that link I provided)

    Best of luck to you, and please, do not give up. I know how frustrating it is when you expect your doctors to help you understand what is going on inside your body and then they have no answers. There is a lot of information, advice and support out there. Message me if you ever need to vent or just want to talk. I went through everything (diagnosis to transplant) within a year and a half. It was very overwhelming and I could barely process what was actually going on. My case was unique in the fact that it was progressed as far as it was when it was detected and my age, (I was 20).

    Again, best of luck to you, and don't give up!!!

  • Hi Dianneblake,

    I live in Toronto ,diagnosed and been on Urso for year . There is liver foundation (www. liver.ca) in Canada/ Toronto .Maybe they can give you some doctor's name in Hamilton who is spec . in PBC . Toronto Western Hospital has Liver clinic and you can go there for other opinion . I think you should stay on Urso until you check with hepathologist . I also hope that Urso is slowing progress of PBC . At least my lab tests are now ok .

    This site is also great and helped me a lot . I was very depressed when I've got diagnosis but all comments and support from here really helped .

  • Please check out our website: pbc-society.ca

    you can see a long list of Q and A from Canadian Doctors specializing in PBC treatment and research. Also go to the contacts section of the website. Phone the main number - someone can help you - at least listen to you! Glad I saw your posting because there are so many people out there just like you. We have a great group of members who get together - just to have lunch- or share stories. I was diagnosed in 2012 - early stages so the URSO has brought my bloodwork right in line. Being part of a group really has helped especially with the fear of the unknown. Wishing you all the best.

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