My Experience so far with PBC

Hello Everyone,

I just joined yesterday and I thank those that liked and responded to my post.

I've read a few posts from some of you and the responses and although I'm new to this site, I'd just like to tell you of my experience with this disease, so far.

Diagnosed in October 2012 through elevated liver blood tests and then liver biopsy to confirm. Stage 1-2 with a possible overlap of autoimmune hepatitis. (It is unclear if I have that too, but the tests show that PBC was the most prominent and so PBC is treated first to see if there is a good response from the Urso). I was shocked, horrified and scared to death and cried buckets of tears and thought I was going to die in 6 months! I have a super doctor who I trust and who monitors me and tells me not to be such a worry wort! Put on Ursodiol, 900mg daily in capsule form. I take 600 mg in the morning and 300 mg at night. (My doctor said it's easier that way, rather than taking 3 X per day). As I can't swallow pills without a fear of choking, I break open the capsules and mix with vegetable or fruit juice.

The first two years I had my blood tested every three months. Normal every time. Now I am tested every 6 months, plus I see my doctor (he is a gastroenterologist who specializes in liver diseases) afterwards to discuss the results and see how I'm doing. My doctor assures me that I will live a long life and die of something completely different.

I've stopped obsessing over it now, although there ARE times when it gets me down and my imagination goes into overdrive and I wonder if the disease is accelerating. I allow myself to feel that and then it passes.

So.... how do I feel daily? I'm 60, I'm healthy, but I do feel the normal signs of age creeping up now and again, but don't we all? I do get tired and I will allow myself a short nap or sit down with nice cuppa tea if I'm home. Mostly I am, as I am an artist/designer and work from a studio in my home. I do itch, but I also have eczema too, so that causes delightful dry, red, bumpy rashes on the backs of my hands, my armpits and anywhere really! I use a steroid cream when things get unbearably itchy, but mostly I moisturize, moisturize, moisturize.

So far, that's the down side. I eat what I like, and I love to eat! Although a little too much fat and I get an upset stomach. So I watch that. I walk my dog (she's a small dog) every day for 30-40 minutes. I take a Pilates class twice a week. I take a Yoga class every two weeks with the same teacher and some of the same students that have been there for 15 years. It's a gentle yoga with mostly stretching, breathing practices and chanting. A very spiritual and nurturing experience. I am supposed to practice yoga daily, but I don't. It is my intention to work up to that again, as it makes such a positive difference in my life when I do. I also have an acupuncture treatment once a month, mainly for my liver and for overall health.

I take multitudes of vitamins! I always have. After my PBC diagnosis though, I took a list of everything to the pharmacist and my doctor to check that I wasn't overdoing it or that anything could harm my liver. I have my vitamin D3 levels checked every 6 months also, as I did have a deficiency but now all is normal. I have read some of your comments about B12 being affected so I am making a note to have that checked at my next visit. I also take MILK THISTLE SEED in a liquid tincture that I add to my vegetable juice in the morning. I've read a lot about Milk Thistle and it helps improve liver function. I also have a work colleague whose husband has a severe liver disease and they swear by the stuff. My doctor laughs at me about all the vitamins, but he does say that quite a few of his patients take Milk Thistle and also have acupuncture treatments. Whatever works for you!

If I sit down and over think this disease I can get very depressed about it and say "why me?" But why not me? Everyone has something. Or will have. I'm sure I shall be up here asking questions of you all when I have a bad day and I do have them.

Right now, my hair is thinning a LOT at the front and I'm scared I'm going to end up with 12 hairs on my entire head! My first question is: Is it the PBC or the Urso that causes that?

Do any of you have the occasional glass of wine? My doctor says it's okay once or twice a month. I used to love my wine. FYI. When my husband was sick with cancer for three years (about 4 months after my diagnosis) there were times (twice when he almost died and was put on life support) that the nurses told me to go home and have a huge glass of wine and I did! More than I should have. I did confess to my doctor who reprimanded me of course, but said under the circumstances it was normal and my tests were all normal during that time too. Amazing considering the stress I was under.

Anyway, I've written a book. I apologize. I hope I haven't gone on too long. Hahahaha, if you've read this far you're yawning and rolling your eyes!

I now must leave you and cook our dinner. I wish you all good health and I will check on here a few times a week to help in any way I can with newbies or just to join in the conversation. And to ask for help too.

Thank you

22 Replies

oldestnewest
  • I loved reading your story. Thanks so much for sharing. it is very familiar to me and I'm sure many others. it's helpful to know how others think and feel and most of all how we all find ways to strive forward. All the best to you.

  • All the best to you too! Thanks for your response

  • Thank you for sharing your story. I am 34 and have been on Urso for about a year and a half, Stage 1. I have two very young children and on occasion, I'll get scared and depressed about this disease. I like to tell myself that I will live a long and full life, that I will die from something else in 50ish years. Your experience so far makes me feel more secure about my hopes, and reaffirms that it doesn't have to be a horrible outcome. I realize you are only 60, and that you were diagnosed a few years ago, but everything about your future sounds really positive. Thank you for writing this, I really appreciate it.

  • I'm sure your future is positive too! I'm sorry you were diagnosed so young. but thankfully you were, and are now on Urso! Enjoy your life, your children, and take the time to pamper yourself too!

  • A lovely positive post, with the hair loss sorry I don't know the answer I have read other posts about it but have never seen it in the list of symptoms. Except I was loosing my hair long before diagnosis or taking Urso and the reason was/is a mystery but thankfully it seemed to stop now but has never regrown.

  • Thanks! I guess I'll try Rogaine! Worth a shot.

    All the best!

  • I'm not sure if hair loss is a symptom of pbc or a drug reaction. I've never seen it in any official literature, though some people who post her have had it. I don't know if its just an unfortunate thing we get as we get a bit older, but I do know it's a symptom of hypothyroidism, so worth checking that. Mention it to your Dr next time.

    Hopefully it will get better with time. I wish you all the best.

    Take care

    E

  • Thank you! Thinning hair is in my family so that's probably a factor too. Thyroid checked and normal. On with the Rogaine! Hahaha.

    The best to you too.

  • Lovely post, thank you for sharing. I'm pleased you have found this site, its very helpful and supportive, I'm surprised you only just found it.

    I don't have any advice as I was only diagnosed November 15 so its all new to me, this site has been invaluable and kept me sane.

    Welcome to the site :-)

  • Thank you!

  • Same here!

  • Hi Plb21,

    I like your style of writing very open and honest.

    I too have pbc and have been loosing my hair for many years, it's gone regrow not and repeated again and again currently it's very short few bald patches, but I have alopecia as well as Underactive thyroid with the pbc, cannot vouch for the urso as I'm still waiting to be prescribed it?

    Hope all continues well for you.

    Carol

  • So sorry about your hair loss. Have you tried Rogaine! It's an Over the counter foam spray. I'm going to try it. I hope you are prescribed Urso soon. Why the wait?

    Wishing you good health.

  • Thanks plb21,

    I have tried regaine but it didn't work, I used the strong one for men lol.

    I'm currently prescribed eye drops for my hair, as a side effect was that the eyelashes grew, so I'm trying it.

    The wait for urso I really don't know, I have positive AMA test elevated bloods and fatty liver, along with achy bones and joint pain, fatigue and the itching, my GP has only prescribed me citirazine twice a day, he didn't even give me the other tablet which the specialist said I could have?

    I've not had much luck.

    Hope they sort it soon as I'm not due to see specialist again until end June.

  • Make them give urso! It's the only med for urso!

  • Urso is the go-to prescription! Is there some reason you are not on it or if you were on it, why did the Dr take you off it?

  • I've had all the bloods and liver scan ( fatty liver) was not given any other info from either GP or specialist. Urso not given as GP said waiting for specialist to say yes? or no?

    I'm in limbo land, wIting to know what's causing the muscle aches and pains the fatigue which is now getting me down more and positive AMA, I thought conclusive but obviously I must be wrong, others on here were given urso with the bloods and positive AMA, I really don't know anymore, I'm just sick of the no answers and I'm expected to get on with things like normal when I don't feel normal anymore. I'm only part time worker but just doing one pedicure had me laying around for hours feeling as though I had done a whole day's work. Sorry I'm just not feeling myself at the moment.

  • Thanks for your post. I seem to come in here now and then and read what others are feeling because it does help. Yesterday I suddenly got exhausted. My dear hubby kept on feeling my forehead for fever and all I could do was smile and say - no it doesn't work that way. I'm not sick sick, which in itself sounded daft but what can you do. I am in my 60's as well with my second autoimmune disease, which I am told is related to hashimoto's thyroiditis. I had parathyroids removed and part of thyroid - gained 40 pounds a year later and managed to get 25 off again. Right after that - 5 years later although my blood work suggested something was happening for 3 of those years and the doctor did NOTHING! - I was diagnosed with PBC but only after I took matters into my own hands. Luckily my insurance allowed me to go to any doctor I wanted without a recommend. So here I am - next auto immune on the horizon might be arthritis, which will probably be the least invasive although I have a 'bent' pinkie on my right hand that tells me this will suck too.

    But...I'm alive. I have a husband who loves me - my college sweetheart who found me after 40 years and we are celebrating our third anniversary TODAY MARCH 1.

    We have a few trips planned this year - Vegas of course we go there frequently because we can drive. New York and China. Trying to make the most of life and travel while I am still Ok and feeling fine - most of the time. Besides I didn't scrimp and save for a 401K just so my kids could spend it lol - so much easier to do that when you didn't actually ave to work for it! After all, once you deal with stuff like this you realize you cannot save everything for 'later'!

    I wish everyone here the best in managing this. Yesterday I was reading about the lack of studies in this area because it's not important enough, not enough of us and the primary cause of cirrhosis is alcohol abuse. I know it is looked down upon. Last year - before I knew what was happening, I was at a bar with friends. I had two drinks and literally passed out and was taken to emergency. My liver numbers - which had already been increasing over the last 2+ years were high and they treated me like crap lecturing me about drinking as if I were an alcoholic. Not fun. As it turned out it was PBC but with urso my numbers are going down and although I loved my wine on the weekends I have stopped drinking completely. Why take a risk? It's not worth dying for that's for sure.

    I'll stay in touch with this site because it makes me feel I am not alone and sometimes it is really hard to talk to others about it because they are not going through it and let's face it - it is unusual. try telling someone the disease causes your bile ducts to disintegrate - hello! Check please!

    Anyway - have a great day everyone. j

  • Happy Anniversary! Great to read your post.

    I hoped you changed doctors! They are not all created equal are they? I'm so sorry about the way you were treated at the hospital. It IS hard to try and explain to people what PBC is. People hear the word "cirrhosis" and they automatically presume you're a lush! At least now, you're on the Urso, you know the cause and you can get on with your life.

    I, too have arthritis. Mainly in my fingers which is unfortunate as I am an artist. I take glucosamine which really helps. I find when the joints are "growing" they ache like crazy but when the "growing" stops and they are at their most bulging, misshapen, ugly maximum the pain stops. Just looks very unattractive but what the heck.

    I hope you have a wonderful time in Vegas and all your trips. I lived in Vegas in the mid 70's. Was a dancer at the MGM Grand before it became Bally's. Lots of fun memories.

    Keep healthy, and happy!

  • Thank you PLB21 (sounds like a Star Wars name sort of like R2D2)

  • Happy anniversary to you both xx have a lovely holiday, all of them x

  • Your story was open and refreshing, thank you for sharing x

You may also like...