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.