Pbc

[lkraft]

IM at stage one . Im curious what systoms everybodyhas

[butterflyEi]

I do not know what stage I am at. The main symptom is the itching which has plagued me for quite a while now however I also have joint pain and occasional fatigue. I currently take omeprazole for reflux and statins which I have been on for years. Urso of course which was prescribed by the first specialist. Oh and nearly forgot - how could I - dry eyes for which I use drops! They say that not everything is PBC related although all of the above are experienced by many PBC sufferers apparently. I am now in my early 60s and although I had a diagnosis some 8 years ago I believe that I had presented to the GP with symptoms before that.

You do not mention what symptoms you have but I hope in the early stage you are not heavily burdened.

best wishes

[mumofthree]

I was diagnosed in Jan 2011, I was not told at that time what stage I was at. At last years annual hospital check up I met a new consultant who turned the screen around to show me the flow charts which confirmed I am stable and my liver is behaving itself. She also read out parts of the original diagnosis report and I caught sight of the 'stage', I was stage 1.

When first diagnosed my symptoms were joint, muscle and bone pain which I had been suffering with for about 10 years undiagnosed but further tests querying rheumatoid arthritis, blood tests showed I had PBC, later confirmed by liver biopsy. I keep the pain at bay with regular pain killers, pain relief gels and heat packs but have basically learned to live with it. I also have brain fog - difficulty concentrating, forget what I am saying mid sentence - I have dry eyes and mouth. My main problem these days however is severe fatigue. I get this feeling as if the energy is just draining out of my body and just have to sleep. There is nothing I can do about it and it can happen at any time, even mid conversation. It has become a laughing point in our house with my children playing jokes on me, making me believe I have agreed to things while nodding off. At first I thought I was just tired until I became quite ill and collapsed in work, that was 2 years ago. My GP said I was fighting against the fatigue so much the collapse was my bodies way of saying enough was enough and was shutting itself down. She told me I needed to listen to my body and if I am feeling tired I should sleep, not easy when at work!!.

I managed to continue working my 3 X 8 hour days but last march I chose to reduce my hours to 2 x 6 hour days. I found that the 8 hour days were becoming too much for me and the 30 minute drive home was a living nightmare. I was scared to drive home because at the end of my shift I was so exhausted I could feel my energy levels running down and would struggle to keep myself from dropping off. The 30 minute drive was getting longer and longer, I would have the windows wide open and cold air blowing in my face but would have to pull in to the side of the road until the feeling subsided. I am able to cope much better since reducing my working day and hope I will be able to continue working for at least another 10 years, I am 55 next month.

[Hidden]

Hello lkraft.

I presume you have had a liver biopsy to say that you are stage one in PBC. I've never had a biopsy as I was diagnosed with symptons - itching and at the time fatigue - and abnormal LFTs (liver function test) plus abnormal GGT blood test and also I was found to have a high titre of the anti-mitochondria antibodies (AMAs). The consultant at the hospital reckoned that I had started with PBC a few years prior but never mentioned any stages. I was 46 at the time of diagnosis in Dec 2010. I am doing pretty good 4 years on with urso.

I personally do not want to think about stages of PBC. I am pretty confident that nowadays blood work can show changes and also ultrasound can show the actual state of my liver (I did see a programme on tv back in 2010, 2 men live on air, one overweight, another who drank heavily, former was said to have a fatty liver, the other cirrhosis). My ultrasound in the early days showed it to look pretty much normal as did all surrounding organs and the consultant said that my bile ducts looked pretty good too.

My fatigued vanished sometime the following year, in 2011 and the itching has persisted but it has lessened somewhat over time. I only itch with PBC as well as having the abnormal LFTs still (but they are not so abnormal). I only take urso, nothing else currently.

There are various symptons that can come with PBC. I would rather not think about them, I resolved with myself some time ago now that I would deal with things as and when as those things might never be and it will have been wasted thinking and worrying time.

I try to enjoy life as and when I can. I would rather make memories than think about having PBC. I think t hat although there are stages of PBC, there are also stages that one has to go through from being diagnosed with PBC also. I think I've managed so far to get through some of the initial ones of it sinking in that I have something that is apparently at present incurable, accepting that I have to take a med for PBC for the rest of life (found that hard to deal with in the beginning as I rarely went to see a doctor pre-2010 and hadn't had any meds since 1999 when I did go), then starting to make slight changes over time, knowing there are odd unimportant things I won't do (ie I doubt I'll ever go to night time cinema again, feel prickly at night due to itching at night and wouldn't be able to sit in those uncomfortable seats to see a film through) and then there's the contact with the GP at intervals which is a feat in itself as I find the doctors cause me more undue stress than anything, the system seems to always cause me hassles (I like a print-out of the bloods each time, that is like asking the Secret Service for certain information!). But another year is here and technically I've been with PBC for almost 5yrs as I started itching March 2010.

[lkraft]

how long can you live with

pbc