I was diagnosed in 2002 with pbc having suffered the symptoms of it namely horrendous itch, fatigue and joint pains, the worst of these for me being the itch. I have had the itch to a greater and lesser degree day and night (worse at night) for the past 11 almost 12 yrs.
On the whole I learnt little tricks along the way that seemed to help me get the itch to tolerable levels. These tips I would like to share with all of you, specially those who have the itch always like me. I eat healthily ,small and often high fibre foods and try to avoid too much caffeine, sugar and spicy foods. I have found out over the years that these things make the itch worse (for me anyway). I also drink plenty of water every day, at least one -two litres (if can manage it) to flush out the toxins. I also have found that if I am taking an infection or am very stressed the itch gets worse, so I usually always take a multi vitamin plus iron to boost my immune system and in autumn- winter I also add in taking high dose vitamin C to keep away viruses and avoid infections.
I also try to keep my stress levels down and now only work part-time in a relatively less stressful job and try to have a good home-work balance however at home not always easy to avoid stress with having a teenager and a 5yr old in the house!
I have lived a very full life over the past 10, almost 11 yrs since being diagnosed with pbc and have managed to do a full time diploma and a part time degree in this time so have not let pbc or the darned itch rule my life. I was trundling along just fine until hit a big bump in the road in 2006-2007 when I was pregnant with my 2nd child. I was taken off urso for the first trimester of pregnancy and I had a few problems which almost resulting in me being put on the transplant list urgently. However, following being treated with intravenous medicine to help my blood clotting and being put back on urso as was then in my 2nd trimester my liver stabilied. The last few months of the pregnancy were awful as throughout the pregnancy I kept loosing weight instead of putting it on and had a lot of back and hip pain but am happy to say I had a healthy baby boy via c section at 38 weeks and did recover and get back to "normal" after a few months of building myself up again. Incidentally my consultant and I have debated the issue of why I had such a hard time then he felt it was the pregnancy putting extra pressure on my liver, I felt that it was due to my being off the Urso (i.e. meaning my liver was not being protected during this time), in the end we agreed to disagree on the subject.
I kept quite well then until sept 2011 when all the things I did to help with keeping the itch at tolerable levels didn't seem to be working anymore and the itch became unbearable and was making my life totally miserable. My consultant in Belfast with advice from consultant in Kings College in London tried me on various things to help alleviate the itch but none worked to alleviate it or to take it back to tolerable levels and I was therefore referred for transplant assessment. I had all the tests done in Belfast in Nov 2011 and was waiting on the call to go to Kings when in Aug I could stick the itch no longer so decided to stop the urso to see if that would help as had read somewhere that someone thought it made their itch worse.
Within about two weeks I found that the itch was much better in fact milder than what I had suffered with for 10 yrs and was and still is well controlled by Questran ( which incidentally have also been on along with the Urso for the last 10 almost 11 yrs. I told my consultant what I had done and expected a big lecture but because I was feeling so well and the itch was being controlled he was happy enough for me to stay off the Urso but he also still wanted me to have the rest of the transplant assessment done in Kings as the itch was still there and had fluctuated lot over the years.
So to cut long story I had the assessment done in Kings and it was decided that I should not be put on transplant list at this point ( and hopefully never but no-one can predict that one!), as by time had the transplant assessment done in Kings in Oct 2012 my itch was much less and much more tolerable than it had been since before sept 2011.
I still have the itch but as I said it is well controlled now with Questran light. I hope and pray that this will continue to be the case for a very long time to come. The dr's will monitor my bloods to see how things are going with me being off the Urso and I am just hoping with all my heart that being off it will do me a lot more good than harm what with all the research around the Urso being debatable. I hope this info on my personal experience is helpful to some of you. The important thing to remember is that though pbc is only "curable" through transplant ( though it can return in a transplanted liver though not for many many years it is thought) it is a mangeable disease and you can have life after pbc, just hang in there and never be afraid to ask questions specially to the consultants in the liver units and to other folks like myself who totally know and understand some, if not all, of what you are going through. Take care and stay happy.