Am an oldie on here by sounds of things in relation to how long have had pbc!

[littlemo]

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.

[EAJSWW]

Hiya, this is lovely to read....

Sometimes it can ve really depressing when people get stuck int he spiral of negativity....

we were diagnosed roughly at the same time and I too had a pregnancy whilst I have PBC Life can be good and the bad bits we can work around.....

BTW PBC isn't cureable by a transplant unfortunately as the disease process affects the immune system, eventually the chances are that it will attack a new liver too. (just saying this for those who really don't know)

x

[littlemo in reply to EAJSWW]

Hi thanks for that. Yes I did know that pbc can attack new liver but was leaving that bit out so as not to depress people specially the newbies further!

[EAJSWW]

Yes I gathered. But one thing I have found over the last 11 years, is that knowledge is power.... there is so much rubbish around about this condition. One lady told me recently that she wished she could have a transplant so she wouldn't have the fatigue. She really didn't get the enormity of the transplant and the lifestyle and drug regime there after.

Your post in itself is a huge positive for all those with PBC especially the newbies.

[littlemo]

Thanks having recently been through transplant assessment and seeing people who are praying for transplants I got to see just how bad things can get (though had bit of insight into this when I was pregnant), not only for people with pbc but others with liver cancers, fatty livers and so forth. Transplantation really has to be the last resort and one a road I hope I never have to go down but sadly no-one can predict that one! Just have to keep positive and keep praying!

[SC49]

I was only diagnosed within the past few months but looking back on my health, I suspect that i have had signs for many years. When I was pregnant with my son 13 years ago, I had itch, unbearable fatigue, dizziness and pain in joints and bones. When I spoke to my GP at the time, she tested me for anaemia and told me 'everyone gets tired'. I wasn't anaemic!

I had a very bad bout of anaemia and really bad problems with fatigue, stomach pain and nausea about 5 years ago which resulted in my being hospitalised. They were never able to explain the anaemia.

When the fatigue and stomach problems returned with a vengeance .. with added probelms with memory and concentration... about 14 months ago, I fought it as long as I could.. taking iron, eating well and resting as much as I could. By January this year I couldn't con myself into believing that it was just over work. I went to the docs and it was all down hill from there! It took 9 months to get a diagnosis.

I must say though that I was almost pleased. I had 9 months of my imagination running riot and worrying about what I might have. At first I was a little panic stricken but I am less worried now. The Ursofalk hasn't helped with any of the symptoms but I am slowly finding my own ways of managing.

The things that have helped me most are my own family and friends, a very nice GP and nurse, these forums, the PBC foundation compendium and my own interest in finding out about the clinical / academic research on PBC. I think that while a lot of medical practioners lack knowledge about the disease, there is a lot of work going on which will ultimately make our lives very much easier.

There are of course those who make it their business to interfere with my happiness and peace of mind (consultants, employers, the state benefit system, banks and politicians to name but a few) but I think that the more knowledgeable I become, the more I'll be able to fight all these people every step of the way. Im many ways, their ignorance helps keep my mind off my symptoms!