PBC Foundation
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Transplant unit

I finally have an appointment at the transplant unit at the royal infirmary in Edinburgh on 4th July.......I have been signed off my work for two weeks due to intractable itch and fatigue, I have lived with the itch for six years but the fatigue is completely new to me! I was trying to hold down a full time job and look after my three young boys by myself but just couldn't do it anymore. We have a camping trip organised for two weeks time and I am absolutely dreading it - I am up every night scratching but we are camping at the beach so hopefully I can relax while my boys play in the sea and sand!

1 Reply

Hello Jill68.

I very much sympathise with you and the dratted itch. I myself have been itching now since early 2010, that was how it was discovered along with abnormal LFTs and having positive AMAs I had PBC.

During 2010 I went camping myself in Yorkshire for 10 days and was on holiday leave from a full-time demanding job and it was to be another 6 months before I was informed I'd PBC and started on urso.

I was very fatigued at the time, falling asleep on getting home from work and skipping tea. Like you state, I was awake then most of the night with the itch.

The only thing I can say and I wish I could eradicate the itch completely for us all is that as daft as it may sound, if you can perhaps keep on the move whilst you are away as difficult as it may be, you may find like I did on what was actually my first camping holiday (just my husband and I, children grown-up now. I'm 49 by the way), you can then sleep for most of the night.

I only itch at night time these days but I have to say I do not finding sitting down during the day wholly comfortable myself so I tend to be on the move most of the time. I find that if I do sit down in the day time, it has to be straight up otherwise if I was to put my feet up, that is when I feel the prickles.

PBC is a strange thing to have when you are tormented by the itch I know. You get tired (I say tired as I haven't suffered from fatigued now for about 18mths., that long since left me and I wish it had been the other way round, the itch vanishing), then when you go to bed despite feeling a tad tired, you itch and then struggle to get to sleep. It is very much hit and miss for me at night time these days, depends on if I've managed to remain awake until 11p.m. when I retire to bed. I rise at 6a.m., force myself to do so with my husband in the hopes that I can have a night's sleep and it's another day got through without suffering from the itch.

Try enjoy your forthcoming holiday as difficult as it seems and take note if it is sunny and you sit in it, you don't tend to feel as badly with the itch I have been finding so it must be the sun that does it.


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