PBC IN REMISSION ??

[susanuwdc]

I was told i had PBC 12 years ago, with an horrendous itch, and severe discomfort. After a couple of years i appeared to be in remission, if that is the correct wording. I now have it again, and Its driving me nuts, i am still awaiting further results, and seriously distressed. I hardly ever drink, but do have an odd one now and again, one or two a month. Why are we more likely to get PBC, when it is more of an autoimmune illness, and really not a drinker of alcohol? My itch can be in many different parts of my body, and i am sick of it.

[Lisacj]

PBC is NOT alchohol induced in any way. It is peoples perspective, but completely not true. It is an autoimmune disease full stop. Advise is not to drink too much and a couple a month is certainly not too much. Dont beat your self up, be kind and wait for the results.My itch seeems to be in different places each day, and some days not too bad, other i make myself bleed with out even noticing.Rubbibg a little cream helps if my skin gets dry it is worse.

Good luck with your results

[SC49]

You could look at the PBC foundation website. There is a lot of useful information on there and if you sign up as a member, you can get access to the PBC Compendium which has really detailed information about PBC and how it affects people.

pbcfoundation.org.uk/Home.htm

As Lisacj says, it has nothing to do with alcohol. It is an autoimmune condition. The antibody damages the bile ducts, causing them eventually to become scarred and in the worst cases, causing cirrhosis of the liver.

If you have PBC you do not automatically have cirrhosis. You can have PBC and have little or no liver damage at all. The symptoms can come and go.

Good luck with your test results

[Hidden]

I started with the itch in early 2010 (at time exhaustion and fatigue but was overworking in a full-time demanding job), diagnosed with PBC Dec 2010. The fatigue has long since left me and I feel I have a pretty normal day, wide-awake and alert unless I have suffered the night before with the itch and had broken night's sleep, I then start to feel tired later in the day.

For me the itch has continued and it is now 3yrs since it started. I have had periods since late 2011 where I went for several days without the itch and even went 10 days but slowly it did start to lessen. Just recently I've managed 2 nights minus the itch. I think for me the itch is not going to go away but I have to say it has lessened somewhat and I am fortunate if I can say that (as I'd rather be rid of the itch altogether!) that I only tend to itch at night. Of course there will never be any guarantee it will always remain that way but for now I'll accept that.

Although it is said some patients with PBC never itch, my way of thinking is that I think more do than don't from what I keep reading from other's experiences.

I think the key perhaps for one going into what is a remissive state with PBC as apparently it can just halt for a period of time to resurface or never progress any further, is to attempt to look after ourselves even better even if we are what is termed a 'limbo state' as I call it now (we have PBC but we reach a state where it doesn't go any further but it cannot heal the damage already done to the bile ducts) and perhaps with as healthy as possible liver maybe we can be fine.

I can't help but wonder if there is some sort of number count in the LFTs as in abnomal level that suddenly starts one to itch? Maybe.