PBC

[janine541]

Once again the itching is in bearable hope everyone else is okay

Till my results come no relief

[EileenUSA]

I'm so sorry to hear that your are going through horrible itching. I hope you can find some relief. I'm sure you've been trying all the usual things..

sounds like you just had blood work done? And then will you be able to have timely consult with your doctor? Sending you hugs.

[janine541 in reply to EileenUSA]

Hi I’m awaiting a reply from my consultant to see what I can have

[Ktltel]

Why haven't they figured anything out yet about this horrific itching??? I'm so sorry you're going through this. Have you tried tanning beds. I know this isn't the best alternative... UV Rays etc., but I've heard it has actually stopped the itching for some.

You have to weigh out the good and bad. At least get some relief if does work.

Stella❤

[janine541 in reply to Ktltel]

Hi awaiting for my consultant to get back to me

[Alisonsewsalot]

I, too, am itching like mad especially on my neck and chest.

As my previous blood tests have shown very low results and I’ve had no symptoms I only see my consult every 6 months. Unfortunately the January appointment was cancelled in October with a ‘we will be in touch shortly with a new appointment’!

I still haven’t received a date and it’s April! I have had a lot of family health issues and since October have spent most of my time on other people in other parts of the country and as usual put myself last.

But after a particularly annoying itchy day this week I rang to find out what is going on with the booking and have been given a cancellation for this Monday. Blood test done yesterday and hoping I can get answers/relief when I get to see him next week.

Meanwhile I’m taking Piraton which just about makes it bearable.

Hope you are able to get answer soon, I can genuinely say I know how you feel!

[butterflyEi in reply to Alisonsewsalot]

Hi Alisonsewsalot

I had not been seen for a year with no appointment date in sight. I telephoned the hospital booking centre, they could see that I was due an appointment and I was given a date. I wonder if you might have a similar result, if you do telephone them be armed with your previous correspondence, if that fails telephone the secretary of your allocated specialist and hopefully you may be able to find an answer for the delay.

best wishes

[Alisonsewsalot in reply to butterflyEi]

Thanks, I called them this week and have a cancellation- Thank Goodness!

I was diagnosed a couple of years ago due to a blood test for an entirely different condition, this is the first time I am sencing symptoms.

[butterflyEi]

I am an "itcher" but about two years ago the hepatologist started me on Rifampicin after the cholestyramine powder did not work although I still take them I also needed 25mg of sertraline to bring the level of itch down to something that I can live with.

There is a good article on the itch by Prof.Neuburger in the Spring 2015 issue of the Bear Facts magazine which can be found on the PBC Foundation web site.

Before getting to the specialist the GP had prescribed 2 cetirizine twice a day which did help a little, it is an over the counter medication in the UK - it may be helpful to you. The GP can also prescribe or you can buy a 2% menthol derma cream which straight from the fridge gives temporary relief.

I am not sure that the level of bloods is an indicator to the discomfort of the itch and it is not an indicator of disease progression. Having just had a recent consultation with the specialist where he was very pleased with the levels (he was running an hour and half late so did not ask for a copy but will get one from the surgery) which indicates I am doing well but I know without the meds the "itch" would again be unbearable as it is always in the background even with the meds.

Hope you have some relief soon.