Pbc/Aih

[janine541]

Hi everybody

Anybody still awake...The nights are terrible with this itch. Everyone asleep and only me awake x

[Ktltel]

Hi Janine541,

It's 5:39 pm here in the States. Sorry you're dealing with that awful itch. Is there really nothing that can be given to ease it?? I haven't gotten the itch yet. Fatigue, yes, itch, not yet.

Hopefully soon there will be something that can help ease it. I've read something about tanning salons... Have you heard anything about that?

Stella

[janine541 in reply to Ktltel]

No not really. I had a course of pills but oly 7 days. Trying baths at moo.

Nightmare as awake all night then tired all day.

See my consultant next week

[Ktltel in reply to janine541]

It's awful. So sorry. Well, I've heard some going to tanning beds and having the itch go away. Next time I come across a post like that I'll pay more attention. Hope and pray you can get some relief soon. ❤

[Jlruggie]

Janine

I too am awake itching and mind racing. Wish I had some witch hazel. Watching Facebook game of thrones spoilers and story studies. Breathing deeply physiologically helps Janine. Breathe 8-12 counts in and 8-11 counts out till you fall asleep. You will relax guaranteed. Just do it. What do you have to lose?

Jlruggie

[butterflyEi]

Hi janine541

I am awake now! Been awake a couple of hours but always stay quiet until the rest of the household wakes up

Since 2014 I have suffered dreadfully with the itch to the point where I could no longer tolerate the sword fight going on under my skin and the millions of hot pins poking from the underlying tissue and the web that was across the lower half of my face. It seems that the itch can manifest itself in different ways for different people. Some say it is like spiders crawling over the skin but I have not experienced the so called "itch" of PBC like this.

I have tried anti histamines which worked for a short while but had to resort to prescribed medicines such as Naltrexone (which did not work for me) on to Rifampicin and Cholestyramine and only just recently added to the mix is 25mgs of Sertraline (which is an antidepressant but in this case used to help with the itch). This cocktail seems to have made some improvement but I am still having to add the topical application of a 2% menthol cream. The addition of the Sertraline is only three days into the medication and I am desperately hoping that there will be an improvement if not the specialist has said that the next step would be more invasive so I am guessing that means blood cleaning.

Have you read the article on the itch in the Bear Facts magazine Spring 2015 by Professor Neuburger which can be found in the member's section on the PBC Foundation website (free to join if you are not already a member).

Cool baths and the use of ice did originally help me a bit as well, I know some people put epsom salts in the bath. I hope you find something that works for you.

best wishes

[Rockie]

Janine 541. Last night I only slept 3hours. I thought I had the itch, sort of, under control, but I went out for lunch with a dear friend and asked for gluten free food, but it definitely was not. Therefore I was itching and scratching. For me gluten, fatty foods, alcohol definitely not good. And do not forget stress also contributes a lot to the itch. The only thing I find that relieves the itch a bit, is to get up and walk up and down for blood circulation.

[Lookforward]

Hi

Questran soluble granules , prescribed by doc , saved my sanity .. I wasn't sleeping , itching all night despite fans ice packs and just sheet for cover.. would have happily slept in fridge if possible .. I was as u are / miserable but 3 weeks of Quratran made all the difference to me .. 😊👌

[janine541]

Thank u