I'm new here...!: Hi everyone, I was... - PBC Foundation

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I'm new here...!

3 years ago•4 Replies

Hi everyone,

I was diagnosed with PBC in December 2019, aged 27 and to be honest, I don't know much about it. I haven't seen a doctor since about it, no check-ups but due to Covid, I guess that is to be expected. I have been having some real itchy episodes recently, to the point where I'm waking up in the night with really itchy feet. Is there anything anyone has found to help relieve the itchiness or should I go back to the doctor and ask if there is an alternative medication? It drives me insane, I could scratch my skin off some days! My legs are constantly covered in bruises from scratching so much. TIA

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Cookie712

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4 Replies

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butterflyEi3 years ago

Hi and welcome to the group.

Have you joined the PBC Foundation yet? If not it is free to subscribe and has a wealth of information for us all. There is also a book written by Professor David Jones which can be sourced from Amazon called PBC The Definitive Guide for Patients with Primary Biliary Cholangitis.

I cannot see which country you are in and so do not know how you source your medicines. In the UK almost everything is from the GP or specialists via prescription.

My experience of the itch has been a long one. The first line of defence is Cholestyramine (colestyramine or Questran and Questran light). The patient is usually started on 2 sachets a day, it takes a while to get into the system, one sachet before breakfast and one sachet after this is the best time when the bowel is empty. Some practitioners will increase the dose if no benefit it found. In addition there are other medications which need a specialist to prescribe such as Naltrexone, Rifampicin, Sertraline, Gabapentin.

For myself, I have ended up with a mixture of Rifampicin, Sertraline and Gabapentin all of which control the itch to a level that I find I can cope with.

You can buy a 2% dermacream which has menthol in it, this is a topical application which temporarily seems to confuse the skin but of course as a topical application it is only temporary.

Hope the above helps, let us know how you get on.

Cookie712 in reply to butterflyEi3 years ago

Thanks for the reply! I will sign up to the foundation and order the book, I think that will be useful for me and my partner to read to get a bit more understanding. Sorry, I am from the UK and I have those sachets too but my consultant said to just take them as and when needed. Sometimes they work, sometimes they don’t but now you’ve said there are other treatments, I’m going to try and book a phone call with him to discuss this. I was supposed to be getting a follow up appointment to check my bloods and have a scan but that is looking less likely now.

I have tried creams before but I find they only make it harder to scratch due to the sloppiness and not make it go away!

Thank you

butterflyEi in reply to Cookie7123 years ago

I am no doctor but I would suggest that Cholestyramine needs to be taken daily to gain benefit. I know it is unpleasant but I found that it works better in a slightly thicker medium than water or juice. I used to take it in Kefir at breakfast time. I am sure I remember my specialist saying that it would take about 2 weeks to start working properly. I wonder if you telephone the PBC Foundation they may be able to confirm the dosing on Cholestyramine. Also as a member of the Foundation you can listen in to the discussions from specialists in the field of PBC either via the link on the website or from their Face book page. When listening in you can ask questions directly or send them to the PBC Foundation in advance.

When my itch was really bad I once stood by a rough brick wall, all I did was cause myself to bleed however I have found taking a cube of ice and rubbing up and down the area can work.

Happy New Year to you.