Tedsui looking for support

[Tedsui]

Hi - I'm a newbie to this site as my husband has recently been diagnosed with Primary Sclerosing Cholangitis (this wasn't an option in the search box so I ticked PBC instead)

He attends our local hospital weekly for blood tests and was an in-patient from 2l to 24 January 2020, as his liver blood results had gone off the scale.

[Hidden]

Good afternoon and welcome to the forum,

We have a publication on PSC that you may find useful to read:

britishlivertrust.org.uk/in...

We also have a nurse led helpline open Mon to ri 10am to 3pm on 0800 652 7330

We hope you find the forum a supportive place to visit

Best wishes

Trust1

[Tedsui in reply to Hidden]

Thank you Trust1- I spoke to Rebecca earlier and she suggested several ways forward. Since then he has been admitted into Medway Maritime and they are hoping to send him to Kings tomorrow. I will keep you updated x

[gardenfun]

Hello Tedsui

He might also have frequent colonoscopy as PSC comes often with Colitis.

Does he get Ursodeoxycholacid???

In doubt of inflammation-flare of the bileducts (can happen sometimes and might come on and off) he also should get antibiotics (Ciprofloxacin). Ask for getting a pack of this antibiotics also for taking home, in case inflammation comes in a weekend or holiday (so he can react immediately).

When bileducts get blocked, he should receive dilatation immediately (which should be done by an expert gp in hospital).

All the best to him and you

[Tedsui in reply to gardenfun]

Thank you gardenfun - Since my earlier post he has been admitted into Medway Maritime and they are hoping to send him to Kings tomorrow. I will keep you updated x

[gardenfun in reply to Tedsui]

Thank you. Tell him I send him all good wishes and also for you.

Eva from Germany

[Tedsui in reply to gardenfun]

Thank you Eva, in answer to your first reply he is on Ursodeoxycholacid with a "thimble" size measure to give him 8ml 3 times a day. He was started on the hard capsules - Ursonom but they changed him to the liquid when he was sent home from hospital on the 24 Jan. Something in his drugs is making him very jaundiced looking and he's still in the local hospital before transfer to Kings College in London.

[gardenfun in reply to Tedsui]

Dear Tedsui

Thank you for your answer.

I don't think that the drugs make him jaundice, but inflammation or blocking of his bileducts.

Is he receiving Antibiotics?

Sometimes though the Urso in high dose can also cause worsening.

All the best to you both!

[Tedsui in reply to gardenfun]

He is on Thiamine, Vitamin B and Ursodeoxycholacid which is what he came home with a week ago and he's still on that x

[Hidden]

Hi Tedsui,

Stay positive, I have PSC and was diagnosed 20 years ago (early 30's). I have taken Urso since. Also have ulcerative colitis as a secondary to PSC. For the last 18 years I continued my life as though it wasn't diagnosed. I kept extremely fit and active throughout with endurance events and I am sure the fitness and positive mental attitude has helped. Symptoms started to to worsen 2018/2019 (Hepatic encephalopathy , ascites, fatigue,repeat infections, etc. ) All consistent with end stage liver cirrohsis. Unfortunately consultants had to medically stop me working at the end of 2019. I was accepted for liver transplant at a similar time and am still awaiting transplant. Of course things can be tough and some days a lot worse than others. However even through coronaviris and these unprecedented tomes find the strength for you and your loved ones to stay positive in your outlook. My wife and i have found this to be the absolute best approach. The liver medical teams are experts in their field. Take care