Anyone else with PSC?

[DigbyismyDog]

I was diagnosed with Primary sclerosing cholangitis (PSC) about a year ago now and my consultant thinks the disease may be progressing as I am getting more symptoms (always tired, itchy, flare ups with pain etc)

I have been referred to Kings for further checks but I feel very worried and scared about the future. Does anyone else have this and how do you cope? What is your life like living with the disease?

I am female and 31 years old. My husband and I would possibly like to have children but we are unsure whether to go ahead/make any decisions in case my health gets worse and how quickly it may or may not happen.

I know everyone is different but would be nice to chat to some others dealing with this too, even if you cannot give me specific advice Thank you for reading. x

[Dexter786]

I would recommend you join the PSC Support UK group on Facebook. Lots of great information and knowledgable people who have this condition who can answer all your questions and concerns.

[PeterP54]

I second Dexter's recommendation about the PSC Support Group.

In the late 1980s I had gall stones and my gall bladder was removed in 1989/90. I was in my mid to late 30s. Symptoms at the time were probably pretty standard gall bladder issues with periodic stomach pains. After my gall bladder was removed (1990), my bloods had not returned to normal, so I had what at the time seemed to be endless ERCPs looking for "sludge" or a stray stone. None was found. It then seemed to be a judgement call that I had either PSC or PBC. PSC was settled on. Ursofalk was prescribed but I was not convinced it made any difference.

I attended regular clinics to see how I was feeling and to take blood tests. It was probably late 2004 / early 2005 that I was feeling noticeably more tired but still held down a busy / stressful and responsible job. In early 2006, I was called into St James for an assessment. I was put on the TX list in February and I was very, very fortunate to get a phone call on 1 April 2006 (evening) to ask me to come in as they had a liver for me.

I have had some other health issues related to side effects of the immuno suppressants but as far as I am aware, my liver is performing as expected. In terms of career, I progressed to head of department and completed an MBA at night classes, so I don't think that PSC or the TX affected my career potential although I have to say that my employers were mostly good with me.

In terms of PSC, I felt tired after a days work for a bit over a year and post TX it took a couple of months after returning to work to get back up to speed. This is where you will need a support network.

I think tiredness is common with PSC and we all experience different levels. A good support network at home and work is essential. Hopefully you have that support network already in place but if not PSC Support is a good place to start cultivating.

[Dexter786 in reply to PeterP54]

Very similar story but I’m currently waiting for a transplant. I had my gallbladder removed in 2015 and my bloods were still deranged and put down to NAFLD. it was only in 2023 I had a Varicies bleed, which kickstarted more serious investigations and subsequently was hospitalised for a month in Feb 2024 with cholongitis and diagnosis was confirmed as PSC. I’ve been living with PSC apparently for the best part of 20 years with very little symptoms and work in a stressful environment. I was put on the TP list in July 2024, although I feel fine apart from some fatigue and jaundice in my eyes. The support group on Facebook is brill and has really helped me accept my condition. It’s not a death sentence and lots of positive stories.

[Qainat]

I'm a 66 year-old male. I have had this condition for over 15 years now. The itchiness passed after a year or so and I never felt overly tired. Apart from high LFTs, I've been completely symptom free.

[Dave46]

I think it's important to find out why they think your disease is progressing? What have they seen, what are your bloods, what are then the options they offer you for treatment?I lost my husband to PSC on Friday, we are still chasing why he had no options.

It's a rare disease and the worry of being experimental.

If you and your husband want children and are well enough too, it may give you both joy and give both of your immense joy even if limited, we never know when our time is so just make the most of it wishing you well much love 🥰