Sophie’s story: “I had cirrhosis and didn’t know what it meant, how or why it had happened or if I was going to die”

Having been healthy all her life, Sophie was terrified and confused when she suddenly began to experience extreme joint pain, fatigue and ulcers. Since being diagnosed with, and treated for, autoimmune hepatitis she now feels really well 

I’ve always been healthy until my 23rd birthday in October 2022. I’d been really stressed at work and quit my job and thought I was coming down with some sort of illness because of it. My boyfriend and I went away to Chester where I began getting severe joint pains and struggled to get out of the car and out of bed. It was very unlike me and I started to worry.

The day after we got back I was at home on my own and my dad, who I live with, was at work. The pain was getting really bad. Dad was concerned when he got back, but it was hard for me to explain because I had joint pain and my body felt extremely tired. I thought it might be some sort of arthritis due to the weather getting colder.

As the night went on it got a lot worse. I came out in a rash and had sores all over my body, ulcers in my mouth and my gums were inflamed. I barely slept at all. I was so uncomfortable and my hands and feet felt like they were going to fall off.

I rang my doctor in the morning, but they couldn’t fit me in. I ended up ringing 111 and they got me an emergency video call. As soon as my GP saw me she said I needed to go to hospital, but the hospital palmed me off, they also thought it was some form of arthritis and prescribed pain killers. When I got back home my dad said: “I don’t think this is right”. He thought something else was going on.

The symptoms were so much worse that night. I went back to A&E the next day and this time my dad came with me. Covid restrictions were still in place, but the staff let him in because I was so poorly. By this point I could barely move because my joints were so swollen. I looked like I was going to die. It was terrifying because it was so unexpected and came on so quickly. I had no idea what it could be.

I was admitted to hospital and given a lot of morphine for the pain and antiviral tablets. I think the tablets helped because the swelling went down, but the doctors thought it might be because the flare-up was going down.

I had a million different symptoms that weren’t specific to liver disease

I was on the assessment ward for quite some time, they didn’t know where to put me because they weren’t sure what was wrong. I had a million different symptoms that weren’t specific to liver disease. They thought it might be chicken pox – I’d already had it as a child – but you can have it twice in your life, although it’s very rare.

The ECG didn’t find anything and a blood test came back clear. Then they did some more blood tests, found my liver enzymes were elevated and I was sent for an ultrasound. I asked the technician doing it “What can you see?” He said: “Your spleen looks enlarged and there seems to be an unusual texture on your liver”. I asked him if that could be something serious and he said: “I wouldn’t want to say”.

The test results said I had cirrhosis, which was scary because I didn’t know what it meant, how or why it had happened or if I was going to die. I never expected it to be my liver, I thought it was associated with older people and heavy drinkers. Everyone was really nice at the hospital, which made it a little bit easier. The doctor thought it could be autoimmune hepatitis because the blood tests had ruled everything else out.

After three weeks I was told I was well enough to go home. They booked me in for a gastroscopy and referred me to Manchester Royal Infirmary. I wasn’t given any medication apart from beta blockers because I had portal hypertension.

Two months later the technician doing my gastroscopy was mortified that I hadn’t been put on steroids or any other treatment. He saw the spider angiomas on my chest, called the doctor who became my specialist, and told him I needed to be put on steroids ASAP. I’ll forever be grateful to him. He said the varices in my gullet weren’t bad enough to be banded which was a relief. From there I was referred to my consultant at Manchester Royal and he’s been fantastic.

Six weeks later I had a liver biopsy which confirmed it was autoimmune hepatitis. I was put on quite a high dose of steroids, then that was lowered and I now only take 15mg and also immunosuppressants. I tried a couple of different types – the first one gave me really bad hair loss, so they were swapped to a different kind which are working really well.

I’ve never been on tablets before and now I take a million a day, but I’ve been really well looked after by my specialist. At first I was seen every two weeks, and I had regular blood tests. My bloods are coming down towards the normal range which is a relief so now have blood tests every four weeks. I still have bad days where I feel really fatigued and have side effects from the medication, but otherwise I feel great.

The consultant said autoimmune hepatitis is more common in women and most patients are older than me, and it was nothing I’d done wrong. It can run in families but I don’t know anyone with anything like it. He found it hard to pinpoint where it had started – and I have no idea how long I’ve had it for, but I’ve always thought my hangovers have been worse than my friends. In my last year of uni if I drank I felt like I’d been hit by a bus. Other than that I would never have suspected there was anything wrong.

People assume hepatitis is alcohol related which is a shame. Even I had those assumptions at first

There’s a stigma around the word hepatitis. People assume its alcohol related which is a shame because it doesn’t encourage people to speak out. Even I had those assumptions at first. It would be great if people could just look into it a little bit rather than making a snap judgement. There should be more education about liver disease because some people are really struggling and it’s nothing that they’ve done.

There are more people who have liver disease than you realise and there will always be someone of your age with a similar lifestyle who is going through the exact same thing. If it isn’t treated it can be really serious, so if you think something is wrong speak to your doctor.

My specialist seems to be really optimistic about the long term for me. He put forward the worst-case scenarios – transplants, that kind of thing, but because I’m quite young and it’s been caught early he hopes it could go into remission if we regulate it. I’m quite settled with the fact that I might need a transplant at some point. I’ve had this for a year now so I’ve talked myself into that maybe being an option, but right now I feel really well.


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