When the Cure Made Me Ill

For me, the decision to start treatment for hep C was an easy one. I didn’t feel I had much to lose by starting sooner rather than later, and as I had only recently found out I had hep C, I was even more keen to get rid of it.

A few other things helped me decide to start treatment early on into the diagnoses. I’d been on HIV meds for just under seven years, so I felt like I could easily adhere to some new meds,
and my consultant explained that it was better to treat the infection early on into the diagnosis as it sometimes meant a shorter treatment course.

My mental health was pretty stable, I’d been through some intense talking therapy the previous year, and I felt like I was prepared to deal with any wobbly days that might have come my way.

I also felt comfortable talking with my employer about what was going on, and that I was considering taking treatment for hep C. I had worked for a number of organisations in the past that I couldn’t imagine having this conversation with.

I knew a little bit about the new treatments that were on the horizon. My consultant told me that new treatments probably wouldn’t be offered to people who hadn’t at least tried the existing interferon-based treatment first.

One of the biggest factors in deciding to start hepatitis C treatment was the way I was dealing with the diagnosis. It felt completely different to finding out about being HIV positive. I’d spoken to guys online who I told about my co-infection, who said they couldn’t risk sleeping with me as they were already HIV positive.

It was difficult to process this rejection from HIV positive guys – it was a new kind of rejection and fuelled a bizarre feeling stigma that I started feeling. I felt dirty. I felt undateable. I felt alone.

I made the decision to start treatment as soon as I could. The first few weeks into treatment, and things were going okay. I felt achy, but it didn’t feel any worse than I sometimes felt after a visit to the gym.

‘Unless you’ve felt the fog and the fatigue that interferon brings, there is no way you can imagine it up close.’

By the fifth week of treatment, I was struggling with getting up in the mornings. Taking the dog out for a walk was challenging, I didn’t want to eat and I stopped doing the things that I used to enjoy and I just wanted to sleep all the time.

It seemed my life was slowing down at the same time things around me were speeding up. Nothing could have prepared me for this feeling of fatigue. I still think that.

Six weeks into treatment, I had the first set of results back. These were important. They were taken at four weeks after starting treatment,
and if they showed I was undetectable, it would mean I would only need to stay on treatment
for six months. If the virus was detectable still, treatment would be longer – possibly up to a year.

‘These results showed that I still had a detectable hep C viral load. I felt crushed. I was numb.’

I had pinned so much hope on these tests coming back as undetectable, that I hadn’t left any room for bad news. I cried for what felt like hours that day.

Eight weeks after starting treatment, I had developed quite a serious chest infection, and needed some additional blood tests. The results showed that I had developed neutropenia – I had a low level of neutrophils, a type of white blood cell, that helps the body fight infections, which meant I would need to start taking more medication and another injection to deal with this new problem.

There was some was some good news though – the results also came back showing I was undetectable. The treatment seemed to be working. I finally saw there was hope, and I could see some light at the end of the tunnel.

The treatment for the neutropenia was tough, it meant taking additional injections – I now had to take three injections a week, and about thirteen pills a day.

I started thinking that maybe I had gone undetectable just after my week four tests, maybe at week five, and this meant I should stop treatment at the six month mark. My consultant tried in vain to convince me that I should give the treatment as long as I could, and that I should keep going far beyond six months, and even though I agreed I would try it, I knew I wanted to stop.

Seven months into treatment my mind and body were all over the place, and I had no more fight in me.

The blood tests were still showing undetectable, and I felt like I was too. My brain was fried. I was angry at everything, shouting at people at the supermarket over stupid things. I was feeling aggressive and thoughts about self-harm were going through my head.

I booked an appointment to see my consultant. It was the 2nd December, and I had spent World AIDS Day in a trance, blocked up with so much emotion and fear about stopping treatment
and worries I wouldn’t return to a normal life I couldn’t remember what being normal felt like,
I couldn’t remember how it felt to be me – there was an interferon haze to everything around, and inside me.

I walked in and stuttered, “I want to stop” to my consultant, as tears rolled down my cheeks. I felt like a huge weight had been lifted – asking to stop was like pulling myself out of a relationship – I was dumping the treatment.

He told me I had done well to get this far, and I nodded through him telling that he couldn’t guarantee that the hepatitis had been cleared, and there was a chance I might re-bound. Somewhere, the virus might still be hiding.

A month after stopping, I had the first results back. They were still undetectable. My health was improving and I started to feel like me again. I was coping with life, and my moods were returning to normal.

The next appointment I had with my consultant was cancelled. I was going on holiday, and I decided to make an appointment when I got back. I needed to take some time out for myself and forget about the last few months.

Three months after stopping treatment and I still hadn’t made an appointment to have follow up bloods or to see my consultant. Somehow, it became easier not to think about them, and I was still saying to myself, that I needed to have some more time away from the hospital.

Finally I realised I couldn’t keep running away. Even though I had started to get my life back on track, there was a fear that the treatment might not have worked – I started noticing things with my health that I had experienced before I started treatment, and it seemed easier to keep burying my head in the sand and not confront it.

Eventually I told a friend what was going on, and he came with me when I had bloods and then to the follow up appointment for the results.

I sat down in the consultation room and heard the words, “I’m sorry, but your test came back detectable, you must be very disappointed”. The news was crushing, but it was a relief. I could stop hiding, and get on with my life now. A few months on, and I’ve picked myself up, and I’m slowly getting things back together.

I’ve been told that I would be ‘eligible’ for a new drug, and that it is a ‘cure’ that works in 90 per cent of cases.

Sofosbuvir with its lower side-effect profile comes at a massive cost for the twelve-week course. The new drug, which works in 90 per cent of cases comes in at around £35,000.

The huge cost means that for the moment at least, I will have to deal with living with hep C for a while longer.

Although I am disappointed that after all the drama that taking treatment caused, I’m still living with hepatitis C and will have to wait a while longer for treatment. I’ve stopped accepting the rejection of others and letting that fuel my own insecurities.

I’ve met other people who have been living with hep C for a while, and have tried treatment with the interferon stick more than once. I’ve met people who have cleared it, and others who haven’t.

‘I’m not dirty, I’m not undateable, and most of all, I’ve learnt to love myself again’

They’ve helped to show me something important – I’m not dirty, I’m not undateable, and most of all, I’ve learnt to love myself again and I can’t thank them enough.