The brutality that was old school Hep C treatment…
So, I had Hep C. Strain 1.A.
This was the early 2000’s.
It was a shitty time for Hep C treatment, but FAR better than the outcome that people with the previously classed, non-A non-B Hepatitis had.
Before they isolated Hepatitis C as its own variant.
Before there was a treatment, a human being could look forward to a drawn-out decline leading to eventual death from cirrhosis or liver cancer.
Things were looking up! There WAS a treatment!
But, by today’s standards, the treatment was something from the dark ages.
For a start, it was expensive. It was not yet on the PBS so the Government required you to pass a psychological and medical examination before commencing treatment.
The first time I applied to undergo what was called “Pegylated Interferon and Ribavirin”, I was still chaotically using, mostly homeless and not in the (needed) psychologically stable place to begin the treatment.
This was not treatment to undertake lightly. Daily you would take a tablet, Ribavirin, and weekly, usually on a Friday so that if you felt unwell you had all weekend to recover, you would self-administer a subcutaneous injection of the Interferon, a very strong medication that together with the tablets fought the Hepatitis C, but unfortunately would also fight the good cells in your body too.
The list of side effects included –
~ Flu-like illness
~ reduced appetite
~ Reduced white blood cells
~ Loss of appetite/ mild nausea
~ Mild headache
~ Mild diarrhoea
~ Hair thinning/ loss (reversible)
~ Joint and muscle pain/discomfort
Because of the massive cost to the Government, they needed to be sure that:
A) you would remember to take the medications as directed, for an entire year.
B) that you wouldn’t just go out and reinfect yourself
C) that you were a good candidate to clear the Hep C.
My strain, 1A was the most stubborn out of the strains of Hepatitis C as it had been around the longest, it was quite good at doing its job of being a pest and killing you slowly. It could be hard to budge. Newer strains had better treatment results and only needed 6 months to work. 1A had a 50% chance of working and your odds were worse the older you were, the longer you had had the disease and your general health.
So, a few years (quite a few) went by and I was “in a better place”. I had been abstinent from all drugs and alcohol for 3 years after committing myself to rehabilitation and to a 12-step fellowship. This was the only way out of my previous way of living and saved my life. It is NOT for everyone and in the long run wasn’t the answer for me; I “took what I needed and left the rest”.
I attended the smelly old clinical corridors of the old public hospital that was offering the treatment. THIS time I DID pass the physical and psychological tests and I was given my first little foam esky that contained my daily Ribavirin tablets and a month’s worth of the injectable interferon. It was called “Pegasys” and had a lovely picture of a winged horse on it.
Otherwise, it was terrifying to look at. And triggering for an ex IV-drug user. It was to live in my freezer for the next 12 months, 1 new packet a month at a time. Once I had run out, I would attend the hospital for my monthly blood tests so they could keep an eye on how my white blood cell count was looking; essentially how much damage the drug was doing to the cells that are needed to protect me from getting unwell as I was ‘immunocompromised” on the Hep C treatment, so a flu could hospitalise you if were so unlucky as to catch a bad one.
There is a lot of shame in being a “drug addict”. It comes from society at large, it comes from drug policies that make you a criminal for using, then eventually it comes from within as you internalise the messages being SHOUTED at you from all around you. Getting treatment for Hep C almost felt like penance. I had been naughty. I was a bad person and I deserved to have to go through this treatment.
So, for 11 months solid I took my medication.
I injected on a Friday into the fat in my stomach, the smell of the alcohol swab ALWAYS making my heart race. That weekend I would lie I bed, aching all over, as though I had a horrible flu as the interferon waged a war on the Hep C. The depression set in quickly after commencing, as I warned it could, so I went straight onto some medication to help me sleep and help with my mood, which made me feel even tireder than before, but at least I wasn’t feeling like life wasn’t worth living anymore.
My hair fell out about 3 months in.
I remember brushing it, and it is felt so soft, like butter, then suddenly it was all in my brush. I then used my fingers to gently comb the rest, as it came out in clumps. I was literally half bald, so I shaved my head. I wore beanies and caps for the rest of my time on treatment.
I have one photo from that time.
I had TRIED to get on with my life.
I was studying at TAFE and doing some house cleaning as cash in hand.
But, that one photo says it all, I was grey skinned, bald, no eyebrows as all body hair had fallen out, skinny and my eyes were yellow.
At the 11th month mark my white blood cell count was dangerously low, so I was pulled off the treatment one month early. They told me I had had a very good response to the drugs. No shit?! I looked like I had been on chemotherapy for a year! In a way I had been, a much slower and lower dose, but essentially the same action, to eradicate a disease that would have most likely shortened my life, if not kill me.
I was always feeling my Hep C before I started the treatment, but I didn’t know it.
I was always tired. I could not eat anything with cream or anything fatty. My liver sat bloated above stomach and to touch it was painful. I did not look healthy, and those yellow eyes gave it all away. My blood tests would alarm my GP, as they came back as though I had end stage alcohol use dependency, with my ALT’s shockingly high always, even though I did not drink or even take a Panadol at that stage. These were all signs that my liver was being damaged.
One month out from the treatment and my hair grew back, slowly, but, the most amazing part of clearing my Hepatitis C was the energy I suddenly felt! I did not even realise how sick I had been living all that time with the virus in my body, until I had cleared it.
I felt alive for the first time, healthy and brimming with energy. I felt well.
I passed my 6-month test, many didn’t.
I was permanent clear of Hepatitis C.
Many would have a relapse of their hepatitis. Not from using, just the fact that the strain was so hard to get rid of.
Those lucky enough to be offered another shot at clearing it, yet another year on that horrific treatment, would look so unwell, so demoralised, as they knew that if it didn’t shift this time, there would not be another chance.
I will forever have the antibodies in my system.
I will forever have that judgement from “health professionals” every time I need to tell them for whatever reasons, surgeries etc… because if I don’t tell them, it will be brought up as them telling me I have Hep C.
No…I have the antibodies.
They are the left-over remnants of a war that took place in my body, to kill a hostile invader that wanted me sick and dead, and that was overpowered by Pegasys, Pegylated Interferon, a “flying horse”.
I’ll forever be grateful for the chance to clear my Hep C.
However, had I known the future of hepatitis treatment, had my Hep NOT been so aggressive, I would have wished that I had waited.
Today, at any QuIHN clinic you can walk in and get an instant “finger prick” blood test to find out if you have it or not.
IF you do you have a positive result for Hepatitis C you can go onto a 12-week,
(12 WEEKS??!!!) prescription of tablets only. This is for ALL the strains, 1A included.
“With PEG/ribavirin treatment alone, genotype 1 HCV used to require the longest duration of treatment with the least likelihood of success. With sofosbuvir, genotype 1 is now curable in more than 95 percent of people treated for only 12 weeks”
You will not lose your hair and you will not suffer the horrendous side effects of the old treatments.
If you have ever been overseas and had to have medical treatment, gotten a tattoo, used intravenous drugs or any other accidental routes of transmission (eg. snorted cocaine using the same notes as someone that may be unknowingly carrying Hepatitis C!)
The test is so quick and painless and LIFE SAVING. It is better to KNOW and get onto a FREE COURSE OF MEDICATION and be SUPPORTED by HEP C PROFESSIONALS, than wonder, what if?!