Positive Life NSW

Hep C virus Malcolm shares his experience of searching for the right treatments and how talking openly with his healthcare team helped him take control of his health.

To live with one virus can be challenging enough, but to live with both the HIV virus and the Hepatitis C Virus (HCV) has presented challenges that quite frankly I would have rather done without.

I live with both and to the medical profession this is referred to as co-infection or being co-infected. These are terms that I do not particularly care for as it labels me as a couple of viruses or some disease rather than as a person who has these viruses. My doctor just says I have a lot going on and that is an expression that I have no issues with.

One of the issues of having both is that there are less HIV treatment options available as some are too toxic for the liver. That is not to say there are not the treatment options available, but back before I started treatments the options were less.

When I became too sick to work many years ago, my doctor suggested it may be a good time to consider what was then the new trial for the treatment and cure of HCV. He suggested that if the treatment worked, I would not only have one virus less to contend with but there would be more HIV treatment options available.

While I knew that the treatment for HCV was not particularly pleasant, it may be worth giving it a go as I had not yet started HIV treatment. I was having my bloods done regularly and the good old CD4 cells were in a state of decline. I was in a kind of a state of denial as I was finding it difficult dealing with my health at that time. In other words, I had not taken control of it as I have now.

After considering my doctor’s suggestion, I made an appointment to see the HCV specialist. He was fantastic and explained everything thoroughly and pulled no punches about the treatment. He did not pretend that it would be a walk in the park, but depending on my geno type, the success rate at that time was around good odds. It is better now but 40 per cent was still fairly good odds, I thought, and I am not even a betting man.

My doctor told me to consider it and make the decision. As I was not working, I thought I would do it as I preferred trying to get rid of HCV before starting HIV treatment.

The next thing I had done was a liver biopsy to determine my geno type. Like most people with complex medical issues, I have had to endure quite a few medical procedures that are not particularly pleasant and I put this one close to the top. To me it was more akin to torture. I was told that the result was good as I had geno type three, which seemed to impress my specialist and my doctor as the chances of cure was fairly good.

Starting treatment
I began a combination of pegylated interferon, injected once a week under the skin, and six ribavirin tablets per day. I remember starting treatment very well when I injected myself under the CNC’s guidance at the Immunology B Ambulatory Care unit at St Vincent’s hospital. I felt a strange sensation going through my body, but I accepted it for what it was.

I stopped sleeping after about a week and then started to cry all the time, which is completely unusual for me. I never cry and yet I had started crying for no apparent reason. The next thing I experienced was racing thoughts and I literally started to think I was losing my mind. Then I started talking to the walls in my flat, bus shelters, trees and shop windows. People, who I considered friends and who knew that I was on treatment, were spreading rumours that I was a crystal junkie. This, I will admit, hurt a lot, particularly as I was not even drinking alcohol at the time. I was trying to keep myself fit while I was on treatment.

After two weeks, I had to see my HCV specialist to get more scripts. He did not want me to continue treatment, but I was insistent. I don’t recall much of the visit and I don’t recall that the nurse drew blood; I was told that at a later visit.
The weekend after I saw my specialist was a bit rough for me. I decided to suicide, but for some bizarre reason I decided to see my doctor in case there was a magic drug he could give me. It was never my intention to tell my plans for the future.

When I walked into his surgery, the first thing he did was congratulate me on the time I had done HCV treatment and that we were stopping it that day. I tried to argue but he informed me that me HCV specialist had contacted him and was concerned about me. He then told me to drops my pants and look at my legs, which were shaking. The peripheral neuropathy was much worse and then he told me that I was not going to kill myself. I asked how he knew that and he replied that he knew me.

I was diagnosed with mania and he told me that this would take time to go away, but it would. In the meanwhile, I was to see him three times a week, a psychologist once a week and my specialist once a week. These people became the glue that held me together during the next few hideous months.

A welcome diagnosis
Life experience has always taught me that out of every bad experience a good one will follow. One day when I was in his surgery, I told my doctor there must be some drug he can give me to stop what was going in my head. Then I clearly remember saying to him “You try to live with all this *!?# going on inside my head without all this other *!?# going on”.

He looked at me and said he thought I might have bipolar affective disorder. A light turned on inside my head, for all of a sudden the past 45 years of my life were now explained. I decided I had! He told me to stop self diagnosing. He believed I could not as he had known me for too long and was going to send me to a psychiatrist at H2M at St Vincent’s to assess me.

I went to H2M and was diagnosed with bipolar. I have to say this is one of the best diagnoses I have had because if you are compliant and take your mediation, bipolar can be controlled. I will admit that when I started taking epilum, I found it difficult. You lose those incredible highs, but I certainly did not miss those incredible lows.

For me, it was a relief, although a friend was not happy when I told people I was bipolar because it is a mental illness. “So what,” I thought. Twenty-five per cent of Australians have a mental illness and if my story could help one person then I would be happy. There was nothing to be ashamed of here.

After awhile, the mania was starting to be controlled. While in a manic exhausted haze, if such a thing can exist in parallel, I was starting to feel some sort of normality.

Taking charge of my health
My CD4 cells were declining rapidly during this time and I was concerned and thought that I should start antiretroviral treatment. My doctor and HCV specialist were less concerned as they wanted to hold off on treatment until the toxins from the HCV treatment had cleared my body to give my body a rest.

However my persistence won out. I had started to take control of my health for the first time. My doctor sent me off to my HCV specialist to discuss treatment options as he knew that no-one could prescribe me anything unless I had some knowledge of what I was taking.

I did that and my specialist suggested trizivir, which I thought was fabulous as it is a combination of three drugs in one. I read the information and discovered that abacavir, one of the drugs, can cause hypersensitivity in 5 per cent of people who take it. Again, the odds looked good to me and I decided to start it.

Ten days later I woke up to discover I was covered from head to toe in a painful rash. I felt so ill that I thought I was about to die. I went to see my doctor who told me to stop taking the drug immediately and then made an appointment to have a biopsy done by a doctor in St Leonards. The last thing I felt like doing was travelling by bus and train to St Leonards to have this done, but I had no choice after he wanted to confirm the diagnosis.

The results came back and the diagnosis was confirmed. I thought that treatments and I just do not seem to get on very well together. I asked my doctor where we would go from here. He told me that he had had a conversation with my HCV specialist and that I was to be treatment-free for awhile until the toxins had cleared my system.

With declining CD4 cells and a high viral load, I decided I needed a rest. I mentioned to a few friends that I decided to go to Bali for two weeks. I had not been for years and thought that it was just what I needed. A few thought that the suggestion was ridiculous, maybe they thought I was still not well enough and were being overly protective about my health. My doctor basically told me to plan the trip immediately and go as soon as possible.

I was very compliant and took my doctors advice! It was the best thing that I could have done at the time and I came back with more CD4 cells! I called them my Balinese cells.

Keeping it under control
In January 2004, after the horror year of 2003, I started another combination. Kaletra, lamivudine and tenofivir were suggested as the best for me. The drugs were proving their effectiveness, but I was not a happy chappy. Kaletra and I did not make good friends. I was becoming an expert on the public toilets in Sydney, which was not the best experience with so many near misses and some that did not miss!

After six months, I told my HCV specialist that enough was enough and I wanted a new combination. I was getting the feeling that there were not many left. So it was suggested that I try a new drug called atazanivir which would be taken with norvir (part of kaletra), lamivudine and tenofivir. For once something seemed to be working. One of the main concerns my doctor had was jaundice, a side effect of atazanivir, but I cared less than he did and said that if it worked and I turned yellow I would buy makeup! Fortunately the buying of makeup was unnecessary, even though I did go a little yellow for a few days, it disappeared as soon as it came.

This combination worked well for me and I stayed with it until I spoke to my doctor 14 months ago about dropping the lamivudine and tenofivir for another drug, truvada, which is a combination of emtriva (FTC), a drug similar to lamivudine and tenofivir.

Last year I went to see my psychiatrist as I wanted to change from epilum to another drug if possible. I had put on a lot of weight since taking epilum, but he informed me that none of these drugs are good for losing weight. There was one however that might be better depending on my kidney function and that is lithium. So we tried it. I maintained my epilum dosage while adding lithium and having my bloods done regularly. As it turned out, the kidney functions were not good, so we stopped the lithium.

Since then my kidney functions were not getting any better and so my doctor has taken me off truvada, as it contains tenofivir and can hurt the kidneys. I am now taking lamivudine again and raltegravir, which is good as the latter crosses the blood brain barrier and has slighty improved my neuropathy.

As far as the HCV is concerned, it still lives with me and I am learning to deal with it. The major issue I have is the lethargy that comes with it, but the interesting thing is that when you have something for a long time you understand the signs and you learn to manage it.

I recently had another liver biopsy to discover that I have neither liver cancer nor cirrhosis. This is great news after the time I had had with HCV. The other great news is that there should be a cure for HCV available to me in about five years.

I am not trying to alarm people about the current state of HCV treatment, as this was my personal experience and everyone reacts differently to medications. As I mentioned, living with both viruses is not easy as medications can be toxic for the liver. If you have HIV and HCV and have not considered treatment for HCV, it may be worth doing so as considering it costs nothing to your health as long as you keep yourself informed.

Resources

If you want more information about HCV, speak with your GP or specialist. The organisations listed below also provide information and support for people living with or affected by HCV.

Hepatitis NSW
Monthly Hep C support groups (Surry Hills)
Tel: 02 9332 1853 or 1800 803 990

Hepatitis Australia
Tel: 02 6232 4257

Hep C Infoline
Tel: 1300 437 222

H2M (HIV/HCV Mental Health Service)
Tel: 02 8382 3433

Multicultural HIV/AIDS and Hepatitis C Service (MHAHS)
Tel: 02 9515 5030
Translating and Interpreting Service: 131 450