Contents
- Interferon relapsers treatment approved
- National Strategy
- News in Brief
- Complementary Therapies
- Taking up the challenge
- Ongoing testing
- Preventing drug mix ups
- From Doug’s Desk
- Oral Health
- Aushep 8 Diary
- Book Review
- Mail Bag
Interferon relapsers treatment approved
Interferon-ribavirin therapy has been approved from October 1 1999 for people who have relapsed following Interferon alone. This provides new hope for the growing population of individuals who up until now have not been able to access further treatment.
A study by G. Davis et al involving 345 patients who had relapsed after Ifn mono-therapy, then retreated with either Ifn alone or Ifn+Ribavirin for 6 mths showed a significant increase in sustained response (SR) rate in the combination group (5% Ifn.vs.49% Ifn+Ribavirin). Lower viral loads were associated with SR in both groups.
S.A. treatment centres have been expanded to include not only the Royal Adelaide Hospital and Flinders Medical Centre, but also the Queen Elizabeth Hospital and Lyell McEwin Health Service, making treatment accessible for many more people. This is not a trial, but section 100 criteria will apply.
Combination therapy will comprise of 3MIU Interferon three times a week plus 1,000 mg– 1,200 mg (depending on body weight) of Ribavirin capsules daily for a period of 6 months. Most people will not need to be biopsied again unless your specialist believes that there is questionable biochemistry or cirrhotic problems with the liver. Interested individuals should revisit their specialist and request to be placed on the relapsed client waiting list.
National Strategy
GPs & Health workers - greater knowledge & improved attitudes! Greater Public Awareness! Research for a Cure ! Better treatment of symptoms !
These were the areas of most concern expressed by people living with hepatitis C who responded to the Hepatitis C Council of SA survey and ‘Phone In’ which sought comments for our submission to the 1st National Hepatitis C Strategy. There were many comments about GPs, specialists and other health care workers. While some people reported they had positive interactions with their health care providers, many more had negative experiences. People wanted to see improved GP knowledge about hep C, clear consistent information particularly at the time of diagnosis, better ongoing medical support and non-judgmental attitudes from their health care providers.
Obviously people who have chronic hepatitis C infection are concerned about resources being allocated to find a cure. However, the more pressing concern for many was about research into better treatments (including complementary therapies) for the debilitating symptoms of hepatitis C.
Many, many people raised concerns about the lack of public awareness around hepatitis C and told their experiences of discrimination and isolation. The general public remain uneducated about hepatitis C and this leads to fear, stereotypical attitudes and discriminatory practices towards people living with hep C. A public awareness campaign needs to address basic, clear information about hepatitis C transmission routes and ways hepatitis C can not be transmitted, as well as a sensitive portrayal of what it means for people to live with hepatitis C.
Many other issues were also raised. There were 81 responses and the Council would like to thank everyone who contributed their views, ideas and personal experiences.
For a copy of the submission, please contact the Council on 8362 8443.
News in Brief
Hepatitis C Research: Published in the journal Science July 99 are two studies that may improve the treatment of hepatitis C.
*German scientists have engineered the hepatitis C virus genome in a way that it reproduces in cultured human cells. In theory, enabling the viral life cycle to be studied, as well as potential antiviral treatments in the lab.
*American researchers reported on a surface protein that is only produced in genotype 1. This protein inactivates an enzyme that is the key to interferon’s effectiveness, and explains one of the reasons why genotype 1 is so resistant to interferon therapy.
Source-Hepatitis Central
Combination Therapy and Cirrhosis: With a focus on cirrhosis, researchers from Erasmus University Hospital Rotterdam, analysed individual patient data from 6 controlled trials with an Ifn-Ribavirin arm reported over a seven year period. Results have shown a significantly higher sustained response rate for patients with cirrhosis receiving combination therapy than those treated with interferon alone.
Previously untreated cirrhotic patients.
| 6 mths Interferon | 6 mths Interferon-Ribavirin |
|
Genotype 1 1% Genotype 2/3 5% |
Genotype 1 7% Genotype 2/3 24% |
Source-Gastroenterology August 99
St. John’s Wort: Researchers at a meeting of the American Assoc. for Photobiology have advised people taking the herb St. Johns Wort to wear wraparound sun glasses and a hat to protect themselves from the sun. Hypericin, the active ingredient of St. Johns Wort reacts with visible and ultraviolet light and may lead to cataracts. It was also recommended not to use light therapy or tanning beds while using St. John’s wort. Hypericin did not cause any protein damage when kept in the dark. D. Weatley, a London psychiatrist added hypericin worked extremely well for patients with mild to moderate depression and he’d had no complaints from patients about side-effects. (People taking St John’s Wort need to inform their doctor before starting any SSRI type antidepressant eg. Prozac, Zoloft, Aropax etc.)
Reported in New Science 24 July 99
Hepatitis C Clears Faster in Kids: Children with Hepatitis C may fight off the infection better than adults can, according to a new study. Researchers examined 458 who underwent heart surgery in Germany long before 1991, when that country began screening its blood supply for viruses such as hepatitis C, a leading cause of liver disease. The doctors found that 67 of the children-15% had acquired hepatitis C during their operations. But 20 years later, the infection had cleared on its own in nearly half of he patients. Among those in whom the infection was still present, few had developed liver disease-even though those few patients also had other risk factors for liver disease, the researchers said.
Study published in The New England Journal of Medicine; source The Associated Press
Complementary Therapies
I have been trying another herbal tonic since the last Hep C Community News. It’s called Astra Forte and it’s main ingredient is Astragalus (mixed with reishi mushrooms) which apparently boosts the immune system, increases the body’s own interferon and acts as an antiviral medicine. It is best used for chronic illness rather than acute (chronic being six months or more). I supplement spirulina which I know gives me that extra bit of energy.
Although I thought it a bit expensive ($20 for a 100ml bottle), I was assured by a naturopath (who I spoke to whilst at the Australasian Hepatitis C Conference in Christchurch N.Z.) that it was good stuff. It was at this conference that I also learned of Astragalus’ involvement in a clinical trial.
Clinical Trial of ComplementaryTherapies
There were lots of good things to come out of the Conference in N.Z. One session out of many that I found very interesting was by Ses Salmond. A clinical trial is being established to test the following hypothesis: “That the use of four different antioxidant and antiviral preparations help improve Hep C outcomes”.
Methodology: The trial will be conducted as a randomised, double-blind, placebo controlled clinical trial for the duration of six months. The four trial preparations are:
1. Silymarin tablets: the active group of flavonolignans present in St. Mary’s Thistle (silybum marianum).
2. Enzogenol tablets: an extract of the flavonoid and proanthocyanidin antioxidants from the Monterey Pine/Pinus radiata.
3. Grapeseed extract tablets (Catechin Polymers from Vitis Vinifera)
4. Herbal mixture containing: St. Mary’s Thistle (antioxidant); St. John’s Wort / Hypericum Perforatum (antiviral); Shisandra Chinensis (antioxidant); Astragalus Membranaceus (antiviral and antioxidant).
The efficacy of the trial preparations will be measured by:
a) Liver function tests, especially ALT (serum alanine transferase)
b) Polymerase chain reaction (PCR) tests, including viral detection, viral load and genotype.
C) Subjective weekly participant health appraisal questionnaire.
This trial will be held at the Leichhardt Women’s’ Community Health Centre in Sydney. Once this exciting trial is completed (in approximately one year’s time) I’ll let you know the results in the ensuing Newsletter.
P.S. A number of people have expressed an interest in purchasing herbal preparations at a reduced price through bulk buying. The Council is currently looking into this to see if it could be a viable thing for the future. If you are interested in being part of a collective, ring the Council and express your view.
Fred.
Taking up the challenge
I’ve heard many people complain that their doctors don’t give them enough info on Hep C. As a community we tend to look to GPs for every answer. We expect them to know it all and be up to date. In doing so we give up any power we have over our situation. At the recent Australasian HCV conference a paper presented by Claire Booth, titled “Going Shopping with a Shopping List”, put these expectations into perspective.
Compared to asthma for example, Hep C is way down the list of common complaints seen by GPs. Many GPs only have one or two patients with Hep C and their understanding of sub-clinical symptoms can be limited. Time constraints, the reliance on pathology results alone and a failure to validate symptoms often leave the patient with an overall sense of frustration and helplessness. Feeling powerless in a situation increases anxiety and has a negative impact on the patient’s quality of life and may contribute to a poorer prognosis.
To overcome this imbalance, learn about the virus yourself. Through many sources (see aside) you can gain knowledge of HCV, its effects on the body, symptom management and treatment options. Once informed, you are in a better position to build a different relationship with your doctor, one that promotes active participation in your own health management. You have the best knowledge of self and symptoms, the key is learning to communicate these effectively to your doctor.
Prepare for your next consultation by:
Making a double appointment if you need more time.
If you have questions make sure you write them down and ask them.
Make the best use of your time by discussing the most important issues first.
List your concerns and detail them, eg. If you experience lethargy don’t just say “I feel tired” be more specific, say when. Is it after eating, after work or all day?
If you feel nausea, record when. Is it on an empty stomach or after food or drinks, what time of the day? Are there particular foods or drinks that make it better or worse?
Tell your doctor how your symptoms impact on your quality of life.
Through a greater understanding of the virus and its effects on the body, patients are able to take more responsibility for making decisions regarding their own treatment. Thus retaining some control that reduces stress and improves quality of life.
Deborah.
Preventing drug mix ups
Take these steps to guard against medication mistakes:
Carry a list of all your medications and allergies. Be sure to include any supplements and herbal remedies you regularly take.
Use one pharmacy
Be inquisitive, ask both your doctor and pharmacist when and how much of this drug should I take? What food and drinks should I avoid? Should I take it on a full or empty stomach? What side-effects may I encounter and which should concern me?
Read warnings on labels and accompanying inserts.
Take medications with water unless otherwise directed.
Ask if you can try a non-drug alternative first, especially if you take many medications.
If you’re in hospital make sure your allergies are listed and checked each time you are medicated.
Report side-effects to your doctor.
Find out what times are busiest for your pharmacist and try to avoid them.
When new medications are started or the dose increased, LFTs should be checked at 2-4 weeks
Adapted from Hepatitis Alert, Winter 1999
From Doug’s Desk
For the last week I have been sitting at my desk which is groaning from the weight of accumulated papers from the conference and elsewhere, and feeling a bit like Oscar Wilde when he wrote “I was working.... on the proof all the morning, and took out a comma. In the afternoon I put it back again”. It’s now more than a decade since the hepatitis C virus was discovered and it certainly feels like things are gathering momentum with the Commonwealth taking submissions from the public this week as part of the First National Hepatitis C Strategy.
In the last issue I promised to report back from the 2nd Australasian Hepatitis C Conference which took place in Christchurch NZ from the 17-19th August. Three people from SA presented papers at the conference. Ian Henderson from COPE gave a paper entitled “Userphobia”, Liz O’ Keefe presented a paper entitled “HCV Prisoners and their Partners” and Liz Coates presented a paper entitled ‘Poor oral health - a factor in quality of life for people with Hepatitis C infection’. A condensed version of the presentation by Liz Coates is on page 11, I am sure that Ian and Liz O’Keefe would be happy to supply any interested person with a copy of their papers. There were far too many sessions at the conference to report on in one article so I have selected only a few that I attended.
So what was good about the conference generally? It’s ‘feel’ was very friendly, there seemed to be a different mix of people from last time, and it was noticeable that at least some presenters made efforts to unpack difficult concepts. The NZ organisers were very friendly and went to great lengths to make sure that everyone was well looked after.
Matthew Dolan ( author of “The Hepatitis C Handbook) was the first of the conference keynote speakers to talk. The theme of his presentation was global trends in hepatitis C. Among other things he informed us that there are currently 170 million people in the world with Hepatitis C; 40 million people in China have hepatitis of one kind or other; and in most countries about 2% of the population have hepatitis C with about 4% in developing countries. We were very proud to hear that Australia’s response to hepatitis C has been the best in the World. He spent a lot of time talking about Traditional Chinese Medicine (TCM) - he had visited China on his way to Australia. He stated that the quality of TCM had declined after the Cultural Revolution and had never recovered; that it was almost impossible to get good traditional treatment in China now unless you are one of the elite and that the quality of TCM in other Asian countries with large Chinese populations is far superior. I felt that he over-elaborated on the TCM stuff, but given that this appears to be what he feels passionate about it was understandable he would want to talk about it at length. I must admit that I felt relieved when it was finished - the damp fire in my liver was starting to smoulder!
The second keynote speaker was Miriam Alter an American Epidemiologist ( someone who studies how diseases, especially epidemics, spread through populations). Her keynote address was also on global trends. In essence her speech was about three global patterns: In countries like the US and Australia most people with hepatitis C are under 50 years of age, the main route of transmission is through IDU and most people were infected in the last 10-30 years. In Countries like Japan and Italy most people with hepatitis C are over 50 years of age and mode of transmission tends to be contaminated medical equipment and folk medicine, e.g. acupuncture needles in Japan. In Egypt there is no difference in the rates of transmission for each age range - they tend to be uniformly high. The main mode of transmission seems to be contaminated medical equipment.
Towards the end of her speech she put up a pie chart with various transmission rates. It was there only briefly, but long enough for me to see a wedge of about a quarter of the pie representing sexual transmission. The damp fire in my liver seemed to be spreading to my blood, which was now boiling away quite nicely. She finally got around to saying that sexual transmission rates in the USA were around 20 % and that the reason for this high rate of infection was due to the large pool of infected people in that country - currently around 3 to 4 million. When it came to question time I mentioned that at the last Conference in Sydney, she had stated that the sexual transmission rate in the US was between 1-2 % and asked could she explain why it had increased 18% in only two years. She replied that the 20% were all new infections in which sexual transmission was the only risk factor. I was too tired to think through clearly what she was saying at the time, but knew it would not hold up to analysis when I had time to think about it more clearly.
So, what’s wrong with it? Well first of all, any survey that includes risk factors which are illegal is always susceptible to bias, as people who think they are at risk of being punished or exposed will often simply lie. To rule out all risk factors other than sexual transmission the people in the study, prior to being diagnosed, would have to have never been in a hospital or to a dentist, never had their body pierced or had a tattoo or an injection, never shared a razor etc., etc. It is not an easy task to exclude most risk factors in anyone. There is another problem with what she said that I feel is more serious. Only if the rate of infection in the last two years has been astronomical could the total percentage of people in the community with hepatitis C have increased to the extent that her ‘large pool of infection’ argument could be valid. If the overall rate of transmission is fairly consistent, with the number of new infections roughly the same each year, then two years ago the “pool of infection” would still have been very large, yet the rate of sexual transmission then was only 1 or 2 percent?
So why am I so fired up about this? Because I feel that anyone who talks about the sexual transmission of hepatitis C in a public forum has an ethical responsibility to make sure that the findings they present are supported with solid evidence and are clearly reported, something I feel was sadly lacking in this presentation. The Australian National Council on AIDS and Related Diseases (ANCARD) Hepatitis C Subcommittee published a document in 1998 which clearly states that hepatitis C is not commonly transmitted through sexual activity and is not defined as a sexually transmitted disease. Sexual transmission if it exists at all is generally thought to be around 1%. If people are interested in this I will do a review of all previous studies on sexual transmission for a later newsletter.
I have discovered I was not the only one offended by Miriam Alter, and that at least one prestigious mover and shaker in the hep C world had bailed her up in the conference lobby about this issue and was unsatisfied by her explanation.
In the afternoon I attended two keynote speaker presentations on molecular biology, the first by Eric Gowans, a fellow countryman from Scotland. This is a difficult subject for almost anyone to understand and the only thing I didn’t have any trouble with was his accent. He told us that the virus is similar to the yellow fever virus; that viral activity tends to be low, most likely to avoid detection by the immune system and that viral replication is a slow process. He showed a photograph of the virus and then went on to overheads which showed the structure of the virus, in particular weak points in it’s structure that could be possible sites to attack with anti-viral agents, yet to be developed. He mentioned that protease inhibitors (which are used in the treatment of AIDS) have no effect on these sites and that after 5 years of experimentation most researchers had given up on them. He ended the session with a ‘hit’ list of the particular target sites around which new antivirals could be developed.
The second keynote speaker on molecular biology was Peter Simmonds. Simmonds is a microbiologist who has done lots of work on genotypes and has the distinction of having devised a classification system for them. To do this presentation justice would require an article on its own so I will simply summarise what I could understand. Simmonds explained how the hepatitis C virus can be classified into six main types by taking samples from around the world and comparing their genetic sequence. He then went on to show the geographical spread of these viruses, showing how some of them are very widely spread e.g 1a, 2a and 2b, while others e.g. 5a and 6a, are restricted to specific geographic areas. To illustrate how different genotypes evolve and the rate at which they do this he used data and diagrams from what has become quite a famous study of 600 Irish women who were all infected from blood transfusions from a single donor (In the last issue of this newsletter Deborah did a fine summary of this). By following up these women for 17 years it has been possible to look at how the genetic structure of the virus mutates and the rate at which it does this e.g. genotype 1b, as a subtype of genotype 1, most likely appeared around 70-80 years ago. At present these estimations are not accurate enough to calculate exactly how long it takes for one genotype to evolve into a completely different genotype, but it may be more than a thousand years. The practical implications of this research are that we now know that some genotypes are more resistant to interferon than others. Aushep 8, a current clinical trial of Interferon plus Ribavirin, uses a different treatment approach for different genotypes. This was a really elegant presentation of material which is difficult to understand - I felt Simmonds had put a lot of effort into simplifying it.
Stephen Locarnini, a Head of Research at VIDRL in Melbourne presented some of the most recent Australian data on treatments. This consisted mostly of a comparison of monotherapy with combination therapy. He said that dose escalation did not seem to provide any consistent benefit, but extending the treatment period did. In the last newsletter I reported on some very impressive preliminary outcomes from US trials of a new type of Interferon called Consensus Interferon. During the conference I asked Stephen Locarnini and two other knowledgeable people about Consensus Interferon, and they all agreed that it was no better than combination treatment in it’s outcomes. However I will keep an eye on this issue to see if the preliminary outcomes are supported.
As well as the above presentations by keynote speakers I attended numerous other sessions some of which I will briefly describe. Bill Jang, told us how he set up a support group in Christchurch - these people have been doing it hard with only minimal resources, which made me think that for all our whingeing and carping we are quite lucky in Australia.
Claire Booth gave us details of a novel programme in Sydney called TRAIDS that provides counselling, information and support for people with medically acquired HIV and hepatitis C. This service provides comprehensive psychosocial support for the affected person and their family; a range of symptom management strategies and even includes home visits.
Greg Dore presented data on the natural history of hepatitis C. I won’t go into the details of this as I outlined some of the main issues in the last newsletter, but he has reviewed all previous studies on natural history that looked at the rate of progression towards cirrhosis as well as published data on the prevalence of cirrhosis in hepatitis C populations. He claims that the progression rate is much lower than previously reported, around 8% over 20 years. The rates I reported in the last newsletter were around 30% at twenty years. These results were from a study by Thierry Poynard, and while I would much rather believe in the lower figure I have the utmost respect for anything that Poynard has so far published - as far as I’m aware he hasn’t got it wrong to date - so I am taking a wait and see approach to these figures.
At the final summing up of the conference almost everyone had something positive to say - unlike the previous conference. Some examples of those summaries which stick in my mind are as follows: Geoffrey Farrell (a Sydney Hepatologist) admitted that he had been rather cynical and perhaps a bit arrogant in thinking, as he was flying into Christchurch, that this would be just another conference to get through, and he was surprised that it had turned out so well and had such a positive spirit. Someone requested that researchers present papers in a way that makes them more easily understandable for people who have no medical background. Someone sceptical about Traditional Chinese Medicine made the point that this treatment has been around for over 1000 years yet China still has some of the highest levels of viral hepatitis. Another person said that he thought Liz Coate’s (from SA) presentation on Hepatitis C and dentistry stood out as one of the best at the Conference - the croweaters were naturally very proud!
It’s time for my own summing up. Now in it’s first decade hepatitis C is being taken seriously at last and my feeling is that this was one of the main reasons for the success of this conference. We still don’t have a cure, but we have a few more treatment options than we had at the last conference. The clinicians and researchers haven’t got around to talking too much about what we can do to alleviate our symptoms, but at least they acknowledge that some of us do have them. At the next conference I would like to see a lot more stuff on prisons (probably a whole stream) as this has been one of the most neglected areas in the last ten years. I would like to know what is happening in migrant communities which are known to have high rates of infection. We need more research on symptoms, not just physiological but psychological as well. We already know that immune and probably hormonal factors are involved in this illness, but know little about how they operate - this should be addressed. It is my fervent hope that many of these issues will be included in the First National Strategy.
Doug Mellors
Oral Health
Poor Oral Health - a factor in quality of life for people with hepatitis C
By Elizabeth Coates, Richard Logan and Bronwyn Scopacasa of the SA Dental Service, Adelaide Dental Hospital, Frome Rd, Adelaide.
It was assumed from anecdotal (non scientific observation) and clinical evidence that people with hepatitis C had poorer oral health than other groups in the community. Several proposed causes for this were the use of methadone medication, poor utilization of dental services, injecting drug use and poor diet. Several additional questions arose for our research, such as: could people with HCV suffer loss of esteem due to poor oral health; what impact might this have on their lives and were difficulties experienced with eating due to poor health?
A specific dental clinic was established in Adelaide to investigate and manage oral health of people with HCV infection. This was funded by the HIV/AIDS and Related Programs Unit of the Department of Human Services, South Australia. Over a period of time, our clinic found that the number of decayed and missing teeth experienced by people with HCV was 2-3 times greater than found in other clients. One explanation suggested for this was that people with HCV infection might not visit their dentist as often as other people. Our research found however that people with HCV infection had gone to the dentist as often as other groups of clients indicating that the dental treatment may need to be more intense in order to save teeth.
Over half of the people attending the clinic had dry mouth or little saliva. As saliva is extremely important in protecting teeth and gums it is possible this dryness explains some of the decay of teeth. Some medications, such as methadone and antidepressant medication are noted for causing a dry mouth. But in this study over half of the clients took no such medications and yet, they had a dry mouth. This suggests that the dry mouth could be caused by a range of factors, including the hepatitis C infection.
People were asked if the health of their mouths and teeth had affected their quality of life. The answers given were compared to previous surveys and the clinic found that the social impact of their dental health was extreme with significant problems in all areas investigated. People with HCV avoided going out as a result of mouth problems, were uncomfortable about their appearance, had toothache and had difficulty relaxing. Clients were asked if they felt that problems with their mouths had impacted on employment opportunities. Over half felt they had been disadvantaged in gaining employment because of poor appearance or by needing to seek dental treatment instead of attending work.
Conclusions drawn from this study were that there is an urgent need for priority delivery of dental care for people infected with HCV, as their oral health is poor relative to comparable socio-economic groups. Treatment must incorporate a preventative orientated dental program and education on oral health should begin when HCV is diagnosed. People with hepatitis C infection often appear to have dry mouths and this may be the cause of poor oral health. Quality of life is impacted by poor oral health with people often experiencing pain with their teeth and mouths, preventing them from relaxing and going out.
From research presented at the Second Australasian Conference on Hepatitis C.
For a full copy of this research paper, contact the Hepatitis C Council SA.
Aushep 8 Diary
I recently commenced treatment on the Aushep 8 trial, a combined interferon/ribavirin trial, and was asked by the Council to keep a diary that could be published in the newsletter. In this, the first instalment of the diary, I will give you some background to how I came to join the Aushep 8 trial.
I had been cruising along quite happily since being diagnosed Hep C positive in 1995. For 3 years my liver function levels had never been raised and, apart from feeling a little tired from time to time, was in fairly good health. During 1998 I began experiencing stress in my work environment and had consequently started smoking cigarettes and having more than the odd drink (after totally abstaining for the previous 3 years). With the onset of stress in the work environment I began to experience more tiredness and combined with drinking this increased to nausea. However, believing myself invincible, I chose to ignore these signs and it wasn’t until I went for my regular 6 monthly check up that I acknowledged that I was getting sick.
My liver function test (LFT) results revealed increases in all levels with my ALT’s jumping from 32 to 350. I spoke with my doctor about the increase, what could have caused it, strategies to bring the levels back down, how we would monitor my liver function and the possibility of treatment. I cut out alcohol completely from this time, reduced the fat levels in my diet and began having LFT’s every month. Over the next 6 months all levels except my ALT’s normalised but with my ALT’s remaining at around 130 my doctor decided to refer me to the Royal Adelaide Gastrointestinal Unit.
On my first visit to the RAH I was offered a liver biopsy to assess the status of my liver. I expected this and had already decided that I would go ahead with it, after all I it had been around 18 years since I had come in contact with the virus (I think) and I wanted to know how my liver was holding up. I was also told about the Aushep 8 trial at this time and that I could choose to be a part of it depending on the results of my biopsy. Well first things first, I decided to go ahead with the biopsy and think about the trial later.
It took about 2 months from my first visit to go in for the biopsy. I had prepared myself well for it, attended an info session run by the Hep C Council and spoken to a few friends who had already been through it. In hindsight the worse part was the waiting, for the operation itself was over before I knew it and the sedative I was given meant it was no problem spending 4 hours lying on my back. While this is only day surgery, you are required to spend a full 8 hours in the hospital, in case of bleeding after the procedure. Fortunately I recovered well and by the end of the day I was glad to go home.
On my next visit I had good news, the biopsy had revealed only 1 in 4 scarring (on a scale where 4 in 4 is cirrhosis) and mild inflammation. This meant I was eligible for the Aushep 8 trial. At this visit I was given information about the trial, length, dosages and side effects. Another appointment was made giving me 2 weeks to decide whether to join up or not. I thought long and hard over the next 2 weeks, weighing up the pro’s and con’s, thinking about the side effects and how they would effect my life. In the end my decision to go ahead with the trial was based on the knowledge that if it was all too much for me I could always walk away.
At my next visit I had lots of blood taken for tests (LFT, genotype, viral load, pregnancy as the ribavirin causes birth defects and more) that would determine the treatment regime. I also had an ECG (heart monitor) as ribavirin can cause problems if you have a heart condition. This all checked out well and the ball was rolling for me to go onto the trial.
It took 3 weeks before the tests came back and I was to find out my interferon dosage and the length of the trial. It turned out that I have genotype 1, the most common and interferon resistant strain of the virus, and will be on the trial for a full 12 months. I was also put into a group that have a rapid start to the interferon, 5miu daily for the first 8 weeks of the trial before cutting back to the usual dose of 3miu 3 times a week. In addition to the interferon I am having 5 ribavirin capsules a day for the whole 12 months.
Well that brings me up to today, September 10. I had my first dose of interferon this afternoon after a lesson at the hospital, showing me how to inject myself. That was 3 hours ago and as yet I haven’t experienced any side effects, although I’m sure they are just waiting to happen. I have medication in the fridge, sharps container on top and have started the next 12 months of my life. Till the next instalment, in good health,
Heidi
Book Review
The Hepatitis C Handbook
I have just finished reading Matthew Dolan’s “Hepatitis C Handbook. His new version has the same name as the first book but contains much more information. If you haven’t already read it, I would advise that you get hold of a copy to read. There’s a bit more information on related symptoms and diseases that was a bit disconcerting but I believe that knowledge is ammunition against liver disease progression.
On a brighter note, the book offers good news on managing the virus, and there are a number of personal stories (one of which I’ll include here) by people that were very sick and are now reasonably healthy from acupuncture, Chinese herbs and lifestyle changes etc., which gave me a sense of hope.The book refers to advice on regaining a semblance of your former fitness.Overall, I strongly suggest that every Hep C positive person and partners/families, not to mention GPs and Gastroenterologists would learn and benefit from reading this book.
In the book Dolan mentions a place called the Gateway Clinic in London, which is a Holistic medical clinic for Hep C sufferers (there are acupuncturists, herbalists, naturopaths and free Qi Gong classes, medical doctors and more). I feel that there is a dire need for something like a Holistic Clinic in Adelaide and I am sure that most GPs and liver specialists would be relieved as well, to know that there was some treatment or treatments to alleviate symptoms that are available to their patients until a cure can be offered.
The Council is considering bulk-buying this book, which would reduce the price from $55 down to $43 (depending on the exchange rate). Still a lot of money I know. The Council will also contact libraries in the hope that they will stock copies of it, so, if you can get your hands on a copy, it’s well worth a read. If you are interested in buying a copy at the reduced rate you can ring Cathi at the Council during office hours on 8362 8443.
Excerpt from the book: Linda’s Story
In July of 1996 I was diagnosed with HCV, stage IV, with the beginnings of cirrhosis. My ALT was 85, and my AST was 68. A PCR taken in August 1997, revealed a viral load of 18 million. By early February 1998 my ALT shot up to 386 and my AST was 213, despite a vegetarian diet, weekly autohemotherapy, ozone treatments, and a multitude of supplements. Frankly, I was desperate.
I had persistent arthritic pain in my joints, flu symptoms, brain fog, diarrhoea, and digestion problems. A friend recommended Traditional Chinese Medicine and gave me the name and phone number of Dr. Zhang. On February 6, 1998, I began weekly acupuncture treatments and taking a variety of herbs throughout the day. By April 9, 1998, my ALT went down to 49, my AST went down to 44, and all the negative symptoms associated with HCV disappeared. Currently, I have more energy than I’ve had in years, and I’m optimistic about living a long, healthy life.
Fred.
Mail Bag
Dear Kerry
Re: Council contribution to the National Hepatitis C Strategy Consultation Forum.
I am writing to thank the Hepatitis C Council of South Australia for the contribution which it made to the success of this event. I am grateful that assistance was offered on a range of levels leading up to the forum, including the refining of the small group process which formed the backbone of consultation. On the day the assistance of the Council’s paid and volunteer staff and members of the community of people living with hepatitis C made a seamless operation possible, and contributed significantly to the success of the forum. In particular I wish to thank both the Council and the community members who participated in the forum, for ensuring that community perspectives were well represented in the consultation process.
Yours sincerely
Kim Petersen
Manager
HIV, Hepatitis C and Related Programs.
