COMMON QUESTIONS

Welcome to the “Your Questions” Forum. I have always found that a Question and Answer format tends to be more “real life” than just an information brochure.

Please note: these questions/answers below are not a substitute for consultation with your own doctor or specialist. Do not construe these answers as formal medical advice. They are only comments made upon the limited information given in an E-mail and do not involve the one to one interaction that does occur in a doctor/patient relationship.

Remember; always talk to your own doctor or specialist before making decisions on a change in therapy or in accepting a diagnosis.

HEPATITIS C

Question 1

I have had Hepatitis C for about twenty years. My liver function tests have been elevated and I am keen to go on to Interferon and Ribavirin. Do I have to have a liver biopsy as the diagnosis of Hepatitis C has already been made?

Answer

The liver biopsy is likely to show a couple of things. Firstly and perhaps most importantly, it will tell your doctor how severely inflamed and scarred the liver is. This will guide the advice to you regarding the advisability of treatment. However a Fibroscan is now the most common diagnostic test which is non invasive. 

The liver biopsy and fibroscan are performed to exclude the presence of other liver conditions e.g. if you had been a heavy user of alcohol, to make sure that there was not predominantly alcohol related liver injury.

The liver biopsy is unlikely to be much fun but in some cases may still be necessary.

 

Question 2

I have Hepatitis C and occasionally because of my work (I am a plumber), I do cut myself and bleed?

Although most people who work with me have the appropriate work clothes on, I am concerned that I might inadvertently infect somebody else. I guess what I really want to know is how long does the blood remain infective after a cut or an abrasion?

Answer

This is something that we do not know too much about. The HIV virus can remain viable in the syringe for up to four weeks and Hepatitis C virus for up to five months. Nevertheless, we do not know whether or not the virus in this situation is truly infective and we are assuming an absolute ideal environment for the virus with these figures. These are worst case scenarios.

It is, of course, important if there is a spillage of blood that you take the necessary precautions. Simply wiping the area clean and preferably using bleach will make the likelihood of any transmission almost zero.

I find it comforting to know that you are concerned about spread to other people. Please remember, however, that the person who has contact with your blood needs to have that blood enter into their own circulation and would need to have an exposed surface. If they came into contact with your blood and had intact skin, they would not contract Hepatitis C.

Question 3

I have Hepatitis C and feel that I will be able to control it if I eat the right diet. Could you please let me know what the correct diet is for Hepatitis C?

Answer

This is a question I am often asked and there seems to be a conviction that because the liver modifies substances that have been absorbed, that it can be detoxified by the right diet. This is just untrue. There are a few basic principles about the diet in patients with Hepatitis C that in general, apply to patients as well without Hepatitis C. Obviously the less alcohol that is consumed, the better, and if one is really concerned about keeping the toxins away from the liver, then do not let alcohol pass your lips at all.

A lot of people who have Hepatitis C do find that fatty foods tend to make them feel bloated. A lot of people without Hepatitis C have the same feeling and this is almost certainly related to the effects that fatty foods have on the intestines rather than on their liver. If something makes you feel unwell, it is obviously sensible to avoid it.

There is a whole industry out there promoting dietary manipulations to control various diseases. With respect to liver disease, the liver cleansing diet has become very popular. I believe that often the patients who adopt a diet for their liver will often feel a little bit better about themselves because they are being proactive and certainly being proactive in any condition is to be encouraged.

There is, however, no scientific evidence that the liver cleansing diet or other specific liver diets will either “cleanse” the liver or decrease liver inflammation. They will not eradicate Hepatitis C.

If you are overweight then it is important that you adopt a controlled energy diet and the best way to control energy intake is to decrease the amount of fat in the diet. People who are overweight can have extra inflammatory changes in the liver due to fat deposition in the liver.

In essence then, there is no specific diet for liver disease or Hepatitis C. It makes sense to avoid alcohol and to ensure that you get your weight to a normal level.

Patients with severe liver disease who have developed liver failure or marked fluid accumulation (ascites) will often be put on salt restriction and occasionally the protein in their diet will be reduced. This is, however, not appropriate for the majority of people with Hepatitis C.

Question 4

I did have Hepatitis C for about ten or so years but underwent treatment with Interferon in about 1994?

Subsequently my viral test was negative and the doctor told me that I was cured of the Hepatitis C. Am I able to become a blood donor again?

Answer

After successful treatment for Hepatitis C, we consider the patient to be cured if, six months after treatment, they have no detectable virus present on a PCR test. This test will now reliably pick up viral numbers of over 600 per millilitre of blood and probably pick up virus down to about 100 particles per millilitre of blood.

If the test is negative, this does infer that the hepatitis has been cured. No one can, however, guarantee that it is possible there is a very small amount of the Hepatitis C virus present within the blood. Certainly, we do know from long term studies that the patient will never come to any harm from this but we cannot be sure that the patient is still not infective.

I guess the Red Cross are concerned about this as well as the legal implications of allowing a patient who has had Hepatitis C to donate blood, should the original test had been wrong.
You are thus still not allowed and currently I doubt will ever be allowed, to donate blood or tissue organs if you have had Hepatitis C.

However, It is very noble of you to wish to resume what you consider your civic duty. I wish a lot more people in the community were anxious to donate blood and consider being organ donors.

Question 5

I have Hepatitis C and I have just given birth to my first child. I am obviously concerned that the baby will have been infected but I have been told that my own antibodies will be present in the baby’s blood and that at this stage – Jack is only four months old - it is impossible to tell. When can Jack be tested to make sure he does not have Hepatitis C?

Answer

The risk of you passing on Hepatitis C to Jack is quite low. Figures between 2% and 10% have been quoted but most of us believe it is no more than 5% of babies who will be infected. Mothers who are positive for HIV or who have a very high viral load are more likely to pass on Hepatitis C virus and to my knowledge it has never been recorded in a patients whose PCR test is negative.

I understand your keenness to find out if Jack is infected. This really opens a can of worms because if the test is positive (and there would be a 95% chance it would be negative), then the question would be – what would we do?

We do believe that up to a half of infants affected at birth will actually clear the virus spontaneously and the current treatments are, in any case only licensed for people over the age of 18.
Having said this, antiviral treatments have occasionally been used in young people but I would not encourage their use unless we have good evidence of quite severe disease.

I guess I am trying to reassure you that it is very unlikely that Jack does have Hepatitis C, but to be sure that all your maternal antibodies have gone, you will need to delay any blood tests until he is about 18 months ago.

Question 6

My husband has Hepatitis C and he has been told that his viral load is high. What does this mean?

Answer

Viral load is our estimate of the amount of virus particles present in the blood. There are about 1,000billion Hepatitis C virus particles produced each day and each Hepatitis C virus probably lives for only about 20 minutes. The amount of virus present in the blood is obviously very, very high and we do believe that the higher the amount of virus, the more infective the patient is.

There have been different ways that this viral load has been tested and, over the last twelve months, results have been expressed as International Units per ml whereas previously they had been expressed as copies per ml. The word “copies” infers a single virus. The International Units per ml roughly is half the level of the copies per ml. If there are over 850,000 International Units per ml we consider that this is a high viral load. Levels of under 1,000 are considered to be a low viral load. Most patients seem to fall into the intermediate group.

There is not a strong correlation between ability to get rid of the virus with treatment and the viral load and the viral load does tend to vary a little bit if measured repeatedly. Repeated measurements are not usually performed as the Medical Benefit Schedule does not pay for these tests to be done unless in certain circumstances and in those circumstances, tests would have to be more than one year apart.

In your husband’s case, the presence of the high viral load would, I guess, emphasise the importance of him taking the precautions necessary to avoid transmitting the virus in the home situation.

Question 7

I have pain under my right rib cage when I breathe deeply. This has been worse over the last six months since I found out I had Hepatitis C. Does this mean my liver is distended or in a bad way?

Answer

It is of interest to me that you have noted these symptoms more since you were told about the Hepatitis C. This is a frequent finding and I have had a lot of patients who are more aware of discomforts in the right side of their abdomen over the area of the liver after they have found out they had Hepatitis C. In many ways this may be because they are more concerned about their liver.

Liver pain does tend to be a dragging sort of discomfort and occasionally can be worse with breathing. It is by no means certain, however, that the pain you are experiencing is from the liver as there could be other sources of the pain, e.g. your thoracic spine or even a musculoskeletal pain from your ribs.

The presence of the pain does not mean necessarily that your liver is engorged or swollen and certainly does not mean that your liver is in a bad way.

You really need to discuss this with your doctor. I suspect that an upper abdominal ultrasound would be organised to assess liver size and to exclude gallstones.

Question 8

I was given a course of Interferon and Ribavirin for my Hepatitis C, approximately two years ago and I was one of the lucky ones? My doctor told me that my tests were clear and even in my follow up appointment, eight months after I had finished treatment, the virus was not able to be found.

My family doctor has just discovered that I still have the Hepatitis C antibodies present. I am really upset because I was led to believe that once the virus was gone, it would never come back.

Answer

I think I can give you some good news here. The Hepatitis C antibody test will always be positive in someone who has been infected at any time in the past with the hepatitis C virus. It will b positive if you have the virus and it will be positive if you have had the virus in the past and now are cured.

The only test we do to see if the virus is still active is the Hepatitis C PCR test (HCV RNA). This test can reliably detect virus particles if present in greater than 600 per millilitre of blood. It will usually pick up cases of more than 100 virus particles per millilitre of blood.

Obviously, your PCR test was negative eight months after the treatment and this means that the virus was completely gone or that the virus was present at a very small and undetectable level.

We can never absolutely guarantee that the virus is completely gone but our experience tells us that only a few percent of patients who have had a negative test more than six months after completion of their treatment i.e. their PCR test is negative, will eventually relapse.

Unfortunately, you can be reinfected with Hepatitis C so the normal precautions need to be taken.

Question 9

I have Hepatitis C and a biopsy showed that I have cirrhosis. How long can I reasonably expect to live?
Answer

This is a difficult question - it is sort of like asking how long is a piece of string! I will do my best.

Cirrhosis in Hepatitis C is not necessarily a death sentence. In a large study done in Northern Italy, approximately 20% of the patients died in the ten years after cirrhosis had been discovered. We must remember that this was after it had been discovered and in a lot of these patients, cirrhosis may have been present for many years previously.

Cirrhosis does tend to progress with time with a gradual development of liver complications. When significant liver complications occur, we say that the patient has developed decompensated liver disease. The mortality rate over the next several years in that situation i.e. when the decompensation has occurred can approach 50%.

Some recent evidence has suggested that some patients with cirrhosis due to Hepatitis C will have this cirrhosis reversed after successful eradication of the virus. This really surprised us but, of course, is great news.

I have had a lot of patients who have had cirrhosis for over 15 years. They have not developed any problems at all at this stage and I feel confident a lot of them will live a normal life span and not die from the disease.

We still have a lot to learn about why some patients with cirrhosis do badly and others do not. Certainly, drinking alcohol and being overweight are not good things if you have cirrhosis.

Question 10

I have recently had a blood test for Hepatitis A and this was found to be positive. I already have Hepatitis C. What does this mean?

Answer

I assume that the Hepatitis A test that was done was a Hepatitis A IgG. This test means that you have had Hepatitis A in the past and fortunately, as this is a rotective antibody, you cannot, to our knowledge, redevelop Hepatitis A. This is good news as there is an extra risk for patients with Hepatitis C who develop Hepatitis A.

In a study from Italy, there was a very high mortality rate in patients with Hepatitis C who then developed Hepatitis A. I might add here that you are no more likely to develop Hepatitis A if you have Hepatitis C than if you have not got Hepatitis C. Hepatitis A is not transmitted via blood but is transmitted by the so-called faecal oral route i.e. after breakdown in normal hygiene measures.

Unfortunately the test that is often done when your doctor orders Hepatitis A testing is a Hepatitis A IgM. This will only tell you if you have got Hepatitis A now and does not tell you if you are protected from Hepatitis A. If your Hepatitis A IgG was negative, then I believe that if you have Hepatitis C, it is very important that you have Hepatitis A vaccination.

Question 11

This might seem a silly question, but I was wondering why there appeared to be more cases of Hepatitis C around than HIV? I thought that HIV was discovered before Hepatitis C?

Answer

Although HIV was discovered in the early 1980s and Hepatitis C only in the late 1980s, Hepatitis C has been around for a lot longer than HIV. The Hepatitis C virus is also a lot more contagious than the human immune-deficiency virus (HIV).

In addition, until recently most patients who were infected with HIV succumbed to the disease whereas only a small percentage of people who were infected with Hepatitis C will succumb to their disease. The presence of these many “survivors” of Hepatitis C will of course swell their ranks.

Question 12

I have Hepatitis C. Should my partner and kids be screened?

Answer

This is really a question that they themselves should answer. There are implications in screening anyone for a blood borne virus that they should be aware of beforehand. If your partner is found to be Hepatitis C positive, it may impinge on his or her ability to get insurance and adversely affect their quality of life just by the very fact that they know they have the virus.

Similarly for the children - if they are asymptomatic or even if they have Hepatitis C, they are unlikely to need treatment at a young age and it may be best to leave it until they become old enough to make the decision as to whether or not they want to be tested.

The risk of passing on Hepatitis C to members in your family is very low. Obviously, you need to take the normal precautions to avoid blood contact but numerous studies have shown only a very modest increase in the numbers of people with Hepatitis C in families where one person has Hepatitis C compared to those families where no one has Hepatitis C.

Question 13

I have just been discovered to have Hepatitis C and I probably was infected back in 1978 or 1979 when I had a blood transfusion after my first baby was born. When I checked on the Internet, it was stated that about 20% of patients would develop cirrhosis of the liver in the twenty years after they became infected and that this was more likely to occur if the hepatitis C had been caught through a blood transfusion.

Another entry from what was supposed to be a reliable medical source suggested that only about 2% of people who got infected would develop cirrhosis.

How are we, the victims of this disease, supposed to know what the truth is?

Answer

I share your concerns regarding the conflicting information. Unfortunately the Internet is a totally uncontrolled source and it is often hard to find the “pearls in the swill” of misinformation.

Respected researchers have written 30-40 page review articles on this very topic and come to no firm conclusions. The bottom line is that we really do not know the natural history of Hepatitis C and probably will not know it for another 20 to 30 years. It is apparent that the initial studies that suggested a very high rate of development of cirrhosis related to patients who attended established liver clinics often in University hospitals. These tended to select out the worst patients.
In another study done in Ireland, it was recently reported that the mortality rate in patients with Hepatitis C after twenty years was only 2%. This was a group of young women who had been infected with Hepatitis C when given a vaccination for rhesus incompatibility. This tragic episode did give us the opportunity of being able to closely follow a large group of people who had a known source of infection.
It is reassuring, of course, to see that only a very small percentage of these patients did develop severe liver disease and it is of interest that the ones who did develop this problem tended to be heavy alcohol users.
In the real world, the answer is probably somewhere between these two figures i.e. 2% and 20%. My own particular bias is that it is likely to be in the area of 3-6%, if all members of the community are considered. I am sure you will get other people who work with Hepatitis C patients giving a figure quite different from this, however.

Question 14

I have a problem. I have been used to having two drinks with my wife each night when I come home from work. We then, chew the fat, as it were, and it is a very important time for just the two of us. I have been told by my doctor that because I have Hepatitis C, I should not drink alcohol at all. I can understand why it is important not to drink a lot of alcohol, but is there any evidence that by having a drink or maybe even two drinks each night, will hurt me? My liver biopsy showed only minor inflammation and no scarring.

Answer

This is a hard one. The easy answer is to get you to stop drinking completely. Obviously there are no medico-legal implications with that fairly draconian approach i.e. you cannot come back and say you were not warned. I do sympathise with you, as obviously this is an important part of your lifestyle and in no way could you be considered to be an alcoholic or to be drinking at an unsafe level, if indeed the drinks you are having are just standard drink sizes.
I note that there is no scarring on your biopsy and if you had had Hepatitis C or been thought to have Hepatitis C for a long time, it would probably be reasonable for you to continue to drink in this way. I would however, counsel against drinking more than four standard drinks in a day.
If you have become infected in the last ten years, my advice would be less sure, as perhaps you could still develop significant scarring and there is little doubt that the alcohol in this situation would accelerate the liver scarring.
I think you should talk to your own doctor about this. He or she may know things about your case which I don’t know and therefore can advise you accordingly.
There is a danger in everything we do in life and really, all we can do is inform you and at the end of the day, let you make the decision. After all, that is what patient autonomy is all about.

Question 15

Four months ago, I was diagnosed with Hepatitis C and cirrhosis of the liver. I am a 38 years old male with a four month old son and another baby on the way. This all came as a big shock for me and my wife.

I used needles on a few occasions about 20 years ago, but had no idea, until recently, that I had picked up Hep C and that it had done so much damage. I have been advised by my doctor to give the Combination therapy a go, even though I have genotype 1b which apparently doesn’t respond very well to the treatment.

I have also been told to lose weight before I start the treatment (I am 20kgs overweight) as the doctor says that this will also help the liver work better. I have stopped drinking alcohol and am trying to give up smoking as well, as I have heard this can also have a bad effect on the liver.

My question is – can I put my name down on a waiting list for a liver transplant? I am worried about the future for myself and my family if I don’t get rid of the Hepatitis C with the Combination therapy. I want to be here for my kids as they grow up.

Answer

You are obviously very concerned about you future, particularly with such a young family.

The chance of dying over the next ten years in patients with cirrhosis, due to Hepatitis C is about 20% i.e. four out of five patients are alive, and usually not unwell, after ten years.

All the advice you have been given is accurate. You certainly should lose weight as this may decrease the amount of scarring in your liver. It is very important that you have stopped drinking and you are to be congratulated for this. Even giving up smoking seems to be of some assistance, as a couple of studies have now suggested that smoking adds to the scarring in the liver.

It is certainly a bit too early to get on a waiting list for a liver transplant. The liver transplant waiting lists do not work in the way we imagine waiting lists would work. You do not gradually go up the pecking order until your name gets to the top and then, bingo, you get the next liver. Everything is prioritised, depending on the severity of the liver disease and the suitability of the donor liver. Patients are only accepted on to a liver transplant list if, as a rule of thumb, it is thought highly likely that they would not survive one to two years with their own liver.

If you do the things you have listed above i.e. stay off the alcohol, try to lose weight, stop smoking and give the Combination therapy a go, you are doing all that you can for this problem. And there is still a lot of light at the end of the tunnel.