12 Questions About Treatment

How do I access treatment?

You will need a blood test that indicates you are HCV Antibody Positive and PCR Positive. These results indicate you still have active hepatitis C in your body. The tests are done through your GP who can also provide you with a referral to a liver clinic. At the liver clinic you will be assessed and worked-up for consideration of treatment.

The pre-treatment assessment/work-up can involve additional blood tests to determine the type or strain of virus genotype that you have and your viral load (the amount of virus). An ultra sound/liver biopsy (liver biopsies are no longer a prerequisite for treatment but may be needed to determine if you have liver disease), pre-treatment psychiatric review, drug and alcohol review may also be required.

Do I need treatment?

Treatment is not for everyone. It is a big decision and one that needs to be considered carefully. Making sure you have enough support, flexible work arrangements (with the possibility to take sick leave if you experience serious side effects) and careful planning for treatment can help you to prepare for treatment.

These factors will determine whether this is the best time to consider treatment. Treatment is all about timing so speak to your specialist to see if treatment can be considered and what percentage chance of cure they can offer you. This can be calculated and discussed during your assessment/work-up.

Will it work?

Overall we give a figure of 50% chance of clearance/cure for all patients. But when we look at the individual patient, this percentage can improve depending on:

• Genotype
• Viral load (amount of virus)
• Presence of scarring or cirrhosis in liver
• Lifestyle factors
• Side effects experienced (A small number of people are unable to continue treatment because of serious side effects). So, what can you do to optimise your treatment outcome? Prepare for treatment and remember it doesn't have a 100% guarantee
• Choose the right time for you, (e.g. manageable workload, stable accommodation, kids are back at school, someone to support you.)
• Abstain from alcohol or limit alcohol use as much as possible for at least 6 month prior to treatment and during treatment.
• Be compliant with the schedule of medications and be able to commit to regular appointments and blood tests.
• Be prepared for the possible side effects and have supports in place to make it easier for you.

What side effects am I likely to have?

Nobody knows what side effects you may have, I wish I had a crystal ball! Everyone’s treatment is different, everyone responds differently to the medication. The majority of patients have the worst side effects during the first 2 months. These may include;

• Flu-like symptoms (headaches, muscle and joint aches and pain, fevers, chills and night sweats)
• Fatigue
• Mood swings (including depression, irritability and anxiety)
• Occasionally some may have rashes and itchy skin
• Hair thinning
• Some weight loss.
• There is no way of knowing ahead of time what side effects you may experience.

Do I have to stop drinking alcohol?

Yes. If you want to give yourself the very best chance to clear the virus and only do this treatment once - then stop!

We understand that this may be unrealistic for many of our patients. So some specialists advise reducing alcohol use to 1 or 2 standard drinks once or twice a week, or seeing a Drug and Alcohol counsellor as part of the pre-treatment work-up. The aim of treatment is to clear the hepatitis C virus, prevent damage (scarring) and inflammation occurring in your liver.

Having the hepatitis C virus and drinking alcohol can increase the progression of damage (scarring) and inflammation in your liver. Stopping alcohol may be more important for people with existing liver disease – but may be less so for people with no liver disease who may be able to have ‘a’ drink.

Will I still be able to work?

Yes. The majority of patients can still manage to work. It is important to keep working for the social interaction and self esteem that work provides. But it really depends on the work you do.

You may need to take time off work initially to deal with the side effects and arrange a more flexible workload with your employer. Talking with your employer about your options is advisable in case you need to take time off. There is no need to tell your employer you have hepatitis C. We advise patients to say they have a serious medical condition, requiring a type of chemotherapy that will make them tired. They may require a more planned schedule of or a reduction of work hours.

How will it impact on my family/friends?

If you are interested in treatment, you will need to be prepared for its impact on lifestyle and relationships. For many people it can be a stressful experience, both emotionally and physically. Accessing supports, such as family, friends, support groups or health care workers can make a big difference. Some people find that counselling is helpful. With the mood altering effects of the treatment, personal relationships may come under pressure, so it would be valuable to talk this over with the important people in your life before commencing treatment.

Although Ribavirin is taken in tablet or capsule form, the PEG-Interferon involves giving yourself a small injection into the fat layer of your body (often the stomach) every week for either 6 or 12 months. Therefore you will need to include this procedure into your weekly routine.

Due to the toxicity of Ribavirin and the effects it has on the unborn foetus, and regardless of which partner is being treated, couples cannot start a pregnancy during therapy or for six months after therapy. You will need to consider this issue with your partner when you are deciding whether to have treatment. You may choose to delay the therapy. Talk

to your doctor about your options. Thinking through all these issues and discussing them with your treatment nurse or doctor is an important process when considering treatment. You may also wish to discuss this with a counsellor.

I'm using complementary therapies, is it a problem?

Not usually, but it is important to let the specialist or treatment nurse know what you are taking and how much. This way we can be sure we can offer you the safest treatment and effective side effect management. It is important to see a qualified complementary therapist if you choose to use alternative or complementary therapies, preferably one who has experience of treating people with hepatitis C and/or combination therapy.

How much does it cost?

Treatment is covered under the Pharmaceutical Benefits Scheme (PBS) and is therefore paid by Medicare. The only costs you pay are a monthly pharmacy dispensing fee. This is usually around $5 with a health care card, $35 without.

Blood tests are bulk billed for public patients and there is a limit to the number of blood tests for the virus levels you can have per treatment, (usually 2-3 per treatment). These specific blood tests can be up to $250 each if you exceed the limit.

What happens once I complete treatment?

Congratulations! You made it, so now your side effects should slowly improve and increased energy levels are usually seen within 2 to 3 weeks. Most side effects take 8 – 12 weeks to completely improve, but some people still say it can take up to 6 months before they feel wholly well again.

It is important now that you have finished treatment to look after yourself and take your time in returning to normal activity as you may experience fatigue and lingering side effects for some time after treatment finishes. So make sure you get plenty of advice on taking care of yourself. This is why it is still important that you visit the clinic. However, by now your visits will be fewer and vary depending on your treatment clinic.

Of course it’s now a 6 month wait to find out how successful your treatment has been. Hopefully your blood test results will show that you have responded to the treatment and cleared the virus.

What happens if I don't clear the virus?

It is natural to feel upset and disappointed if treatment has not worked for you, after all treatment is a big commitment and can be an arduous experience. People can feel a range of unhappy emotions after finishing treatment, so you may want to talk over your feelings with a friend, family member, counsellor, or Hepatitis Victoria's Hepatitis Infoline or support group. 

Although you may feel disappointed with the outcome, this is can be good time to take stock of the things you have achieved.

• You have addressed a significant health issue.
• You have been able to make the commitment to give treatment a go.
• You have received specialist care and now have a clearer understanding of your health.
• You may have reached other significant health goals i.e. alcohol cessation or reduction, and a healthy diet.
• You may have discovered and experienced support from friends, family and organisations
• Your viral load may have been reduced. 

You may want to consider what you will do next. Do you want to try to manage your hepatitis C in other ways? Or would you like to try treatment again and look at new or trial treatments that may be suitable for you? It can take some years before these newer drugs are available, so it’s very important to stay in touch with the clinic every 6 months or yearly. By doing this, your clinic team can continue to monitor your liver, keep you informed of the latest treatments and clinical trials as they become available. It is important to discuss with your doctor the severity of your liver problem. If it is mild, there is no danger in waiting. If it is more severe, newer or trial treatments may be appropriate and discussed.

You can also learn about managing your health and wellbeing. A healthy lifestyle and the effective management of your condition, including the medical and social aspects of hepatitis C, can help you to remain well and may minimise the progression of liver disease.

Will I continue to have health issues after treatment?

This is an excellent question for the specialist! It would depend on your pre-treatment health issues. Therefore we would need to discuss this on an individual case basis. Patients with cirrhosis before treatment will still need to be monitored, even if they have successfully cleared the virus. Usually this involves 6 monthly visits for:

• Blood tests
• Ultrasounds
• Checks for osteoporosis
• Vaccinations for common infections such as flu and pneumonia.

(Thanks to Kate Mellor, hepatology nurse at St Vincent's Hospital, for compiling this list.)

For more information about treatment please view our Treatment For Hepatitis C Info Sheet or for management of side effects, refer to the Treatment Side Effects Management Guide. More information on treatment can be found at www.hepatitisaustralia.com. You can also visit the Beat Hep C website: www.beathepc.com.au

If you need support at any time, you can also access support groups in person or for online support groups, click on http://www.hepcaustralia.com.au/ or www.hepcaustralasia.org  or http://c-ciety.ning.com/