Our Facebook Hepatitis C Support group is an incredible, caring,informative and supportive online community

Facebook and Hepatitis C Support

Today our Hepatitis C Facebook group passed the milestone of gaining more than 2,000 members in less than 18 months of existence. It was a great moment for myself and all the other group members because the numbers are a reflection of what a helpful, sharing and caring online community Hepatitis C Treatment, Cure and Community has become.

One of the most important aspects of this Facebook group has been that people willingly share their experiences and knowledge with each other.

This is very important because, whilst we are not medical people, we have that valuable asset of real-life experience with Hepatitis C.  More than 70% of the group’s membership have gone through the shock of learning that they have Hep C and then the following process of learning what their treatment options are and then the final processes of  doing the treatment and being cured.

A Supportive Online Hep C Community: Sharing And Caring

To be able to share all these aspects of Hepatitis C with people who have just started down the path of treatment and cure is super valuable.

Particularly as in many countries (even “First World” nations) many medical professionals have very limited practical knowledge about Hepatitis C.

For example today I received an email from a guy in the USA with Hep C genotype 1a who was told by his doctor that G1a was the most difficult genotype of Hep C to cure… Wrong, that honor goes to Genotype 3. Genotype 1a was difficult to cure back six years ago before Harvoni.

And I do not know how many emails I get from very upset people who have completed treatment and been told by their doctor that the treatment was unsuccessful, that they are still infected with Hepatitis C… This advice being based on a positive result from a Hep C antibody test. Wrong! Anyone successfully treated for Hep C will always be positive for Hep C antibodies.

So, having around  2,000 people who have done Hep C treatment and are willing to share their knowledge and experiences with new members is just BRILLIANT!!!

Some Hepatitis C Questions

Today in our Hep C Facebook group a new member posted one of the most extensive lists of Hep C questions I have ever seen.

Good on him for asking!

They were good questions so I thought I would answer them in my Hep C Blog.

Some Hep C Questions From Facebook

1. Why do most persons remain chronically infected with HCV?

About 25% of people who are infected with the Hepatitis C virus beat the virus with their own immune system.

If this is going to happen it happens within 6 months of the initial infection. This initial 6 months is called the “acute phase”. During the Hep C acute phase there is a massive battle between the virus and your immune system. It is in this period that your immune system creates Hepatitis C antibodies. The job of the antibodies is to destroy the Hepatitis C virus. If your immune system has not defeated the virus by the end of that six months you then enter the chronic phase and it is very, very unlikely that your immune system will ever win that battle. I have not heard of even one person who cleared their chronic Hepatitis C without pharmaceutical intervention. Not saying it has not happened but I’ve not met anyone.

Interestingly women have more success than men at clearing the virus themselves in the acute phase. About 30% of women will clear Hepatitis C in the acute phase whereas only about 20% of men will.

2. In a HCV blood test what does an indeterminate result mean?

This depends on the blood test. If it is a viral load test (RNA Quantitative) it may be that the number is below a certain level that is suggestive of an active infection but not conclusive. However the reality is that a viral load test, an RNA Quantitative Test, is actually a waste of time and money because viral load is not relevant to treatment outcomes or to liver damage. The cheaper and more accurate and more useful test is the RNA Qualitative test. The reason for this is that it simply gives a negative or positive result. That is, either there is Hep C RNA in the blood or not. If there is no Hep C RNA you do not have Hep C. Simple as that.

3. Under what circumstances is a false-positive anti – HCV test result likely?

A false positive can be caused when there are remnant of Hep C RNA still floating around in your blood or the test was faulty. In my experience false positives tend to come if a test is taken immediately after end of treatment. However they are very rare. This is a link that talks abut false positives in more detail.

4. Under what circumstances might a FALSE negative ANTI-HCV test result occur?

Only from a faulty Hep C antibody test. Generally, if you test negative for Hep C antibodies you do not have Hep C.

5. What exactly is ” active ” hepatitis C?

This is a misleading term. When people say that someone has “an active” Hepatitis C infection they mean that the person is displaying obvious symptoms of Hepatitis C. However the reality is that if you have Hepatitis C RNA in your blood you have an active infection. To replicate its RNA Hepatitis C must destroy your liver cells. So if you have Hep C RNA in your blood you can assume that at least a few million liver cells are being destroyed every week. In young, healthy people the liver can repair such damage quite effectively but the damage is accumulating every day and eventually the damage becomes scar tissue and liver functions become impaired. But every Hep C infection is active and every Hep C infection is doing damage; every minute of every day.

6. What is hepatitis C RNA and PCR?

Hep C RNA is what carries the Hep C virus genetic codes and its “instructions” for living, reproducing etc.

PCR is simply a laboratory technique used for processing, measuring and analysing DNA and other generic material

7. What does it mean when your viral load increases over the course of a year/two?

Viral load can go up and down a lot. It does not mean too much other than that your immune system is not successfully suppressing the virus.

You need to think of it like a battle where your immune system is always fighting the virus. It can not win but it keeps fighting and sometimes the numbers go down and sometimes they go up.

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