My advice is don't wait if there are other feasible options
Get rid of it while you are in relatively good health and can minimise your dose

Demand will exceed supply for a long time at best
Screening for eligibility will be extensive and ongoing
You can pretty much sell yourself to the Department of Health for one year minimum
I'm cynical about government run programmes as I've done it before and it put me off for life pretty much
i would only do it if imminent death was the other option
To hold down a job and do it - I can't imagine how it would work.

I can relate to not knowing what normal is
i was shocked when i received my liver biopsy results about 10 years ago
it explained my occasional completely out of the ordinary near death hangovers

But looking at other 51 year old blokes around, I think I'm doing OK
i get tired, sometimes bone tired, but i don't know - doesn't everyone?

In a way, Hep c has 'helped' me maintain a healthier lifestyle than I would have otherwise
I need to know my boundaries or I will pay an immediate as well as a long term price

Just as I am currently paying the price for disrespecting my body about 30 years ago
i have given little thought to treatment or doctors for 10 years
But I know the time will come to pay the piper, so i am dreaming of one day being rid of this virus which i understand is slowly killing me

I've been pretty verbal for the 2 days I've been here
It's good to try and get one's thoughts in order, especially as I haven't expressed a thought regarding this virus in about 10 years

I think this site and initiative really deserves applause
it says a lot about the 'profit at all cost' state of this world that it is in danger of being taken down

Bloot rant over

If you are well with low fibrosis it would be sensible to wait and see.

These meds will get onto the PBS eventually and hopefully everyone who wants access will be able to get access.

I wish it was there now because for people at F4 time who have been refused compassionate access the clock is ticking.

It's there when it's there and dealing with the demand will be a problem but I'm told GPs may be allowed to help which will be required to handle the numbers if the tap gets turned on.

At the moment this is the best that can be done for those who need treatment now rather than later.

I'm 51 and found i was hepc+ about 15 years ago.
Around 10 years ago I went on 6 months of Interferon/ Ribavirin which failed to clear the virus.
i have just contacted Concord Hospital in Sydney to send me the forms to access my files - 3 weeks minimum

I only remember that I had a genotype which was among the most difficult to treat
And my liver biopsy showed quite a bit of damage - i think on a number system i was 1 number below cirrhosis

When i went on the treatment I was very fit and healthy.
When i was on the treatment I was constantly sick and a nightmare to live with (I don't do sick well)
I felt crap for a year, had enough of doctors and constant blood tests
i was told the virus had cleared, but then told that it had come back??
It was a terrible year of my life, and i have dismissed the thought of any sort of treatment since

The article in the SMH which put me onto this site interested me though
It has brought all the bad memories back and I am very nervous, particularly as i may need ribavirin as well for best outcome

So i guess my questions are
How do i find out what specific treatment I will need, and what will be the side effects
Do I need to get my 10 year old files from the hospital to find the genotype i have
Or do I need to go for a new round of tests to determine best treatment

Once i have this info i can make an appointment with Dr Freeman and assess my options

Thanks all - this is a great group - pharma companies suck

Thank you Dr James.I just wish someone like you was supervising my treatment.Unfortunately you live at the opp end of the continent.
I hope you eventually get the peer recognition you deserve for your humantarian efforts.

PKQ.Your post on Simeprevir scares the living daylights out of me.It does not seem to tally with the reported results of trials.But then they are often drug company sponsored.
Is there anyone else out there reading this that has had a similar experience with Simeprevir?

Thanks Dr. Freeman. I had a fibroscan about a year ago and don't have my results at hand but I remember being shown the chart and I was on the very low end about a centimetre in to the left hand side; if that helps. The specialist at the Liver clinic wants me to have a Biopsy, which I'm avoiding. I have read that the fibroscan is a much better indicator of liver scarring??
The Specialist also said that it was hard to tell if I had any cirohsis as some of my blood tests showed I might; recent fatty liver deposits and lowish platelet count. But, some of them that I don't have scarring. He recommended a the 12 week Sof/Dac course. I have only imported 12 weeks of Sof/Dac - I also received 12 weeks of Ribovirin with the Sof from India.
After reading further blogs and different Pharma trial reports, I leant that people with cirrhosis only have a 68% clearance rate using the Sof/ Dac treatment for 12 weeks. So...I stated taking the Ribovirin two days into the treatment. I'm taking 2 x 200mg capsules twice a day.
I'm not sure if this is even the right dose to add to the Sof/Dac..
I have an appointment at the Liver Clinic tomorrow and hope to clarify the situation. I'm not sure how they will respond and want to treat me because I have imported my own Generic meds. What should I expect and ask. Should I insist on another Fibroscan? Will the result of the scan I had a year ago be sufficient?
I will read over the ESL report you attached too, I have read it before but I've got a bit of information overload at the moment and am feeling anxious about my interpretations.
I realise I've got my self a bit muddle with all of this and am learning every day. I'm sure it will get sorted. I would really appreciate your opinion before I go to the clinic tomorrow.
Thank you so much for your time and efforts.
Kind Regards, Vicki

I have my test results. And i have been denied treatment by my insurance company. i want to get generics through the buyers club it seems like its my only hope.

Hello Vicki,

If you are < F3 then 12 weeks Sof + Dac should do.

If F4 then 24 weeks Sof + Dac +/- Riba

F3/F4 is grey.

Fibrosis is a spectrum. F0 vs F4 is easy. At the upper middle....

At the moment, in Australia a private prescription would be the only way to access the medications, although as far as I know nobody has any stock.

The proposed and pending PBS listing is and S100 listing.

S100 is not a - do the S100 course and you can prescribe S100 medications.

It is a do the S100 HIV prescriber course and you can prescribe S100 HIV medications (but not any other S100 medications).

So when the PBS listing happens it will be under S100 - well at least that's what the PBAC suggested. At that moment Infectious Disease Physicians and Gastroenterologist will probably be "grandfathered" ie given S100 rights because of experience/qualifications.

GPs will need to do a specific course, pass an exam, and then (probably) spend X days/consults with an approved S100 prescriber to get their ticket.

This process is exactly what was required for me to be able to prescribe methadone. A 2 day course at Sydney University. An exam. And then to actually get the ticket you have to sit in with someone and see some patients.

Only after doing all that can a GP get their ticket to prescribe.

It's a good process that makes sure people prescribing know what they are doing, but it is also a barrier.

Hep C patients are unusual in that as a group they are very, very well informed about the best treatment, but with things like Daclatasvir that have a lot of interactions to consider it's a little more complicated than meets the eye.

I've been fortunate to have experts offer me personal advice. For example one expert pointed me to

www.hep-druginteractions.org/checker

Which is a great tool for checking drug interactions. At his unit they use it all the time and file it in the notes.

Now I know about it I use it all the time, but it was important need to know stuff that when I met patient zero I simply did not know.

Hi Vicki,

The 2015 EASL report is widely considered to be a benchmark document on treatment types. I'm pretty sure it's available elsewhere on this forum, but I've attached it to this post.

I want to get hold of these drugs ASAP before the window of opportunity closes. It may take me 2-3 months however, to organise the time off work to do the treatment (I tend to get bad side effects). So I'm wondering how long I can keep Sofusbuvir, Daclatasvir and Ribavirin in the fridge before commencing?

I'm wanting conformation for treatment of Hepc 3. I have imported the new treatment via Greg Jefferys. I have mild scarring and lower than normal platelets. I'm taking a three way combination of Sofosbuvir/Daclatasvir and Ribavin for 12 weeks. Some of the information differs saying a 24 week course is best. Can you offer clarity on this.
Kind Regards,
Vicki

Hi Miko,

My personal experience: I've been treated with Simeprevir+interferon+ribavirin. The Simeprevir side effects were by far the worst. I thought I was going to die. Once I finished the Simeprevir part of the course, the interferon side effects were, in comparison, just mildly unpleasant.

Also, no bike riding on Simeprevir. After the first week, every time I went out, my skin started peeling off, and I grew big, red blisters on my eyeballs. After the second week, I was bed ridden. On top of that, the treatment was totally ineffective.

On the other hand, maybe Simeprevir will work for you.

I relapsed after Boceprevir + Ribavirin + interferon a couple of years ago. I am G1. My problem was white & red blood cells dropping dangerously low resulted in lowering of dose. I've been worried about what resistance might have developed ever since, so I'll be closely following this topic. Here's something I just found that's rather hopeful:

www.ncbi.nlm.nih.gov/pmc/articles/PMC3961994/ This study includes the following paragraph [Note DCV = Daclatasvir]:

"A combination of DCV and a nucleotide analogue inhibitor of HCV RNA-dependent RNA polymerase, sofosbuvir, with or without ribavirin for 24 wk achieved SVR in 100% of untreated HCV genotype 1a and 1b patients (n = 44) as well as in HCV genotype 1a and 1b patients (n = 41) who failed to respond to prior treatment with telaprevir or boceprevir, peginterferon and ribavirin. SVR was achieved in 93% of patients infected with HCV genotypes 2 and 3 (n = 44)[89,90]."

41 patients who failed telaprevir and boceprevir must surely have included people with resistant varieties. Interesting that the excellent result was achieved both with and without Ribavirin.

Meant to say that Greg's blog on the hep mag site wasn't updating but the homestead one is.

hepatitisctreatment.homestead.com/generic-harvoni.html

But now the hepmag site has too. Hadn't seen his latest post until just now. Strangely, just yesterday, I was marvelling at my own new found hole digging abilities too.

Hi berri,

I don't think you opened a can of worms. She wanted to kill that thread. The complete lack of any reasoned, logical, informed argument is always a dead give away in my experience.

Haven't emailed Greg since start of treatment. Just because I figure he's really busy. But I'll be sending him a copy of my VL when I get it next week. FBC and LFTs done at 2 weeks - everything within normal range. Huge ncrease in my energy levels.

Nope, no sides so far. I'm keen to hear about people's experiences on treatment too so will email. Cheers. Glad you tracked me down.