Chester wrote: Get treated now zhuk. Doctors telling you it's ok to wait because you're F0 should be ashamed of themselves. Hep C is a global infectious disease epidemic. When a cure comes along regardless of the infectious disease, we used to know how to deal with it ie. Treat everyone asap. We did it with polio. We did it with smallpox. Maybe because of the effectiveness of vaccines we've forgotten how to address these problems.

I think there are compelling reasons for everyone to get treatment. They just differ from individual to individual. So the decompensated cirrhotic needs to get treated so they don't die. For me, borderline F3/4, I needed to get treated before I developed full blown cirrhosis. You, like all of us will never got the years of lost quality of life back. But your compelling reason is that you can walk away from this with virtually no lasting liver damage if you get treatment now.

IMHO doctors like yours who are peddling false hope to people about their chance of treatment are completely irresponsible. If and when the drugs go on the PBS, I'll be very, very surprised if you can access them. Hell, I was told ages ago I'd only have a pretty good chance of getting them.

Hi Chester, many thanks for your comments and encouragement.

Yes it doesn't make any sense, does it? This is what I couldn't seem to get across to the doc yesterday - that I am unlikely to come under the criteria for treatment, if it does go through. Yet she insisted in a rather blase way that no everyone would have access to it, If we look at the two comparable countries who have certified these drugs for use, Canada & the UK, they have a triaged system of need deciding who gets treatment - its not a free for all there, so how someone can believe that it would be so here, well its a bit beyond me really lol

I am very glad that you were able to get treated, being at that borderline fibrosis stage! Hope you are continuing to do well

Chester wrote: .....IMHO doctors like yours who are peddling false hope to people about their chance of treatment are completely irresponsible. If and when the drugs go on the PBS, I'll be very, very surprised if you can access them. Hell, I was told ages ago I'd only have a pretty good chance of getting them.

I think it's time to start reporting doctors who lie to their patients to their regulatory body.

zhuk wrote: Hi everyone,

New member to the board, hoping I can learn more about the possibilities of treatment as they arise. Have been HCV positive since 1988 with Gen 1a and treatment naive, largely due to a significant history of depression & other mental illness aspects, which my Dr sees as pretty much contraindicating 12 months of the pegintf/rib combo.

My doc (specialist at a major Sydney hospital) put me off the whole idea of accessing overseas meds at an appointment today,

I'f you have the cash to get the generics I would do so now Zhuk, as Dr John Freeman said in the radio national interview they are living in cuckoo land if they think the new meds will be listed in the PBS anytime soon !

I've been getting the wait it's coming for years now and just been getting sicker and sicker. There is no difference between the generics and the "genuine" meds. The generics work and you will get rid of the disease unless your very lucky and won't have to speak to your specialist again.

cheers

zhuk wrote: Yep as I mentioned I have 'travelling' pain and strange sensations, buzzing etc quite often at night which keeps me from sleeping sometimes. And its hard to tease out what could be the chronic pain and what could be the Hep C. I do get that "itching" sensation in the liver quadrant, is that also a thing with some people? Sometimes some 'stinging' as well, however a GP told me that wasn't likely to be my liiver...which I found hard to believe as it is spot-on in the right area lol

I've had this for many years but over the last 2 years it's progressed leading to some sleeplessness. It's very hard to describe it to someone even my wife who has been UND since 2012 and had no liver issues so I don't bother, just suffer in silence. It was particularly bad a few days ago but for the most part it feels better since I started treatment 2 weeks ago. I have to have regular medicals for work so I tend to keep quiet about my liver issues unless I freak out my GP.

I think that stinging sensation which i've had for many years is mild occasional bleeding from the liver, I could be wrong but I have a gut feeling that i'm not.

cheers

Get treated now zhuk. Doctors telling you it's ok to wait because you're F0 should be ashamed of themselves. Hep C is a global infectious disease epidemic. When a cure comes along regardless of the infectious disease, we used to know how to deal with it ie. Treat everyone asap. We did it with polio. We did it with smallpox. Maybe because of the effectiveness of vaccines we've forgotten how to address these problems.

I think there are compelling reasons for everyone to get treatment. They just differ from individual to individual. So the decompensated cirrhotic needs to get treated so they don't die. For me, borderline F3/4, I needed to get treated before I developed full blown cirrhosis. You, like all of us will never got the years of lost quality of life back. But your compelling reason is that you can walk away from this with virtually no lasting liver damage if you get treatment now.

IMHO doctors like yours who are peddling false hope to people about their chance of treatment are completely irresponsible. If and when the drugs go on the PBS, I'll be very, very surprised if you can access them. Hell, I was told ages ago I'd only have a pretty good chance of getting them.

Day 8 & no side effects from the Sof, Led or Riba.
But I have noticed that my body aches have been getting better & I'm feeling more energy.
Maybe because I had to go off Statins before treatment has something to do with the less aches.
I also had to stop taking my reflux Somac medication , which I'm getting some minor heart burn.
Over all, so far, so good. BUT it's still a long road ahead of me to get to week 24.

Hi Zhuk and welcome from me too.
I agree with the above, get treated asap and most of your symptoms will dissapear straight away.
I sleep like a baby from the day one of my treatment. The dizziness and vibrating sensations have gone now. The tinnitus is still there but not so obvious and I don't notice it as much.
The skin looks smoother and clearer, I don't sweat anymore doing simple physical activity. And so on.
I wish I could have done the treatment one year ago when I first found out. I literally lost a whole year of my life being extremely depressed and withdrawn from the family and friends.

Alsdad, thank you very much for your reply. In fact that is precisely what I remarked to her - that even if the meds were approved surely due to cost it would be triaged and, as you logically point out, I'd have to be way back in the list. She then said, 'Oh no, it would be available to everyone' - which kinda negated my mention of the $3 billion cost which isn't going to happen lol

So yes...might be time to at least think about treatment. I have only come across this site very recently,. so its all a bit of a learning curve!

Thank you again for your response, I can see there will be a lot to take in

Your specialist is being economical with the truth, to say the least. And we hear this story time and time again. When the new DAA meds do become available through your healthcare provider, you (with your current finroscan score) will be at the very back of the queue. Unless the price of the meds drops to a fraction of it's current price, or you become very ill, you will wait years for a premium treatment.

My advice: Get involved here and get yourself treated now.

Hi everyone,

New member to the board, hoping I can learn more about the possibilities of treatment as they arise. Have been HCV positive since 1988 with Gen 1a and treatment naive, largely due to a significant history of depression & other mental illness aspects, which my Dr sees as pretty much contraindicating 12 months of the pegintf/rib combo.

I'm also fortunate enough to have a F0 fibrosis score (2.9 fibroscan) and a VL only in the couple of hundred 1000s - not the most urgent candidate for treatment anyway, I know.

However I do suffer from the sudden crushing exhaustion, dizziness, buzzing sensations, brain fog and general out of body detached feelings others have described here. Plus I have a significant chronic neurological pain condition of 14 years standing which flares up to the point that functioning can be difficult somtimes...and I think that there may be symptoms I've attributed to that which might really be due to Hep C (joint and muscle pain particularly)

My doc (specialist at a major Sydney hospital) put me off the whole idea of accessing overseas meds at an appointment today, saying that the Govt will very likely allow the new DDA's in from early next year - I have absolutely nil confidence that this will happen. In the meantime, I know that while not badly affected it is the back of my mind that the longer you have this disease (coming up on 30 years) the possibility that things could go south at any time. I am also mindful of the Govt/TGA finding some way of legally thwarting operations like the Buyer's Club so none of us will have any recourse at all...I can't see any of the treatments being passed by Federal Cabinet with a collective $3bn price tag.

Apologies for the length of my post; having only found out the OS supply of meds recently its something in the back of my mind regularly now.

A nurse told me today of other successful imports of Mesochem APIs to NZ; one was stopped at the border and they called the specialist who had prescribed it, then let it through.
She said the teams in the liver clinics in the main centre hospitals were generally supportive of any genuine treatment and their specialists were worth a try, although in some cases you need to live within their zone. I don't know whether the specialist would expect to manage your treatment if they wrote a script for someone.
She had heard of Greg Jefferys from patients.
She said Daclatasvir was prescribable in NZ despite it not appearing on the Medsafe online list.

The poor guy had 6 treatments before he was cleared.

globalnews.ca/news/2305815/new-hepatitis...ment-a-game-changer/

This is getting slightly of the main topic of this discussion but the subject has come up in the last few posts and may be of interest.Please em and aldad feel free to transfer it elsewhere.

Re Ribavirin and exercise.
Post by some unknown guy on another site

I am 5 weeks into Sovaldi/Ribavirin treatment and all is going very well. I have been undetected since week two and I feel fine. I am cross country skiing in the Vermont mountains 3-4 times a week and feel good, maybe a little off but then I have been skiing quite a bit lately. I was out yesterday with a bunch of guys 10-20 years younger than me and I was the one waiting at the top of the climbs. The nurse practitioner at the hepatology department said I should exercise all I want. The nurse who calls me every two weeks from the specialty pharmacy called today and said I should be vigilant because if I become anemic I wouldn't want to stress my heart muscle. I had an echocardiogram two weeks prior to starting treatment and was given a clean bill of health. I have always been active so skiing this much is not new to me. My hemoglobin went from 15.5 at baseline to 14.1 at 2 weeks to 13.8 at 4 weeks. 13.7 is the upper limit of anemia so I am close. I have read that hemoglobin tends to level off by 4 weeks. So I am wondering if I should be cutting back on the exercise or if I should continue. It seems to me I would feel winded and weak if there was a problem. If that did happen I would of course stop immediately. Anybody have an opinion?  I am not due for another blood draw for three weeks.

Reply by a medico
As long as you feel well enough and have no other medical restrictions you should stay as active as you can.
Anemia is hemoglobin <10 g/dL. You are not close to being anemic.
Anemia is a condition in which the body does not have enough healthy red blood cells to supply oxygen to body tissues. The symptoms of low hemoglobin and anemia are fatigue and loss of energy which can be combined with shortness of breath. So some people can feel a lack of energy as their hemoglobin get lower. They don't have to be technically anemic.
Since you are not taking peg-interferon you only have a small chance of becoming anemic taking treatment.
In the trials 650 subjects received SOVALDI + ribavirin (RBV) combination therapy for 12 weeks. 250 subjects who received SOVALDI + ribavirin combination therapy for 24 weeks.
Data from the Sovaldi/Ribavirin clinical trials showed only 8% became  <10 g/dL while treating for 12 weeks. 6% became  <10 g/dL while treating for 24 weeks and
The most common adverse events (≥ 20%) for SOVALDI + ribavirin combination therapy were Fatigue and Headache. NOT anemia. Anemia was the 6th most common side effect after Insomnia and then Pruritus (itching).

To learn more about Sovaldi/Ribavirin treatment read the label to learn about treatment and common side effect from treatment or consult with your hepatology NP.
Sovaldi label can be found here.
www.gilead.com/~/media/Files/pdfs/medici...valdi/sovaldi_pi.pdf
Live your life!

The advice of my own specialist was "keep riding,I wish i had the time to come with you"

Welcome to the forum Puzzled. First off, your best option for Genotype 3 is Sofosbuvir (Sovaldi) and Daclatasvir (Daklinza), probably for 12 weeks with your fibrosis score.

Subject to Argentina's importation laws, you can get your meds from Dr Freeman's Buyers Club here following a Skype consultation with him (see the tabs at the top of the page for this). Or you can get them through Greg Jefferys: hepatitisctreatment.homestead.com/

But the first thing to do is have a good look around this forum and website. There really is a wealth of info and knowledge here