I think they need to be 'gently encouraged' to open their minds.

I think they also need to consider that many patients have waited months for an appointment, travel to it and then are met with a negative experience.

I think their should be talks on how to make it a positive experience, even is there is still a wait for treatment or a non-practical response. There is absolutely no need to add to patient anguish.

Compassionate point though !

This is a time of great change in the Hep C world thanks to people like Dr James, Greg Jefferys and nameless others who are working towards allowing us to access these new DAAs. And those of us posting here can and have seized the opportunity to surf this wave of change. Which is fantastic!

So what is my point?

Well, I'm seeing quite a bit of negativity towards some in the medical profession who aren't "on board" yet.
I understand that in many ways; since being diagnosed I have also experienced many of the things others are complaining about. Seemingly uncaring specialists, GPs and nurses who had little or no sympathy. Who kept telling me to wait, who kept downplaying my symptoms, etc, etc, etc.

And ummm......yeah, just like in any job there are probably some who aren't suited to their role, particularly if that requires "customer contact".

But I've also, over time, considered it from their perspective:

- Most I suspect went into their profession for noble reasons, they wanted to help others, maybe even save a few lives?
- Somehow they ended up in the Gastro/Hep field and dealing with Hep C
- Initially there was no treatment to cure their patients, the best they could do was minimise the impact.
- Then Interferon became available and gave a little hope but with horrendous sides.
- Then Peg/Riba with a little more hope - but still bad sides - such bad sides that most patients refused treatment, and many of those that did treat were surly/grumpy/agro during their treatment.
- And they have to break the bad news to the non-responders and relapsers on a regular basis, and effectively say "I failed".
- Then more recently DAAs started to filter through. Our medico thinks "Finally! Something that works! I can do what I spent all those years training for: help people, even cure them!"
- "IT COSTS HOW MUCH!!!"
- "Now my ungrateful patients are blaming me because they/government/insurer can't afford these new drugs."

Does that sound like the sort of job you would greet with a smile every day? Yeah, me neither.

If I'm reading the Doc's post above yours right Gary, you take a dose the following lunchtime, then the following morning, then continue taking it in the morning. A little bonus of shortening your treatment by one day too!

Here is a report about Gilead's new Sofosbuvir + Valpatasvir combination.

www.jwatch.org/fw110863/2015/11/16/new-o...000101242515&jspc=EM

Now first it really just sounds like they are catching up to Sof+Dac but the bit I found interesting was this:

In a companion study, nearly 270 patients with HCV genotypes 1–6 (excluding 5) and decompensated cirrhosis were randomized to receive sofosbuvir-velpatasvir for 12 weeks, sofosbuvir-velpatasvir plus ribavirin for 12 weeks, or sofosbuvir-velpatasvir for 24 weeks. The rates of sustained virologic response at 12 weeks' post-treatment were 83%, 94%, and 86%, respectively. Rates of serious adverse events ranged from 16% to 19%.

Now 270 is not that large a number - only 90 in each arm and at that n the error is +/- 10% but the results for 12 weeks with Riba in the context of decompensated cirrhosis bear thinking about. That's a > 10% difference and 83% is like a 1 in 6 chance of failure, whereas 94% is a 1 in 17 chance of failure (or 11 more chances of success per failure).

If your doctor suggests Riba think really carefully if you want to run the risk of doing without it.

CJ wrote: Hi Enkel,
Thanks & the answer is NO he says he feels nothing!! except a bit more alert
He seems a bit less "moody" to me, smiling more.
His VL ( viral load) was 2 million, so not much different from yours, really.
Mine got up to 19 million at one time, it can fluctuate a lot I think.
When do you start tx?
x

I hope start soon. Do you have any symptom from hepc? Did you started for yourself the treatment?

Damn, sorry about that max - I stand corrected lol


Well that augers even better for diminishing sides over the treatment span. Awesome!

www.sciencedaily.com/releases/2015/11/151116181750.htm

"Current approved treatments for chronic HCV are not equally effective in combating the virus' different genotypes. Testing to determine the genotype and subtype of the virus is required before treatment could be initiated. But the combination of sofosbuvir-velpatasvir has been shown to be applicable to all strains of HCV, effectively eliminating the need to test for the viral genotype -- an obstacle that often delayed treatment.

The regimen was tested in an international, randomized, double-blind placebo-controlled phase three trial conducted at 81 sites in eight different countries. After 12 weeks, 99 per cent of the 624 patients who had been treated with a daily tablet of sofosbuvir-velpatasvir experienced a sustained virologic response -- the medical term for eradication or cure of HCV -- meaning that patients remained free of the virus three months after completing treatment. None of the 116 patients receiving a placebo experienced the same result."

The bizarre dreams seems like something which can happen with other meds (anti-cancer chemo to my knowledge) but as you say Paul compared to the old horror-treatments it seems very manageable. Sleeping problems I have anyway due to nerve-pain issues so nothing different on that score I'm developing quite a sense of anticipation, maybe only a couple of weeks off now, all being good to start.

Hi Joan et al,

So pleased everyone is coping despite a few side effects. I am now Day 6 and doing well although it's probably my tiredest day partly due to a 4.30 awakening. I am waiting to see if it becomes a bit of a pattern. Like you Joan I'm also trying to be good to my body and my poor old liver with good clean food and no alcohol etc. I've found it easier if I remove myself from socialising too much at the moment. Hopefully I shall re-emerge HepC free at some stage down the track!

Coral

Awesome news everyone, sounds like you are are all finding the meds tolerable and reasonbly easy to live with. Hope your results bear fruit down down the track with SVRs...so pleased for you all

Hi Chejai,
Welcome! I have had the virus (G1a, F2-3) for about the same length of time as you and started my Sofusbuvir + Ledipasvir treatment 6 days ago. All is going well so far with no detectable side effects. So sorry you had such a bad experience with the specialist but well done with perservering to find the ones who can work with you not against you. I have also had a lot of trouble finding medical support in the past. Following the recent publicity I made an appointment with the wonderful Dr James Freeman at GP2U, ordered the generics through the Buyers Club and 4 weeks later I started my treatment. I know I am in safe hands.

There is a way forward for your brother as well.. Good luck to you both. Let us know how you are travelling.

Coral

Just a quick update : I went to Australia and got Sof and Dac thru the buyers club. Am back in Ireland and have just completed week 1 of treatment.

Apart from a couple of very lucid dreams the first two nights, I haven't had any side-effects and feel absolutely normal.

I guess it will take 2 to 3 weeks before I am saturated with the drugs and then I will see if there are any sides but for the moment, things are fine.

Bye for now : )
Sean.

I just want to say hi and introduce myself. I'm a 52 yo female and have had chronic HCV G3a for 34 yrs, Fibroscan 2 1/2 yrs ago put me in F0-F1. Never had treatment. I've been a public outpatient in a Liver Clinic in a Brisbane Hospital past couple of years. I didn't qualify for Interferon treatment and wouldn't have done it if i did! My Specialists change regularly and Thank God for my last one because the one I had for a few visits had Very Strong Religious Views re the HepC patients he was seeing. He lectured me on our disgusting western lifestyles and how appalling we all were. I cried my eyes out the whole time. He'd decided he couldn't watch this anymore and transferred to another area. I had heard about Greg Jefferys and was reading his biog, gathering info for my recent visit down there. This new Dr was Great and after years of being told to 'wait it out' I finally had someone tell me Don't Wait Any Longer! My brother has the same as me BUT he has cirrhosis. The Dr gave me the info on this website, told me to research it and if I wanted to proceed he would provide script and monitor me, along with my GP.
I'm planning on the Sofusbuvir + Daclatasvir combo. I'm waiting to get appointment to organise this. He'd said before I would likely need 24 weeks rather than 12 of treatment - not sure Why?
My brother has been trying to get into a clinic where he is in NSW but he's waited all year. I'm sending him info about this Club and hoping his GP can help him. I feel very inspired and motivated by all the stories I'm reading on here and hope that my journey will be a success too. I'm sick of living with this virus and fed up with being judged Thank you and Good Luck to you all

Hi everyone today is the end of week 4.
All good. Still some tinnitus about 4/10 intensity. 2 days with some fatigue. One headache. A walk in the park for the poodle when all said and done. As this marks 1/3 of the way in with china api sof/led. Very good in terms of minimal discomfort. This morning I went to the local GP For a viral load test and liver function test. My arm would not stop bleeding which was odd. Also the injection was extremely painful and bruised badly. Wondering if the treatment thins the blood ? I will post the results in 2 to 3 days. Hoping for undetectable , Best Wishes from the poodle.

i couldn't believe how backward thinking Geelong hospital have been. I have always found there clinic odd. Asking questions was apparently and unusual thing for patients to do there. It always seemed justified to travel to Melbourne. i'm glad you have managed to teach them a thing or two and hopefully people will have an easier time now because of you. I do know a lot of people who do the drive to Melbourne hospitals because of there attitude.

Glad you persevered and got your treatment and monitoring.