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Searched for: treatment
02 Nov 2015 09:52
That great news you can get the help you need now Joan, before your condition worsens. I daresay you ware right that the reason the clinic wasn't amenable to my suggesting treatment is that my disease progression isn't very significant yet - but that is heartening that they are assisting some patients and haven't put the blinkers on re generics. Good to hear.

I hope all goes well with your treatment too, best of luck :)
01 Nov 2015 23:42
Just found this article via reddit, suggesting a combination of Sofosbuvir, ledipasvir or daclatasvir, and a third simeprevir or asunaprevir has even greater efficacy than the current DAA's

Three different Big Pharma companies make the various drugs, and Schinazi asserts that to protect their markets, they have resisted collaborating with each other. “I want to show these companies that they should have done this study a long time ago themselves,” says Schinazi, who helped pay for the drugs used in the study. “When you put the best drugs together, you get fabulous results.”



Study suggests unprecedented 3-week hepatitis C cure
01 Nov 2015 22:29
I seriously wonder whether Daclatasvir (for G1 at least) would be as good over the short course. It has a higher log kill than Ledipasvir.

Hopefully some answers to that question will come from the AASLD conference in mid nov.Like you I will continue to take my sof dac riba for at least 12 wks in the meantime.When you look at the size of some of the subcategories in these results the numbers are sometimes
very small.One must remember in trials like this one of the objects is to overcome the obstacle of the absurd costs Big Pharma are demanding.This criteria does not apply to the same extent when using generics.
01 Nov 2015 21:47
Outstanding news johnboy, and congratulations!


Its nothing short of miraculous to read of the success stories posted here,..yeah the stats on paper are impressive but to read of you guys real-world successes, well its amazing tbh

I can only wish everyone here going for treatment the best of luck :)
01 Nov 2015 20:12
Hello Zhuk

Thank you for the good wishes. Sorry to hear that you didn't get the support you wanted from the liver clinic. I hope you can get support from your GP. I became very sick last year and the virus escalated. Within a year my fibroscan went from 8.6 to 17 which sent off alarm bells. The specialist tried to get the New Drugs from Gilead through compassionate access but I was declined because I wasn't sick enough. So my option was Interferon. Which I declined. I think I am being supported by the liver clinic because I have to take action now as fortunately I don't have cirrhosis and don't want to wait to get it.

Hope your treatment goes well.
01 Nov 2015 19:25
silent disease, quiet killer

I sadly know people who are suffering with breast cancer or bowel cancer and other life threatening illnesses. I wonder bout my friends - how many have HepC? – I don’t know because it is not up for discussion.

I don’t censure physicians and specialists who work at Liver Clinics or in Gastroenterology but I do think they are kinda apathetic. I have repeatedly been let down by medicos and institutions. If you were passionate or cared I think you would support progressive health movements and choice. I understand why you maybe can’t.

I consider myself to be an honest person. I have empathy for others and offer assistance wherever appropriate. I contribute to society. Know one knows but me how I am and I do the very best that I can.

People that I know would be surprised to learn that I have HepC. They would maybe question how this happened. I don’t know and it doesn’t matter.

There is a cure but not generally available. The FixHepC Buyers Club and online forum have helped me so much. I want to be cured and I don’t want to die for the lack of treatment. I have children, grandchildren and elderly parents and want to spend time with them as they do with me. I am a human being and I am exhausted. I feel isolated and withdrawn and I shouldn’t live have to live my life this way. I need help. I have lived many years on the ‘outside’ presenting as fine.

I live in Australia supposedly ‘the lucky country’. I pay the Medicare levy. PBS where are you? I also pay thousands of dollars for private medical cover.

Doc Freeman has helped. I have ordered my meds through FixHepC Buyers Club, there is no other option and I am thankful and hopeful.
01 Nov 2015 19:06
Hey JB and forgot to say congratulations on your 3 week result. Mine was still detectable under 15 but not far off. Em
01 Nov 2015 19:04
Hi JB, We're creating a research category when we get 5, are you happy for me to move this thread into it once I do this? Cheers Em
01 Nov 2015 18:28
Fantastic news Johnboy!
01 Nov 2015 16:38
Great news Sir, you'll do well on these my friend. Sides are very doable and in fact you will soon have periods of feeling better than you have in a while. Em
Category: Patient Stories
01 Nov 2015 15:25

Joan wrote: Hello Vicki
Good to hear your story and that you persevered despite the discrimination. Also good to hear Geelong hospital have come on board and are supportive. Its a matter of education..even for the 'Experts'. I am waiting for Sof/Dac to arrive, in approx 2-3 weeks. I have support through my medical team at RPA liver clinic Sydney. They are treating other people who have accessed their own drugs. I would have found it very hard to take the drugs without their support. My specialist didn't provide me with a script, I saw my GP who wrote one for me, very willingly.
I wish you well.



That's great to hear Joan. I have to say I was given the opposite impression by my doc at RPA, admittedly I am not in a bad way as yet with F0 so maybe that makes the difference - but she definitely tried to dissuade me of the idea of accessing generics...it was more of the 'Wait, everybody will get it on the PBS early next year'. Although she has been saying that since 2013 heh

So I will likely be doing treatment alone with GP monitoring...I'm glad that you have had a more positive experience :)


And a great outcome for you Vicki, hope everything goes well.
.
01 Nov 2015 12:05
Data on this is going to be largely absent but if it was me I would be chasing 24 weeks Sofosbuvir + Daclatasvir + Simeprevir +/- Riba (maybe)

Simeprevir is available on the PBS but only in combination with Interferon/Riba, however if you have a helpful consultant they could probably prescribe it to you and you might choose to not self inject the Interferon and perhaps not take the Riba.

At the worst with S+D+S you would get 24 weeks viral suppression and a good quality of life.
Category: Resistance
01 Nov 2015 11:54

Sirchinenge wrote: Hello all.

My Meds came into the UK on Friday and I picked them up and started treatment that day.

There was a problem with the Sob they congealed together apparently this happened before
shipment, as yet I don't know why this occurred.
What its means is they are all need prying apart which is time consuming.

I'll update properly over the next few days.

Am happy I have started treatment.


Get them into a dry cool environment Sirs, Sof is particularly hydroscopic and you don''t want them absorbing too much moisture and risking damage to the API's.
Category: Patient Stories
01 Nov 2015 11:38
Also interested in the possibility of treatment improving tinnitus, and it makes logical sense that the brain would "fill in" any hearing loss with its own "white noise". I've had a roughly 70-80 yo hearing level dating from when I contracted an ear infection at age 6 which knocked out the higher registers,. So I guess tinnitus is just as 'normal' to me as not being able to hear speech when there is competing background noises, birds etc. I got hearing aids a couple of years ago and was startled to learn that you can hear your feet hitting the ground when you walk lol

Stress is another factor I'd always suspected had an influence on it too, good call on that emilio. I've lived through some pretty traumatic circumstances and at those times the tinnitus has elevated to sound like loud, high-pitched screaming. I'd be interested to see if treatment would lessen any of what I experience, and whether any of it might be due to hep C.

LondonGirl wrote: Thanks Cue, I don't really 'do' sugar - and recent bloods show VitB12 at normal levels.
It seems, when the body is fighting toxic substances and virus, tinnitus can present itself, as well as other reasons which I believe should be checked with basic observations.

I find it really odd that in England, in 18 months of being diagnosed, I have only ever had one thorough basic observations done.


Well for what its worth LondonGirl, I don't think I've had any thorough investigations past a yearly (or fewer sometimes) basic LFT in 25 years since diagnosis. Certainly no one has ever bothered to ask much about diet, beyond a couple of general questions. ..I don't think its that uncommon.
Category: Q & A
01 Nov 2015 10:49
www.natap.org/2015/EACS/EACS_23.htm

Seems to me that eight weeks treatment is not a financial decision after all. These are great results. Virtually 100% (one patient discontinued due to nausea).

I seriously wonder whether Daclatasvir (for G1 at least) would be as good over the short course. It has a higher log kill than Ledipasvir.

Nevertheless..... I will take each and every pill of my twelve week course.

I am "undetectable" at three weeks and am half through my twelve week course.

:)
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