emo Beachs' New Member Questions

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6 years 6 months ago #4323

Q&A Beaches asked a number of questions below. As I am sure that many new members will have similar questions I have taken the liberty of starting this new thread in the Q&A section to cover them.

beaches wrote:

I have many questions, I guess I'm a fence sitter
Are the drugs tested in Australia? What if they fail the test?
How many people have used the generics, how many have been tested 3 months after and what percentage is cured?
If you take the generics and they don't work do you develop a resistance, and what would happen with future treatments?
Do you have to compound the drugs yourself?
I am so pissed off with our government and their stupid miserable penny pinching ways (that's not a question)
If anyone can answer those questions I'd greatly appreciate it


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 6 years 6 months ago by Gaj.
The following user(s) said Thank You: CJ, zhuk, beaches

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6 years 6 months ago #4326

Hi Beaches,

The Fixhepc buyers club arranges testing of each members ordered batch of drugs prior to arranging for them to be encapsulated by a compounding chemist.

No batches have failed testing to my knowledge. If they did I assume the policy would be the same as Dr Freeman told his very first patient and they would be thrown in the bin.

There have been quite a lot of people in treatment but due to the newness only a few have completed so far.

As per the Sunrise article expectation of cure is better than 95% but will vary a bit depending on things like genotype, length of infection, level of fibrosis, etc.

I'm also not sure about resistance or numbers treated. Hopefully someone else can answer those questions here.


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 6 years 6 months ago by Gaj.

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6 years 6 months ago #4332

Also, in the forum section, it helps if you add something about yourself to the signature panel. Stuff like your genotype, fibrosis stage, how long you've had hep. That makes it easier to answer your questions without having to check everything with you each time. Click on the profile tab. Look for the edit tab on the right side of the grey bar and click on that then put your password in twice. Then click on the profile information tab and scroll down to the signature panel and enter a bit about yourself like I have at the bottom of my posts.

G


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 6 years 6 months ago by Gaj.

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6 years 6 months ago #4335

Beaches I brought 24 weeks of treatment thru greg jeffery's Indian generics(no testing here) and it worked for me after 8 weeks and I am a hard to treat genotype with cirrhosis. The Doc stuff 's tested here at Tassie Uni - I haven't read of a failure yet. The Chinese manufacturers quality are of world standards. Just do it before the jealous Hep organisations try to close down this pathway for treatment. It works. Plenty of forum support if you need it. It relatively symptomless. Just like a walk in the park for 12 weeks. The Doc's there for you. If you do happen to be the 1 person who fails treatment, new drugs have been approved in America and we are sure to follow. Take the plunge now while there is free movement.

The following user(s) said Thank You: Gaj, beaches

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6 years 6 months ago #4337

Thanks Berrinice, good points. People get concerned about "generics" - they are exactly the same quality active raw ingredients (and the Fixhepc ones are tested to make sure) they just don't carry the "Brand" name and the high prices.


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:

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6 years 6 months ago #4345

Thanks GAJ and Berrinice
I've been talking with RPA who are monitoring me (annual scan, LFT and viral load testing). Last conversation I had they were pretty much asking the devil's advocate questions and fair enough too. They have said they would want to monitor/supervise me when I take the generic treatment but wouldn't give me a script.
I'm due to see them end January with a view to starting PBS funded treatment with them but seeing as Cabinet have broken up for the year the funding ain't going to happen by then :angry:


Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby

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6 years 6 months ago #4348

It ain't ever going to happen so a very reliable source tells me. Like I said do it now while there is freedom. I have a tragic premonition, my gut says it ain't good. buy yourself a xmas present. since your working, buy another less fortunate a xmas present thru the andrew shaw foundation- buyers club hep c fundraiser.

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6 years 6 months ago #4349

Hi Beaches,

Hehe, devils advocate eh? :evil:
Actually I reckon that is better to consider all your options so you can make educated decision rather than just rubber stamp but does confuse and discourage some.

We have a few RPA monitored people here so someone should be able to advise.
Have you been promised definite treatment as soon as approval goes through? Or the usual "wait till approved" then treatment will be available. If the latter then if no luck with generic script from RPA there are other options we can suggest. Then get RPA to monitor.

G


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 6 years 6 months ago by Gaj.

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6 years 6 months ago #4350

Hi Beaches I spent 4 years waiting for a few more months at at time after my treatment failed in 2011, unless your F4 and have Cirhosis I wouldn't hold out hope of getting treated on the PBS anytime soon.


Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV

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6 years 6 months ago #4352

Very true Paul. My specialist told me that when approval came I would be 'one of the earlier ones' which didn't quite sound front of queue to me. Also told me I really needed treatment now and wrote private script for generics so that would happen so I'm not complaining.

(Hey just noticed you were BMS Dac 2011. I was class of 2013)


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 6 years 6 months ago by Gaj.

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6 years 6 months ago #4354

I had heard about generics quite a while ago but was pretty busy and intended to have a good look about now, maybe go to India if I had too. It turns out they came to me :)

Absolutely no regrets getting the generics or recomending them to anyone.

cheers


Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
The following user(s) said Thank You: Gaj

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6 years 6 months ago #4366

Trust me on it won't be happening in any big numbers for at least five years. A decision has been made and it ain't pretty. Take a deep breath buyers club.

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