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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
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
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
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
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
Hi Beaches,
Hehe, devils advocate eh?
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
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
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
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 defeatedGT 3 – about 28 yrs with HCV
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