Beaches Treatment - Harvoni (Aus PBS)

This topic has 188 replies, 35 voices, and was last updated 8 years, 2 months ago by beaches.

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19 March 2016 at 12:53 pm #14191
beaches
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- Guardian Angel
@beaches
Yep that is it, the very same. Cost me $38 (not the $28 I formerly said) but the pharmacist had to shell out $22,000 up front.

It’s been on the PBS since 05 March

Thanks for the good wishes. I have a slight headache but anything could have caused it, even the change in the weather.

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
19 March 2016 at 1:02 pm #14193
isaing4
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- Guardian Angel
@isaing4
I am so happy for all hep C people in Australia!
They have the chance to get the magic pills payed by PBS.
Well done Aussi!

I hope that other countries will take this as an example!

HCV since I don’t know. Diagnosed in 2010.
GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive,
started 12 wks Twinvir on 06.12.2015. Feeling great and grateful 🙂
virus not detected 06.02.2016 & SVR24
isaing4@gmail.com
19 March 2016 at 1:32 pm #14198
LondonGirl
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- Guardian Angel
@londongirl
Beaches said

Oh LondonGirl, that sucks.
Hope you get yours really soon

Hi beaches, I am already on tx thanks to MonkMed / FixHepC, am going slowly in the right direction but am extending treatment. Extremely thankful that I didn’t wait for UK NHS !

Wishing you all the very best

GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
19 March 2016 at 9:57 pm #14208
Ariel
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- Guardian Angel
@ariel
Hi there
I said my congratulations but…
I’m wondering where the other patients are with these Aussie PBS drugs
I have friends all still keeping the seats warm at my hospital and also interstate
Other Aussies can you share your knowledge please?
Beaches this is like wow
Well done you x
19 March 2016 at 11:30 pm #14211
zhuk
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- Guardian Angel
@zhuk
Great to hear (and see it!), beaches – all the best for your treatment

And yes you won’t get much more than tiredness, these really are like miracle meds, considering what a feat they have to accomplish! You will be fine.

GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 – 6 weeks UNDETECTED
AST 26
ALT 26
20 March 2016 at 12:07 am #14215
flyingfox66
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- Guardian Angel
@flyingfox66
If you know your genotype and cirrhosis level it really is just a matter of finding a GP who is a decent human being. Greg Jefferies has been compiling lists of them in each state from what I have heard.
You can’t really blame the Public Hospitals for being slow and useless when you consider how poorly they are funded these days.

EDIT: Sorry! Wrong thread! It’s way too early!
Good luck with the tx Beaches…the Harvoni is pretty cruisey for me so far.

F49HepC25ysGT1a
mild”
20 March 2016 at 2:16 am #14226
Ariel
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- Guardian Angel
@ariel
FF
Thankyou I replied to this comment on the appropriate thread. I saw it doubled up there.
Just to let you know I don’t carry emotions like “blame” “useless” “slow” I am about information and data.
Same with the sx of the meds and the EOT UND and SVR for me it’s about data and information.
I’m sure that the people who work in the big hospitals are “decent human beings” albeit with hands tied by bureaucracy at times.
My GP is excellent and I am his first DAA patient.
I’m asking here only for other Australians in the system to share their anecdotal evidence of the PBS roll out; for those who for whatever reason are sticking in that system. This site is comprised of mainly people who have like myself bought their meds. It’s new to have patients who have acquired theirs through the PBS solely like Beaches and yourself.
Especially if they are provided with a script through a big liver clinic, that would be very interesting data to have.
Ariel
20 March 2016 at 4:00 am #14237
Gaj
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- Guardian Angel
@gaj
I agree that the more information we can find out about how the PBS scheme is rolling out the better. Both from public clinic patients and those who went through their GPs. Also how easy it is to get the meds from suburban pharmacies. Here’s a link to the PBS thread.

http://fixhepc.com/forum/australian-pbs-listing/753-pbs-pricing-take-a-deep-breath.html

All this will help both to provide confidence that the system is working as intended/publicised. Also if members provide the general locality such as “S.E. Melb suburbs” in their comments about where they gained access it may allow others to enquire about more detailed info on which GPs and pharmacies to approach (maybe via PM as people could be uncomfortable with sharing that publicly?).

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
20 March 2016 at 4:11 am #14242
beaches
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- Guardian Angel
@beaches
That was a deliberate if poor attempt at politeness

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
20 March 2016 at 4:22 am #14243
beaches
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- Guardian Angel
@beaches
Hi Gaj and Ariel

I just posted in another thread (PBS pricing – take a deep breath) explaining my journey to Harvoni.

I think it was a combination of luck and ar$e.

I was in there on Friday and it’s very clear the staff are working VERY hard. I haven’t ever seen that many doctors there at once. Everyone wants the meds.

But they still make time to answer questions and deal with the emotions that come up (laughing and crying at the same time for example). Given their resource restrictions these dedicated individuals are doing an amazing job.

Day 2 of treatment. Feeling pretty much like I always do.So it’s kind of like a lounge – sofa so good. Managed my regular swim and the exertion of going out and coming back in through a biggish swell.

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
20 March 2016 at 4:41 am #14244
coral
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- Guardian Angel
@coral
Hey Beaches,

Congratulations on starting the treatment and best wishes for a smooth run. The weeks will fly by. It’s wonderful that people are now able to access the treatment through the system and all cudos to those working hard to make it happen. The price charged by G still boggles the mind….

Cheers
Coral
20 March 2016 at 10:36 am #14256
PKQ
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- Treatment Warrior
@pkq
I’m wondering where the other patients are with these Aussie PBS drugs
I have friends all still keeping the seats warm at my hospital and also interstate
Other Aussies can you share your knowledge please?

I had an appointment at the liver clinic here in Adelaide in February, a couple of weeks before the PBS drugs became available. The specialist told me they would call me back maybe in June to prescribe Harvoni. This is the same guy who, for years, has been telling me “You must start interferon therapy IMMEDIATELY or you will DIE”. Thats his emphasis, not mine. Whenever he starts talking about interferon he gets excited and shouts and bangs his fist on his desk. Now that he’s got something that actually cures HepC, it suddenly doesn’t seem to be urgent any more.

GT 1a
cirrhosis (or not, take your pick)
2015 – failed treatment with simeprevir+inteferon+ribavirin
23 Sep 2015 started 24 weeks treatment with Mesochem’s sofosbuvir+ledipasvir
20 March 2016 at 10:43 am #14259
Dr James
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- Guardian Angel
@fixhepc
Hello PKQ,

How about you see me online, we make the right prescription and you can revisit him cured by June?

YMMV
20 March 2016 at 11:18 am #14261
PKQ
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- Treatment Warrior
@pkq
Hi Doctor James,

Thanks for the offer!

In fact, this clinic rang my GP 6 or 8 months ago and told her “Don’t give this guy a prescription, he’s trying to import illegal generics from overseas”. This caused a certain amount of stress between self and GP. After that incident, it’s possible I neglected to mention to either clinic or GP that I’d sourced my own medication from Mesochem without a prescription.

I’m only hanging round the clinic now in case I relapse again and need re-treatment, but you’re right, if I do have to be treated again, I would be better off seeing someone like you rather than going through the clinic.

I’m sorry, I didn’t mean to be hijacking this thread.

GT 1a
cirrhosis (or not, take your pick)
2015 – failed treatment with simeprevir+inteferon+ribavirin
23 Sep 2015 started 24 weeks treatment with Mesochem’s sofosbuvir+ledipasvir
20 March 2016 at 11:59 am #14265
beaches
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- Guardian Angel
@beaches
Go right ahead, PKQ hijack away! The generics are not illegal. The person at the clinic straight-out lied.

The nurse at the RPA clinic tried to dissuade me from going down the generic path. She didn’t say they were illegal, I think she knew I wouldn’t have bought that crap. She did play what she probably thought was a Devil’s Advocate role.

I can’t help but wonder if I got the Harvoni meds as quickly as I did because I told the Dr I’d decided to buy the generics. She told me to wait because they were going to become available on the PBS in the new year. It really feels that I was fast tracked. I’m one of the first people at RPA to get a script, I believe (I look at the bottle on the kitchen bench and still have to pinch myself ).

When I was first diagnosed I did quite a bit of research and decided not to take the Interferon treatment. Dr Strasser pretty much called me an idiot for not doing it. That was in 2004 and for a 60 year old person with Hep C I’m doing pretty well, so I’d say I made the right call.

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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