emo Beaches Treatment - Harvoni (Aus PBS)

  • beaches
  • beaches's Avatar Topic Author
  • Offline
  • Platinum Member
  • The life you save will be your own. START TREATMENT
More
6 years 3 months ago #13205

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
Last Edit: 6 years 3 months ago by beaches. Reason: typo, poor editing
The following user(s) said Thank You: Ariel, isaing4

Please Log in or Create an account to join the conversation.

  • isaing4
  • isaing4's Avatar
  • Offline
  • Elite Member
  • Stop saying 'I wish' and start saying 'I will'. :)
More
6 years 3 months ago #13207

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! :+1:

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
This email address is being protected from spambots. You need JavaScript enabled to view it.
The following user(s) said Thank You: LondonGirl, beaches

Please Log in or Create an account to join the conversation.

More
6 years 3 months ago #13212

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
The following user(s) said Thank You: beaches

Please Log in or Create an account to join the conversation.

More
6 years 3 months ago #13222

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


Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18

Please Log in or Create an account to join the conversation.

More
6 years 3 months ago #13225

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
The following user(s) said Thank You: beaches

Please Log in or Create an account to join the conversation.

More
6 years 3 months ago #13229

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"
Harvoni 12 wks
Brisbane, Australia
Last Edit: 6 years 3 months ago by flyingfox66.
The following user(s) said Thank You: beaches

Please Log in or Create an account to join the conversation.

More
6 years 3 months ago #13240

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


Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
The following user(s) said Thank You: Gaj

Please Log in or Create an account to join the conversation.

More
6 years 3 months ago #13250

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.

fixhepc.com/forum/australian-pbs-listing...e-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
:cheer: :cheer: :cheer:
Last Edit: 6 years 3 months ago by Gaj.
The following user(s) said Thank You: Ariel

Please Log in or Create an account to join the conversation.

  • beaches
  • beaches's Avatar Topic Author
  • Offline
  • Platinum Member
  • The life you save will be your own. START TREATMENT
More
6 years 3 months ago #13256

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

Please Log in or Create an account to join the conversation.

  • beaches
  • beaches's Avatar Topic Author
  • Offline
  • Platinum Member
  • The life you save will be your own. START TREATMENT
More
6 years 3 months ago #13257

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
The following user(s) said Thank You: Ariel

Please Log in or Create an account to join the conversation.

More
6 years 3 months ago #13258

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


G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...
The following user(s) said Thank You: beaches

Please Log in or Create an account to join the conversation.

More
6 years 3 months ago #13270

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
The following user(s) said Thank You: Ariel

Please Log in or Create an account to join the conversation.

More
6 years 3 months ago #13272

Hello PKQ,

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


YMMV
The following user(s) said Thank You: mgalbrai, Ariel, Lynne-Francis-facebook, zhuk, beaches, isaing4

Please Log in or Create an account to join the conversation.

More
6 years 3 months ago #13274

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
The following user(s) said Thank You: mgalbrai, Ariel, Lynne-Francis-facebook

Please Log in or Create an account to join the conversation.

  • beaches
  • beaches's Avatar Topic Author
  • Offline
  • Platinum Member
  • The life you save will be your own. START TREATMENT
More
6 years 3 months ago #13278



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
The following user(s) said Thank You: mgalbrai, Ariel, Gaj, Lynne-Francis-facebook, Matt-Kenney-google

Please Log in or Create an account to join the conversation.

Time to create page: 0.057 seconds

Copyright © 2015-2020 FixHepC

Back to Top