Home › Forums › Main Forum › Patient Stories › Beaches Treatment – Harvoni (Aus PBS)
- This topic has 188 replies, 35 voices, and was last updated 8 years, 2 months ago by beaches.
-
AuthorPosts
-
20 March 2016 at 4:39 pm #14275
They are not ILLEGAL, they are merely unapproved – 1:14
As true as it was then as it is now.
[video]https://www.youtube.com/watch?v=fvMPU0WaPcc[/video]
YMMV
24 March 2016 at 4:16 pm #14417Almost one week in.
Nothing to report (knocks on wood)
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 soEOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby24 March 2016 at 4:24 pm #14418Dr James Freeman you really are a living saint
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 soEOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby25 March 2016 at 4:32 am #14431Great to hear beaches Think you’ll be knocking on that wood of “what tx?” for a while yet lol
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 2625 March 2016 at 6:53 am #14441Hope so, zhuk
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 soEOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby25 March 2016 at 7:00 am #14442Very likely, mate
Its hard to conceive that these have gotta be hard-hitting drugs, but there is so little evidence – except the bad numbers dropping
Most people have a hard time finding much (if any) indication you’re taking anything during tx. Keep up the hydration and you’ll cut the risk of headaches. For me, I couldn’t say there was any at all (until I had other health issues which have complicated matters a bit lol)
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 2625 March 2016 at 7:09 am #14444It truly seems to be a miracle cure.
It still make me angry to think that the funding for my treatment comes at the expense of much needed tests and treatment for very sick individuals. Just don’t be poor and sick in the good ole US of Australia
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 soEOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby25 March 2016 at 7:17 am #14445Definitely, hear you on that.
What’s the point of helping one sick population merely to potentially endanger others?
My best friend has terminal metastasised kidney cancer, he needs fortnightly blood tests just before chemo and more extensive bloodwork every 6 months. If he’s gonna be up to pay for them, it will be difficult.
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 2625 March 2016 at 7:41 am #14446The Government certainly hasn’t made a lot of friends by cutting pathology/medicare rebates etc. I don’t begrudge for one minute the HCV drugs being made available here on the PBS. What I do object to is how they have prettied it all up and made out that EVERYONE will get the drugs. Not so from what I have heard……it will be triaged (and rightly so) and only the sickest will be able to access treatment. I am not an advocate for any Government and have very little respect for our politicians here in Australia, whichever one may be in power at any given time given they change so often It will be interesting to see how much money is available to our public hospitals to be able to provide the meds to their patients. Here in Bendigo there is a very very long waiting list for the treatment. I was still on a waiting list for 13 months just waiting for an appointment until I rang the Hospital to tell them to take me off the waiting list as I didn’t need their services. The list I was on was to get an appointment at the Medical Clinic who would then have to refer me to the liver clinic, and goodness knows how long that wait would have been.
I am eternally grateful to James Freeman and his team in Tasmania and also the people on this Forum for the continued support. Not long now until I have my SVR 12 test……..
Beaches I pretty much breezed through my treatment with Sof/Led….and yes if you drink plenty of water it certainly helps the headaches. My energy levels are so much better now too…..feel “different”…calm….and much more alert. All the best for the coming months…
YMMV
25 March 2016 at 9:01 am #14448Hi all,
While it is indeed unfortunate that there have been cuts to some services in Australia, prioritisation of limited funding is always going to occur in any health system. As we have seen over many years, budgets and annual appropriations in all areas of government spending increase/decrease in line with the government of the day’s agenda and political pressures. And regardless of political persuasion there is never enough money for everything so prioritisation will always occur and the best we can hope/advocate is that those priorities are as humane and well targeted as possible.
Despite the fact that some of the recent health care cuts occurred at around the same time as funding for HCV DAA treatment was announced, I do not believe that these two are directly linked other than in the minds of the cynical with their own agendas to run and would suggest looking very, very closely at the motives of those that are presenting that view to you.
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
27 March 2016 at 5:20 am #14519When I said nothing to report, I may have spoken too soon.
I fully expected to feel pretty ordinary on account of stopping all the supplements I’ve been on. (I’ve been doing a bunch of things to try to keep the disease at bay, something was working and I didn’t want to mess with success. (liver supplements, anti-oxidants etc etc, Yoga, weights, cardio, swimming, acupuncture)).
However I’m feeling quite fine. I swim several times a week and was prone to cramps in my calves but these seem to have stopped, even after a long (2.5km) swim.
When I wake up, I’m AWAKE!!!! How amazing is that!!!
Finally, my appetite is changing to wanting to eat less. I’ve been borderline insulin resistant for quite a while and have struggled, not very successfully, to keep weight off (you’d think with the activity I do this would be easy, but no) maybe this is resolving itself. This means I have to make sure that what I do eat is quality, nutritious food.
I’m surprised that I’m experiencing these positive effects so quickly. People have asked me how having hep C impacts my life and I’ve always had to say I don’t know because I’ve had it for so long (probably since the second half of 1975) and not known for so long that I had it that this is normal for me.
Very happy to be looking forward to a new lease on life.
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 soEOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby27 March 2016 at 5:37 am #14520Hi Beaches,
I’m really happy you are feeling better, much more energy and probably no “brain fog” if you ever experienced that. I had more brain fog than loss of energy, though I definitely had both!
Dr. Freeman & Dr. Devsam are both Saints for helping everyone from the GP2U site. Dr. Devsam wrote my RX, so don’t hesitate to book an appointment with him! These guys are the best!
God Bless GP2U.com
27 March 2016 at 6:47 am #14521Hi beaches,
it is interesting how Tx seems to effect us all a little differently. Since starting Tx my appetite and ability to eat a varied diet has improved greatly and I now need to watch what I eat, particularly the delicious high fat items that gave me problems previously.
But agree with all your other observations.
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
27 March 2016 at 9:08 am #14531Great post Beaches
My only real sx was a migraine
Since you haven’t had it and I did sofled you have probs escaped it
I’m hungry all the time like Gaj lol we are all different huh
Good re your energy levels I recall that at the start now you’ve reminded me. Keep swimming it just gets better and better x
Ariel3 April 2016 at 5:30 pm #14815End of week 2
It’s still “treatment, what treatment?”, very happy about that
The only effects are positive. More energy, less brain fog apart from a few days in when I literally could not figure what day it was.
Sleep quality out of this world.
Physical activity is easier. Doing the double swim (Bold and Beautiful swim squad if anyone knows this – look for me I’m the one in the pink swim cap ) has become much less of a challenge
Skin looks clearer and lighter – and all this time I thought that yellow tinge was a tan
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 soEOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby -
AuthorPosts
- You must be logged in to reply to this topic.