Home Forums Main Forum Patient Stories Beaches Treatment – Harvoni (Aus PBS)

Viewing 15 posts - 76 through 90 (of 189 total)
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  • #17161
    Avatar photoMeg
    • Topics: 3
    • Replies: 92
    • Total: 95
    • Guardian Angel
    • ★★★★★
    @meg

    Hi Beaches
    Thank you for your reply. So happy for you. #flower
    I am from Brazil by the way where my insurance does not cover the tx and even if I appeal – nothing guarantees me that the insurance company won´t appeal back and I will end up with a huge debt in the future. The government health program here has imported Harvoni from Gelead but only gives it to the very sick folks (F3 and F4) and even then it is not enough to help the majority of them. So there are a lot people in despair and waiting to be approved.
    Given the situation I googled Generic Harvoni and found both this group and Gregg Jefferys blog. I have been communicating with him to get the meds from India. Just need to figure out some details on how to wire the money then wait for the meds. My doctor and everyone I spoke to about Generic Harvoni are very suspicious though. Unfortunately. it seems I will have to do the tx by myself. He will though write the blood test prescriptions as follow ups so I will be able to check the progress.


    Blood transfusion in 1992 – Diagnosed in 2007
    Tx naive -G1b – F1
    VL 2.270.000
    ALT 40
    Start tx June 4th/2016 with DAAs – Sof/Led from India
    Bloods on two weeks of tx (June 18th)
    AST 17 – ALT 10 – GGT 19
    Virus UND
    Bloods on six weeks of tx (July 16th)
    AST 17 – ALT 8 – GGT 12
    Virus UND
    EOT on August 8th (did 9 weeks and 3 days)

    SVR 4 Virus UND (September 7th)
    AST 13 – ALT 5

    SVR 14 Virus UND (November 12th)

    #17168
    Avatar photobeaches
    • Guardian Angel
    • ★★★★★
    @beaches

    Hi Meg
    Thank you for your good wishes.
    I am so sorry to hear that you are having trouble accessing Tx.
    It also makes me angry. Doctors do not have the right to be ignorant imo – that’s just lazy.
    Dr James Freeman published some very interesting information about the effectiveness of generics, and you can find it on the forum. I’m sure it is still on the post about EASL translators. Just use the search string EASL and you will find the attachment. Even if your doctors are not interested in finding out the truth it will surely help you.
    The Australian government is funding Tx for all Hep C patients but I believe it’s still not totally easy to get it, as doctors have to do some training to be allowed to prescribe and I suspect that many just can’t be bothered.
    I hope you persist in your attempts to access generic treatment (the vast majority of people on this forum have used them and and are getting their SVR12 clearances). Just do what you have to do. I cannot believe how much my life is changing and I still have 4 weeks of Tx to go. :+1: #love #flower


    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

    #17184
    Avatar photoHazel
    • Guardian Angel
    • ★★★★★
    @hazel

    Hi Meg, Hey Beaches,
    Show your doctor this article: EASL endorsement on efficacy of generics, first results presented April 2016:

    http://ilc-congress.eu/low-cost-generic-direct-acting-antiviral-treatment-hepatitis-c-equivalent-branded-formulations/

    This is the head of the International Liver Congress, where there were 10, 000 delegates, saying the drugs do work and are safe if you source them safely. See Greg Jefferys was a co-author- those results came from drugs he helped people source, or here, at fixhepc.
    good luck!


    Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716

    #17187
    Avatar photobeaches
    • Guardian Angel
    • ★★★★★
    @beaches

    Laws around patents need to be changed


    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

    #18015
    Avatar photobeaches
    • Guardian Angel
    • ★★★★★
    @beaches

    Hi everyone

    Just under 2 weeks of Tx to go! :woohoo:

    I wasn’t going to post because there is nothing dramatic to reveal apart from dramatic improvements.

    However given recent developments around our prostitute of an Australian government I thought I’d better take the opportunity.

    My last day of Tx will be Friday June 10, and on that day I’ll get bloods done. 2 weeks later I’ll go to the doc and get the results.
    I am very confident (genotype 1a,F0 scan pre Tx, LFTs very good and VL <15 at week 4) that I'll be clear and if not I'll go another round or whatever.

    Sx have been none to minimal.
    Many improvements, including but not limited to
    Much more energy
    Wonderful sleep quality. The one night I couldn't get to sleep was because I didn't realise for quite a while that I was that little bit too cold and needed an extra blanket.
    Improved skin tone - yellowish tinge has gone from skin and eyes.
    Noticeably sharper mental focus

    My Tx is the branded Harvoni product but if I hadn't been able to access it, I would have gone with the generics without hesitation. I had become aware of it around September last year, but the chips just fell my way regarding the timing of the branded product being listed on the PBS.

    So if anyone is reading this and wondering whether they should access the new DAAs, I say to you do it without a shadow of a doubt, it will change your life.[/color]


    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

    #18019
    Avatar photoGT2
    • Guardian Angel
    • ★★★★★
    @gt2

    Well said Beaches.

    I think everyone “better take the opportunity”, and grab it with both hands, before it is too late …

    Having a confident & positive attitude, along with regular exercise, which you have and do, goes a long way in helping the DAAs defeat this insidious HCV … so, from what you’ve written, I have little doubt that you’ve got this thing beaten already … the official confirmation is a mere formality.

    Then, you’ll definitely have the green light to go out and make up for your deprivation in your youth … ;)


    1983: Hospitalised with Acute non-A, non-B Hepatitis after ICU blood transfusion 3mths earlier => HCV GT2
    22/02/16: (pre-tmt) ALT 61, VL 2.48 IU/ml Hepascore 0.32 (F1/2), fatigue, brain fog, bloating (Treatment Naïve)
    10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
    09/05/16: ALT 34, VL: NOT Detected :cheer: 🙂 , FBG 11.9 :huh:
    17/6/16 FBG 5.7; PPBG (@14.22) 6.9 (@ 20.45) 7.1; BP 124/72
    🙂 (Accu-Chek Mobile & Omron Auto BP Monitor) 🙂

    #18022
    Avatar photobeaches
    • Guardian Angel
    • ★★★★★
    @beaches
    GT2 wrote:

    Then, you’ll definitely have the green light to go out and make up for your deprivation in your youth … ;)

    GT2 that’s been happening regardless. I’ve sacrificed many dollars and quite a bit of my hearing at the altar of live music.


    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

    #18029
    Avatar photoMatt-Kenney-google
    • Guardian Angel
    • ★★★★★
    @matt-kenney-google

    Lookin’ good beaches.
    Thanks for updating your progress and experience with sdfx. As has been said many times in this forum, we are all different and so can expect different sdfx during and after tx. A wise proverb says, “Plans fail when there is no consultation, But there is accomplishment through many advisors.” Thank you, for adding your voice to OUR consultation sis.
    Hope to be seeing it still in the months to come … let that “generic rebel spirit” SOAR! ;) :+1: #love #flower


    GT1a; Got it some time in the 70’s; Diagnosed @1976
    Tx naive
    METAVIR: A2-F2
    SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
    3 weeks after SOT: AST 27 ALT 31 VL 138
    Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
    Hep C RNA NOT DETECTED”

    #18161
    Avatar photobeaches
    • Guardian Angel
    • ★★★★★
    @beaches

    Not an update but some nice shots for your enjoyment.
    First day of winter, sunrise at Manly Beach. Air is cool, water is warm (no wettie yet)

    Manlybeachsunrise1June.jpg

    Manlysunrise1June.jpg


    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

    #18180
    Avatar photoGT2
    • Guardian Angel
    • ★★★★★
    @gt2

    Nice pics

    You’d need a wettie here this morning … 4.9C at 7.25am … beautiful cloudless blue sky though … a fresh but beautiful start to winter in the West.


    1983: Hospitalised with Acute non-A, non-B Hepatitis after ICU blood transfusion 3mths earlier => HCV GT2
    22/02/16: (pre-tmt) ALT 61, VL 2.48 IU/ml Hepascore 0.32 (F1/2), fatigue, brain fog, bloating (Treatment Naïve)
    10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
    09/05/16: ALT 34, VL: NOT Detected :cheer: 🙂 , FBG 11.9 :huh:
    17/6/16 FBG 5.7; PPBG (@14.22) 6.9 (@ 20.45) 7.1; BP 124/72
    🙂 (Accu-Chek Mobile & Omron Auto BP Monitor) 🙂

    #18183
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    Great updates Beaches
    I’m sure you will cross the finish line with a great outcome girl x
    Sounds like you are at the ripping energy I recall from the last fortnight of tx it was phwoar!
    Sydney is GRRReat
    Cold snap in the air but not like down home!
    Loving your Manly Pics
    Splashes from Ariel x

    #18185
    Avatar photoMatt-Kenney-google
    • Guardian Angel
    • ★★★★★
    @matt-kenney-google

    WOWZERZ! beaches … That’s beautiful… Wish we could be there with you to witness that sky/beach canvas!


    GT1a; Got it some time in the 70’s; Diagnosed @1976
    Tx naive
    METAVIR: A2-F2
    SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
    3 weeks after SOT: AST 27 ALT 31 VL 138
    Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
    Hep C RNA NOT DETECTED”

    #18297
    Avatar photobeaches
    • Guardian Angel
    • ★★★★★
    @beaches

    Just as an RPA offers the new DAAs(how’sthatforatrioofcolor="#ff0000 class="bbcode-color">TLAs?) to [color=#444400″>ALL Hep C patients


    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

    #18302
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    That’s fantastic Beaches
    Anyone who needs in any State could even fly in on a cheap flight if no luck at home. Ty for the update xxx
    Splashing Manly salty water at ya
    Ariel

    #18303
    Avatar photobeaches
    • Guardian Angel
    • ★★★★★
    @beaches

    Definitely worth getting in touch with them….


    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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