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  • 12 November 2015 at 7:40 pm in reply to: Blood tests by post in the UK #3758
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    hi, yes very useful resource, depending where in the UK you live they have private labs & hospitals nearby where you can book your tests. I hope it works as they say it does, if so it does look most straightforward.
    This is my backup plan if my GP or consultant is not willing to do my tests on the NHS.
    I remember talking with London Girl about this as she had some experience dealing with them.

    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

    11 November 2015 at 6:27 pm in reply to: Day 14 Results #3691
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    well done Paul! very happy for you,
    this is most encouraging news for all the Geno’s 3 such as myself & for whom the old tx did not worked.
    jolie xxxx :)

    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

    11 November 2015 at 6:14 pm in reply to: Fibroscan – the scoring card #3690
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    LD,
    After reading your story, If I was you I’d immediately change both my GP & the Consultant. You have every right to do so if you’re not happy.
    I actually did that a way back when I was still living in London, stating that I was not happy with the services I received & the way I was treated & talked to.
    I registered with new GP at another surgery & went to another hospital where I saw a different consultant & I was much happier there.
    Since I moved out of London completely I was lucky enough to find a nice GP here with whom I have good contact, if I did not I’d ask to be seen by someone else or change the surgery all together. Basically it’s a pot luck when it comes to GP’s & consultants, you never know who’ll get.

    Remember that all NHS employees are civil servants, meaning their job is to serve us the patients & they are employed by us via the taxes we pay which includes their huge salaries.
    You’re the boss! , so there is no point wasting more time with your current doctors :)

    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

    11 November 2015 at 5:44 pm in reply to: Gamma GT #3686
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    well done Alsdad!,
    I’m so happy for you & hope you’ll continue to feel better & better once you finish the tx in 12 days,
    jolie xxxxx :)

    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

    10 November 2015 at 9:06 pm in reply to: Fibroscan – the scoring card #3624
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    hi everyone,
    to add to fibroscan’s stories my own.
    I had 2 fibroscans; first 2010 , score 8.1pKA & second in 2015, score 8.7pKA, no fatty liver.
    Not sure what to make of it, as it appears not much change in fibrosis in last 5 years, is that even possible???

    Especially having geno 3, which apparently has the fastest rate of fibrosis development as compared to other genotypes , according to experts, so I was expecting a score well above the 8.7 range plus Fatty Liver, but it’s not the case at all.
    The USG, showed no fat on the liver, but I do have a bit of a spread across my abdomen, so must be all surface fat & not inside the liver…or the tests are wrong,
    My doc told me: “mild fibrosis therefore no treatment for at least a year as not qualifying for it presently”.

    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

    8 November 2015 at 10:34 pm in reply to: How Safe Is Treatment? #3525
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie
    Enkel wrote:

    I think with riba and ledipasvir is safe

    how do you know that?
    Doc James said: “There is no such thing as a 100% safe medical treatment”.
    Not even the meds we can buy over the counter are 100% safe.
    It is always the question of what is more riskier living with HCV ? or treating with new DAAs that only been around for a few months.
    The statistics say living with HCV is more riskier then treating it with risky new meds, so personally am going to take the risk & treat it.

    from the article:
    “Given that Gilead’s most successful hepatitis C product, Harvoni, is a nuanced version of Sovaldi itself, it is safe to assume that the toxicity risks apply to it as well. “

    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

    8 November 2015 at 10:19 pm in reply to: How Safe Is Treatment? #3523
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    from the article:

    “Sovaldi was found to abnormally reduce heart rate in three out of 415 patients treated in the hospital last year.
    All three patients had to be given a pacemaker within a week of treatment to keep their heart rates normal.
    In March, Gilead issued an advisory warning against the use of Sovaldi with another anti-viral drug and amiodarone.
    Gilead spokeswoman Cara Miller said in a statement: “It is important to note that sofosbuvir alone is not associated with cardiac conduction abnormalities.” She further pointed out that no complications were noted in patients taking Sovaldi in combination with ribavirin, a famous aging HCV drug.”

    anyone here on tx noticed any heart beat abnormalities?? & or is being monitored for heart problems by their doctors ?

    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

    8 November 2015 at 8:09 pm in reply to: Viral Load On Treatment – What To Expect #3518
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    There are probably questions none knows the answers to for certain at this moment, not even the experts, as HCV & it’s treatments is very new on the scene. The science of Virology itself is also relatively new as compared to well established Bacteriology.

    When I was first diagnosed 12 years ago, I studied & read everything I could about HCV, viruses, both in mainstream medical literature as well as looked & participated in naturopathic & complementary, alternative med. approach etc. for the next few years.
    I even came across some great speculations & studies that HCV does not exists at all & was just Pharma manufactured propaganda in order to sell those expensive drugs & expensive tests, that was fun!
    It all sounded very plausible to unscientific mind & I felt much better for a while after being convinced that this virus does not exists & it is just a fragment of some old mitochondria.etc. :blink:
    I stopped reading anything about HCV soon after my first tx failed to cure me, I could not see the point of wasting time acquiring knowledge if all I ever wanted was a cure & not theories.

    Now I just want the drugs & fast & be done with & start living again. :(

    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

    8 November 2015 at 7:13 pm in reply to: Viral Load On Treatment – What To Expect #3516
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie
    dointime wrote:

    I am puzzled about this:-

    The DAAs target the virus inside the hepatocyte and stop it replicating. So when all the hepatocytes are saturated with DAAs then replication of the virus should be stopped dead in its tracks. As most of the virus is in the blood, that should be the time it takes for all the blood to circulate through the liver. That would be <24 hours. So why does it actually take weeks to get to UND? What am I missing?

    dt

    Hi DT,
    I think it has to do with detection of HCV in brain & CSF ( cerebral spinal fluid)
    Maybe the virions that replicate outside of blood cells, like the brain tissue & CSF take much longer to kill? due to BB barrier ?
    As I am not a medical researcher or MD this is just a pure speculation.
    I don't have a link to this just picked it out from some of my old notes:

    "The detection of HCV RNA in brain tissue, together with evidence to suggest independent viral evolution within the CNS, has suggested that the neurological symptoms reported in patients may result from direct infection of the brain. Recent advances in the tools available to study HCV have allowed researchers to address the question of whether HCV replicates in brain-derived cells. The recent observation that HCV can replicate in brain endothelial cells, and that neuroinflammation is a feature of HCV infection, may provide a mechanism for the neurological symptoms observed in a significant number of infected patients."

    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

    3 November 2015 at 11:08 pm in reply to: Beacon Pharma #3275
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    hi, hope everyone is well today,

    I was wondering for a while if there are any updates on tests done on Beacon Daclatasvir ? or any other generic Dac ??
    I did read the packaging is great but what about the meds ?

    Many thanks for any updates from Doc James, or anyone who has some news,

    Jolie xxxx

    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

    3 November 2015 at 12:10 am in reply to: Emilio’s Place #3225
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie
    LondonGirl wrote:

    Oh that’s so strange Jolie, I was just having this conversation in my kitchen with someone, checked my email and your post saying the same thing, ie that if does can affect smaller people, surely it could affect larger people in a different way too.

    hi LG,
    In the recent article about the shorter 3 weeks tx:
    “Schinazi says combinations of more potent drugs and higher doses of existing ones could reduce the time to cure even further. “I think eventually we could go to 2 weeks,”

    http://news.sciencemag.org/health/2015/10/study-suggests-unprecedented-3-week-hepatitis-c-cure

    Even the Godfather of Sovaldi Schinazi himself is speculating at this point, it’s still work in progress where the optimum prescribing of DAA’s & HCV tx is concerned.

    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

    2 November 2015 at 11:28 pm in reply to: My twinvir story #3220
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    congratulations on starting the tx & hope you’ll feel better soon after this initial clear out :)

    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

    2 November 2015 at 11:22 pm in reply to: Emilio’s Place #3219
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie
    emilio wrote:

    Hi everyone

    Well doing a little road trip now to have some testing. Only testing for RNA as VL/quantifiable should still be under testing range so no point. Heres hoping all the little RNA fragments are gone. Em

    Edit: Smack on week 4 today.

    Hi Em,
    Hope your new test will show all the little buggers have now gone.

    Are you by any chance a large man ?
    I was thinking about this idea of the “one size fits all” & maybe if larger person takes the same amount of the meds as smaller person then maybe there could be delays with SVR of a few days or weeks as the meds have a larger area to saturate, so it takes a bit longer to do it, don’t know,…. just thinking aloud,
    what do you think?

    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

    2 November 2015 at 11:06 pm in reply to: Sirs treatment journey! #3218
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    bets of luck with the start of your tx Sir!
    hope things go smoothly :)

    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

    30 October 2015 at 4:13 pm in reply to: Emilio’s Place #3071
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    Em, those are very good results, all going in the right directions & normal LF – you liver is feeling very happy !,
    :)

    Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
    Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
    5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
    5 weeks HCV PCR RNA – UND. – down from 2 ML
    9 weeks HCV PCR RNA – UND.

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