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  • 7 November 2015 at 1:13 pm in reply to: Liver Clinics and Generic Rebels #3476
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    Well that’s a rubbish state of affairs LG…I am sorry you’re having such a hard time finding a doc. All you want is your levels to be monitored right, doesn’t sound like that large an ask…though apparently it is.

    Another UK member here might be able to suggest someone you can look up…but at least the side effects seem to be pretty minimal with the new treatments so intensive oversight isn’t necessary, unlike the old meds. No possibly life-threatening anaemia, no potential heart failure…I doubt that I could have lasted a year on interferon/riba. We are all far better off in that regard.

    Hey I guess you get a European trip as well as your teeth done heh. My English half brother went to Hungary to get his teeth fixed, I guess being employed he didn’t want to take the public system lottery. I do wish we had at least basic treatment here – most of our end-stage public dentistry here involves extractions as that’s how far gone most people are by the time they are allowed to access the system.

    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

    7 November 2015 at 9:12 am in reply to: Can hep C cause strange symptoms? #3461
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk
    CJ wrote:

    Hi Miko,

    Just a thought, all those vegies & fruit sounds very healthy & a good idea, but for those who have the virus, it’s a good idea to stay clear of Iron, this is bad, the hep loves it.

    So maybe go easy on the kale.

    The rest sounds GOOD :cheer:
    x

    Hmmm…on the iron, what if you’re already deficient? I’m vegetarian and taking vit B12 & iron tablets

    And eating spinach 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 26

    7 November 2015 at 5:32 am in reply to: Can hep C cause strange symptoms? #3449
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk
    chrisp wrote:

    I feel obliged to step in and say something here in relation to Bloats experience as I have understood it.
    I trust it will be taken in good faith.

    In my 30 years of Hep C experience there has been 2 quite distinct MORAL messages ( as opposed to scientific or rather based solidly on empirical data) that I have repeatedly received from medical professionals as well as others.
    I personally have never found them helpful.

    They are as follows:
    1. You must never drink ever, it is bad (evil) and bad things will happen to you.
    2. The method by which you contracted the disease was a bad thing to do (evil) and in some way you deserve all you get.

    After all of these years; numerous medical professionals, failed interferon treatment, sentenced to death at 30 if I continue to drink (now 55) various symptoms etc….. I feel I have never benefited from receiving these messages. No matter how well the intention.

    I actually think moralizing health issues is dangerous in and off itself.
    This is a health issue not a moral one. (my belief)
    Any research I have ever read suggests that statistically your odds of recovery are significantly improved as a correlation to reduction in alcohol consumption. However this does vary a lot from individual to individual.
    Given this it is probably a good idea to reduce alcohol consumption quantities however don’t stop enjoying life (this one is not a dress rehearsal).
    And had there been clean injecting equipment available when I was experimenting in my curious youth I probably would have never contracted the disease in the first place. It would be a damn good idea to ensure clean injecting equipment is made available to the next generation of curious youth.

    Ok Got that of my chest, now I might have a glass of white because I enjoy it.

    Agree with you crisp. Its the whole rationale of the model of harm minimisation…moralising is not going to be helpful, and people have to make their own decisions after being informed.

    FYI clean injecting equipment has been available in Aust since the 80s and the first HIV scare – being pre-Hep C it was only brought in by a very forward-looking Govt (if you think that the US has still not followed suit, almost 30 years later) in response to HIV/AIDS.

    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

    7 November 2015 at 4:58 am in reply to: Can hep C cause strange symptoms? #3446
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    This is exactly what all those who do have the DAA’s already regulated in their countries face – you won’t be covered by your insurer/public health system unless you are “sick enough”

    This will inevitably be the case here, whenever the meds are approved. My thinking is – get treatment if you can at whatever stage of your progression…which all the more urgent if your results aren’t favourable. Give yourself a fighting chance for survival and recovery.

    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

    7 November 2015 at 4:32 am in reply to: Joan Started treatment #3443
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    Great news Joan :) Glad to hear you are finally on the treatment road now, hope it will be smooth sailing for you.

    With a bit of luck I will be joining you in a few weeks.

    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

    7 November 2015 at 3:39 am in reply to: Liver Clinics and Generic Rebels #3438
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk
    LondonGirl wrote:

    I went to UK liver clinic yesterday.
    Told ‘no treatment for minimum 8 months ‘
    And ‘if I wanted to be monitored I would have to pay privately IF there were any Drs with space’

    LG

    That’s appalling LondonGirl. So no (what we call bulk-billing) GPs can monitor your bloods either? I always thought the NHS had one up on Australia with dental care etc but this has really turned my head around on that fact. I hope you can find a way. good luck.

    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

    6 November 2015 at 3:34 pm in reply to: Can hep C cause strange symptoms? #3414
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    Strange thing, symptoms….don’t necessary make a whole lot of sense, or correlate with your disease progression, from what I can work out.

    You say you don’t have many to report Bloot despite being around F2/3 and a high VL, yeah I am just about the opposite with F0 and have had these fits of exhaustion on and off all night, can hardly move off the bed 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 26

    6 November 2015 at 1:31 pm in reply to: Mission Accomplished ! #3399
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    Outstanding stuff Sean! very glad that it all went smoothly and you were able to get the meds you need to give yourself a great chance of getting well, and permanently. Speaks volumes about how important the work is which the club and Dr Freeman are able to do for patients who have no other recourse. Awesome to hear it :)

    Mate I would say that’s one well deserved rant…less than a mile from a warehouse full of Harvoni, damn! And it looks as though Ireland weren’t able to pull out that magic rabbit either, and beat down the price to affordable levels – well there’s a surprise lol

    All the best for kicking off your treatment Sean, hope it goes great for you.

    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

    6 November 2015 at 11:45 am in reply to: High temperatures. #3393
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk
    Paul-Jarman-facebook wrote:

    I got told to keep the Dac in the fridge and the Sof cool and DRY by a pharmacist..

    Ziplock with some dessicant packets? Just a thought

    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

    6 November 2015 at 11:41 am in reply to: My twinvir story #3392
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk
    Alsdad wrote:

    My muscle and joint pains got worse (in the first 10 days) before they got better. A few other people have mentioned this too. It can be a symptom of the battle thats going/gone on in your immune system.

    Just think of the pain that those poor little HepC cells are going through as they’re being exterminated. :D

    Now that’s an awesome mental picture :lol:

    Wouldn’t surprise me at all that you might feel a bit worse before the virus really starts being eliminated. Hang in there max.

    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

    6 November 2015 at 10:45 am in reply to: Monitoring question #3383
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    “Hang-gliding without a parachute” Haha I like that!

    Thanks Paul and emilio. Honestly yeah I think that is a pretty sound approach, I’m not expecting much if any real issues but if the hospital can do the necessary tests etc it saves me having to doctor-hunt for someone who is willing to take up the bat. I’ve also got a secondary condition which has suddenly appeared, which I’ve gotta find out if it would preclude starting treatment – and my current doc doesn’t seem to have nearly enough urgency on that IMO 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 26

    6 November 2015 at 9:50 am in reply to: Monitoring question #3373
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    Thanks miko. It was actually my presuming re insurance heh as I couldn’t think of any other logical basis for refusal…but she just said she didn’t feel she had enough experience. Well, no one really has all that much in Aust atm do they! Yet there are docs who are willing to read up on the published material and take it on.

    Since I got a reasonably favourable response from RPA (if a little guarded) I think I will stick with them. They are already monitoring at least a couple of patients on generics, so I will get onto one of the nursing staff on Monday and give her the lowdown. I reckon your suggestion about locating HIV docs in the gay community is a good one, you’re right they often see HIV/HCV infected patients concurrently and are a bit more proactive all round.

    Will see how it goes with the hospital…and the meds are a fair way off yet. Cheers for your reply mate :)

    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

    6 November 2015 at 6:34 am in reply to: Monitoring question #3369
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    Gotta love that rationale, Bloot!

    I couldn’t agree more…I know they have another couple of patients (at least) they are monitoring, who are worse-off than I am. So yes hopefully this will be instructive for everyone all round, and they will look favourably on others as they come through.

    What’s more I guess we are giving them a bit of experience in dealing with the new meds, for whenever they finally make it into the public pipeline. Definite win :)

    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

    6 November 2015 at 6:20 am in reply to: Monitoring question #3367
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    Yep, I think so too :) I’m very lucky to be reasonably minimally affected after having had the virus 27 years now, and the likelihood of public treatment being extended to those in my position is pretty low, no matter what magical rabbit the clinics assure us is going to be pulled out of the Ministerial hat any moment now heh

    As it happens, I had to ring up the clinic today for my VL results (which no one has ever bothered mentioning before) and I thought I may as well put the hard word on the doc regarding if they would agree to monitor me if I sought treatment – remarkably she said yes! although they warned me to be very careful and couldn’t condone such a decision…hey I understand that. But it wasn’t a knockback by any means.

    But yeah – I call that a win for sure! Looking at how other Govt centres people have mentioned here have reacted, definitely. Its gotta be a tough field to work in (bit like the chronic pain docs – they know they can’t cure you, just help you live with it)

    However here is the one rare chance in medicine to potentially cure people, which is pretty bloody amazing.

    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

    6 November 2015 at 4:46 am in reply to: Monitoring question #3364
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    Cheers for your reply Bloot.

    Yeah, considering my low fibrosis reading I don’t anticipate any real problems (though I guess every individual is going to react differently)

    I’m inclined not to go the clinic route, although purely for peace of mind it might be good to have their input and somewhere to oversee it. But since my GP isn’t prepared to do the full-monitoring (can’t blame her from a possibly insurance pov if that’s how she sees it) and I will be taking part in the Redemption trial, maybe linking up with Dr Freeman might be the best way to go.

    Appreciate your opinion mate :)

    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

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