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  • in reply to: daclatasvir is on the way #2670
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    • Guardian Angel
    • ★★★★★
    @life

    True, I did not test them also…

    Jolie wrote:

    hi, this is good to know, thanks for sharing Umair,

    Did you have any problems with importing it to your country? where do you live?
    Did you need any documents or doctor script?

    Testing in the Western countries is very expensive, we’re talking $0000 (!).
    The API’s most people used here were tested by Buyer’s Club, but others who don’t live in Australia did not test them & still found the meds safe & effective.

    Good luck with the treatment,

    in reply to: Nadia’s journey #2632
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    • Guardian Angel
    • ★★★★★
    @life

    LOLLLLL :woohoo:

    Alsdad wrote:

    Copycat!
    :D
    Congrats.

    in reply to: Nadia’s journey #2626
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    • Guardian Angel
    • ★★★★★
    @life

    WHHHHOOOOOOOOPPPPP

    Nadia wrote:

    My Viral Load test came back as Not detected!

    in reply to: Accomodation #2603
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    • Guardian Angel
    • ★★★★★
    @life

    LOL!

    Jolie wrote:

    are you kidding? tents? B)
    soon you’ll probably need to reserve your most luxurious hotels to accommodate the US med tourists paid by their insurer, according to research done in the US :

    http://www.ispor.org/research_pdfs/49/pdffiles/PIH42.pdf

    WOULD YOU LIKE AN ALL-INCLUSIVE LUXURY HOLIDAY WITH FIRST CLASS FLIGHTS TO EGYPT WITH YOUR SOVALDI PRESCRIPTION – innovative cost-saving solution for US tax payers.

    INTRODUCTION
    Gilead implemented a tiered global pricing strategy for SOVALDI (sofosbuvir where the price reflects a country’s ability to pay; a 12- week treatment course in the US costs $84,000 versus $840 in India, Egypt and Brazil.
    SOVALDI has generated some strong payer outcry as its price combined with the large patient population (Hepatitis C) results in a substantial budget impact. 


    METHODS
    This research aimed to evaluate how it could be money-saving for US insurers to reimburse patients for luxury holidays to Egypt where SOVALDI is available at a 99% discount.
    On the 26th November 2014, prices were sourced for the Fairmont Cairo 5-star hotel alongside first-class flights on Emirates airline for trips at the following weekend (Friday 28th to Sunday 30th November) reflecting the potential need for prompt commencement of treatment following diagnosis.

    RESULTS
    The most expensive suite at the Fairmont Cairo was the 233m2 “Diplomatic Suite King,” overlooking the Nile at $10,000 a night for 2 people.
    First-class flights for 2 persons leaving on the 28th November and returning on the 30th would cost $42,754.

    Therefore, US insurers could afford to send hepatitis C patients along with a friend/partner on a luxury weekend break to the most expensive suite in a 5-star hotel in Cairo to collect their SOVALDI prescription for a total of $63,594.
    This means that insurers could give the patient an additional $10,000 in spending money and still make cost-savings exceeding $10,000, as compared to having SOVALDI dispensed in the US.

    CONCLUSIONS
    The availability of high-cost therapeutics in other countries at a fraction of the price that it costs in the US, offers opportunities for US payers to save costs whilst simultaneously offering quality-of-life improving vacations for patients.

    in reply to: Joy To the World #2590
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    • Guardian Angel
    • ★★★★★
    @life

    :) Same here on day 7, Joy! :woohoo:

    Joy wrote:

    Day 7 report:

    • more energy – HOORAY
    • need 1-2 less hours sleep each night
    • eyes have stopped itching (dry-eye symptoms before, using drops a few times daily, now not at all)
    • less trips to the loo at night, sometimes not at all (& I thought that was old age)
    • feels like I’ve been plugged back in to life’s electrical circuit – or is that a coffee buzz? (only 1 shot a day)
    • mild brain fog sometimes – scoring lower on lumosity :ohmy:
    • But

    overall feeling excited and empowered :woohoo: :woohoo: :woohoo:
    And very grateful.

    in reply to: Nadia’s journey #2564
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    • Guardian Angel
    • ★★★★★
    @life

    Thanks chester!

    Chester wrote:

    Nadia wrote:

    Yes, Chester,
    They are doing great job!

    Today first time ever I started feeling discomfort around liver area. It doesn’t mean my liver is hurting, it is probably as somebody suggested my liver is shrinking back to normal size and the tissue around it is tender

    I had the liver discomfort round about week 3. Just before my 4 week VL. Freaked me out a bit. Only time that, briefly, my confidence in the drugs working waned a little.

    Now I see a lot of people here reporting the same thing in that pre-4 week period. Anyway, the pains stopped after about a week and at about the same time the bloated feeling I’ve had for many years went away and my digestive system started feeling much better. Shortly, after that, the fairly extreme highs of feeling good on some days abated and the good feeling levelled out so now I just feel normal good all the time. I’m think this levelling out was the last of the virus having been vanquished. It just feels like it’s all gone.

    I doubt I’ve really felt like this since I was infected 30 years ago in my mid 20s. I’ve spent nearly my entire adult life not knowing what it felt like to be really well. 4 weeks to go as of this Friday. Damn the time has flown by.[/quote]

    in reply to: Nadia’s journey #2563
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    • Guardian Angel
    • ★★★★★
    @life

    Thanks for this post! It’s good to know, Nadia!!! :kiss:

    Chester wrote:

    Nadia wrote:

    Yes, Chester,
    They are doing great job!

    Today first time ever I started feeling discomfort around liver area. It doesn’t mean my liver is hurting, it is probably as somebody suggested my liver is shrinking back to normal size and the tissue around it is tender

    I had the liver discomfort round about week 3. Just before my 4 week VL. Freaked me out a bit. Only time that, briefly, my confidence in the drugs working waned a little.

    Now I see a lot of people here reporting the same thing in that pre-4 week period. Anyway, the pains stopped after about a week and at about the same time the bloated feeling I’ve had for many years went away and my digestive system started feeling much better. Shortly, after that, the fairly extreme highs of feeling good on some days abated and the good feeling levelled out so now I just feel normal good all the time. I’m think this levelling out was the last of the virus having been vanquished. It just feels like it’s all gone.

    I doubt I’ve really felt like this since I was infected 30 years ago in my mid 20s. I’ve spent nearly my entire adult life not knowing what it felt like to be really well. 4 weeks to go as of this Friday. Damn the time has flown by.[/quote]

    in reply to: Side effects for sofosbuvir/Daclatasvir combo. #2538
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    • Guardian Angel
    • ★★★★★
    @life

    Hey Zlikster!! Welcome to the club…Sad you had such a bad time with the previous treatment…Check out with others if omega 3 and stuff is ok…I’m not supplimenting at all, I did it before treatment. I’m curious about your results! Thanks!! Keep us posted!
    :)

    Zlikster wrote:

    Hi folks!

    When i get my hands on Sof+Dac i will post detailed info (blood charts) of progress. My plan is to do PCR @ pre tx, 4w, eot, eot+12w, eot+48w. Liver enzymes (ALT/AST) @ pre tx, 2w, 4w, 8w, 12w, eot, eot+12w,eot+24w, eot+48w. Since i am not insured, it will be a bit stretch on the budget, so i might reduce number of PCR tests to 4w, eot+12w, eot+48w. Regarding supplements, probably nothing. Maybe vitamin D and fish oil. Regarding diet, i will most likely go with same one as i when i was on Peg+Riba. No fatty foods (pork/lamb), from meat mostly turkey/fish/chicken/veal, no sodas, steamed veggies as much as possible, lots of green tea (which i drink anyways), no spices except ginger and turmeric. Thats the plan :)

    I had really bad permanent damage from PegIntron (damaged left ear, severe tinnitus), so i do not intend ever in my life to repeat interferon based tx. Was pretty ok with tolerating Riba tho. From what i heard from people that went on Sof+Dac clinical trials, which were long time ago while Gilead and BMS were cooperating, sx were negligible and all got cured.

    glad to see you all doing good on Sof+Dac!

    best

    in reply to: Joan-Awaiting New Drugs #2536
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    • Guardian Angel
    • ★★★★★
    @life

    Hey Joy!! I’m as well 6 days into treatment…Keep me posted…I feel good aswell… :) :) exciting

    Joy wrote:

    Yes welcome Joan. It was a long 3 weeks for me – but well worth the wait. More energy already, and I’m only 6 days into treatment.

    in reply to: Side effects for sofosbuvir/Daclatasvir combo. #2535
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    • Guardian Angel
    • ★★★★★
    @life

    So NICE!! Me aswell day 6, feeling good!

    Sir-Paul-Paul-MJ-twitter wrote:

    Day 5 no sides feeling great, got home from work and did some chores then went for a swim. Wife is going to find some more for me to do I think.

    in reply to: Liver Clinics and Generic Rebels #2534
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    • Guardian Angel
    • ★★★★★
    @life

    BIG LOVE TO EVERYONE!!! ESPECIALLY GREGG, OUR REBEL HEART FOREVER AND DOKTER THE FREE MAN!!

    Vicki wrote:

    3 weeks ago I was the 1st patient on HCV generics that the Geelong Hospital Liver Clinic saw. Their initial reaction was horror. I was berated for being irresponsible and told I might not be able to be monitored by the clinic for my actions.

    I was surprised that the clinic was so far out of the loop with what was going on considering the recent media attention.

    I phoned the Melbourne St Vincents clinic and the Nurses there were very reassuring and told me of many rebel patients who are having great success. I could here the happiness in her voice as she spoke about this compared to the angry rebuke I experienced in Geelong. They also told me that Geelong Liver clinic had contacted them about a patient (me) for advice.

    During last week I received a phone call from a lovely nurse at the Geelong Liver Clinic. She had been given the task to do the research and bring the clinic up to date. She apologised for the clinic saying, “We are just country yokels in the dark” .

    Geelong is one of Victorias biggest regional cities an hour from Melbourne!

    We talked for a while about the treatments and the frustrations the doctors and nurses face due to lack of access to both regulated and generic life saving drugs. She was concerned about the many folks who aren’t computer savvy or don’t have enough money to even buy the Generics.

    Nurse also told me after the recent meetings in Sydney with doctors and the Government. The word amongst her colleagues is, that the “HCV DAA’s would NOT be listed on the PBS in December for administration early next year”.

    The nurse asked if she could give my phone number to a few people who were interested in curing themselves with the generics but were nervous of taking this path.

    “Oh well I’m not a doctor, I’m not sure about giving people my phone number at this stage. but I would like to help”. I answered with bewildered caution.

    So it seems they are up to speed and have been empowered with the knowledge of the success of the Generics and the approval to monitor patients like us.

    This has given me much food for thought. Things are changing rapidly and hospitals are obviously getting on board with the the Generic Rebels. But still their hands are tied until they can prescribe these drugs themselves. this must be somewhat disempowering for them

    How much of a load can the Buyers clubs take and how long will it be until everyone has access to drugs that could eradicate the HCV virus?

    And….what about the many who don’t have a computer or the 2 to 4K to buy generics? – What can we do to help?

    I will attend the clinic tomorrow for my 4 week blood test results. I’ll have to wait a bit longer for my ‘Viral Load count’ Exciting!!!!

    A huge side effect from these drugs is love and compassion and the renewed energy to give something back as Dr Freeman and Greg Jefferys have shown us is possible.

    in reply to: Nadia’s journey #2501
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    • Guardian Angel
    • ★★★★★
    @life

    WHOOHOOW Yihah!! :woohoo: :woohoo: :woohoo:

    Nadia wrote:

    Today I received my first blood test results taken at 2 weeks point. My ALT had dropped ftom 110 to 32 u/l and it is now within the normal range. Everything else is in normal range as well.
    My Viral load test will take up to 10 days to come back, but I’m sure it will show an impressive drop too.

    in reply to: Joan-Awaiting New Drugs #2499
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    • Guardian Angel
    • ★★★★★
    @life

    Welcome to the club, Joan :P Good luck!

    Joan wrote:

    Hello All

    My name is Joan and I am awaiting the arrival of Sof/Dac. I have been informed that the order was placed last Monday, hopefully they will arrive in 2 weeks 3 at latest. I have been HCV for 40 years and have been affected with fatigue, nausea and weight loss. I had to give up my part-time job a year ago. My specialist has suggested I start treatment meaning the only available one being Interferon. Which I have never taken because the side effects were too harsh. I am grateful to Dr Freeman and team for having set up the Buyers Club as I would still be waiting for the announcement of the ‘new drugs’ on the PBS. Now I have the opportunity to have a cure sooner rather than later and prevent more progression of HCV.
    I have been reading peoples stories of their experience of Sof/Dac and find it very informative and helpful as I prepare my mind and body for the 12 week treatment. Thank you all Joan

    in reply to: Side effects for sofosbuvir/Daclatasvir combo. #2492
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    • Guardian Angel
    • ★★★★★
    @life
    emilio wrote:

    You’re doing awesomely Life, just remember that energy has an impact and you can hit a wall so lots of rest and naps when you can. Take care and keep warm over there. Em :P

    I think so too, Em! Keeping the energy-level controlled. Thanks :)

    in reply to: Side effects for sofosbuvir/Daclatasvir combo. #2481
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    • Guardian Angel
    • ★★★★★
    @life
    Sir-Paul-Paul-MJ-twitter wrote:

    Day 4 Sof/Dac lots of energy not much sleep and lots of murdering of infected cells going on inside me right now :P

    Same thing here Sir Paul…Day 5 European time LOL

Viewing 15 posts - 136 through 150 (of 172 total)