Viewing 15 posts - 91 through 105 (of 126 total)
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  • #24046
    Avatar photobeaches
    • Guardian Angel
    • ★★★★★
    @beaches

    Hi Thirdtimelucky
    I guess another piece of good news is that you no longer have to rely on the NHS because for not much money you can access geeric treatment.
    I’m hoping one of the new treatments works for you


    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

    #24047
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    Hi ThirdTimeLucky
    Hoping you get onto your next tx and sort this out for good yes excellent generics are available and progressively newer more effective meds to treat more difficult cases are becoming increasingly available too. I have seen a lot of really promising information from Gaj and Mgalbrai and others here re new meds so I hope that gives you hope.
    Sending you splashes of goodvibes for the future and empathy for relapse but most of all strength in your challenge.
    Love from Ariel

    #24085
    thirdtimelucky
    • Topics: 0
    • Replies: 6
    • Total: 6
    • Novice
    @thirdtimelucky

    Really Thanks. Waiting for Test results. NHS seem reluctant to even consider anything not on their approved list. I am discussing providing the drugs and being monitored by NHS. This is hopeful once type of medication is decided? Should have results soon.

    TTL

    #24086
    thirdtimelucky
    • Topics: 0
    • Replies: 6
    • Total: 6
    • Novice
    @thirdtimelucky

    Great News.

    #24094
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    NHS seem reluctant to even consider anything not on their approved list

    Unfortunately, this is true, in general. But… Many will keep an eye on you, albeit “quietly”…
    You can’t really blame they if it’s against the rules, but often they will help out when the time comes.
    My advise, is not to push them too hard on it in advance, just turn up to next appointment and tell them you have started treatment. It would be rather unethical of them to refuse to monitor and there is a “duty of care”.

    There have been some very supportive GPs . Mine was. I took Dr Freeman’s GP cheat list along with me and told my GP I had done much research and “made an adult informed choice” and was “taking licensed medicines via a trusted supply chain on an official trial”. He agreed. I was so nervous asking, but he was great about it. I think some GPS have more leeway, but the tests they order often aren’t as thorough.

    Good luck. :+1:


    GT1a Dec14 F2/8.7 VL 900000-2.5M
    Jan16 Hepcivir-L MonkMed/Redemption
    Baseline: VL 913575 Alt 76 Platelets low
    Wk2 VL1157 Alt 23
    DET Wk 8 VL 32 Alt19 ‘In the slow lane’
    June16 Fibro 5.7 F0/1 LIF 1.5
    Wk 11 VL<12 Alt 13 Det/Unq
    Extending tx 12 wks Mylan Sofo/Dac MonkMed
    Wk 14 VL <12 Det/Unq
    Wk 16 VL UNDETECTED
    Wk 22 + 4 Wks Sunprevir FixHepC
    Wk 24 UNDETECTED Alt 13
    Wk 12 post tx SVR12 Wk 26 SVR24
    Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

    #24099
    avatar876.jpegGaj
    • Guardian Angel
    • ★★★★★
    @gaj

    Linky to the GP Cheat Sheet that London Girl mentioned. :)

    https://fixhepc.com/getting-treated/how-to-do-it/doctors.html


    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
    :cheer: :cheer: :cheer:

    #24101
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    Hello thirdtimelucky,

    Most of the UK teaching hospitals will monitor patients who have sourced generics themselves. Some prescribe, some don’t and that’s on a per consultant basis.


    YMMV

    #24109
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    I am amazed to hear that “some prescribe” – This is an excellent step forward from the start of this year.

    As Dr F says, “this is on a per consultant basis” . The problem for the NHS patient, is finding out who those consultants are, managing to contact them and getting an appointment sooner, rather than 6 months time.

    I have never met my consultant at my current hospital, the specialist nurses seem to be dealing with treatments much more these days, but I guess the consultant needs to give the nod. Have found the nurses extremely supportive and kind. They did ask me not to broadcast this, but if any UK patients would like to PM me, I’d be happy to share my experiences with 3 different UK hospitals and 4 different consultants whose approach seem to vary quite a bit.

    On my blood forms, it states ‘Redemption’ under treatment. It brings a tear to my eye to see! Those of us who have been around since 2015 know we have taken giant steps forward since those days thanks to Dr Freeman and Dr Andrew Hill’s amazing work getting the info out there to EASL and medics etc


    GT1a Dec14 F2/8.7 VL 900000-2.5M
    Jan16 Hepcivir-L MonkMed/Redemption
    Baseline: VL 913575 Alt 76 Platelets low
    Wk2 VL1157 Alt 23
    DET Wk 8 VL 32 Alt19 ‘In the slow lane’
    June16 Fibro 5.7 F0/1 LIF 1.5
    Wk 11 VL<12 Alt 13 Det/Unq
    Extending tx 12 wks Mylan Sofo/Dac MonkMed
    Wk 14 VL <12 Det/Unq
    Wk 16 VL UNDETECTED
    Wk 22 + 4 Wks Sunprevir FixHepC
    Wk 24 UNDETECTED Alt 13
    Wk 12 post tx SVR12 Wk 26 SVR24
    Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

    #26444
    Avatar photoMnem
    • Guardian Angel
    • ★★★★★
    @mnem

    Having now reached the end of my 12 week Sof/Vel treatment, and received my EOT 12 week blood test results showing that I am HVC RNA – NOT DETECTED, I urge you to join me if you remain untreated.

    This is my shout-out to all the Type 2 folk. We type 2ers get told things like “don’t worry, no need to treat you, it’s only type 2, and so benign compared with types1 & 3”. But, it is nasty knowing all that virus is chugging around your body, subverting your liver and other body systems. Another thing I have felt diminished by, is not being able to be an organ or blood donor.

    Type 2 is relatively uncommon in most populations, and easy to treat. Please go ahead and use all of the resources on this site to fix hep c now. Help yourself, then you can help others!


    G2, infected maybe in 1971?
    Diagnosed HVnon-A non-B 1980s, revised to HVC 1990’s.
    Treatment naive. Fibroscan & bloods all normal ranges.
    Viral load 7million,
    began Redemption trial4, 12-week generic Sof/Vel (Incepta) 2017. Week 4 UND, Week 12UND, SVR24
    Thank-yous to my doctor for the script, to Jan at FixHepC for wrangling, and to Dr Freeman for courage.
    Kia kaha e hoa ma!

    #26445
    Avatar photoTina-Hill-facebook
    • Guardian Angel
    • ★★★★★
    @tina-hill-facebook

    Great news, all the best for SVR around the corner.


    SVR 24

    #26461
    Avatar photocoral
    • Guardian Angel
    • ★★★★★
    @coral

    Yay Mnem!! :woohoo: :woohoo:
    Great milestone….onwards to SVR #flower

    #26475
    2bornot2b
    • Topics: 5
    • Replies: 40
    • Total: 45
    • Recovery Champion
    • ★★★★
    @2bornot2b

    Hi Mnem – yay! That’s brilliant news, very very happy for you!


    2b diagnosed about 10 years ago
    Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
    Started dac/sof 27/03/17
    4 week test – liver function normal – alt 31
    full blood count normal
    RNA detected 26 IU/ml Log = 1.42
    9 week test 26/05/17
    bloods and liver function normal – alt 27
    RNA detected <10 IU/ml

    #26477
    Avatar photoGreedfighter
    • Guardian Angel
    • ★★★★★
    @greedfighter

    Great new Mnem! :cheer: :+1: Undetected EOT!

    #26479
    Donna
    • Topics: 1
    • Replies: 70
    • Total: 71
    • Recovery Champion
    • ★★★★
    @donna

    Great news Mnemonic :) :+1:

    #26480
    Donna
    • Topics: 1
    • Replies: 70
    • Total: 71
    • Recovery Champion
    • ★★★★
    @donna

    Mnem that’s predictive text :lol: …….another one cured…… that’s what we love to hear :+1: #love

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