Home Forums Main Forum Genotype Specific Genotype 4 5 6 (1%) First Genotype 6 – Subtype 6a on this forum

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  • #14403
    dacngvn
    • Topics: 1
    • Replies: 20
    • Total: 21
    • Treatment Warrior
    • ★★★
    @dacngvn

    First of all, I’d like to show my deepest thanks to Greg, Dr. Freeman and all kind hearted members for your valuable information !

    Reading your successful SVR results every day had encouraged me for re-treatment and I’m lucky to find a local hepatologist who accepted to monitor with my own generic medications (can’t afford the official meds at crazy prices !).
    She was very curious about my case (gt6a-f4-relapsed after 52 + 26 weeks of Peg/Rib), so she made me re-test all types of blood analysis (results as attached), fibroscan F4 (48 kPa) …
    Verdict: 24 weeks of Ledispavir + Sofosbuvir with Ribavirin 1200mg daily dose. Then blood test after 14 days for ALT, AST, GGT + HCV RNA.
    I asked her if I should buy all meds for the whole 24 weeks course of Tx, but she said “No, if later you don’t use them all, I’m not responsible for these extras !” It made me wonder what she really meant ? That my Tx course might be shortened depending on the monitoring of VL ??

    Could you please enlighten me on this matter as I have to travel abroad and can’t go back and forth to get these meds ?

    Once again thanks for all.

    Attachments:
    • 2016-03-2411.08.55.jpg
    • 2016-03-2411.06.35.jpg
    • 2016-03-2411.45.13.jpg

    GT-6a, diagnosed ’08, relapsed after 78 weeks Tx PEG/Riba -Fibroscan ’14 (F3/F4), Ultrasound with borderline cirrhosis without nodules, still compensated.
    Post re-Tx: VL: 10,100,000 IU/ml – PLT:120 – GGT: 43.42 – AST: 67.80 – ALT: 63.32 – Fibroscan: F4.
    Start Hepcivir L+Rib 24 weeks on April 2nd ’16.
    Day 12: VL 567 IU/ml GGT 33 AST 32 ALT 30
    Day 24: VL 29 IU/m GGT 28 AST 26 ALT 24
    Day 56: VL UND GGT 27 AST 28 ALT 37
    Day 84: VL UND GGT 30, AST 28, ALT 33, AFP 5.14

    #14404
    Avatar photoChapel
    • Guardian Angel
    • ★★★★★
    @chapel

    Hi Dac, I remember you are in Vietnam. Why can you not just ask her what she meant?


    M, 57, Live in Wellington,NZ.
    Genotype 1a diagnosed in 2013.
    Treating for the first time since October 31 with Buyers Club Sof/Led. Thanks so much guys. Minimal side effects apart from sore throat at the start..
    Viral load 5.4m when treatment started, Undetected at 4 weeks, 8 weeks, End of Treatment and 12-weeks post EOT. Yay!

    #14406
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    Hi Dac, Some consultants do often seem to talk in riddles don’t they!
    I wonder if it means she will only monitor for a certain length of time depending on your treatment response?
    I would also suggest you ask, if you have that kind of communucation with her.
    Best of luck with your treatment.


    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

    #14410
    avatar876.jpegGaj
    • Guardian Angel
    • ★★★★★
    @gaj

    Hi Dac,

    These new DAA medications are different from the old treatments.There are no ‘stop treatment’ points if your viral load hasn’t dropped by a certain amount like there used to be with Peg/riba. Usually both slow and fast responders are recommended to continue treatment until completion of the full course unless there is some sort of adverse event which is rare.
    Most of us get a 24 week prescription as 2 x 12 weeks but that is because the customs laws for most countries don’t allow import of more than 12 weeks medications at a time but it sounds like that is not the situation for you in Vietnam? As the others say, it would be useful to understand your hepatologist’s reasons for her recommendation.


    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:

    #14425
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    I would get the full 24 weeks and take that much of two DAAs. With the RIBA the benefits are probably marginal. 24 weeks Rx in both GT1 and GT3 seems to yield similar results with or without RIBA. Treating ASAP should be your priority. Getting the meds into pretty much anywhere is possible without the need for travel. Which country?


    YMMV

    #14439
    dacngvn
    • Topics: 1
    • Replies: 20
    • Total: 21
    • Treatment Warrior
    • ★★★
    @dacngvn

    Dear Chapel, LG, Gaj
    Thanks for all your advices and sorry for my late response.

    Yes, I already did when receiving the prescription for only 14 days, but my hepatologist (PhD, members of AGA, AASLD and EASL) said:
    “If you want me to monitor your re-treatment course, just follow my instructions. So you think that you can buy 6 bottles and take all those pills then you will be cured ? It’s not that easy, if not we doctors don’t have to work any more ! Just buy 1 bottle, take the 12 days dose and come back here to make a blood test, then I’ll decide what’s next ! ”
    What can I ask more !!!

    Hi Dr. Freeman,
    I’m from Vietnam and I heard of your Redemption Trials, unfortunately the reasons I can’t register are:
    – can’t afford as my budget is quite limited.
    – can’t make import customs clearance as I can’t get import permission for personal treatment due to doctor’s prescription limited for only 14 days. Incepta already offered me to ship meds CIF Hochiminh but I’ll be responsible for customs release (big greedy mouth)
    – can’t wire money abroad due to strict bank regulations (lack of suitable prescription and import permission)
    Therefore, I have go to Thailand to fetch the meds with the help from one active member of Hep C Treatment w/o Borders.

    I’m feeling warmly touched by your concern and always listening to further advices.
    Thanks
    Dac


    GT-6a, diagnosed ’08, relapsed after 78 weeks Tx PEG/Riba -Fibroscan ’14 (F3/F4), Ultrasound with borderline cirrhosis without nodules, still compensated.
    Post re-Tx: VL: 10,100,000 IU/ml – PLT:120 – GGT: 43.42 – AST: 67.80 – ALT: 63.32 – Fibroscan: F4.
    Start Hepcivir L+Rib 24 weeks on April 2nd ’16.
    Day 12: VL 567 IU/ml GGT 33 AST 32 ALT 30
    Day 24: VL 29 IU/m GGT 28 AST 26 ALT 24
    Day 56: VL UND GGT 27 AST 28 ALT 37
    Day 84: VL UND GGT 30, AST 28, ALT 33, AFP 5.14

    #14455
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    . So you think that you can buy 6 bottles and take all those pills then you will be cured ? It’s not that easy, if not we doctors don’t have to work any more !

    Without Ribavirin it is that easy for almost all patients taking DAA treatment.

    With Ribivirin, and with serious cirrhosis having a doctor to keep an eye on your bloods is important.


    YMMV

    #14483
    Avatar photojay kim
    • Topics: 3
    • Replies: 48
    • Total: 51
    • Recovery Champion
    • ★★★★
    @jay-kim

    Hi Dac,

    I am not a doctor, so I dont know detail.

    but I saw a patient with GT6/c and cirrhosis got VL<15 within 3 wks after starting to take generic harvoni in South-Korea Hep-c community website.

    You will be cured, this time.

    Jay from south korea


    hep-c for 20yrs.
    GT1a. Started twinvir(sof-led) 05/03/16.
    Before tx: VL=1.7mil. AST, ALT in normal range
    2nd week of tx: VL <15. AST, ALT in normal range
    6th week of tx: VL < 15. AST, ALT in normal range

    #14779
    dacngvn
    • Topics: 1
    • Replies: 20
    • Total: 21
    • Treatment Warrior
    • ★★★
    @dacngvn

    Finally I got my 6 bottles of Hepcivir L for 24 weeks treatment !
    I’d like to show my deepest gratitude for Greg, mr.G, my family, and my thanks to you all on this wonderful community for bringing me motivation and hope, I could not make it without you.
    Today I will take my first pill of the 168 with 1200mg of Rib following your path to get rid of it this time.

    Attachments:
    • 2016-04-0207.03.11.jpg

    GT-6a, diagnosed ’08, relapsed after 78 weeks Tx PEG/Riba -Fibroscan ’14 (F3/F4), Ultrasound with borderline cirrhosis without nodules, still compensated.
    Post re-Tx: VL: 10,100,000 IU/ml – PLT:120 – GGT: 43.42 – AST: 67.80 – ALT: 63.32 – Fibroscan: F4.
    Start Hepcivir L+Rib 24 weeks on April 2nd ’16.
    Day 12: VL 567 IU/ml GGT 33 AST 32 ALT 30
    Day 24: VL 29 IU/m GGT 28 AST 26 ALT 24
    Day 56: VL UND GGT 27 AST 28 ALT 37
    Day 84: VL UND GGT 30, AST 28, ALT 33, AFP 5.14

    #14797
    Avatar photocoral
    • Guardian Angel
    • ★★★★★
    @coral

    Hi Dac,

    I am just catching up on some posts and saw yours. Well done on your perseverence and getting all of the treatment that you need. Hooray for that first pill – it’s pretty special – and so is the last one! Wishing you a smooth time.

    Coral

    #14802
    dacngvn
    • Topics: 1
    • Replies: 20
    • Total: 21
    • Treatment Warrior
    • ★★★
    @dacngvn

    Thanks Coral, hope I can get Undetected result like you :cheer:


    GT-6a, diagnosed ’08, relapsed after 78 weeks Tx PEG/Riba -Fibroscan ’14 (F3/F4), Ultrasound with borderline cirrhosis without nodules, still compensated.
    Post re-Tx: VL: 10,100,000 IU/ml – PLT:120 – GGT: 43.42 – AST: 67.80 – ALT: 63.32 – Fibroscan: F4.
    Start Hepcivir L+Rib 24 weeks on April 2nd ’16.
    Day 12: VL 567 IU/ml GGT 33 AST 32 ALT 30
    Day 24: VL 29 IU/m GGT 28 AST 26 ALT 24
    Day 56: VL UND GGT 27 AST 28 ALT 37
    Day 84: VL UND GGT 30, AST 28, ALT 33, AFP 5.14

    #14856
    dacngvn
    • Topics: 1
    • Replies: 20
    • Total: 21
    • Treatment Warrior
    • ★★★
    @dacngvn

    Hi Dr. Freeman and everybody,
    I’m actually on Day 3, feeling great except that my bowels are working a little bit maybe due to the 1200 mg of Rib. Should I have some yogurts ? Love it.
    Besides, I read in some thread that Amlodipine is not recommended for Led/Sof Tx, isn’t it ? Is there a substitute for my hypertension ?
    My lady doctor prescribed to me Esomeprazole (PRAMEBIG 20MG), I looked up at Liverpool Hep-chart and it comes out:
    “Coadministration has not been studied, but data with omeprazole show only a small decrease in ledipasvir exposure. Proton pump inhibitor doses comparable to omeprazole 20 mg can be administered simultaneously with ledipasvir/sofosbuvir. Proton pump inhibitors should not be taken before ledipasvir/sofosbuvir.” Shoud I skip it ?

    Thanks.
    Dac


    GT-6a, diagnosed ’08, relapsed after 78 weeks Tx PEG/Riba -Fibroscan ’14 (F3/F4), Ultrasound with borderline cirrhosis without nodules, still compensated.
    Post re-Tx: VL: 10,100,000 IU/ml – PLT:120 – GGT: 43.42 – AST: 67.80 – ALT: 63.32 – Fibroscan: F4.
    Start Hepcivir L+Rib 24 weeks on April 2nd ’16.
    Day 12: VL 567 IU/ml GGT 33 AST 32 ALT 30
    Day 24: VL 29 IU/m GGT 28 AST 26 ALT 24
    Day 56: VL UND GGT 27 AST 28 ALT 37
    Day 84: VL UND GGT 30, AST 28, ALT 33, AFP 5.14

    #14859
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    Proton pump inhibitors should not be taken before ledipasvir/sofosbuvir.” Shoud I skip it ?

    Yes, if you can skip it, absorption of ledipasvir needs stomach acid. You only get about 1/2 as much in if you don’t have stomach acid (at least if you were a dog taking famotidine (which is not a PPI but works like one)).

    With Amlodipine:

    Coadministration has not studied but may increase concentrations of amlodipine or ledipasvir due to P-gp inhibition. Although a clinically significant effect of ledipasvir is considered unlikely, monitor heart rate, blood pressure and for increased side effects of amlodipine.

    So it will probably be OK. Keep an eye on your BP, and if you seem to be getting sides past the first week we should consider if you are getting higher levels of Ledipasvir (and no using a PPI to reduce them is not a good idea!)


    YMMV

    #15210
    thainguyen59
    • Topics: 0
    • Replies: 3
    • Total: 3
    • Novice
    @thainguyen59

    Hi Dac,

    How did you get your medications? Did they ship them to you in Vietnam or you have to travel to Thailand to pick them up?

    #15211
    dacngvn
    • Topics: 1
    • Replies: 20
    • Total: 21
    • Treatment Warrior
    • ★★★
    @dacngvn

    I got problem for customs clearance as can’t get import permission, so I have to go to Bangkok and brought meds back


    GT-6a, diagnosed ’08, relapsed after 78 weeks Tx PEG/Riba -Fibroscan ’14 (F3/F4), Ultrasound with borderline cirrhosis without nodules, still compensated.
    Post re-Tx: VL: 10,100,000 IU/ml – PLT:120 – GGT: 43.42 – AST: 67.80 – ALT: 63.32 – Fibroscan: F4.
    Start Hepcivir L+Rib 24 weeks on April 2nd ’16.
    Day 12: VL 567 IU/ml GGT 33 AST 32 ALT 30
    Day 24: VL 29 IU/m GGT 28 AST 26 ALT 24
    Day 56: VL UND GGT 27 AST 28 ALT 37
    Day 84: VL UND GGT 30, AST 28, ALT 33, AFP 5.14

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