Home Forums Main Forum Patient Stories Dan’s Twinvir story

Viewing 15 posts - 211 through 225 (of 361 total)
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  • #8845
    Avatar photoDan
    • Guardian Angel
    • ★★★★★
    @dan

    LG.
    I’m glad that you finally started treatment. Is your NHS consultant supports you?

    My BP could go slightly up or down, which could be Sofosbuvir’ s side effect. Sometimes on tx BP could be slightly raised or low, especially if you had the problem before that.

    The hart rate increases as well for some people and to be on the safe side, you can ask for ECG. I didn’t ask my GP at 4 weeks, but might ask him next week.


    Gen 1b, F1-F2. Naive.
    Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
    Starting VL 400000, Alt 49/AST 44
    1 week VL 29, ALT 44/AST 30.
    4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
    7 weeks VL Detected, ALT 28, all other normal
    8 weeks UND, 12 week UND, 24 week SVR UND

    #8850
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    Dan, I asked, because I have an online friend working HepC / HIV unit, ( he has humour but gives real advise) – He Said “If you fall over, your BP is low” – Thinking of your dizziness. Do You have your own machine? I’m not convinced they are totally trustworthy. Even tbe do it yourself one at the GPs always gives me a high reading, but when nurse does it, it’s fine. I think Jolie discussed size of cuffs etc and one size doesn’t suit all (My recent mantra!)

    No my old NHS Dr doesn’t support me ha ha Awful man.(not the Proff, he was awesome but retired, a newly allocated one) i have re referred now. I cannot share as yet, but it’s worth looking around, email a few or find ones who have an online presence? I will let you know if this changes. Your bloods are ok, so maybe you do need a neuro Doc? But in the meantime, every time you visit nurse or GP, ask them to take BP, the more obs they do, the better really. Think you need to do a few in a row, to get a general picture as you say, BP does go up and down.

    Have you updated the MMed Drs then? I know Tim has been v busy.


    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

    #8851
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    If your consultant doesn’t support you, he is not giving ‘duty of care” – Change. I know it’s a hassle, but you can maybe ask to see another Dr in the same hospital? Ask HepC Trust too, they have advise on this. (PALS)

    Sorry so slow to respond, Am on small handheld device – Hard work!


    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

    #9690
    Avatar photoEnkel
    • Guardian Angel
    • ★★★★★
    @enkel

    Hi Dan,

    Any new viral load test?


    Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
    Started Twinvir 12/12/15.
    Two weeks
    ALT 17 at 2 weeks
    Viral Load UND at 2 weeks
    ALT 13.5 at 7 weeks EOT
    ALT 10.5 at 15 weeks EOT
    ALT 13 at 27 weeks EOT, VL UND, Cured

    #9699
    Avatar photoDan
    • Guardian Angel
    • ★★★★★
    @dan

    Hi.
    Day 47.
    I had my GP appointment today and got blood test requests printed out. Im going tomorrow morning, should get the results next week.

    I asked for VL, FBC, Liver function, Kidney function, Vit B, D and E.

    Is it necessary to do Full blood count, Liver and Kidney tests every 4 weeks?

    I’m still on and off with sx. The main are light headedness and eczema. Was on antibiotics for a week, as it flared up badly.


    Gen 1b, F1-F2. Naive.
    Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
    Starting VL 400000, Alt 49/AST 44
    1 week VL 29, ALT 44/AST 30.
    4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
    7 weeks VL Detected, ALT 28, all other normal
    8 weeks UND, 12 week UND, 24 week SVR UND

    #10021
    Avatar photoDan
    • Guardian Angel
    • ★★★★★
    @dan

    Day 50 of 84
    Had my blood test on Tuesday, some results came back already.
    FBT is normal
    Platelets was 145 at 4 weeks, now back to normal range 166
    Alt is 28. Unfortunately they don’t do Ast at GP practice.
    Crp is <1 mg/l
    Allergens still high due to eczema eosinophil 1.67 10*9/l
    Vit b 398

    Still awaiting Vit D and VL results. Hopefully tomorrow afternoon or Monday.

    Still fill light headed, eczema quite bad, constantly cold feet and hands.

    Apart from that, very positive.


    Gen 1b, F1-F2. Naive.
    Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
    Starting VL 400000, Alt 49/AST 44
    1 week VL 29, ALT 44/AST 30.
    4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
    7 weeks VL Detected, ALT 28, all other normal
    8 weeks UND, 12 week UND, 24 week SVR UND

    #10457
    Avatar photoDan
    • Guardian Angel
    • ★★★★★
    @dan

    Just got the bad news.7 weeks on and still detected. I guess GP didn’t order the actual VL count, as the test only shows Detected.

    Feel really bad/shaky now and not sure what to do now.

    Not sure if it is due to the bad eczema and re-infection due to scratching???

    All other results are normal and the main sx is lightheadedness


    Gen 1b, F1-F2. Naive.
    Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
    Starting VL 400000, Alt 49/AST 44
    1 week VL 29, ALT 44/AST 30.
    4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
    7 weeks VL Detected, ALT 28, all other normal
    8 weeks UND, 12 week UND, 24 week SVR UND

    #10458
    Avatar photoEnkel
    • Guardian Angel
    • ★★★★★
    @enkel

    According to condition < LLOQ you are still in normal range. But usually at this time people are UND. Moreover, I am concern with the quality or crystalline form of ledipasvir of Twinvir which cant kill the few left viruses. isaing4 is 83 at 4 weeks too. Lets see psavic. Dan cant you do one in private?


    Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
    Started Twinvir 12/12/15.
    Two weeks
    ALT 17 at 2 weeks
    Viral Load UND at 2 weeks
    ALT 13.5 at 7 weeks EOT
    ALT 10.5 at 15 weeks EOT
    ALT 13 at 27 weeks EOT, VL UND, Cured

    #10462
    Avatar photoDan
    • Guardian Angel
    • ★★★★★
    @dan

    I have an appointment for bloods in the different hospital tomorrow, if still detected I need to get Indian generic quickly.

    Feel a lot dizzier in the last couple of days.


    Gen 1b, F1-F2. Naive.
    Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
    Starting VL 400000, Alt 49/AST 44
    1 week VL 29, ALT 44/AST 30.
    4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
    7 weeks VL Detected, ALT 28, all other normal
    8 weeks UND, 12 week UND, 24 week SVR UND

    #10464
    Avatar photoisaing4
    • Guardian Angel
    • ★★★★★
    @isaing4

    Hi Dan,
    I know, you are sad, because you don’t have the desired results that others have.
    I was also sad after 4 weeks my VL came with 83. :(
    But Dr. James wrote this on my thread, a patient with viral load tested during tx:

    ”To reassure you here are some real results from a patient of mine…
    Week 0 7.8 million
    Week 4 76
    Week 5.5 < 15 Week 8 0 Week 12 0 SVR 4 0 SVR 12 0'' I am not a doctor, but I think this is maybe also your case. Maybe your week 8 viral load will be....UND. Wish you all the best! :lol:


    HCV since I don’t know. Diagnosed in 2010.
    GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive,
    started 12 wks Twinvir on 06.12.2015. Feeling great and grateful 🙂
    virus not detected 06.02.2016 & SVR24
    isaing4@gmail.com

    #10465
    Avatar photoisaing4
    • Guardian Angel
    • ★★★★★
    @isaing4
    Dan wrote:

    I have an appointment for bloods in the different hospital tomorrow, if still detected I need to get Indian generic quickly.

    Feel a lot dizzier in the last couple of days.

    Good decision, bloods in a different hospital! :)

    Good luck! #love


    HCV since I don’t know. Diagnosed in 2010.
    GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive,
    started 12 wks Twinvir on 06.12.2015. Feeling great and grateful 🙂
    virus not detected 06.02.2016 & SVR24
    isaing4@gmail.com

    #10466
    Avatar photoEnkel
    • Guardian Angel
    • ★★★★★
    @enkel

    Yes, thats What I suggest, a viral load in a different clinic.

    greedfighter, psavic are also in twinvir we will see their results too at 4 weeks.


    Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
    Started Twinvir 12/12/15.
    Two weeks
    ALT 17 at 2 weeks
    Viral Load UND at 2 weeks
    ALT 13.5 at 7 weeks EOT
    ALT 10.5 at 15 weeks EOT
    ALT 13 at 27 weeks EOT, VL UND, Cured

    #10468
    Avatar photoDan
    • Guardian Angel
    • ★★★★★
    @dan

    Thank you for encouragement. I hope so as well

    The other issue is lack of improvements. The symptoms increased during txt and in the last couple of days it is very difficult.

    Every morning I feel better, but as the day goes on, it becomes difficult.


    Gen 1b, F1-F2. Naive.
    Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
    Starting VL 400000, Alt 49/AST 44
    1 week VL 29, ALT 44/AST 30.
    4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
    7 weeks VL Detected, ALT 28, all other normal
    8 weeks UND, 12 week UND, 24 week SVR UND

    #10469
    Avatar photoEnkel
    • Guardian Angel
    • ★★★★★
    @enkel

    Hi Dan, I see ALT is improving as weeks passes. I strongly suggest a VL at a different clinic, private. I do them only in private in my country. We dont trust the apparatus of public.


    Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
    Started Twinvir 12/12/15.
    Two weeks
    ALT 17 at 2 weeks
    Viral Load UND at 2 weeks
    ALT 13.5 at 7 weeks EOT
    ALT 10.5 at 15 weeks EOT
    ALT 13 at 27 weeks EOT, VL UND, Cured

    #10470
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    Hi Dan,
    Just to say, don’t despair .
    There have been a few people I remember here who did not clear until week 8-9, I think Em was one of them.
    The same goes for “feeling better”, I remember a few expressed that after the initial “high” things become more levelled & some felt tired as the tx progressed but still had UND at the end of tx.
    If you LF & other bloods are improving then this is a positive outcome, it’s much too early to panic at this point, just my opinion.

    Jolie


    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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