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  • 1 January 2016 at 6:21 pm #7729
    Avatar photoDebs
    • Guardian Angel
    • ★★★★★
    @debs

    Hi Jolie , Thankyou,
    I Think this will become more common, the NHS monitoring. I am glad that our beleaguered health system isn’t having to pay the exhorbitant price tag for my meds.
    How are you finding treatment these days?
    Debs X

    1 January 2016 at 7:40 pm #7732
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie
    Debs wrote:

    Hi Jolie , Thankyou,
    I Think this will become more common, the NHS monitoring. I am glad that our beleaguered health system isn’t having to pay the exhorbitant price tag for my meds.
    How are you finding treatment these days?
    Debs X

    I agree as to NHS, hopefully this year more people from the UK will decide to treat with generics, as the more people “make noise” about it the better, spreading the word.
    I did point out to my doc that I just saved the hospital 80K by buying my own tx.

    Thanks for asking, tx been going good, felt a little better each day until Xmas when I developed flu & have plummeted right down where I started; wooly/foggy head, exhausted, bit of fever, etc. so had to postpone my blood tests until I feel better.
    I’ve been really pushing myself with work before tx & hitting out shops full of sneezing & coughing people, that was a mistake, but felt really well for few days & just wanted to “go out”, so here we’re…
    I’m feeling a bit better today, so hopefully will be fine by next week.

    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.

    1 January 2016 at 8:17 pm #7734
    Avatar photoAlsdad
    • Guardian Angel
    • ★★★★★
    @alsdad
    Debs wrote:

    Ha Ha, LG, like it! Why not? :)
    Yes, we will be looking out for that postman next week!
    Thinking about it I will probably take mine after my appt. on the 12th. They may take some bloods etc. And you might not be able to wait that long!
    Thanks everyone for the well wishes! :)
    Alsdad, I am northern but I don’t want to say anymore than that at the moment as I am very aware that my lovely consultant and nurse are going a bit out on a limb here and I dont want to land them in it so to speak. A few of us on here seem to have managed to get NHS monitoring though.
    They do want to administer ribavirin though. I guess because NHS guidelines are 8 weeks Harvoni with ribavirin for non cirrhotics. I think they are re-considering as I am getting 12 weeks meds. I hope so!
    Warm wishes to you all :)
    Deb X

    Sad state of affairs in our country, isn’t it Debs? Consultants having to defy NHS managers and fly under the radar to make sick patients well. Hold out on the Riba. I doubt any Doc with good access to the new DAAs will be prescribing it in a year’s time.

    2 January 2016 at 1:57 am #7753
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    Great to meet you Debs and wishing you a bleedin brill result we are going to be tx buddies I start soon too as you saw
    Thanks for the props and right back atcha xxx

    2 January 2016 at 4:05 am #7767
    Avatar photoDebs
    • Guardian Angel
    • ★★★★★
    @debs

    Thanks Ariel, yes tx buddies! :)
    A batch of us!

    Alsdad, I know what you mean about sad state of affairs but I think it will change, albeit slowly. You were one of the first to go it alone in the u.k am I right? and that’s got to be hard, I couldn’t have done it. I have been lucky to have been able to push at what I sensed was a door that wasn’t locked, and am so grateful.
    Deb X

    2 January 2016 at 1:17 pm #7806
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    Hi Alsdad, I agree, it is a sad state of affairs. Read an article on a cancer specialist recently who said he felt he had to follow such strict protocol, that he felt he could not help terminally ill patients with any ideas relevant to their individual cases and therefore ‘couldn’t be a Dr’ due to beaurocracy – Madness.

    Good luck to you Debs with your NHS support, it’s never easy when dealing with the NHS these days. My end, I’m still waiting on my new consultant referral, everything takes so long! Had to leave that *very unpleasant* (feel free to insert alt words) last consultant I was allocated when my previous lovely one left my hospital. Shame, as that hospital is such a good one. At the end of the day, if we are not receiving’appropriate care’ from our consultants, it is our right to change under Patients Choice.

    This seems to have got a bit long Sorry !
    We’re nearly there Debs :-)

    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

    3 January 2016 at 1:23 am #7850
    Avatar photoDebs
    • Guardian Angel
    • ★★★★★
    @debs

    Hi LG, I know what you mean, we have got used to long waiting lists with the NHS and also varying standards of care.
    Hope your new consultant gets a move on.

    Yes we are nearly there LG!
    Deb X

    3 January 2016 at 4:21 am #7868
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    Hey Debs, I feel so much more cheery already ! The kindness I have experienced on this forum is something else, it really helps me to keep the faith that there are still good people in this world and now, the practical reality of help :cheer:

    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

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