Home Forums Main Forum FixHepC Admin Q & A Monitoring question

  • This topic has 15 replies, 7 voices, and was last updated 9 years ago by Avatar photozhuk.
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  • #3360
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    Hi everyone

    Just like to get some feedback on the question of monitoring from those who are currently in or have completed treatment..

    Understanding the the new antivirals are far better tolerated than the old regimens, have people found that it is more a matter of just self-dosing and turning up for the stipulated blood tests? Or is a bit more intensive monitoring/support needed?

    Wondering after my GP visit today (first chance to talk about treatment) where the doc told me she doesn’t feel comfortable about any “support” role past just basic blood testing as she doesn’t know enough about the meds…and that looking over a copy of the required testing list she wasn’t sure she would be able to organise some of them anyway.

    She suggested I should go back to the hospital clinic, – where last week they told me to forget all about generics and wait for the new meds next year lol – but they possibly might have a different opinion if I explain that the drug procurement process has kicked off now and they are on the way. I’d rather get all this cleared up asap so there is no uncertainty when they do arrive…if the hospital declines I’m not sure where to find a compliant GP prepared to take on the unknown.

    .


    GT1a since 1988, diagnosed 1990
    F0, tx naive
    VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
    Started Mesochem sof/dac 12 weeks 01/01/2016
    11/02/2016 – 6 weeks UNDETECTED
    AST 26
    ALT 26

    #3362
    Avatar photoBloot
    • Topics: 3
    • Replies: 65
    • Total: 68
    • Recovery Champion
    • ★★★★
    @bloot

    Hey mate
    i think it’s a bit of a personal thing really
    For me, the beauty about all this that I am the master of my own destiny up to a point
    I’m just going to pop 1 pill of each a day or as prescribed on the pack if there is one (they should arrive within a week)
    i will be getting a blood test at weeks 4, 12, 24 + 12 weeks or so after tx has finished
    I am having a fibroscan on January 11 and an appointment at the liver clinic in about a month

    I am prepared to be given no support during tx, so any support i receive will be a bonus
    One of the worst things about my previous tx was being owned by the Department of Health for the duration of tx
    If this time they choose to ingnore generics, then that’s their problem of ignorance and at least i won’t have to make the 45 min drive
    Once tx is finished i will be seeing a naturopath with a medical degree to give myself the best chance at rejuvenation

    Alternatively, you could go to GP2U and get an appointment with Dr Freeman to discuss any concerns
    It costs, but you get advice without the ignorance and any scripts/ testing you need


    52 y.o. G3a for about 30 years
    Previous tx 2004 interferon/ ribavarin
    2004: ALT 624 AST 263

    Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
    6/11/15: Sof/ dac started
    26/11/15: ALT 41 AST 41
    7/12/15: ALT 36 AST 30 Virus undetected

    2004 biopsy F3
    Fibroscan appt Jan 11 2016.

    #3364
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    Cheers for your reply Bloot.

    Yeah, considering my low fibrosis reading I don’t anticipate any real problems (though I guess every individual is going to react differently)

    I’m inclined not to go the clinic route, although purely for peace of mind it might be good to have their input and somewhere to oversee it. But since my GP isn’t prepared to do the full-monitoring (can’t blame her from a possibly insurance pov if that’s how she sees it) and I will be taking part in the Redemption trial, maybe linking up with Dr Freeman might be the best way to go.

    Appreciate your opinion mate :)


    GT1a since 1988, diagnosed 1990
    F0, tx naive
    VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
    Started Mesochem sof/dac 12 weeks 01/01/2016
    11/02/2016 – 6 weeks UNDETECTED
    AST 26
    ALT 26

    #3366
    Avatar photoBloot
    • Topics: 3
    • Replies: 65
    • Total: 68
    • Recovery Champion
    • ★★★★
    @bloot

    You’re welcome, Zhuk
    it’s $90 or so, but it’s cheap peace of mind just to speak to the doc about any concerns

    As far as clinics go, I think it’s the luck of the draw
    For example, a friend of our is a social worker at the HIV, Viral Hepatitis & Sexual Health clinic on the mid North Coast
    Apparently on Greg J’s blog it was mentioned that some nurses there were very helpful
    She wondered who they were because most of the ones she dealt with were completely unhelpful and rude at the mention of generics
    (this may have changed a little since a memo went around supporting the support of people on generics)

    My wife worked in the health system and morale is generally low
    People get stuck there and become jaded or think they know everything and patients are stupid
    You just have to try and get them to help where you can
    But generally I’ve found – if you pay you have options and better advice
    If it’s free you are told what to do and it may not make sense

    Anyway, good luck matey – you’re on the right path


    52 y.o. G3a for about 30 years
    Previous tx 2004 interferon/ ribavarin
    2004: ALT 624 AST 263

    Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
    6/11/15: Sof/ dac started
    26/11/15: ALT 41 AST 41
    7/12/15: ALT 36 AST 30 Virus undetected

    2004 biopsy F3
    Fibroscan appt Jan 11 2016.

    #3367
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    Yep, I think so too :) I’m very lucky to be reasonably minimally affected after having had the virus 27 years now, and the likelihood of public treatment being extended to those in my position is pretty low, no matter what magical rabbit the clinics assure us is going to be pulled out of the Ministerial hat any moment now heh

    As it happens, I had to ring up the clinic today for my VL results (which no one has ever bothered mentioning before) and I thought I may as well put the hard word on the doc regarding if they would agree to monitor me if I sought treatment – remarkably she said yes! although they warned me to be very careful and couldn’t condone such a decision…hey I understand that. But it wasn’t a knockback by any means.

    But yeah – I call that a win for sure! Looking at how other Govt centres people have mentioned here have reacted, definitely. Its gotta be a tough field to work in (bit like the chronic pain docs – they know they can’t cure you, just help you live with it)

    However here is the one rare chance in medicine to potentially cure people, which is pretty bloody amazing.


    GT1a since 1988, diagnosed 1990
    F0, tx naive
    VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
    Started Mesochem sof/dac 12 weeks 01/01/2016
    11/02/2016 – 6 weeks UNDETECTED
    AST 26
    ALT 26

    #3368
    Avatar photoBloot
    • Topics: 3
    • Replies: 65
    • Total: 68
    • Recovery Champion
    • ★★★★
    @bloot

    I’d call that a win for sure
    And while they monitor you, being in a category with a very high success rate, they will see how well the generics work
    They will then be forced, just out of common sense and humanity, to support anyone else in the same position
    So it’s a win for all :cheer:


    52 y.o. G3a for about 30 years
    Previous tx 2004 interferon/ ribavarin
    2004: ALT 624 AST 263

    Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
    6/11/15: Sof/ dac started
    26/11/15: ALT 41 AST 41
    7/12/15: ALT 36 AST 30 Virus undetected

    2004 biopsy F3
    Fibroscan appt Jan 11 2016.

    #3369
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    Gotta love that rationale, Bloot!

    I couldn’t agree more…I know they have another couple of patients (at least) they are monitoring, who are worse-off than I am. So yes hopefully this will be instructive for everyone all round, and they will look favourably on others as they come through.

    What’s more I guess we are giving them a bit of experience in dealing with the new meds, for whenever they finally make it into the public pipeline. Definite win :)


    GT1a since 1988, diagnosed 1990
    F0, tx naive
    VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
    Started Mesochem sof/dac 12 weeks 01/01/2016
    11/02/2016 – 6 weeks UNDETECTED
    AST 26
    ALT 26

    #3372
    miko3
    • Topics: 5
    • Replies: 82
    • Total: 87
    • Guardian Angel
    • ★★★★★
    @miko3

    Zhuk,Your GP is a cowardly whimp.As for saying she doesn’t know enough about the medications,thats crap,and she shouldn’t be practicing medicine.It’s got nothing to do with her insurance.
    Doctors have a computer on their desk with instant access to all the latest “How to treat”Information.And they are all very aware of the generic scenario that is happening.
    One suggestion I might make, is to find out which doctors members of the Gay community who have HIV are going to.They have a knack of finding out who is genuinely on their side.
    Generally such doctors are likely to be more compassionate,better informed,and are less likely to be adverse to generics.
    Many go to conferences on HIV which often include HCV as treatment mechanisms have a lot in common.
    Just look for a new GP Zhuk.Sit down and explain what you intend to do,and if there is one iota of hesitation on their part,
    get up and walk out.You will find the right one sooner of latter and be very grateful when you do
    Good luck.


    Gen 1b 40yrs,tx naive, f3/f4.VL too high to quantify.
    Started tx 12Oct.sof and riba India via greg.Dac from Mesochem.
    4wk result virus not detected,all liver functions in normal ranges.
    Only SE intermittent insomnia.Feel great and grateful otherwise

    #3373
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    Thanks miko. It was actually my presuming re insurance heh as I couldn’t think of any other logical basis for refusal…but she just said she didn’t feel she had enough experience. Well, no one really has all that much in Aust atm do they! Yet there are docs who are willing to read up on the published material and take it on.

    Since I got a reasonably favourable response from RPA (if a little guarded) I think I will stick with them. They are already monitoring at least a couple of patients on generics, so I will get onto one of the nursing staff on Monday and give her the lowdown. I reckon your suggestion about locating HIV docs in the gay community is a good one, you’re right they often see HIV/HCV infected patients concurrently and are a bit more proactive all round.

    Will see how it goes with the hospital…and the meds are a fair way off yet. Cheers for your reply mate :)


    GT1a since 1988, diagnosed 1990
    F0, tx naive
    VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
    Started Mesochem sof/dac 12 weeks 01/01/2016
    11/02/2016 – 6 weeks UNDETECTED
    AST 26
    ALT 26

    #3374
    Avatar photoemilio
    • Guardian Angel
    • ★★★★★
    @emilio

    Hi Zhuk

    While my GP is James I don’t expect too many visits re monitoring it’s really about pathology referrals for me however we do chat broadly about tx, the site, buyers etc. My view is that we all know enough about the disease to realise if something does go pear shaped where we should get help. So I take my meds, minimise the sides if any and know your clear date (within a week) to to determine 12, extension or adding addition ammunition. Test at 12 weeks post tx and home free (hopefully). Bit like a hang gliding without a parachute lol, just the way I like it. Em

    #3376
    Avatar photoPaul-Jarman-facebook
    • Guardian Angel
    • ★★★★★
    @paul-jarman-facebook

    You Nailed it Emilio I think as most of us will have bugger all side effects except for a little insomnia some will of course get some sides, if so then maybe a GP or clinic visist would be advisable IMHO.

    cheers


    Two time relapser.

    SVR 4 achieved 12/16 at last
    SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

    GT 3 – about 28 yrs with HCV

    #3379
    Avatar photoemilio
    • Guardian Angel
    • ★★★★★
    @emilio

    Yep the insomnia slowly crept up on me. I guess im having 6 hours of broken sleep. I feel good dispite this and thinking theres a bit of good stuff in the meds. Energy levels not being affected by the lack of sleep. Em

    #3383
    Avatar photozhuk
    • Guardian Angel
    • ★★★★★
    @zhuk

    “Hang-gliding without a parachute” Haha I like that!

    Thanks Paul and emilio. Honestly yeah I think that is a pretty sound approach, I’m not expecting much if any real issues but if the hospital can do the necessary tests etc it saves me having to doctor-hunt for someone who is willing to take up the bat. I’ve also got a secondary condition which has suddenly appeared, which I’ve gotta find out if it would preclude starting treatment – and my current doc doesn’t seem to have nearly enough urgency on that IMO lol


    GT1a since 1988, diagnosed 1990
    F0, tx naive
    VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
    Started Mesochem sof/dac 12 weeks 01/01/2016
    11/02/2016 – 6 weeks UNDETECTED
    AST 26
    ALT 26

    #3513
    Avatar photomgalbrai
    • Guardian Angel
    • ★★★★★
    @mgalbrai

    Hi,
    I am in the U.S. and have two docs monitoring my generic treatment-my local, long-time GP-who diagnosed me, and my GI, who has written me 3 scripts for HCV treatments , which she fought like hell to get approved for me, but were denied after exhausting the appeals process. When I told them my plan to import ditectly from Mesochem, the GI said fine, as long as she could monitor the tx. So my GP orders the blood work, checks it out and sends the results to my GI several hundred miles away. We did a pre test and will do a 4 week, 12 week,12 week post and 12 month post tests.
    Now, my GI said the tests were for two reasons:
    1. To see if the virus is being destroyed effectively
    2. See if these really new and really powerful drugs are having some strange impact on something else, like glucose or potatsium levels, for example-all those things they can check that have norms.
    That’s what they told me the monitoring was all about in MY situation: F-1, Tx naive, good health, vl-1.6 million, 62 yo.
    Good luck!
    Mike


    Curehcvnow@gmail.com
    http://forums.delphiforums.com/generichcvtx

    G 1a F-1
    Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
    11/17/15 4 wk lab ALT 17 AST 16 <15
    11/18/15 Started Harvoni
    12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
    1/14/16 Fin. Tx
    7/07/16 UND SVR 24

    #3544
    Avatar photosabrecat
    • Guardian Angel
    • ★★★★★
    @sabrecat

    Helo Zhuk,

    Royal Prince Alfred did good by me and I suppose a thank you to them for allowing me to live a while longer is in order here.

    Being a General Practitioner with all its expectations as to up to date medical knowledge is a big ask. One told me years ago that the main requirements for being one was to be reasonably bright and have a good memory. I don’t really know all the ins and outs of prescribing generics with specialists so I won’t comment.

    One thing though, when I went to my G.P. (yes life and melanoma checks goes on) and told him what I was doing, he described it as me “taking control of my health”. I agree and think it s better me do this than Gilead et al.

    Yours

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