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  • in reply to: EASL Presentation – Language translators wanted #17308
    Suzy-Cox-facebook
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    • Acolyte
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    @suzy-cox-facebook

    Powerpoint in french

    HCVgenericsproject_ppt_FRENCH.ppt

    and illustrated presentation, useful to have the pics in the text, but sorry the mise en page isn’t as perfect as I’d have liked.

    dr-freeman_illustrated_presentation_FRANCAIS.pdf

    recording tomorrow…


    Genotype 1a since 1973, f1-2, treatment naive, VL 6,56 log on 05/08/15; co-infection hepB (occult). Started 12 wks Twinvir on 17th march 2016.

    in reply to: any one else have a co-infection with HVB? #17216
    Suzy-Cox-facebook
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    • Acolyte
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    @suzy-cox-facebook

    I think you all may be interested to know that the European Commission has ordered the manufacturers of Label DAAs to do Risk Assessment on hvb/hvc patients, to see if the product information needs to be changed.

    This decision was made earlier this year.

    Here is the EU notice, and the list of questions that the PRAC wants answered.
    ema_referralnotice.pdf

    PRAC_listofquestions.pdf

    These files are only available in english!

    It may also interest (europeans) to know that one month later, ie mid-april, my gastro rang me at home to say that changes had occurred in (french) treatment qualification, and I now qualify for state-paid harvoni, which she will apply for.
    I have infact already started treatment with Twinvir via David Cowley in the UK on march 17th, but I didn’t say so; little surprise for her !

    I have support from a retired medical doctor, but no monitoring because of being off the Patient Pathway (parcours des soins)….
    I feel OK…

    best
    suzy


    Genotype 1a since 1973, f1-2, treatment naive, VL 6,56 log on 05/08/15; co-infection hepB (occult). Started 12 wks Twinvir on 17th march 2016.

    in reply to: EASL Presentation – Language translators wanted #17213
    Suzy-Cox-facebook
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    • Acolyte
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    @suzy-cox-facebook

    Now I’ve corrected the last typing errors, and tidied up the sub-headings; this really is the Final Version !

    Recording on tuesday or wednesday next week.

    Salut à tous et toutes !!!
    xxx
    dr-freeman_presentation_FRANCAIS-2.pdf


    Genotype 1a since 1973, f1-2, treatment naive, VL 6,56 log on 05/08/15; co-infection hepB (occult). Started 12 wks Twinvir on 17th march 2016.

    in reply to: EASL Presentation – Language translators wanted #17139
    Suzy-Cox-facebook
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    • Acolyte
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    @suzy-cox-facebook

    Here is the french version corrected; I have credited Dr Michel Busch for the translation.
    We will be recording him reading it sometime next week for the voice-over: do you have geeks your end to edit it in to the video?
    Or do you prefer we do it this end before uploading somewhere? (I have a youtube channel I could leave it on, for ex, if this is your favourite option). Please advise.

    Very best wishes,
    suzy
    dr-freeman_presentation_FRANCAIS.pdf

    Lets now see if I can make the file stick to the message…


    Genotype 1a since 1973, f1-2, treatment naive, VL 6,56 log on 05/08/15; co-infection hepB (occult). Started 12 wks Twinvir on 17th march 2016.

    in reply to: EASL Presentation – Language translators wanted #16869
    Suzy-Cox-facebook
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    • Acolyte
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    @suzy-cox-facebook

    OK :)


    Genotype 1a since 1973, f1-2, treatment naive, VL 6,56 log on 05/08/15; co-infection hepB (occult). Started 12 wks Twinvir on 17th march 2016.

    in reply to: EASL Presentation – Language translators wanted #16867
    Suzy-Cox-facebook
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    • Acolyte
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    @suzy-cox-facebook

    thanks for the pdf, I’ve forwarded it to a french dr friend for checking & will re- post the tweaked version asap, also will try the ppt presentation now I’ve got the hang but my software is old (office97).
    Do you have someone doing subtitles or overdubbing on the youtube vid?
    I could record my dr friend reading the french transcription, for example, and send as mp3 ( or other format)…well I think I could…let me know if its useful, I like to help get it out.
    very best
    suzy


    Genotype 1a since 1973, f1-2, treatment naive, VL 6,56 log on 05/08/15; co-infection hepB (occult). Started 12 wks Twinvir on 17th march 2016.

    in reply to: EASL Presentation – Language translators wanted #16844
    Suzy-Cox-facebook
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    • Acolyte
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    @suzy-cox-facebook

    french? here…its not ppt, its word (.doc)

    great stuff, thank you xxx

    HCVgenericsprojectpowerpoint-FINAL-2_FR.pdf


    Genotype 1a since 1973, f1-2, treatment naive, VL 6,56 log on 05/08/15; co-infection hepB (occult). Started 12 wks Twinvir on 17th march 2016.

    in reply to: any one else have a co-infection with HVB? #11275
    Suzy-Cox-facebook
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    • Acolyte
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    @suzy-cox-facebook

    Just a short report after seeing the hep dr, my tests are good, blood almost normal, even seems to be a little less fibrosis (I have stopped all alcohol). I complained about my joints & so on, and what if I got the magic pill myself? Hors Parcours, she isn’t allowed to follow me, although she did put viral charge vhc on the bottom of the next blood test (prescription dated for early july), also a scan. We exchanged a bit, the sort of price, how secure the source, I’m the first one to ask her about it, though she’s heard stuff in the staff room. I asked if there was any danger, and the hep B is quite clearly Not a problem at all, wasn’t even mentioned, what she actually said was: if I have an EMG and it can be shown that my aches&pains or neuropathy is due to the hvc, she would make the demand for harvoni, in 6 months time, herself. Also that if somehow magically I was virus-free during that time, I would still get routine follow-up afterwards.
    Well to fill in the time while I’m saving up my pennies, it’s back to the GP for me, get a letter for an EMG. If it shows that thing is due to hvc, I don’t think I shall wait at all.
    Bye for now, thank you all for being there,
    suzy #love


    Genotype 1a since 1973, f1-2, treatment naive, VL 6,56 log on 05/08/15; co-infection hepB (occult). Started 12 wks Twinvir on 17th march 2016.

    in reply to: any one else have a co-infection with HVB? #10674
    Suzy-Cox-facebook
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    • Acolyte
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    @suzy-cox-facebook

    Thanks again dr James, that’s all really very interesting and I feel much better prepared for my next appointment. #flower


    Genotype 1a since 1973, f1-2, treatment naive, VL 6,56 log on 05/08/15; co-infection hepB (occult). Started 12 wks Twinvir on 17th march 2016.

    in reply to: any one else have a co-infection with HVB? #10347
    Suzy-Cox-facebook
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    • Acolyte
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    Thank you dr James. I admit I’m foggy about the B, I always thought I was over it too.The latest results of 3/09/15 are positive for anticorps anti-HBs, 27 mU/m, and antigène HBs, 0,21, whatever that may mean. In the Conclusion it says; “sérologie Hepatite B en faveur d’une infection ancienne et guérie” that bit is great, then, “Réactivation toutefois possible en cas d’immunodépression sévère”.
    Do DAAs do immuno depressing, please?

    Really encouraging to hear from other co-infected, I’d been getting a little anxious. Many thanks also and best wishes.

    Thanks Vororo, the Eurostar is a very good idea indeed, but I have a little grand daughter to visit. too, so I will take a plane! #flower


    Genotype 1a since 1973, f1-2, treatment naive, VL 6,56 log on 05/08/15; co-infection hepB (occult). Started 12 wks Twinvir on 17th march 2016.

    in reply to: Peripheral Neuropathy ? Toes? #10099
    Suzy-Cox-facebook
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    • Acolyte
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    That’s the size of it, but a lot of my joint pain has gone now too, so I think the booze has had a lot to do with that, booze + hep bad mix.

    Dan, My Dr looked for cryoglobulines; I’m negative, so its not caused by the hvc.

    best wishes


    Genotype 1a since 1973, f1-2, treatment naive, VL 6,56 log on 05/08/15; co-infection hepB (occult). Started 12 wks Twinvir on 17th march 2016.

    in reply to: Peripheral Neuropathy ? Toes? #10039
    Suzy-Cox-facebook
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    @suzy-cox-facebook

    Hello Dan, I have peripheral neuropathy too, mine started about 3 yrs ago with tingling, fingers & toes. I had tingly fingers anyhow because of carpal tunnel syndrome, I’d given up going to the rhumatologue becoz the little hammers & cortisone, I had a bit of achilles tendon too, I thought it was all related. It doesn’t hurt, I found it not unpleasant really . It did get worse though, felt like bone pain or crawling in the tendons, spent a bit more time with the rhumato & bloodtesting before going to the hepato and now I’m all sorted, taking amitryptiline drops and still tingling slightly but not hurting. The hep dr has told me it can be caused by the virus, but mine isn’t, she can tell from the blood tests. Mine’s most likely alcohol abuse, though I’d like to think heavy trichlorethylene exposure might have contributed. She also said it won’t get better, but it might not get any worse now I’ve stopped alcohol. So keep your eye on it won’t you?. Best of luck.


    Genotype 1a since 1973, f1-2, treatment naive, VL 6,56 log on 05/08/15; co-infection hepB (occult). Started 12 wks Twinvir on 17th march 2016.

    in reply to: any one else have a co-infection with HVB? #10027
    Suzy-Cox-facebook
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    Hey thanks, all you who’ve messaged me while I ‘ve been typing my reply to Gaj, (it’s taken me nearly 3 hours, how did that happen?) I will check out the ladies corner, promise ! thank you xxx

    Gaj that’s really great, so it can be done but there’s missing information (says the Risk Management Plan).
    I especially liked the clinical trials links, they’re on the case then. I rather like the look of the one in Taiwan, Harvoni for the hcv & just watch the B to see what happens, just what I was thinking of…pity it’s not in France, and the results will take a while:

    Study Start Date: December 2015
    Estimated Study Completion Date: November 2018
    Estimated Primary Completion Date: January 2017 (Final data collection date for primary outcome measure)

    at best one whole year, plenty of time for many things to change. Risk management is it?

    long pause here while I put mine in order, risks hmm

    I’m up for it if I can have full support from the service that’s following me (thats Gastro-E at CHIVA in Foix, Ariège).
    There’s a risk they will prefer me to wait a bit longer.
    There’s a risk I might not want to! however,
    I co-habit peacefully with my viruses, much better anyway since I was diagnosed, stopped alcohol and got drops for the socks & gloves. I cope with the anorexia by throwing a large bowl of muesli at it every morning, enjoy desmodium & lemon juice, and spend most afternoon/evenings flat on my back with an excuse. I’m still really glad I haven’t got worse liver damage, and also that I haven’t got rhumatoid arthritis after all, which is what was thought before (rf = 274 last may). Probably I could wait a year or two no real problem but here’s a Big Risk;
    Will the source run dry in that time? I mean how long will G****d let it go on? they have a branch in France and could be working on that little loophole now, the one that permits importation into France (from UK for ex) on one’s person of 3 mths supply……. what’s the sell-by date on the packets, gang? I could keep them in the fridge, there’s plenty of room…

    I am jumping fences before I get to them, please excuse me.

    Thank you again for taking the trouble to pass on those links #flower .

    How long do you think they’d last in the fridge?


    Genotype 1a since 1973, f1-2, treatment naive, VL 6,56 log on 05/08/15; co-infection hepB (occult). Started 12 wks Twinvir on 17th march 2016.

    in reply to: any one else have a co-infection with HVB? #9920
    Suzy-Cox-facebook
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    Thank you Coral, it’s a huge comfort to know this site exists and that medication can be had safely and hassle-free. I see you are over halfway yourself, hope all is going really well, best wishes…

    I’ve hunted about a bit already, the original harvoni tests were done on hepC mono-infected patients, “there is no data” is what I see for co-infection C/B.

    My own hepB is fast asleep, but could awaken if immuno-depressed, it says so on the bloodtest result.
    I dont think sof/led works that way though, does it? thats the point of DAA, am I wrong? (I’ve watched the animation film, very good).

    To be honest I am expecting her to advise prudence and patient waiting …maybe my question should be “has anyone on the forum been refused treatment or been told to wait because of a hepB co-infection?”

    Any feedback on this before the next appt 4th feb would be much appreciated, I’ll let you know how it goes whatever.


    Genotype 1a since 1973, f1-2, treatment naive, VL 6,56 log on 05/08/15; co-infection hepB (occult). Started 12 wks Twinvir on 17th march 2016.

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