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  • in reply to: script, prescription questions #2049
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie
    Sirchinenge wrote:

    Hi Jolie,

    If you’re taking 90 days the script should be written as Sob 90 X 1 per day same with Dac
    the exact names of the Meds are on the consent form.

    I’ll ask Dr Freeman to weigh in on the NHS script and using Generics I don’t think the latter
    is necessary.

    In the case of China the APIS come into Australia for testing and encapsulating.

    I think all your points are valid I’ll have a chat with Dr Freeman about how it can be clarified on the website.

    hi there Sirchinenge,
    I was wondering if you had a chance of any update on the subject?

    Maybe it is a good idea to just attach a picture of a script that is acceptable for DR James & how it is written./ worded.
    I might be seeing just a private GP, so not liver specialist for that script, so I imagine he might want to know what to write there, as many UK GP’s don’t know much about HCV, never mind about what the latest DAA are called, etc.

    PS.
    Still no luck here with private script but got an appointment in 2 weeks time to see someone else.


    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.

    in reply to: compounding Sofosbivur (& Daclatasvir) by oneself #2048
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    hi guys/girls,

    I thought if you get the meds via the Buyers Club they will encapsulate & test the meds for you for a small fee,
    or am I missing something here ?


    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.

    in reply to: Resistance and Treatment Failure – Mechanisms #1992
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie
    ”James-Freeman-facebook” wrote:

    Hello Jolie,

    I will start this with a disclaimer – my experience with Hep C the new DAAs only goes back to March, and the entire world’s experience is really only a couple of years. Data is lacking and the margins of error in the encouraging trial data is large.

    First the guidelines say 12 weeks Sof+Dac is appropriate for you.

    Now let’s consider some hypotheticals.

    Fibrosis is not “you have cirrhosis” or “you don’t” but our guidelines deal with the issue of fibrosis in that way because of the need to group people to get statistically meaningful numbers. We know that longer 24 week treatment is often recommended in the context of a high level of fibrosis, but why is this?

    My working model goes like this. Fibrotic tissue has a very poor blood supply, therefore getting medications into fibrotic areas is harder. You might imagine fibrosis as like the walls of a castle protecting the areas inside. Fibrosis is a spectrum. You might also imagine that F4 represents strong castle walls made of bricks and F1 represents weak walls, like the straw house the little pig made to hide from the wolf.

    Now consider that for an antibiotic/antiviral to work we need to reach what’s called the MIC (Minimum Inhibitory Concentration) – below this level it does not work, above this level it works. Like fibrosis this is a spectrum.

    Now imagine to kill you I have to make you wet with rain. If I send you out in the rain stark naked it will not take long (low fibrosis), and if it’s raining heavily (high doses) it won’t take long either.

    Now imagine I put some clothes on you. Now it’s going to take longer to get you wringing wet. This is like mild fibrosis.

    Now imagine I put a cheap spray jacket on you. Now it’s going to take longer again and this is like having higher fibrosis.

    Now imagine you have a Gortex Jacket. This keeps you dry, but over time water leaks in through the cuffs, around the neck. This is like cirrhosis.

    So you could intuit that the optimal treatment times might really look like (total speculation)

    F0 8 weeks
    F1 12 weeks
    F2 16 weeks
    F3 20 weeks
    F4 24 weeks

    Now I just pulled those numbers out of my ear, but I hope you can see what I’m saying. More fibrosis probably needs more treatment and a binary division < F4 = 12 weeks and F4 = 24 weeks does not make a huge degree of logical sense.
    Now when we look at treatment duration we know that it's too long.

    It's supposed to be too long because we can't know exactly when to stop.

    All we can ever know is that we probably stopped a little early if it comes back. Unfortunately this knowledge is only available in retrospect.

    So moving on to Government economics. The goal is not maximal cure rates, it is maximal cure rate PER DOLLAR SPENT.

    Consider

    12 weeks treatment $60,000 (so 8 weeks is $40,000)
    Cure rate @ 12 weeks 95%
    Cure rate @ 8 weeks 90%

    Take a group of 100 patients.

    8 weeks treatment will cost $4,000,000 for 90 cures = $44,444 per cure

    12 weeks treatment will cost $6,000,000 for 95 cures = $63,157 per cure

    Let's assume that we can retreat with 24 weeks @120,000

    In the 8 week group that costs another $1,200,000 and sees only one patient not at cure. $5,200,000 for 99 cures = $52,525 per cure

    In the 12 week group that costs another $600,000 and sees only 1/2 a patient not at cure. $6,600,000 for 99.5 cures = $66,331 per cure

    So the shorter treatment time, although it does not provide the best cure rate is 25% cheaper per cure, even with retreatment.

    If you were planning to spend billions on treatment then 25% is a huge number.

    When politicians talk about making hard decisions these are the sort of decisions they are talking about.

    Thank you for this,
    I always had a question about the fixed duration of the tx being either 12 weeks or 24 weeks, why not 16 weeks ? or 18? or 21? so your explanation makes a great sense to me, although I too am not a Hepatologist.

    Maybe it has to do with the size of packagings? that they are in packets of 12??? so you can have either 1 or 2 packets ?
    But how a size of packaging can determine the length of treatment ?? that's silly, still why 12 or 24 but not 18-21 weeks??

    I think adding Riba to the mix would not add anything from what I researched so far including Dr Foster's theory that Riba in tx experienced patients might actually be contra indicated due to possible resistance.

    Yes, I get that economic perspective for rationing the tx, piety that human beings, their health & well being is so low on the list of priorities for our Western Gov. political agenda's & very low on the list of priorities for Western Pharma's, where only the highest profit & keeping the shareholders happy is the no1 priority.


    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.

    in reply to: Declatasvir – available online, is it safe? #1991
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie
    LondonGirl wrote:

    Not sure I’m up to flying there myself I must say, but good to know people are

    Hi LG,
    I quickly looked at the possibility, from the UK it is a 12 hour direct flight form London to Dhakha, cost around £500 + cost of travelling to Heathrow.
    In my case I’d need to take a hotel in Dhakka, as the fights are mostly overnight, so that’s extra ££££.

    Like you, am happy for others but not feeling up to it myself at all due to Fatigue, insomnia, etc. I cannot even get to London which is only less then an hour away, never mind Dhakka.


    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.

    in reply to: Side effects for sofosbuvir/Daclatasvir combo. #1989
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    yes total discrimination! If I was HCV virus I would be seriously pissed off !

    On some level this is one of the “nicest” diseases you can have…. from a certain point of view:

    Firstly we hardly have any symptoms for the first 30 years of the infection as compared to for example with Ebola or even a simple flu viruses,
    We don’t cough, sneeze, we don’t have open oozing smelly sores, we don’t fall over, need crutches or are wheelchair bound, etc. it’s very difficult to get someone else infected except via direct blood,
    The virus is “well secure” inside our blood cells.

    So what the fuss? why the discrimination? I really don’t get it,
    Why is one virus worse then the next virus??

    I think the people sneezing & coughing in public spaces like supermarkets without using the hankie pose much greater danger to general public then us, yet a flu virus don’t have such a bad reputation, yet every year flu viruses kill many thousands of people globally, much more then the HCV does.

    Virus is a virus, it’s a living entity, it’s want to eat, rest & procreate just as any other species do….including humans.
    We have hundreds of different viruses & bacterias living inside our gut in perfect symbioses, so why discriminate against this bugger?

    “junkie disease” common?, I don’t have a clue when & how I got infected, many people don’t,

    It’s irrational! but then many people are, in my experience, including well educated docs.

    I think that irrationality & prejudice needs to be cured! but sadly there is no medicine for that.


    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.

    in reply to: Declatasvir – available online, is it safe? #1987
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie
    Alsdad wrote:

    So, in theory, someone who has mates in their local Bangladeshi community could look into getting the stuff delivered to a mate’s relative in Bangladesh and then that relative could ship it to your home country as a personal use medicine?

    Hi Al,
    Not only that, people are apparently already flying to Bangladesh Dhakka & with their western doc script in hand & are buying directly from the Pharma manufacturers there – you probably read the last entries on medhelp forum “Harvoni form India” thread ?

    Amazing! & it looks like it was a woman who did the one day return trip to Dhakka & back & brought her meds ( Lesovir-C) :

    “Overnight trip. Flew in to Dhaka, went to Beximco, bought product, had dinner, slept and flew out. 24 hour turnaround.”

    So it seems Bangladesh generics Lesovir C & Declasavir are available if you feel up to a trip to Dhakka & have your script in hand.


    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.

    in reply to: Hello from UK, need help please #1940
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie
    emilio wrote:

    Yeah we’ve adopted Jolie, we need him on enemy lines. Em

    Hi Emilio!

    As London Girl said I’m a women! the last time I looked.
    You’re free to adopt me as long as you’re from sunny Australia …not sure about the “enemy lines” , don’t like warfare :lol:

    London Girl,
    Reading between the lines I think Emilio is referring to my post regarding Sirchinenge being Irish rather then Australian ( as I though he was), but could be wrong here :blink:


    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.

    in reply to: Hello from UK, need help please #1938
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    hello & Welcome
    I’m also only a few days old on this forum.

    There are a few of us here Geno3 with exactly the same treatment history of Relapse after the old Peg/Riba tx.

    It is disgraceful that due to NHS, NICE & the UK government incompetence we have no access to TX when ill, after paying lifetime of taxes & NI.
    Instead we’re forced to look for help to countries that are much poorer then the West, if we wish to treat now & not wait for cirrhosis.
    This is very sad state of affairs & I feel seriously let down by the UK governments, NHS managers & their incompetence.

    Good luck with the appointment with Doc Freeman, :)


    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.

    in reply to: Hello from UK, need help please #1867
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie
    LondonGirl wrote:

    Hi Jolie, Could you message me the London contact please? It’s a lot closer to home! I did have a London contact way back, but wasn’t sure if he was still able to help. If anyone has the details, I’d be very grateful if you could pass them on via chat.
    Thanks

    hi LG

    I just passed you the contact via chat, hope you got it OK,or if any problems let me know & I’ll re-chat it,


    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.

    in reply to: Hello from UK, need help please #1864
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    hi,
    Yes, I tried one of them & he refused, but will try another.
    I also got another lead just now from here for a Doc in London,
    Thanks!


    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.

    in reply to: Hello from UK, need help please #1863
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie
    Sirchinenge wrote:

    Some posters have bought from both Greg and China direct and neither have had issues with customs.

    Those buying from China received their drugs as a API( Powder form) the orders from India via Greg
    received theirs in pill form.

    Anyone buying from The Buyers Club will be mailed encapsulated product I presume they will come with
    documentation that is in fact acceptable to Customs.

    I’ve sent in my paperwork and payment to The Buyers Club I am having it shipped to London Ill update when it
    in the UK, I’m in Ireland we don’t allow drugs shipped via the post you can import on your person for personal use.

    In terms of confusion. Firstly, The Buyers Club is new they are finding their feet with this in terms of
    sending drugs on our behalf within the legal frame work they have to work in.

    Secondly, as new suppliers come on stream, Dr Freeman is having those products tested, its my belief,
    at some point you will be able to buy direct from those generic suppliers.

    Hi,
    Thanks again for your help,
    I had no idea you were from Ireland & are awaiting your medicines, for some reason I though you were from Australia – being moderator, etc. & here you’re almost next door.

    Are you getting all your medicines from China via the club?, if you don’t mind me asking?


    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.

    in reply to: Resistance and Treatment Failure – Mechanisms #1862
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    Dr Freeman,
    I have a question concerning failed treatment & what would be your advise to someone in my situation?

    10 years ago I went through the old Peg Interferon/ Riba tx for 24 weeks, as Geno 3. I cleared the virus after first 4 weeks & was cleared all during the tx. 1 month after I finish the tx virus returned/ relapse.

    I did not bother to treat since as was waiting for the new DAA drugs to come along, as the old tx was so horrendous & with so many side effects I’d never want to repeat it.

    Fast forward to now & am contemplating the generic DAA tx of Sofo/ Dac for 24 weeks & not include the Riba after listening to Prof. G. Foster video concerning the possible “resistance” for people who had Riba in the past, he suggested not to include it with the new DAA.

    My fibroscan was 8.7 PKA in July 2015 ( 8.1 in 2005 – so not much damage in 10 years, I expected more), so probably borderline F2/F3 ?? – do you think I could get away with 12 weeks tx Sof/ Dac or better 24 weeks ? without the Riba? – due to possible “Riba-resistance” ?
    Other bloods again reasonable not showing any signs of advanced liver disease – so am not able to get any tx in the UK.

    Here in the UK patients are still being offered Peg & Riba for Geno 3, some get Peg/ Riba/Sof for 12 weeks if lucky, but waiting lists are very long.
    What would be your advise for someone in my situation?

    Many thanks in advance,

    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.

    in reply to: Science vs HCV #1859
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    Congratulations Chester!

    where did you get your generics from? India or China?

    I’d love to treat now, unfortunately here in the UK am not able to find any doc close to where I live to give me a script!
    You guys in Australia are doing really great ! wish it was the same here.


    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.

    in reply to: Hello from UK, need help please #1858
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    Thanks everyone who responded,
    I checked the route to Manchester from where I live & it is just not doable for me due to not feeling well enough to spend 10 hours round trip travelling to & back from Manchester. The costs are also prohibitive, some prices I was quoted are in the excess of £150 (!).
    If I was travelling form London that would be OK, but not form a little village 30 minutes drive from Cambridge.

    Anyway, I keep searching for a private Doc,

    I also have another question,
    Did anyone out there in the UK imported the meds via Buyers Club already ?
    Do the meds both Sofo & Dac come as API’s & then the powder encapsulated & put into little bags ?

    That has got me a bit worried concerning the UK Customs, as without a proper packaging they will just look like drugs & can be held of destroyed.
    I understand with the generic drugs you do get them in boxes that have a lot of info on it, etc but not the API’s.

    Did anyone from the UK actually had any problems with the UK Customs etc?

    Is there any chance to be able to buy generic drugs from India or Bangladesh via this Buying Club ? or is this only from China API’s ?

    I feel a bit lost with all the info, but then again not feeling too bright in the last few days,


    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.

    in reply to: Would you like to be part of a social movement? #1756
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    hi,
    I had a little pick into your forum,
    well done !
    I really hope none will shut this one down, I don’t think we’re are such a threat to big pharma, or are we???


    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.

Viewing 15 posts - 106 through 120 (of 126 total)