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klhilde wrote:
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Wow … what a year it’s been.
…Hey Mike, Kevin, … yeah, I second that! What an amazing year!
I joined FixHepC just over a year ago somewhere in between you guys. But after getting treated and cured, I have been so busy with getting on with the rest of my life that I forgot my own FixHepC “birthday” (01-10-2015). Still check in from time to time, though…
What do you say we move all this to a “One Year Later” thread?
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).Here’s a report on the EPO decision in English from StatNews:
Seems like both sides are claiming a victory?
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).Just a reminder, the French Minister for Health, Marisol Touraine, said that “the time has come to renegotiate the price”, and promised that everyone in France with HCV would get treatment, starting in September 2016:
http://www.aidsmap.com/France-to-provide-universal-access-to-hepatitis-C-treatment/page/3060907/
Well, it is now October 3 and there is still no news of the promised announcement. Lets just hope its simply a case of “all bets are off” until the EPO decision?
Let’s also not forget that the WTO rules allow governments to issue a Compulsory Licence if necessary
https://www.wto.org/english/tratop_e/trips_e/public_health_faq_e.htm
Madame Tourisol, if the EPO will not do it, the world will be looking to France to end Gilead’s evil business strategy and make HEP-C treatments available to all.
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).Hi RHF,
Thank you for posting the link to the MdM patent opposition. Very interesting!
I know a bit about chemical formulae, but I am not a legal expert. Still, it looks like a strong challenge to me.
In simple words,
Gilead is not entitled to have a patent for sofosbuvir because all of the chemical knowledge and technology was previously published in the open academic literature. There is no inventive step.
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).Hi RHF,
Yes, the EPO web site says it is a public hearing in Munich. Anyone can attend on a “first-come, first-served basis”:
https://www.epo.org/applying/online-services/proceedings.html
More details here:
https://register.epo.org/application?number=EP08732818&tab=main
Some background:
http://www.firstwordpharma.com/node/1263122#axzz3RPviNrRF
http://www.lemonde.fr/planete/article/2015/02/10/conflit-autour-d-un-traitement-contre-l-hepatite-c_4573300_3244.html (French)Cheers,
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).According to this article, the patent challenge on sofosbuvir that was filed by Médecins du Monde back in Feb 2015 will be considered by the European Patent Office next week (4,5 October 2016):
Here’s hoping…
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).16 September 2016 at 1:49 am in reply to: NHS funding cuts forcing people to buy medicine through Facebook #23001Thanks Tommy,
It seems to me like this article from the British “Independent” newspaper should go into the myth-busting thread, but I see that some people are having second thoughts about myth-busting. Maybe instead of “myth-busting” we should call it “crap-busting”.
In the English language, “crap” has long been associated with the kind of solid waste material that goes down a toilet drain, thanks to the inventor of the first water-flushable toilet, a Mr Thomas Crapper:
https://en.wikipedia.org/wiki/Thomas_Crapper
But according to that Wiki article the word has a much longer history than that. Anyway, crap is crap even if it comes from a respectable British newspaper.
Crap:
“However, experts warn that people who do so have no way of knowing if the medicine which arrives is real. They have cautioned the drugs could be placebo or “empty” pills, or in a worst case scenario be actively dangerous.”
Fact:
The published and peer-reviewed results of the REDEMPTION trials show that generics work just as well as the branded products. http://hepcasia.com/wp-content/uploads/2015/03/Freeman_et_al-2016-Liver_International.pdf
As far as I can remember, there have been no cases reported on FixHepC of people buying placebo or fake medication through any of the listed FixHepC supply sources.
Crap:
“In addition, while doctors are able to monitor patients’ health during normal prescriptions, they cannot monitor patients who order pills in this way to the same extent, prompting concerns that they are vulnerable if an adverse reaction occurs.”
Fact:
Doctors can order any form of monitoring they choose or they can refer to a specialist if it is beyond their capability. However, for various reasons which seem morally indefensible, it has been reported on FixHepC that some doctors are afraid to prescribe generics and some refuse to monitor patients who have been prescribed generics by another doctor.
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).Hi sb,
Usually after generic (or branded) HCV treatment, the trend in ALT/AST levels is almost always downward, but some fluctuation is normal (I can report the same thing myself).
As for consumption of cannabinoids, my first advice would be don’t worry about it unless you are having adverse side effects.
After HCV, the next biggest daily threat to the liver is alcohol. But moderate consumption is probably perfectly OK (I have personally reported quite a bit on this here – bottom line for me: absolutely no problem).
The only way be sure about what is happening with the virus (if any), is to get another PCR RNA test to confirm its still undetected.
The odds are highly in your favour on still being UND.
If you are UND but your liver enzyme levels are fluctuating enormously, then it would be worth getting a proper medical opinion. Otherwise, don’t sweat it. Since you are “only” at about 8 weeks of TX, it will take several months for your virus-free liver to really re-build and settle down to more normal enzyme levels.
Cheers,
Oor Wullie
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).Hi Fixhepcnow,
Speaking as an expat Brit, I can really understand what you’re saying about Brexit… meaning what the f*** has just happened in the UK??
I’ve been on FixHepC since about October last year, and even though I have my own views on how to run the world (put people like me or Dr James in charge
) I have tried very hard to be politics-neutral here. After all, we’re all here to fight that little bastard monster called Hepatitis C that cares not for countries or politics or skin colour or ethnic origin or what it might say in your passport…Anyway, I cannot offer any particular advice for your own situation. The only thing I can say from my own experience is that this bastard virus wears people down. It is not simply a question of what level of fibrosis you are at or what level of AST or ALT your liver might be churning out. I am sure that the eventual fatigue and sense of weakness and powerlessness that comes from years of the virus slowly eating away at your body takes its toll on all of us.
But since you are now virus free, just remember you will get stronger each day, both mentally and physically. And even if the world gets crazier each day, you are getting stronger faster.
And even if it was a bad idea to give old-age pensioners who have never been abroad the right to vote, there are still enough sane people left in this world. And there are lots of Brits living in europe and lots of europeans living in the UK. So I’m pretty sure things will work out OK in the end and nobody will be thrown out of the UK.
And if the worst comes to the worst, you can always move to Scotland or Ireland (only kidding)…
Cheers,
Oor Wullie
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).Bonjour Djam, et bienvenue.
Si vous avez encore le virus (et pas seuelement les anticorps), il serait une bonne idée d’obtenir un traitement moderne et sans intérferon. C’est tout à fait possible d’obtenir un nouvel traitement générique aujourd’hui.
C’est juste nécessaire de savoir le génotype et d’obtenir un ordonnance d’un medécin. Si vous avez été traité en 2008, je suppose que vous savez déjà le géntype?
Comme Chapel a dit, la France a promis à donner un traitement a tout le monde, mais il reste un doute sur le temps d’attente pour les gens avec un niveau de la fibrose moins sévère.
Si le prix d’environ 1000 euro ne vous gène pas, mon avis est de chercher un traitement tout de suite. Vous pouvez contacter help@fixhepc.com avec une copie de votre dernier bilan de sange pour lancer le processus.
Bon courage!
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).diplomat wrote:Hi all
I’ve had Hep C Genotype 1b since at least the early 90s. I had my round with interferon and ribavirin in 2008 and lost . I started Twinvir treatment on 20 January, and finished on 12 April. 11 weeks post EOT I’m still undetected and I have cause for confidence that I’m finally rid of the virus.
30.12.2015 13.04.2016 27.04.2016 02.07.2016
ALT 257 99.4 62.4 49.7
AST 257.1 87.3 49.8 47.1
GGT NA 75 NA 57
Platelet 77 100 87 105
Prothrombin 15.6 16.4 15.9 15.6
INR 1.16 1.25 1.29 1.26
VL 1980000 UND UND UNDMy thanks goes to Leon and the good people at Incept Pharmaceuticals in Bangldesh, as well as to the UAE MoH for permitting very easy importation of the Twinvir I required to treat the virus.
Diplomat
PS sorry about the formatting
Great news diplomat! If you are UND, I bet you don’t care about formatting tables in the forum. But for anyone else who wants to try, here is one way to do it:
You need to use tags like this:
[ table]
[ tr]
[ td]Date[ /td] [ td] 30.12.2015[ /td] [ td]13.04.2016[ /td] [ td] 27.04.2016[ /td] [ td]02.07.2016[ /td]
[ tr][ tr]
[ td]ALT[ /td] [ td] 257[ /td] [ td]99.4[ /td] [ td] 66.2[ /td] [ td]49.7[ /td]
[ /tr][ tr]
[ td]AST[ /td] [ td] 257.1[ /td] [ td]87.3[ /td] [ td] 49.8[ /td] [ td]47.1[ /td]
[ /tr][ tr]
[ td]GGT[ /td] [ td] NA[ /td] [ td]75[ /td] [ td] NA[ /td] [ td]57[ /td]
[ /tr][ tr]
[ td]VL[ /td] [ td] 1980000[ /td] [ td]UND[ /td] [ td] UND[ /td] [ td]UND[ /td]
[ /tr][ /table]
But do NOT put a space after the opening square brackets like I did. This was only to show the tags, not the result.
Each “tr” means start a new row of the table. Each “/tr” means finish the row. Each “td” means “table data”, i.e. text to put in the current column of the table”. Each “/td” marks the end of the text for that column in the current row. And of course “table” means start a new table, and “/table” means finish formatting the table.
If you leave out the spaces inside the square brackets, you will get this:
[table]
Date 30.12.2015 13.04.2016 27.04.2016 02.07.2016 [tr]
[tr]
ALT 257 99.4 66.2 49.7 AST 257.1 87.3 49.8 47.1 GGT NA 75 NA 57 VL 1980000 UND UND UND
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).Hi Fitz,
I am absolutely NOT a fan of Bill Gates or how he uses his money. He is rich and famous, and so he gets a lot of media attention. I detest the way he uses this access to media to promote is personal half-baked theories on how to make the world a better place. Here is my favourite example of this:
I totally agree there are many, many, many better ways that people like Gates and Soros and Buffet could use their vast wealth. But they are blinded by their own success and they will do nothing to question or change the system that created them.
Arghhh!!!
I’m gonna stop here, and think some more about how to get more doctors on board instead.
Cheers,
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).rememberdecember wrote:I think it’s good to have this discussion, but it needs to be a balanced thread. A newcomer may very well read this and think it’s OK to drink alcohol on/soon after treatment. And that person may be struggling with addiction/early recovery, which changes the whole context of the debate.
This is what the HepC Trust in the UK has to say on the topic.
Hi rememberdecember,
Everyone knows (I hope) that it is absolutely not a good idea to drink alcohol if you have hepatitis C. This most definitely includes me. I have consumed alcohol for most of my life. I have probably had hepatitis C for most of my life. It was not a good combination. My problem was, I was fully aware of the first one. I did not know until last year about the second one.
So I am posting about my alcohol consumption mainly to make the point that the bug is worse than the booze.
Another reason is to try to de-fuse the idea alcohol consumption should be a criterion for denying treatment. This was often the case for several US insurers (and still is the case for some). Depending on one’s doctor, this may still be the case in some national health services like the UK.
If anyone has a problem with alcohol addiction, fixing the virus might very well be easier than fixing the addiction. Its just one or two pills a day with almost no side effects. In this context, getting rid of the virus should be the first step towards better health.
So my advice to anyone suffering from booze+HepC, or any doctor thinking about treatment options, is to hit the big one first.
I didn’t ever think that I was taking a gamble, but of course everyone should make their own decision based on what they know and how they feel. I’m just really glad that Dr James gave me the opportunity to knock out big one.
Here’s to sensible doctoring (cheers),
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).I have to agree with Bill Gates. The US pricing system is better than most of you hold a monopoly. In fact, I personally believe that the US pricing system is absolutely the best if you want to make seriously large amounts of money. With a net worth of some $86 billion, Bill Gates is very probably the richest person in the world:
http://www.therichest.com/celebnetworth/celebrity-business/tech-billionaire/bill-gates-net-worth/
I also remember the days when Microsoft World was something like $300 or more per licence. That’s not a bad price for someone who is sick and needs treatment. But that figure wasn’t the price for a medical treatment. It was the price that just about every business user on the planet had to pay!
Thankfully, we now have almost comparable software like OpenOffice, which is free-to-use open source software.
Let’s say OpenOffice is “generic” software. We now take it for granted that good generic software like OpenOffice is freely available, and that Microsoft has to find other ways to make money (The Cloud, etc.).
But how long did it take to get to that point? 15 years? More?
OK, Bill Gates has given a heck of a lot of money through the Bill & Melinda Gates Foundation ($3.8 billion in 2014 and about $28 billion in total according to the above link) help tackle global health issues and third world diseases such as HIV, and Malaria:
http://www.gatesfoundation.org/Who-We-Are/Resources-and-Media/Annual-Reports/Annual-Report-2014
So you could say that Bill Gates is a classic case of “get rich, and then become a philanthropist”. Even if we don’t particularly like they way they that someone like Bill Gates has made his money, the world is never short of philanthropists.
But we are not talking about software here. People are dying or living in agonies from Hep-C while the price is high and fortunes are being made.
How long does the world have to wait until the big bosses at Gilead decide they have made enough money to become philanthropists? 15 years? More? Will they ever do what Bill Gates is doing? I doubt it.
When it comes to Gilead and Big Pharma, the world cannot wait for the next generation of potential philanthropists to make their fortunes first.
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).I have told everyone I know that I
haveused to have HCV. I have never had a negative reaction. But maybe I am lucky in that most of the people I deal with are polite and well educated.Only two other people ever asked me directly how I got it. My answer was I really don’t know for sure – I am not a drug addict (smoothly avoiding any mention of a youthful past), I never had a blood transfusion, or a surgical operation, and I never had a tattoo. I always end by saying these are probably the most common ways of catching it, but the real problem today is that it is in the population.
Most people are amazed to learn that over 600,000 people in the UK have it, and over 3,000,000 in the USA.
Surely, all those people cannot be drug addicts or victims of tainted blood transfusions??
Anyway, as part of my story about HCV, I also tell everyone about FixHepC. Yesterday, one of my work colleagues phoned me to ask how to get in touch with FixHepC because a business client of his has HCV. Even though it is only one more person saved, that little phone call really made my day.
————-
This has been posted previously, but here are some estimated numbers around the world:
http://www.hepcoalition.org/IMG/pdf/countries_excluded_gilead_s_vl.pdf
Its in the population and everyone deserves to be treated.
Knowledge is power. Knowledge cures people. Share the power to cure people in whatever way you can.
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3). -
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