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Thanks, I will watch that.
I think the Sunday program starts at 7:00pm – http://tvnz.co.nz/tv-guide
GT1 F4 compensated, I/F non-responder 1997
@2015-11-06 VL 3.5 x 10^6, started Twinvir
@2015-12-31 VL:UND
@2016-01-29 started 2nd 12 weeks of Twinvir
@2016-03-01 ALT=42 AST=42, other LFT in normal rangeI’m at 18.5 weeks of Twinvir.
I’ve been more tired than before I started Tx almost all the time.
I fall asleep in a chair most evenings.
Need 1 or 2 rest days after exercise.
Bit worried about ALT and AST still being elevated
GT1 F4 compensated, I/F non-responder 1997
@2015-11-06 VL 3.5 x 10^6, started Twinvir
@2015-12-31 VL:UND
@2016-01-29 started 2nd 12 weeks of Twinvir
@2016-03-01 ALT=42 AST=42, other LFT in normal rangeDr Freeman says Prof Gane is one of the good guys and I am trying to respect that but in my view the bias from the Hepatitis Foundation goes beyond being cautious and conservative.
From http://www.hepatitisfoundation.org.nz/index.php/events/personal-importation-hepatitis-c-medicines-position-statement-hepatitis-foundation-new-zealand/:
“are looking at importing generic versions of these drugs from overseas. Although this is not strictly illegal provided that that person has a prescription from a registered medical practitioner”
To which I respond “yes your bias does look huge in that, trying changing into ‘importing generic versions of drugs from overseas is legal as long as you have a prescription’
It goes on to say “HFNZ would recommend that anyone considering importing generic drugs exercises caution and discusses the benefits and potential pitfalls with their hepatitis specialist prior to importation”
To which I respond “Good luck with that, my hepatitis specialist is playing the role of innocent bystander while FixHepC provided all the information and my GP does the work”
GT1 F4 compensated, I/F non-responder 1997
@2015-11-06 VL 3.5 x 10^6, started Twinvir
@2015-12-31 VL:UND
@2016-01-29 started 2nd 12 weeks of Twinvir
@2016-03-01 ALT=42 AST=42, other LFT in normal rangeThanks for reporting the interview.
I listened to it and was intending to. Now I don’t have to.
The NZ Hepatitis Foundation has posted similar stuff on it’s website recently:
http://www.hepatitisfoundation.org.nz/index.php/events/personal-importation-hepatitis-c-medicines-position-statement-hepatitis-foundation-new-zealand/
I am curious about the concern raised about non-licensed Harvoni equivalents which many of us are taking.
Is this Gilead friendly fear-mongering or is there any real evidence?
In an email to me from Monkmed a possibly related concern was raised:
“Twinvir is not licensed and lot of people reporting side effects. We only ship GILEAD licensed products like HepcVir L and Hepcinat LP”
GT1 F4 compensated, I/F non-responder 1997
@2015-11-06 VL 3.5 x 10^6, started Twinvir
@2015-12-31 VL:UND
@2016-01-29 started 2nd 12 weeks of Twinvir
@2016-03-01 ALT=42 AST=42, other LFT in normal rangeHow about N-Acetyl Cysteine (NAC)?
It is also a glutathione precursor.
I stopped taking it a while back when I didn’t notice any improvement but now that I’m on Twinvir it might help.
I’ve still got several large unexpired bottles
GT1 F4 compensated, I/F non-responder 1997
@2015-11-06 VL 3.5 x 10^6, started Twinvir
@2015-12-31 VL:UND
@2016-01-29 started 2nd 12 weeks of Twinvir
@2016-03-01 ALT=42 AST=42, other LFT in normal rangeI agree that more options for previous treatment might be useful.
Some components of previous treatments may affect the recommendation due to resistance.
I was unsuccessfully treated with un-pegylated interferon alone in 1997.
GT1 F4 compensated, I/F non-responder 1997
@2015-11-06 VL 3.5 x 10^6, started Twinvir
@2015-12-31 VL:UND
@2016-01-29 started 2nd 12 weeks of Twinvir
@2016-03-01 ALT=42 AST=42, other LFT in normal rangeIt appears that you can get Ribavirin in New Zealand with just a GP prescription but it is expensive.
I tried 3 Pharmacists, one didn’t get back to me, one could get Riba + Peg-IF at NZ$2200 per month, one could get Riba at NZ$1300 per month.
It is much cheaper to import it.
GT1 F4 compensated, I/F non-responder 1997
@2015-11-06 VL 3.5 x 10^6, started Twinvir
@2015-12-31 VL:UND
@2016-01-29 started 2nd 12 weeks of Twinvir
@2016-03-01 ALT=42 AST=42, other LFT in normal rangeThe exact wording on the prescription from my GP was:
Ledipasvir-Sofosbuvir caps
Sig: 1 cap, Once Daily
Mitte: 90 cap
(Generic Substitution Allowed)
GT1 F4 compensated, I/F non-responder 1997
@2015-11-06 VL 3.5 x 10^6, started Twinvir
@2015-12-31 VL:UND
@2016-01-29 started 2nd 12 weeks of Twinvir
@2016-03-01 ALT=42 AST=42, other LFT in normal rangeMy package of Twinvir arrived today via Fedex from Bangladesh.
It was sent by a business contact of mine in Bangladesh.
If I was doing it again I would first try Rasel Rahman at Incepta.
The package arrived in Auckland on the 26th of October and then spent time with Customs and Medsafe before being released.
Customs and Medsafe were helpful when I rang them and I emailed a copy of the prescription from my GP to Medsafe -medclearance@moh.govt.nz which was necessary to get it released.
A Medsafe doctor rang my GP to warn her of the potential risk she faced but she didn’t back down.
I am a patient of the Gastroenterology Department of a major DHB but my specialist did not respond to my requests for a prescription and have not yet responded about monitoring.
I gave my GP a copy of the GP’s Cheat Sheet from this site and I got my viral load test done today and will have the other recommended tests in 4 weeks time.
I took the first tablet this morning. So far so good
GT1 F4 compensated, I/F non-responder 1997
@2015-11-06 VL 3.5 x 10^6, started Twinvir
@2015-12-31 VL:UND
@2016-01-29 started 2nd 12 weeks of Twinvir
@2016-03-01 ALT=42 AST=42, other LFT in normal rangeI think Eid ends next Thursday night.
GT1 F4 compensated, I/F non-responder 1997
@2015-11-06 VL 3.5 x 10^6, started Twinvir
@2015-12-31 VL:UND
@2016-01-29 started 2nd 12 weeks of Twinvir
@2016-03-01 ALT=42 AST=42, other LFT in normal rangeVery little happens in Bangladesh during Eid which has just started.
I have a contact in Bangladesh who is looking into Incepta for me.
He said he would get back to me after Eid.
GT1 F4 compensated, I/F non-responder 1997
@2015-11-06 VL 3.5 x 10^6, started Twinvir
@2015-12-31 VL:UND
@2016-01-29 started 2nd 12 weeks of Twinvir
@2016-03-01 ALT=42 AST=42, other LFT in normal range -
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