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Looking good there Radtek!
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
I was on Sof/Dac rather than with Sof/Led so maybe different. I spent several hours at a time in the sun over summer and didn’t notice any increased tendency to sunburn but I did make sure I used SPF30+ suncream at all times and didn’t spend the full day outside. I did notice my eyes seemed more sensitive to light but a good pair of polarised sunglasses and a hat helped with that.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Portugal eg agreed to treat ALL and have done so, in fairness to Gilead, they got the drugs at a highly reduced price and apparently 96% Portuguese HepC patients are now cured.
Err, not quite. Though I can see how the headlines may lead to that assumption.
The 96% is actually the SVR rate among those who have been treated. As at April 2016 at the Barcelona conference it was announced that 7,011 patients had been treated out ot approximately 13 thousand who were registered as hep c patients with their hospital clinics and therefore funded at the time that the government promised universal access. I’ve been unable to find the size of the Portuguese HCV population but assuming it is somewhere in line with other European countries then 1% of the population seems a reasonable estimate which would mean approx. 100,000 potential patients.
Certainly a good news story in that their government has promised to treat everyone at some point in the future but not quite there yet.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Hi Fitz,
Aussies are still here they just need to sleep occasionally.
The geoblocking only applies to three parts of the site that the TGA may consider to be advertising. The majority of the site and forum is still available to Australian members and guests for advice and support regarding HCV.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Hi LG,
Genotype 1a is more common in the US than in Europe where 1b is more prevalent.
For those with genotype 1a, clade 1 is more common in the US at roughly 1/2 of cases vs 1/4 of cases in Europe.
So yes, 1a clade 1 is represented in a greater proportion of patients in the US than in Europe.Q80k is a naturally occurring form of resistance to Simeprevir. In other words, it is present before the use of Simeprevir rather than being caused by it. It is present in clade 1 in 50% of cases but ‘never’ in clade 2.
But importantly for us it appears to be resistant to Simeprevir mostly when used with Peg/Riba.“In particular, Q80K does not seem to influence the activity of simeprevir when combined with sofosbuvir.” (P16 of full article)
So the study has picked up clear differences in the two clades that probably skewed SVR rates when Sim/Peg/Riba was used but probably wouldn’t effect retreatment with Sim/Sof and a NS5a inhibitor.
As they point out on page 18 there may be other differences too but these will require further study:
“Whether these different clades influence the response to other DAA-inhibiting HCV at different steps of its life cycle deserves further investigations.” (P1
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Welcome cheese,
Thankyou for informing us of the current treatment options in Thailand and associated cost and restrictions.
Great to hear of your experiences with sourcing your own generics. While it is unfortunate that your attempt to participate in the Redemption eTrials was prevented by Thai customs, your experience of obtaining a prompt refund will no doubt be reassuring for others considering taking part in the trials in other countries.
It is also good to hear that Greg Jeffreys as able to assist you in finally getting the medication required for your treatment and that you will now able to contribute your results to the database.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
13 June 2016 at 6:14 am in reply to: Be crazy and risk to be cured vs. be wise and safely wait to die #18954Hi RHF,
I believe your Option 1 can be best divided up into two sections.
Option 1A – be “crazy”, buy generics (online or by going to India) from an unverified source and either get cured, or having lost some money trying (in case of fake medication) which will lead to either repeat Option 1, either to go to Option 2. If poison or a toxic product has been purchased than ….. yeah, “die trying” might also happen.
Option 1B – be “intelligent”, buy generics from a tested and trusted source with a reliable supply chain, resulting in exactly the same opportunity of being cured as if you were using branded medication. Problem solved!
There is excellent information on how to determine what is a reliable supply chain here http://fixhepc.com/getting-treated/supply-chain-integrity.html
……and for non Australian members and guests some information on the ones FixHepC has verified as reliable can be found here http://fixhepc.com/forum/daa-access/457-warning-to-online-buyers.html#5252
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
I agree it is important that people understand that any drug treatment has some risks attached to it. However to avoid unnecessarily alarming those seeking or undergoing treatment we need to be mindful of how significant those risks are and careful to explain what the actual figures mean.
The “fungal infections” is listed in a group of side effects that are present in less than 3% of trial subjects and in all instances of these trials the Sovaldi was used in combination with Ribavirin +/- Interferon. It may still be applicable to members and guests of this site even if few are using these combinations but there is absolutely no evidence presented in the attached documents to confirm that.
The “6% blood sugar >250 (13.9)” is in one arm of the trials and is at least three times the levels of the other four arms. That particular arm is marked as PBO . So I checked what that meant and page 8 states “71 subjects who received placebo (PBO) for 12 weeks.”
Retinal detachment is a known risk associated with Peg/Riba treatment, to the extent that I was required to have an eye exam prior to participation in a clinical trial where I would receive that combination. Do you have any evidence to support its occurrence when using DAAs only?
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
11 June 2016 at 7:36 am in reply to: India Buyers Club: The new way for Americans to buy cheap drugs #18888Hi all,
Umm, I’m not certain how this has thread has become seen as a nationality discussion.
As far as I can see the ‘offending’ statement appears to be a quote by “Gregg Bigsby, a commercial fisherman from Alaska” which I assume makes him American?
If the reporter had gone on to state that “what Gregg really meant by that was blah, blah, blah” then she would have been editorialising.
And the inclusion of that quote in the OP of this thread would appear to be in the time honoured press tradition of getting public interest by using a “man bites dog!” headline…….except it appears to have resulted in argument rather than reading.
For the rest of it, I’m sure everyone on this site has experienced the stigma and ignorance associated with HCV at some point. It isn’t exclusive to any particular nationality and I see it espoused in the comments section of media outlets worldwide.
We should all be working together to educate the general populace as to the truth of the situation.
Thanks
Guy
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
“if this is the same letter for all NZ doctors”
I suspect the question should be “Is this letter the same for all generic imports?”
But it looks to me that this letter is specific to participants in the Redemption eTrials and presumably any patient wanting to individually import (any?) generic medications outside of that trial would need their doctor to furnish an equivalent letter that stated their specific case? Perhaps one of our NZ members could check that with the relevant authorities over there on Monday?
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
While there will be some risks associated with the publicity I suspect they made the decision to to go public via the AAP as a means of spreading the word and generating additional support for their/our cause much like a couple of Tasmanians did in the Australian media last year.
Here’s a link to additional reading about generic HCV treatment in Asia:
http://www.amfar.org/activists-driving-down-cost-hepatitis-c-treatment
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Hi Tommy,
While I suspect there are others as well, Dr Joshua Devsam has experience with HCV patients and will arrange any specialist oversight required. You scan your records to your computer and then upload the files from there to gp2u via the App. I suspect you will need a webcam for your computer or a laptop/tablet/phone with camera facilities for the consultation to work successfully. If you can’t arrange one of those then email gp2u and see what they suggest.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
I’ve added this to the main Monkmed thread.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Hi Price,
I’m not an expert in this field but I believe we need to be careful with our use of language when discussing these issues to ensure that people don’t misunderstand the information. Below is a definition of PREbiotics as most scientists and the WHO would understand the word.
Prebiotics are defined as food substances that are undigested by humans but that stimulate beneficial microbial activities in the gut.
http://humanmicrobiota.weebly.com/prebiotics–probiotics.html
I am prepared to accept that what gets sold to the general public by some commercial enterprises may fit the description of “cell wall fragments from dead bacteria” but that is a problem with the world of marketing rather than an incorrect definition of prebiotics.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
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