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I also have similar but it started about halfway through 24 weeks Tx and It’s more of a mild ache/dull stitch that comes and goes. Checked by specialist including scans but nothing significant found. Apparently I have a bit of “gravel” in my gallbladder rather than stones but he says if that was the problem he expects it would be more painful than I am experiencing. I do wonder if it is somehow related to digestion and maybe bile issues as it seems more common/noticeable after I’ve eaten a fatty meal.
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 Sven,
Allowing for slight differences in the different brands of assay tests the actual testing is the same, the problem as you say is in the protocol of different labs and doctors in the way that results are reported and explained. I’ll try to explain my understanding of these tests as best I can.
First you need to understand that most modern tests like you received can accurately read down to 15iu/mL or sometimes 12iu/mL. The key word is accurately. They can read below that level and as you doctor says they will often read down to around 5-6 but between 5-6 and 15 they aren’t accurate. It is a bit like older car speedos which gave a good reading with 1mph divisions at 35mph but below 15mph there’s no markings and the needle wavers around a lot.
There are two types of test result: Qualitative and Quantitative.
Usually the test assay and equipment used is basically the same. The differences are:
Qualitative: a blood sample is taken and processed. It is then examined to see whether they can see the virus. If they can see it then they report it as Detected, if not then Undetected. End of test and the report gives you one of those answers. So it is a quick and dirty Yes/No test with no attempt to work out how much virus is present.
Quantitative: a blood sample is taken and processed. It is then examined to see whether they can see the virus. If they can see it then they go further and measure it against their scale and if it is above 15iu/mL then they will give an accurate result of 27 or 153 or whatever it is. If it is below 15 they can’t give you an accurate answer so they just say Detected <15 but the assumption is that it is probably somewhere between 5-6 and 15.
However, if when they check they can’t see any virus then sometimes it is reported as Undetected the same as a qualitative test but sometimes with the accuracy level of <15iu/mL of the test included. This is because they don’t accurately know where the lower level but they are confident that it must be less than 15. Some labs/doctors seem reluctant to put the Undetected result in writing and just report the <15 but then give a verbal undetected like your doctor appears to have.
The thing to keep in mind with these tests is that, as I think your doctor is trying to say, they can’t determine no virus, only that the virus levels are so low that the test can’t see it so it may or may not still be present which is what they mean by Undetected. If there is still virus then either our immune system will kill off the few remaining ones or it will start replicating again and eventually reach high enough levels to be detected and that is why we need to wait for a period of time such as SVR12 to see whether we are cured.
I hope that makes it a little clearer for you.
(I talk about ‘seeing’ the virus in these tests but really they are looking for viral RNA)
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
Vororo wrote:What do you say we move all this to a “One Year Later” thread?
Done.
Wow, looking back I realise that this is the week a year ago that I first found FixHepC after reading an article in the paper about a “buyers club”. Reading all of your stories on here was an important part of giving me confidence to take the generic pathway and along the way I’ve learnt so much from all of you.
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 countless,
As Tommy points out Frank Lloyd is in the business of selling supplements. He appears to do so by attempting to instil FUD (fear, uncertainty & doubt) about pharmaceutical medicines in his customers. The Canadian Sovaldi monograph that Marcee quotes in your link does include some vision issues but it is an old monograph from when all the clinical trials used Sovaldi in combination with ribavirin and/or interferon, both of which were known to cause vision problems. So much so that when I participated in a clinical trial using those two (but not Sovaldi) in 2013 I was required to have a full eye checkup for any problems prior to commencing the trial. As with any drugs we take these newer DAAs may have some side effects but so does living with HCV. My experience has been that the reduction in my complications of HCV has greatly outweighed the side effects of the medication.
As far as relapses go, like sabrecat I am one of those but was always considered a difficult to treat patient due to genotype, prior treatment and extent of cirrhosis. I am currently planning my next treatment.
But the overall figures for success both on this site and elsewhere are in line with expectations at greater than 90% overall although slightly less than the initial clinical trials indicated. Here is the latest data https://fixhepc.com/forum/experts-corner/1316-harvoni-delivers-only-91-92-svr12-in-va-study-n-4365.html#21770
The thing is, most people move on and start living a life free of hep C and forums once they achieve SVR so those of us who need to retreat can seem to be a greater percentage than we really are.
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
Congratulations Donna, magic result after 3 weeks! 
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 Aliosha67,
The Redemption trials are still accepting patients. https://fixhepc.com/home/redemption-etrials.html
If you have any specific questions regarding the registration process please email help@fixhepc.com or you can phone on 61 3 86727825 during business hours (Australian eastern time zone)
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
Congratulations CC2B!
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
A recent study of Daclatasvir interactions funded by BMS and including the following conclusion.
The robust characterization of the DCV clinical pharmacology program has demonstrated that DCV has few or no clinically relevant DDIs with medications with which it is likely to be co-administered, and the majority of DDIs that do occur can be predicted and easily managed.
http://link.springer.com/article/10.1007%2Fs12325-016-0407-5
Probably not a great deal of new information for those who have read this site extensively but it does officially confirm the Taurine found in many energy drinks as something to be avoided as suggested by Dr Freeman.
In addition to herbal and dietary supplements which may increase DCV exposure via CYP3A4 inhibition, others may induce or modulate the induction of CYP3A4 and thus potentially reduce the antiviral activity of DCV. Such extracts include St. John’s wort (Hypericum perforatum; a strong inducer of CYP3A4 and thus contraindicated for concomitant use with DCV) [36] and taurine (commonly found in body-building supplements and energy drinks) [38].
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 Lily and welcome,
There are quite a few people who have treated successfully or are currently treating with Twinvir here, no doubt some of them will be able to tell you more of their story but if you put that name in the search function you will find plenty of reading regarding it. It has been available for almost a year now but I understand the maker has only recently entered the African market.
Twinvir is a generic version of Harvoni (Sofosbuvir 400mg + Ledipasvir 100mg) that is manufactured by Incepta Pharmaceuticals who are listed in our manufacturers section https://fixhepc.com/forum/daa-access/435-incepta-pharmaceuticals-sof-dac-sof-led-comb.html along with contact information. It is an effective one pill per day treatment for HCV genotype 1 when taken for the appropriate length of time.
Ribavirin is an ‘add on’ drug that won’t cure HCV on its own, it used to be used in combination with Peg Interferon but these days is usually used to increase the effects of modern DAA (direct acting antiviral) medications such as Twinvir in difficult to treat cases such as those with cirrhosis or who have failed previous treatments.
Hepantivir is a ‘herbal medicine’ that is claimed to cure all types of hepatitis, it doesn’t and there is no scientific or medical proof to show that it works. http://www.hepb.org/blog/buyer-beware-when-someone-claims-to-have-a-hepatitis-b-cure-its-a-counterfeit-drug/
My recommendation would be to spend your money on tested and proven medications like Twinvir or the equivalent product from any one of a number of Indian or Bangladeshi manufacturers many of which you will find listed in our generic medications access section. http://fixhepc.com/forum/generic-medication-access-channels.html
I hope that assists you and if you or your relative have any questions please ask.
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
The New Zealand Hepatitis Foundation also has a live link.
If you do decide to personally import treatments, we recommend you:
only consider overseas suppliers who demonstrate they have a thorough process to test the authenticity of the drugs, such as The Fix Hep C Buyers Club.
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 Aliwhyte,
To answer your question:
No you can’t just walk into a pharmacy in India and buy these medications, you would need a Indian prescription but even then as a tourist it will be difficult to purchase directly from a pharmacy. In most cases tourists will need to take their medical records from their own country including genotype, viral load, Fibroscan results etc to India and consult an Indian specialist who will review their case with them and if everything is in order will write them a script. Those with no or insufficient records to cover that process will need to complete any tests required in India which obviously takes time. Once that has happened and you have a script you will find the easiest way to buy the medications is via one of the distributors who the specialist will often put you in contact with. Some people will tell you that you don’t need to do all that but each shortcut you take increases the risks.
The costs and time in travelling to India and completing that process means that in many cases it is much cheaper to arrange shipment of the medications while you stay at home. However you are in Germany and I am not sure if that is one of the number of European countries where there is risk that customs will confiscate mail order shipments of pharmaceutical drugs. If that is the case then most still allow citizens to return from external trips carrying personally prescribed medications. You would need to check what customs laws apply in your country and maybe get the delivery made to a country like the UK that does allow mail order shipment. Obviously you would need a friend or relative or for yourself to be on holiday in that country to receive the delivery which you can then legally carry back across the border.
I can’t comment on the suppliers listed by the two previous posters as they have not requested verification by FixHepC so we have not checked them. However I would urge you to read the information in the link below regarding supply chain integrity.
http://fixhepc.com/getting-treated/supply-chain-integrity.html
And this link includes a list of verified suppliers whose contact details can be found in the Pharma’s Market section of the site.
http://fixhepc.com/forum/daa-access/457-warning-to-online-buyers.html
While most sources require you to directly negotiate with the supplier the following two organise the process on your behalf.
FixHepC sponsored Redemption e-Trials which use Indian generics and assistance throughout the process and treatment and includes a money back guarantee of delivery can be found in the link below and you can email help@fixhepc.com with any questions regarding their ability to ship direct to Germany.
https://fixhepc.com/redemption-imagine-freedom-from-hepatitis-c
Alternatively Greg Jefferys also provides a simple assisted purchasing process for Indian generics via his trusted Indian contacts.
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 Sabrecat,
i thought you used Sof/Dac/Riba on your previous treatment? Are you saying that you are being recommended to retreat with just Sof and Riba this time?
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
Misa no doctor
.That’s all right, Sven’s doctor sounds more like a lawyer anyway.
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
