Forum Replies Created
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psavic wrote:
I’m worried about previous fibroskan of 16.3 kPa. What I was made a month ago, while I had a mild form of flu – a runny nose and hoarseness ….
In my non medical opinion I would ignore that result. You had flu, the operator seems to have done some things differently from the medically recommended procedure (e.g. Told you right leg over left, hold breath, etc.) and what everyone else, including myself has experienced when doing fibroscan. The result is also very different from you biopsy and latest scan so I think that it was not a good result.
If you can, do viral load tests at 4 & 8 weeks to give you confidence but all the data and recommendations say that 12 weeks is enough if you are Tx naive.
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
CJ wrote:Why don’t mozzies spread it if they spread other viruses I wonder?
Hi Cindi,
As I understand it, the virus needs to be able to replicate within the mosquito before it can be passed on to others. HCV can’t do that because mosquitoes have no liver.
“The mosquito and virus do not harm one another but the virus reproduces inside the mosquito. Later, the mosquito can pass the viruses to other humans when biting them.”
http://npic.orst.edu/pest/mosquito/diseases.html
But this is only for viruses that can replicate in mosquitoes. HCV can’t so can’t be passed on by mosquitoes.
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 Suzi and welcome,
As Sirchinenge says, hopefully the Doc can provide some input.
In the meantime I found these while searching.
Limited information on patients infected both with HCV and HBV (Hepatitis B virus) Harvoni can be used in patients with HCV and HBV co-infection. However, more information on the use of Harvoni in patients with HCV/HBV co-infection is needed. A clinical study will provide more information on these patients. And also some information on a couple of Clinical trials but only at the recruiting stage so far.
https://clinicaltrials.gov/ct2/show/NCT02613871?term=HBV+AND+HCV&rank=13
https://clinicaltrials.gov/ct2/show/NCT02555943?term=HCV+AND+HBV&rank=3I can’t find any earlier trial results. Maybe email Gilead and ask them? They may be able to point to something.
Other than that I suggest bumping this tread every few days between now and your appt on 4th Feb in case one of our guests with real world experience reads it and can provide further input.
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
CJ wrote:Oh I never thought of this, when J gets his hair cut, they use those electric clippers to tidy up the neck etc.
Quite a horrible thought……
hmy:That has concerned me since being diagnosed. I have been very conscious of being nicked and having to self report even though where I go use special small clippers with removable cutting head for that bit and disinfect between cuts, but how good is their disinfection process? It hasn’t happened or even felt close so seems reasonably safe.
What does scare me is the old and once very common method of dry shaving the neck with a straight razor. I wonder how often that was responsible for unexplained infection before we knew better.
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
Fantastic interview Hazel!.
Edit: and just watched the news clip too! Way to get the information out there.
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
Oops, yes.
I saw Price’s recent post and just assumed the ones above were also current. OTOH I looked up the thread that Enkel linked and that is still there continuing up until 30th December when the mods locked it due to bickering and concerns over reliability of some of the sources being recommended in it. But it is still there and visible rather than being deleted which bodes well for Price’s post. Policy change or just realising they need to stay relevant and keep up with what is happening in the HCV treatment world?
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
Great to hear you got your meds. Your fibroscan is good news and it sounds like you have been given plenty of information about your results which gives much more confidence than just being told you are F? without the extra explanation.
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
mgalbrai wrote:All you have to do is look at all Harvoni ads on their homepage…
86Hi Mike,
I suspect that may have more to do with the cache and cookies on your device than medhelp. When I land there, I don’t see that but then I don’t look up harvoni as being 3a I have no interest in it.
I also clean out my devices regularly, probably paranoia but it’s all mine so I cater to it. 
What is certainly happening is that medhelp are selling advertising space to pay for their commercial site. So you will see ads unless you have blocker software and they will be targeted if your computer indicates you have particular interests. Of course they could be in bed with gilead but I doubt the various posts quoted here would stay for 10 minutes if they were. Are they a reliable source of info on hep c? No idea, don’t find their formatting appealing so didn’t stick around, call me shallow if you want.
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
Hmm. Not sure that there have been any licensing deals with generics manufacturers that U.S. Vets admin can take advantage of? And responsive wouldn’t be the word I would apply to Gilead licensing deals in countries that did not recognise the patent. Perhaps reactive is a more appropriate description?
While not sure what the PBS agreement has to do with the above discussion, we can go there if you like. I’m not privy to what the correct costs are so will accepts yours for now but as you more correctly point out further down your post the Australian government isn’t “footing the bill”. The Australian taxpayer is though, and as one I’m not sure I understand why we have to pay the price of $30k per Tx for something that the manufacturer can make for several hundred bucks (probably less) and generics manufacturers could supply for around 5-7% of Gilead’s price even after paying a 7% licensing fee?
And I don’t see anything extraordinary in a publicly funded universal health care system such as Medicare paying for healthcare for all Australians, although I guess the profits that Gilead is still making on the deal would qualify for that word!
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
Yep, as you say……and Enkel also in a different way, it is semantics. They can’t give a 100% guarantee that you have got rid of the virus 24 weeks post treatment (or even 240 or 2400 weeks) so they are not prepared to call it “cured” but rather a “sustained” response. To you and me it is cured!!!
But wait…..the same website you quote also has a definition of “cure” that would seem to include what we experience during SVR.
“Cure: 1. To heal, to make well, to restore to good health. 2. A time without recurrence of a disease so that the risk of recurrence is small.”
http://www.medicinenet.com/script/main/art.asp?articlekey=31243
Methinks they are having a dollar each way.
It comes down to what Abraham Lincoln said about not trusting what you read on the Internet.
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
Oops, me too. You even mentioned it to me in Jaz’s thread and I didn’t twig! Congratulations.
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 honker,
Wow, only 2 weeks till Tx! I remember when you first joined and I thought Feb seemed so far away. It’s a beautiful island so enjoy the trip and best wishes for your journey to SVR.
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 Tiana,
Welcome and congratulations on making the decision to take control of your health by commencing treatment.
Sorry to hear that the start of your Tx has been dampened by side effects. This virus and its Tx seem to effect us all differently with many not being aware we have it for decades and others like yourself having episodes thoughout. The same seems to be the case with the sides too, although not necessarily the same people. Most do find that the initial few weeks of Tx are the worst though and that is understandable with our bodies being host to a lot of slaughtered viruses that need to be cleaned out during that period. But for most, our livers start to return to normal functioning in a matter of weeks and the differences become very noticeable. Most find drinking lots of water helps.
I also have no doubts that the first few weeks, at least, are a very emotional time for most with long periods of greater hope than we have felt for a long time but also little moments of doubt too. But rest assured, the meds do work and once you get some initial blood tests all the doubts seem to fade away. If you can give us some idea of your genotype and fibrosis levels and prior treatments if any that will help people answer any questions you have, and please ask away if there is anything you want to know. Many of us put our details in our signatures and should you wish to do that, you will find it in one of the tabs near where you added your avatar. You need to scroll right down to find the sig panel.
Anyway, we look forward to hearing of your journey as it progresses.
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 Dude,
Fibrosure blood test can be used similar to fibroscan to determine level of fibrosis/cirrhosis and thus length of treatment required. But it only works pretreatment as once on these meds all the liver functions which it uses for diagnosis return to normal levels pretty quickly even though the fibrosis is still there.
Ideally you want to know your fibrosis level before ordering any meds but it is possible to order 12 weeks initial Tx then get your fibrosis levels checked while waiting for it to arrive so that you know if 12 weeks is enough or you will need to order a repeat script later. Most countries only allow 3 months meds to be imported at a time 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
Chejai wrote:BTW, does anyone else have posts sometimes that the last couple of lines get chopped off?
Errrr…..yes, here’s what happened to me yesterday.
[video]http://m.youtube.com/watch?v=Zib2jAuMw_0[/video]
If you click on the pink edit button on the bottom right of your own posts you can go back into them and add in the bit that got missed.
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
