Forum Replies Created
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Welcome Grateful1,
Congratulations on finding out about generics and commencing treatment. Nice to see that your GP has proved to be supportive.
There are a series of grey tabs towards the top of the page which will allow you to navigate around the forum with Index and Recent Topics perhaps being the most useful for finding things. Here is a link to some instructions on how to add your signature panel https://fixhepc.com/forum/technical-support/977-how-to-add-signature-details-to-your-profile.html
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 1a2x!
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
splitdog wrote:A Voxilaprevir intermediate is now available in China.
Thanks for finding this SD, although an intermediate won’t be suitable for direct purchase and compounding due to solubility issues/bioavailability it means that generics manufacturers are able to develop a usable final product.
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 Hope, congratulations on your SVR24 in November. You are cured!Looking back, it’s almost exactly a year since you commenced treatment so it’s wonderful to hear such good news from you and I’m glad that you are so happy.
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
Oh Yeah!!! The fat lady needs some accompaniment for this song.
Great news Paul, so glad to see this.
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 Sara!
coral wrote:There is no better person to have in your corner than Dr Freeman but you will see that in so many of the posts. He has been my Dr throughout my treatment despite the fact that I live at the other end of Australia to him. You can make an appointment with him and talk to him via Skype through https://gp2u.com.au/about_us.html which is an online medical service in Australia. This is one very good option.
Fixed the link.
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
Your English translation program must be very good Gert, I thought it was just the natural way different nationalities express themselves.
I am not a doctor but here are my thoughts on your questions.
For your buddy,
20 – 30% of people who get HCV manage to clear it themselves usually within the first few months with only their own immune system and do not require medication (they will always carry the antibodies but will be undetected in a viral load test) and hopefully your friend is one of those.
But depending when he was tested there is a small possibility that his immune system had not fully cleared the virus. If you say he has symptoms similar to HCV then for his (and your) ease of mind it may be wise for him to retest for viral load now. If the test is undetected after so long then he did clear it himself and does not need to worry about the virus but if it has returned then you will be able to help him to get medication.
For you,
You should test at 12 weeks after you finish treatment which is the official confirmation of SVR. That will give you 99% probability that the virus is gone for ever. Some of us like to retest again at 24 weeks or more after finishing. That one will give 99.9% probability of SVR. Here is Dr Freeman’s 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
Hi Gert,
It is wonderful news that you are “undetected” at 30 days!
That is very promising and shows you are responding well to treatment but as your hospital says, it is important that you complete the full course of medicine to make sure that the virus is completely gone. The reason for this is that in the test they did they could not see any virus but there is a possibly that there are still very, very tiny quantities below the limits of the test. Even the best tests in the world at the moment cannot see levels of less than about 3 – 5 iu/ml. You can read about this in more detail if you wish in the Experts Corner/Viral Load and SVR section of the forum but here is a link to something Dr Freeman wrote on the subject:
https://fixhepc.com/forum/viral-load-and-svr/689-how-can-the-virus-reappear-after-und.html#10744
But you have good reasons to be smiling.
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
Okay, so reading that paper more closely it appears that many of the cohort were from pre DAA treatments.
Here is a more recent one looking only at DAAs.
“Conclusion. Treatment of chronic HCV with DAAs leads to clinically relevant reduction in liver fibrosis over the first year post-treatment, measured by Fibroscan, even after controlling for elevated ALT”
The summary is that 51.1% had improved so far but that consisted of just those who improved by greater that 30% within the first 12 months of treatment and 57% of the cohort had “significant fibrosis” to begin with.
It is still early days for DAA treatments to be followed up long term and over time I would expect larger cohort studies and better long term results. If you google something like “fibrosis regression after DAA treatment” there are other recent trials that reach similar conclusions and I didn’t see anyone attempting to claim what you have been told.
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,
Thanks, I’m aware of Lloyd Wright. If he has cured people of HCV without DAAs and has proof of doing so then he has the opportunity to significantly advance science and make a bundle more money than he does from selling his current wares. He has made such claims for many years without providing any supporting evidence so I won’t be holding my breath waiting for him to change that pattern.
I would also look very carefully at the motives of whoever it is who is claiming the liver does not regenerate after taking DAAs. Here is one paper from the NIH regarding the subject. As it states, a small group seems not to improve but that group will include those with significant damage prior to treatment and those who have various other health factors that effect their outcome.
“Most patients demonstrate marked improvements in inflammation and fibrosis following SVR; however, in large clinical trials a minority of patients (7%-13%) maintain their level of fibrosis or even progress to cirrhosis despite achieving SVR”
“The presence of significant liver co-morbidities or risk factors such as alcohol consumption or fatty liver disease are likely causes for many of the cases in which progression occurs post-SVR.”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4050744/
I very much understand that waiting for evidence of our own liver improvement can be worrying but the human body is a marvellous thing that does a fantastic job of healing itself particularly the liver. In my view the best way of achieving that is by providing it with suitable ‘tools’ to do its job which means maintaining a varied and healthy diet, exercise, positive thoughts, etc while reducing/removing things that delay or counteract its healing ability (stress, alcohol, etc.). Appropriate vitamins and possibly some supplements in suitable doses may help if you need them but your doctor and medical research are more likely to be able to determine that than someone who is trying to sell you something by making unsubstantiated claims.
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,
I think your suspicions about their motives are probably ‘right on the money’, particularly assuming they can’t point to well conducted studies that back up their claims.
Regarding supplements, IMHO for most of us a well varied, balanced diet should provide most or all of our needs so ensuring we eat well is part of taking control of our health. However age, general health and liver condition may slightly impact our ability to absorb everything we require so when I started treatment I tested for vitamin deficiencies. Vit D was very low even though I get a fair bit of sun and B12 moderately low so I took supplements at the levels recommended for me, by my doctor, to boost both of them. So I used evidenced based data to determine whether I needed “extra” over and above my diet.
– Milk Thistle is claimed to reduce inflammation although the jury is still out. In moderate doses I doubt it will cause any harm but we know that SVR reduces inflammation anyway.
– Selenium is needed at trace levels, a couple of Brazil nuts a day or a tuna/beef steak every few days should do the trick.
– Magnesium can be found in fish, nuts, leafy greens, bananas and plenty of other foods.
– Blueberries are delicious! I usually sprinkle a few on my muesli/oats for breakfast as one of the fruits I add. Like many berries and other fruit they have good levels of antioxidants plus vitamins, etc, etc. I doubt they are ‘magic’, just a useful and tasty part of a well balanced diet. “a liver formula that helps remove inflammation”
Okay, this is where we are moving into uncharted territory and I would be very cautious. What does this formula contain? All the ingredients? Is there anything in there that could potentially be toxic to the liver? Or other organs? Who makes it? What are their facilities and qualitiy processes? How do they ensure there are no contaminants? Where are the documented studies that show that this formula has some positive effect on liver inflammation?
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
beaches wrote:Someone must be pulling your leg about the 11,000eu
Yep, you bet someone is! Somewhat surrprisingly it seems to be the nice tourist agency manager that they interviewed, who’d of thunk itl!!!
The problem is that having that ridiculous price splashed across the screen for most of the news items may cause many people over there to believe it’s true. (don’t forget that the ‘originator’ price for these medications in Europe is 3-4 times that price so 11k may look cheap……but it’s still totally unaffordable to the average Romanian.)
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
Thanks RHF,
Not knowing the Romanian language it is difficult to pick up any subtleties in what is being said. It seems good news in that people will now be aware of the Indian medications, that they work and that (some) doctors will support patients using them.
11,000eu is displayed on the screen the whole time which is maybe not so good as I imagine for the average person that is still totally unaffordable? But it looked like that is a complete tourist package price for a “holiday to India + medicine” so hopefully people will be encouraged by that and some will look at whether they can somehow “do it themselves” for cheaper. Are there any Hepatitis support groups or forums over there that can help spread the word about what the true costs 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
Hi London_R,
Ribavirin has a halflife of about 12 days so it takes a while to get out of your system. Both times I’ve treated with it I found that sides took several weeks to drop to reasonably low levels.
I would be a little wary about echinacea so soon after finishing treatment due to its potential effects on your recovering liver.
“Use cautiously in people who have or are at risk of liver disorders or are taking a large amount of echinacea. Echinacea may cause liver damage.”
http://www.mayoclinic.org/drugs-supplements/echinacea/safety/hrb-20059246
For diet I would suggest a balanced heart smart type diet with plenty of fresh vegetable and fruit and limited ‘processed’ foods is a good way to go if you can manage it.
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 Alex and welcome,
If you are trying to contact Beacon Pharmaceuticals with that question it may be a good idea to do so directly using the contact information at the start of this thread. I am sure they will be happy to answer your questions.
If you are asking FixHepC then please send an email to help@fixhepc.com or ring them on 61 3 8672 7825 and they will also try to assist. It is 2:00am in Australia at the moment so there will be someone in their office in about 7 hours from now.
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
