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Hi Sue,
zhuk explains the two options suggested by Dr James.
Worth discussing with your doctor/specialist. While your fibrosis is low you’ve had hep for 40 years which slightly increases any risks. So if you haven’t had either then may be worth doing as early detection of various problems is best and both options are non-invasive.
G
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! Just googled Aveeno and contains oatmeal. We switched to an oatmeal soap as well while I was Pegging. Helped a lot. Still use which was why I forgot about 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
Hmmm. Shepherds pie, lasagna, spaghetti bol, meatloaf, hamburgers, homemade sausage rolls?
Pretty much anything using (not too lean) mince meat you can grate up some carrot, zucchini, onion, etc. the thicker and richer flavoured any sauce is, and the finer you grate the more you can get away with but don’t use too much in the beginning.
Blitz fresh strawberries with some strawberry syrup?
G
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 Dan,
I was wondering if the effect you describe was occurring just after you took the meds so a reaction to them but it seems not. I’m thinking maybe the pumping/pulsating feeling is what I and a few others describe as a “speedy” feeling? If so mine seems to have reduced a little in the third week.
Enkel,
Not sure there is a best time to take the meds. I started taking mine before breakfast like Dan in case they effected my sleep but knowing that if they made it difficult to do work etc during the day then I could move the time say an hour a day until I was taking them in the evening. But the morning seems fine and hasn’t caused noticeable problems so I just keep taking before breakfast. ( I also take two doses of ribavarin each day after breakfast and evening meal as you need a full stomach for those.)
G
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
Umm, okay, just reread your post. The dollar thermometer seems to confirm what we donate. It matched the Doc’s numbers in his other post in this section about the amount donated in 24 hrs and then changed by the same amount I donated when I added mine.
I’m trusting that the Doc’s agreement with the foundation will be honoured and that all the funds which are nominated as “FixHepC” and shown in thermometer will be passed on for purchase of medication for most needy per MELD scores, etc.
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 Em,
I’ll try to walk you through process.
– click on the “givenow” link at the bottom of the Doc’s post.
– note $ thermometer showing how much we have donated so far and note that quantity.
– scroll to bottom of page and select one of the options. I chose “Give a one off donation online”
– enter quantity you want to donate. Scroll down and select the “my giving” option you want. I chose “Don’t use my giving”
– click “continue”
– complete personal details. Click “pay by credit card”
– click on “leave a message why donation is important to you”
– click “other”
– Type in “Fixhepc”
– click “continue”
– enter credit card details etc
– click, I think it was “make donation”
– go back to front page and check $ thermometer has gone up by amount of your donation.** if the increase was different from what you donated you won’t be able to tell whether yours went through or it was someone else so you better do it again.***
G
*** did you see what I just did 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
Hi Dan,
I found sorbolene moisturiser (plain, unscented) very effective when I was on Peg/Riba and had bad itching and skin irritation but not certain about using if you have eczema?
Not sure what you mean by “pumping sensations”? Do you take the meds in evening?
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 Archer,
As Paul says I’m sure if you contact them they’ll be happy to correct it.
I must admit I had to flick back and forth between their site and the instructions here to make sure I got it right. And then check that the total on the thermometer went up by the same amount just to be sure.
Perhaps one of the mods could insert a step by step walk-though with pics into this thread under the Doc’s post assuming the Andrew Shaw Foundation has no objections?
G
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 Alsdad,
Let’s agree to disagree on the means to ultimately control the excesses of the pharmaceutical industry.
But I believe we can both agree on the need to get information and support regarding access to affordable treatment to as many people with Hep C as possible and can work together to spread information about the various means currently available such as FixHepC, Greg Jefferys, Killthedragon and other reliable, trustworthy self import sources as and when they develop?
Best wishes
G
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 Alsdad,
Alsdad wrote:‘market driven’ should never ever be the main factor in curing diseases.
It appears our philosophies aren’t too different in this regard, assuming the emphasis is on the word “main”.
.
Alsdad wrote:PLCs in the pharmaceutical industry should be heavily regulated, by definition.
Okay, this is where we differ. I have yet to see a heavily regulated industry anywhere that is innovative and looks to the future. Heavy regulation and presumably price control in the pharmaceuticals field would see the venture capitalists funding “exciting new opportunities in the hand held personal computing devices field” or similar. Schinazi wouldn’t have the funding to be setting up research companies like Pharmasett. The R&D would all be occurring in shoestring budget labs at Gilead, etc. Whose own research was going nowhere and driving their share price and thus funding abilities ever downward until they lucked onto Pharmasett.
My argument is that we live in a modern market driven economy which while not ideal, particularly from a health perpective, is the reality and probably more conducive to advances in medical research than a heavily government regulated economy. Allowing this, the market driven economy responds to $ first, second and mostly third. To control it’s excesses it is necessary to find a means to stem the flow of money to those exhibiting or contemplating the excesses. Competition and bad publicity are the two most effective means of achieving that end.
G
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
To clarify my position, I believe that inventors, IP owners, venture capitalists and pharmaceutical companies should be well rewarded for their endeavors and the risks they take. My comments about doing an Express Scripts with Sofosbuvir and circumventing patents are based purely on Gilead behaving in the same manner as Martin Shkreli did with Daraprim. Similarly my comment quoting Dr James about Pharmasett R&D cost vs days of return were driven by Gilead’s justification of their pricing as being due to high R&D costs.
I have just spent the evening with an old friend visiting our shores from Scotland for the first time in 5 years. So I explained to him that I had Hep C and we had a discussion about it. What amazed me was that a well educated, travelled and read 60 year old who had just retired from running his own very successful business had very little idea about the subject. When I mentioned that there were about 180 million chronic sufferers he looked thoughtful then said “No….that would mean more that one in 50 worldwide?” The implication being that I had my figures wrong……after all this disease was a problem of a few young junkies? Oh, and me of course! Having known me 25 odd years he was a little surprised. Therein lies a lot of the problem, we live with this virus and know about it, most don’t.
To the current discussion I would like to add:
– the venture capitalists took big risks and put up early monies for Pharmasett to set up – they deserve a good return.
– Schinazi had the vision to set up Pharmasett – he deserved a good return. (My less than flattering comments about him in the other thread relate to his attitude/ethics as evidenced by his ‘only working for VA 7/8 of the time’ & “I’m sorry you’re taking it personally” comments.)
– Pharmasett was publicly listed in 2007, four years prior to Gilead purchase. Neither Schinazi or VCs were majority shareholders or had a lot of control from then on.
– Gilead took 15 days after the announcement about what became Sofosbuvir to determine they would pay almost double market value for shares. (Hard for a shareholder to refuse a gold handshake offer like that)WTF happened?
I believe someone very astute but totally ruthless at Gilead had the following brainwave:
– Sofosbuvir is a major breakthrough in the treatment of Hep C – a game changer!
– there is a worldwide market of massive proportions.
– said market is reluctant to discuss/protest publicly because of how they caught it or at least the perception presented.
– it is not a ‘messy’ disease with deaths in the streets or hideous disfigurements that will generate bad publicity about drug access.
– it usually doesn’t manifest strongly until later in life when the chronically infected are likely to have capital behind them to pay for treatment.
– the original major wave epidemic of the 60s/70s/80s driven by IVDs in first world and mass immunisation in developing and third world countries was ripe for picking.Thus Gilead made a snap decision to pay what seemed like over the top price to ensure success in what everyone else saw as a risky move but they saw as a golden opportunity to milk the various markets worldwide for everything they could for as long as possible with absolutely no regard for their fellow man’s health.
They made a conscious, considered decision to do this and are the guilty party in this case and the others had very little ability to change the outcome whether they wanted to or not.
We do need checks and balances but I suspect those will have to be market driven in the form of:
– competition fuelled by the desire to get a small fraction of the inflated pie that Gilead have created, by undercutting/obsoleting Sofosbuvir. (Cue China?)
– enough bad publicity to hurt Gilead share prices (we can assist here)Either of these scenarios may just, if we are lucky, be enough to cause anyone else to apply caution if considering a repeat performance.
G
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 Dr James,
Results of RVR look good (the gt2 really speaks to me).
Are you saying that you were trialling a potential pressed/moulded style of combined sof/dac tablet as opposed to sof/dac in capsule(s)?
G
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
”James-Freeman-facebook” wrote:‘Snip’
……..so Pharmasset’s original $324 million R&D investment is being returned every 8 days.
When we’re talking such big numbers, it’s hard for most of us to put into perspective. I think this bit really says what it’s about!
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
Good to hear numbers treated quoted. And the results!
G
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
And back more on topic, I found this article about understating of U.S. Hep C numbers.
http://onlinelibrary.wiley.com/doi/10.1002/hep.27978/abstract
I wonder how many similar type groups are excluded in other countries counts?
I know in Australia it is a reportable disease but how do we count – the total reports? Or do we use a different set of figures as we seem to be a bit vague about how many have it? I’ve seen anything from 200k to 270k quoted although the most common figure seems to be about 230k.
G
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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