Forum Replies Created
-
What exactly is the “letter of the law” on fibroscan results? My understanding is that various countries, insurance companies and medical professionals apply different levels at which they feel it is appropriate to triage treatment for HCV. These appear to be arbitrary levels based on the hip pocket of those applying them rather than the health of the patient. Being “cut off” points they also don’t take into account the known inaccuracies of the fibroscan procedure in determining exact levels of fibrosis.
The replies by members here seem to show concern for the health of the OP by advocating against going on a bender and then share their experiences of some of the inaccuracies inherent in Fibroscans.
I see no commissioning of fraud but a lot of advocacy for best health practices.
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
Definitely wouldn’t recommend a bender!
I do seem to remember my scan appointment letters each stating to only eat a light meal at least 4 hours before the appointment to give most accurate results.
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 Jolie,
Sorry to hear of your run of ill health, definitely not what you want on Tx!
ick:' /> …..but great to hear that you are over that and can now enjoy some of the improvements to mind and body that getting rid of HCV brings. Fabulous news on the 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
No marmalade on the toast though, just in case it had Seville oranges or grapefruit it 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 Dan,
Please don’t worry, your continually improving ALT says that the treatment is working. As I said before, the scratching from excema won’t be re infecting you as long as you are practicing good hygiene.
Your 4 week results showedless than 12 but they just can’t accurately measure that low, it could be 1 or even 0.1.
But remember what Enkel has posted previously, also Dr James and even Gilead’s trials show some people do not reach UND during treatment but most who are <12 at EOT go on to be UND at SVR12.http://fixhepc.com/forum/viral-load-and-svr/570-detected-at-eot-virus-may-be-uninfectious.html
I'm sure you will be fine so relax and don't stress yourself over having results that are still very good and continuing to head in the right direction.
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 should clarify that the information and feedback I was requesting was from the many silent members and guests on here rather than medical professionals. It would be fantastic to get input from the latter but that seems unlikely in most cases even on the basis of anonymity.
When I first found this site my intent was just to source quality, tested generics and go quietly on my way and to that end I placed an order with the buyers club without even joining the forum as I am sure many others have done. But while awaiting the arrival of my meds I started reading here and found a valuable information resource and support group and decided that I wanted some of that and to maybe put a little back if I could. So here I am.
And one of the benefits to me of this site is that rather than just accepting what my doctors tell me about my HCV (and the rest of my health) I now have the confidence and knowledge to ask them the right questions about the best options and hold them to account if their answers are not satisfactory or they try to warehouse me. So all of us now understand that it is a partnership with my best health being the required outcome. To my way of thinking this is a far better situation than previously.
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 re_roll,
Scroll to the bottom of main forum pages and click on User List. You can then click on the column headers of the user list to sort and the page numbers at the bottom to scroll. Bit clunky but gets you there.
– 1st Jan was 800 – 112 = 688 members
– Although the first members look to be admins in August, probable start date is 1st Sept with Emilio’s registration?
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 Magpie,
I suspect from your other posts that you have authorised the Buyers Club to source the meds on your behalf? If so then you are most likely getting generic APIs sourced from China, tested and encapsulated in Australia. So you will receive the two active ingredients used in commercial Harvoni but as two separate capsules rather than in a single premanufactured pill.
Assuming the above is the case then they work just as well as branded Harvoni and the instructions that LondonGirl supplied are still valid. So very much a case of “same difference”.
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
Interesting approach, slash max retail price and force wholesalers to renegotiate with the manufacturers?
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
Two weeks, heh? Wonderful result LG!
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 Magpie,
The dosing should be on the containers similar to any other pharmacy supplied medication. The Sof and Led are one each per day, with or without food, whenever best suits at approx. the same time each day.
The Ribavirin is per Dr James post but take those with food, preferably with some fat content.
”James-Freeman-facebook” wrote:Ribavirin is given in 2 divided doses – one in the morning, one at night. Because it comes in 200 mg capsules it looks like this:
< 75 kg - take 2 x 200 mg in the morning, 3 x 200 mg in the evening (or 3 in the morning and 2 at night) > 75 kg – take 3 x 200 mg in the morning, 3 x 200 mg in the evening (or 3 twice a day)
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 also believe that this site is starting to built a large reservoir of knowledge, both in the forum and the editorial pages that are seen as an open, honest and reliable guide of how to source quality generics and what to expect while undergoing treatment. Certainly the Guest numbers in comparison to other sites that I have visited (but rarely posted on*) would seem to indicate this. Many people who would not consider frequenting forums will be using the provided information to make informed choices about taking charge of their own health, possibly in a more DIY manner.
While I understand and respect people’s wish to remain anonymous and/or not participate in discussion themselves, I do regret that we don’t gain their valuable experiences to add to the knowledge available here for other readers. It really would be of value to get input from an even larger cross section of people.
* I’m not really the Internet tart that my post count on here would seem to indicate.
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 Anna and welcome,
Congratulations on making the decision to take control of your health. Lots of friendly, supportive people around here so please feel free to ask any questions you may have, join in the chat and tell us how your treatment is progressing.
I see you say you are a newbie on forums, did you post in this thread because of lack of support from your hep doctor or just didn’t know how to start your own thread. If the latter than just scroll to the top of this page, click on the New Topic tab and away you go!
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 Stew,
Good changes in your LFTs! Less inflammation means less damage being done.
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
Greedfighter wrote:So from a USA perspective, an individual is probably better off trying to import from Australia or Bangladesh.
As an Australian, I don’t have a horse in this particular race but thinking about the situation:
– Could it just be coincidence? Or because currently the majority of unaccompanied imports are being made from India?
– If the Indian shipments are being targeted, is the suggested approach just rewarding Gilead’s behaviour?
– Possibly eventually narrowing the window that the FDA has to focus on?Obviously my above thoughts aren’t very helpful to individual importers but possibly something to consider for overall U.S. strategy?
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
