Home › Forums › Main Forum › Patient Stories › ‘In which LG seeks Redemption & makes new friends’
- This topic has 522 replies, 53 voices, and was last updated 7 years, 9 months ago by Dan.
-
AuthorPosts
-
15 January 2016 at 3:52 am #9160
Hahahaha Thank You Vororo – Basil Fawlty – I’m a big John Cleese fan. I miss those shows
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50H15 January 2016 at 4:15 am #9163Me again!
To continue my rant about NHS Good-Speak, here is a good example:
A recent news article on the BBC describes how Hepatitis C came to Scotland “through the mass treatment of soldiers in field hospitals across the country during WWII. …”
http://www.bbc.com/news/uk-scotland-34658098
OK, fair enough. Hep-C goes back to WW2. But then the article goes on:
Within Scotland, transmission of the virus began to increase in the 1970s, with different strains being discovered in Glasgow and Edinburgh. … From then until 1991, about 2,500 people were infected with hepatitis C through NHS blood products – mainly those imported from the US – during a contaminated blood scandal described by a Scottish inquiry as “the stuff of nightmares”. Children being treated at Yorkhill Hospital in Glasgow for haemophilia during this time were given plasma products sourced from donors in the US, which were known to be high-risk. As a result, many were infected with HIV and Hepatitis C by the age of five. Lord Penrose launched a six-year inquiry, the conclusions of which were met with cries of ‘whitewash’ from angry victims and their families when it was published in March 2015.
So much for progress. Maybe we can learn something from all that… But the thing that really bothers me is how the authors of the latest study now want to leap into action:
“Lead scientist of the University of Glasgow study, Dr Carol McWilliam Leitch, said: “HCV poses a significant public health challenge in Scotland as well as globally. There is currently no vaccine against the virus and the recently developed antiviral drugs are not only extremely costly, but resistant strains have already emerged. Pinpointing regions of Scotland driving HCV spread will allow us to more effectively target treatments, monitor their effect and track resistant strains. These measures are essential if we are to combat the virus. We now intend to focus our attention on HCV spread in other Scottish regions and to extend the study across the UK.”
OK, Dr Carol McWilliam Leitch works for the University of Glasgow, and not the NHS. But I ask you!!??
“Pinpoint regions of Scotland driving HCV spread…”??? “Track strains…”??? “These measures are essential to combat the virus…”??? “”Focus on HVC spread to other regions…” Extend the study across the UK???
I ask you again! Why is there no mention of actually treating anyone in this article??
WTF!!!
I’m flying to Australia! No, wait. I already did!
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).15 January 2016 at 12:02 pm #9224Yes, get tested and the get TREATED – There are medicines for this now, you know?
Look up that person’s name with the words ‘grant received by Gilead for’ or ‘Sponsored by Gilead to write a paper on ‘ …… ”
or ‘Conflicts of interest’
That often explains it.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC15 January 2016 at 12:45 pm #9230LondonGirl wrote:Yes, get tested and the get TREATED – There are medicines for this now, you know?
Look up that person’s name with the words ‘grant received by Gilead for’ or ‘Sponsored by Gilead to write a paper on ‘ ……
or ‘Conflicts of interest’
That often explains it.
Hey LG
Bang on – if I may draw your attention to Appendix 6: Summary of declared interests of members of Guidelines Development Group for the development of WHO HCV guidelines for screening care and treatment of persons with HCV.http://apps.who.int/iris/bitstream/10665/133738/1/WHO_HIV_2014.27_eng.pdf?ua=1&ua=1
SVR 24
16 January 2016 at 7:32 am #9405Hey, LG! Been absent from the forums due to a lack of net connection (and I haven’t got long to go on this one but should be back to normal next week), so have been trying to catch up, at least a bit. Fantastic news that you have now kicked off on tx and are doing so well I only got the ‘speedy’ side effect for a couple of days, but I’d enjoy it while you have it…and we aren’t used to having such energy huh lol. Just want to wish you all the best, fingers crossed
GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 – 6 weeks UNDETECTED
AST 26
ALT 2616 January 2016 at 8:47 am #9413Tina-Hill-facebook wrote:LondonGirl wrote:Yes, get tested and the get TREATED – There are medicines for this now, you know?
Look up that person’s name with the words ‘grant received by Gilead for’ or ‘Sponsored by Gilead to write a paper on ‘ ……
or ‘Conflicts of interest’
That often explains it.
Hey LG
Bang on – if I may draw your attention to Appendix 6: Summary of declared interests of members of Guidelines Development Group for the development of WHO HCV guidelines for screening care and treatment of persons with HCV.Makes for some interesting reading and shows the extent of the greedy paws of big pharma
http://apps.who.int/iris/bitstream/10665/133738/1/WHO_HIV_2014.27_eng.pdf?ua=1&ua=1%5B/quote%5D
Thanks Tina,
It is appropriate that this is posted but I also think that we need to be careful about accusations of attempts to unduly influence by the Pharma’s and being unduly influenced against the guidelines creators.
Part of this issue is that the various government approval processes such as PBAC and FDA require approval trials to be monitored by independent monitors. Usually this will be large hospitals that will not have the funds to divert from their normal budgets and governments are not prepared to cough up the money to support a commercial enterprise. So the Pharma’s provide the drugs and funding for the trials. Other times they provide funds for experts to travel, meet, cooperate internationally for the benefit of many (err….including themselves). In an ideal world it would all be arms length with truly independent arbitrators in the middle. The real world doesn’t work like that so we always have potential for conflict of interest. The intent of these lists is to make us aware of where that potential lies so we can watch for anything untoward. Really a case of “Better the devil you know….”
My declaration of interests: Drugs, health monitoring, parking and pro rata travel costs funded by BMS as participant in clinical trial.
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
16 January 2016 at 8:55 am #9414Fair point and yes you are right GAJ, I have edited my post to reflect your insight.
SVR 24
16 January 2016 at 9:02 am #9415Thanks Tina, I should also have commented that what concerns me more than these open declarations is when you have to dig down into the nitty gritty of annual financial reports to look for funds being provided.
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
16 January 2016 at 1:10 pm #9429GAJ said
Parking
a ha ha !
Thanks Zhuk
Also away from home on slow connection, another one down the hatch heh (I ‘ve picked up this ‘heh’ thing at the end of a sentence from our Australian friends !)
I can start thinking about a blood test soon
to all
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC16 January 2016 at 2:23 pm #9434Hi LG,
Good news! On treatment! Yay!
Fingers crossed for the best blood test ever!
HCV since I don’t know. Diagnosed in 2010.
GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive,
started 12 wks Twinvir on 06.12.2015. Feeling great and grateful 🙂
virus not detected 06.02.2016 & SVR24
isaing4@gmail.com16 January 2016 at 2:31 pm #9435LondonGirl wrote:GAJ said
Parking
a ha ha !
Hey, it’s not often you get big Pharma to pay for your favourite pastime.
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
16 January 2016 at 8:54 pm #9467Genius !
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC16 January 2016 at 9:44 pm #9469Hi LG, glad to see you are feeling like a busy bee
Just wondered if you’d buzzed along to collect your B12 yet as I’m having what your having!
Deb x16 January 2016 at 9:51 pm #9470Hello lovely, Away from home, will do Monday morning & let you know when I do, I’m on the superB complex right now, but never do supplements on Sundays
How are you doing ?
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC17 January 2016 at 12:51 am #9475 -
AuthorPosts
- You must be logged in to reply to this topic.