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TOPIC: Anticipation and Thanks

Anticipation and Thanks 4 years 2 weeks ago #1784

  • Rowan
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I have had HCV for longer than I can remember. I was initially diagnosed in 1994 and had to convince doctors that I had never used injecting drugs nor had a tattoo, piercing or blood transfusion. I was not believed. In 1995 a professor of hepatology placed me on a trial using Interferon only. It was an ordeal and I suffered depression. Unfortunately I never met the criteria for continuation although my Liver Function Tests showed a major improvement. In 1995 I had "bridging fibrosis' which is a step away from cirrhosis. Fast forward to 2015 and I have mild cirrhosis, fibroscan has jumped from 7 to 12 in under a year and my fatigue has skyrocketed. For me time was running out and although the government may eventually come to the party with treatments I feel that they might rather want to spend the money on a nice bomb for the Air Force. I cannot afford to wait and am deeply indebted to Dr Freeman and his team at the buyers' club. These people show that we can be a compassionate Nation. My meds are in the country and soon I will embark on a journey so many have successfully done before. Thankyou to all for sharing your stories.
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Anticipation and Thanks 4 years 2 weeks ago #1785

  • Joy
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Hi Rowan, welcome to the generic rebels club, and all the best with your treatment.
NSW Australia. Genotype 1b 30+ years, F0-F1, VL 91,000 Feb 2015 (740,000 in 2010), Tx naive.
Ordered Sof/Dac from Buyers Club 21 Sept, received 14 Oct.
Virus UNDETECTED at 3 weeks AND 12 weeks (EOT) AND SVR4 AND SVR12 AND SVR24. :-)
A thousand thankyous to Dr James and the amazing FixHepC team.
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Anticipation and Thanks 4 years 2 weeks ago #1789

  • Joan
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Hi Rowan I too am awaiting arrival of drugs..will join you on the journey.
GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015
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Anticipation and Thanks 4 years 2 weeks ago #1795

  • Bloot
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G'day Rowan
I'm eagerly awaiting my tx as well
My wife says she wants to fly to Tasmania and hug Dr Freeman and the buyers club people
I think she just wants a holiday lol

Good luck mate - you're doing the right thing
We'll keep each other up to date with how we are going
52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.
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Anticipation and Thanks 4 years 2 weeks ago #1798

  • Ann Bee
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Hi Rowan,
happy you found this great bunch. What genotype are you? It is amazing how quickly we are all clearing the virus with minimal side effects, certainly compared to the other toxic substances used. Good luck
Geno type 3a, infected approx 34-38 years ago. No fibrosis, treatment naive began chinese api daclatasvir/sofosbuvir 7/9/15.
17/12/15 finished treatment week 13 and virus Undetected
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Anticipation and Thanks 4 years 2 weeks ago #1837

  • Joan
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Hello Rowan
Welcome I too am awaiting to start treatment I look forward to sharing stories.
GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015
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Anticipation and Thanks 4 years 2 weeks ago #1838

  • LondonGirl
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Good luck Joan - You will be on the mend soon I'm sure.
All the best for minimal sides and a complete recovery.
LG

ps I am only 42 kgs - not on treatment yet.
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 HepC
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Anticipation and Thanks 4 years 2 weeks ago #1841

  • crazy8
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G'day to you Rowan, like you I have doubts about PBS listing of these drugs, but honestly, who wants to wait six months for a 'maybe' when good chances are in that time you could be cured and have all new problems to consider ..Like what toppings you want on your pizza. :whistle:

Anyways I start my Tx soon as well so good luck to all of us eh!, and I don't care about how this virus was contracted, nobody deserves to live with this hanging over their heads.
GT 3, F3, Contracted 1993 Tx Naive
V/L 1,267,000 AST 67 ALT 65 6/10/15
commence Sof/Dac (Mesochem) 6/11/15
AST ALT normal 24/11 *
*V/L UNDETECTED 24/11*
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Anticipation and Thanks 4 years 2 weeks ago #1851

  • Rowan
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Ann Bee

I am a Geno 1A.

I see from yr sig that treatment is going well. good luck.

Cheers, Rowan
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Anticipation and Thanks 4 years 2 weeks ago #1861

  • neilo
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Hi Rowan
My drugs should arrive shortly too. Best of luck with your treatment. I'll let our community know how I go.
Thanks again Dr Freeman and Greg Jefferys.
G1 Had since 1979-80?? Started Sof/Dac through Buyers Club on 5/11/15 Liver biopsy done 2005 and 2010 both F1. Fibroscan done 19/10/15 F0.
Week 4 viral load UND and Bloods normal
Finished Tx on 27/1/16. Bloods normal.
Week 6 SVR 10/3/16 UND Bloods normal.
Week 12 SVR 21/4/16 UND Bloods normal
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Anticipation and Thanks 3 years 10 months ago #6440

  • Rowan
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Hi Everyone.

It has been about 4 weeks plus on SOF/DAC/RBV. Initially I felt invigorated slightly and was coping well with medications. But since day 4 to now (day 34) it has been a roller-coaster of slight nausea, insomnia, lethargy, some aches and feeling OK for a while. Some nights I have an elevated temperature, lymph nodes enlarged and restless legs. (Rinse and repeat!)

Bloods were done yesterday and am waiting for results on 25th. Hoping that it is just side effects but have to admit feeling deflated when things didn't rapidly improve on day 17 as some have reported. I guess we are all different and each journey is unique.

Good luck to all and thanks again to FixHepC for making it possible.

(G1A, previously treated, ALT/AST in the 200s at start, 73 Kgs, VLoad unknown)
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Anticipation and Thanks 3 years 10 months ago #6451

  • LondonGirl
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Hi Rowan, Well done you and from what I read, yes, we are all different.

Also, from what I have read, the Ribavarin can make you feel poorly the longer you take it, tired and some nausea.
Have also read you must take it with some fat and many suggest you drink a natural pro-biotic yogurt drink to help the stomach.

Best wishes for the best outcome.
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 HepC
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Anticipation and Thanks 3 years 10 months ago #6454

  • DrJames
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The evidence favouring Ribavirin is fading. For GT3 it has faded. With GT1a you would need to be cirrhotic to need Ribavirin and even then 24 weeks Sof/Dac would be my personal choice due to the Riba sides.
YMMV
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Anticipation and Thanks 3 years 10 months ago #6455

  • LondonGirl
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Thank-you Dr F, I will not be taking Ribavarin.
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 HepC
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Anticipation and Thanks 3 years 10 months ago #6458

  • Gaj
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Hi Rowan,

I'm on the same meds as you and the Riba will be the main culprit. Due to delays in arrival of the Riba I started on the Sof/Dac first and added the Riba 16 days later. Definitely noticed the difference and fairly similar sides to you. Lethargy, intermittent aches, lots of insomnia and leg cramps a couple of nights. No nausea but as LondonGirl suggests I do take the Riba with some fat. Full fat milk on my cereal and fruit in the morning and whatever I'm eating in the evening although if it is low/no fat I will have a glass of milk or chunk of cheese at the same time. Having said that, I do feel much better overall than pretreatment, both physically and psychologically.

<edit> .....and it looks like a chat with my specialist soon about the latest evidence!
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
:cheer: :cheer: :cheer:
Last Edit: 3 years 10 months ago by Gaj.
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