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Waiting game 6 years 8 months ago #8666

  • PauliNO
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Thought i´d introduce myself after spending some time on the forum and learing from all your experience.

First of all a big thanks to those setting up this site and all the helpful people in here! It is such a relief to find other people struggeling with the same thing all over the world and helping each other out. It has not been more than 10 days since I discovered fixhepc and within this week my meds will hopefully be on their way :) :)

My hep c was discovered after a routine check-up showed high ALT scores in 2011. I think I had to see about three doctors before one tested for hepc. To date I still don´t know where i contracted it and I´ll probably never find out.

The diagnose was a bit of a shock and I´ve only told some very close friends about it. The stigma that goes with the disease along with the fear of infecting my close family has been the worst part for me. I have been feelng tired over the last years, but I suspect that is mainly due to the sleeping habits of my now 3 and 5 year olds...

After seeing a couple of infectin specialists I ended up seeing a gastro specialist that was quite knowlegable about hepc. I was told that new medicines where just around the corner so I shouldn´t bother with the old treatment regime. In 2013 I was about to come one a trial of new medicines but, the trial was suspended.

Once the new medicines where starting to come out in 2014, the price tag was the showstopper. The norwegian healthcare system covers most treatments, but the Gilead pricing was too hefty. The current system requires a fibroscan at 7 kPa. My readings went from 4,6 - 4,9 - 5,4 - 6 and then down agian to 5,6... Last summer my good doc signed a prescription and an application for Viekirax/Exviera, but it vas denied.

Last week just days after I discovered this site my appeal was also denied.

I´ll keep you posted on how things move foreward with my quest to get genercis into the country and start my treatment.

That was a lot of words.... But I´d like to send a big thank you to LondonGirl for being extreemly helpul in the process so far!
Genotype 1b - Tx naive
Pre Tx Vl 8 900 000, Alt 52
2 weeks VL160
4 weeks VL 43
7 weeks VL UND
EOT UND
SVR 12 UND

Startet Tx 6. feb 2016 Hepcivir-L (Generic Harvoni from Cipla)
(REDEMPTION trial)
The following user(s) said Thank You: DrJames, LondonGirl, Chejai, Ariel

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Waiting game 6 years 8 months ago #8667

Aww thanks Paulino, Looking forward to your posts & seeing you get on the road to better health :-)
I remember only too well the shock of diagnosis, the stress and worry, then finding the good people here, some who showed me such kindness I will never forget.

Wishing you the very best sucess in your treatment.
LG
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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Waiting game 6 years 8 months ago #8671

  • Debs
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Welcome Paulino, Love your avatar!
You have come to the right place, lots of supportive and knowledgeable people on here,
All the best, you will be just fine!
Debs xxx
Geno 1a, F1, tx naive, had it 35 yrs.
Started Cipla HepcvirL on 12/01/16
Starting VL 490,000
At 16 days in <15
4 week results: UND
8 week results: UND
5 weeks EOT alt 25
SVR 15 - Not Detected
6 months EOT - Not Detected

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Waiting game 6 years 8 months ago #8672

Welcome PauliNO your in the right place good luck :)
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV

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Waiting game 6 years 8 months ago #8676

  • Joy
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Welcome Paulino from Norway! All the best with your treatment, you're in the right place for support and information. #flower
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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Waiting game 6 years 8 months ago #8684

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Hi PauliNO,

Welcome! We hear you about the stress and worry - so good to see another person taking control of their destiny.

Cheers :cheer:
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24

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Waiting game 6 years 8 months ago #8702

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Hi PauliNO,

Not much waiting left. :)

Best wishes for your journey to SVR and keep us updated with your progress. I think you are the first here from Norway so no doubt others will be watching and learning from your example. :+1:
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:

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Waiting game 6 years 8 months ago #8706

Welcome Pauli

As others are saying, each time one of us puts our story here others follow. Bring Norway Pauli.

Kevin Hilde
The following user(s) said Thank You: LondonGirl, Jimmy6429

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Waiting game 6 years 8 months ago #9065

  • PauliNO
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Hi, and thanks for all the feedback!

Some good and some bad news today. FixhepC recieved the the money today, three days after it left my account. Bad news is I paid in aussie dollars not the US type :blush: :blush: . I transferred the difference today so they should recieve full payment by wednsday next week.

I´ve also secured an appointment with a specialist doctor next week and will get a full set of start of Tx tests. If I´m really "lucky" i´ll score a 7 on the fibroscan and get Harvoni treatment sponsored by the state B) Hopefulle the Dr will follow me thorugh treatment. So far I´ve just informed them that i plan to buy sof/led and start treatment in a couple of weeks. I´m not sure if i´ll tell him that the sof/led is generic and semi-smuggled into the country or if I´ll pretend to have re-morgaged my house to buy Harvoni. Any advice?
Genotype 1b - Tx naive
Pre Tx Vl 8 900 000, Alt 52
2 weeks VL160
4 weeks VL 43
7 weeks VL UND
EOT UND
SVR 12 UND

Startet Tx 6. feb 2016 Hepcivir-L (Generic Harvoni from Cipla)
(REDEMPTION trial)

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Waiting game 6 years 8 months ago #9066

  • PauliNO
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Gaj wrote: Hi PauliNO,

Not much waiting left. :)

Best wishes for your journey to SVR and keep us updated with your progress. I think you are the first here from Norway so no doubt others will be watching and learning from your example. :+1:


I have been trying to get the word out at the norwegian forum hepatitt.org about fixhepc.com, but my post never appeared on the site. I posted as a guest and I´ll probably try a bit harder to get the word out there as I learn more about how the redemption trial and transport works out.
Genotype 1b - Tx naive
Pre Tx Vl 8 900 000, Alt 52
2 weeks VL160
4 weeks VL 43
7 weeks VL UND
EOT UND
SVR 12 UND

Startet Tx 6. feb 2016 Hepcivir-L (Generic Harvoni from Cipla)
(REDEMPTION trial)

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Waiting game 6 years 8 months ago #9069

Hi Paulino, I wouldn't say much at all about anything. If he asks , just say licenced Gilead approved generic medicines from a large international respected drug manufacturer.

You are an adult who has made an "informed choice" and would like to receive care even if he can't condone your pathway

Good luck with it all and hope you get your medicines soon.
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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Waiting game 6 years 8 months ago #9078

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Hi Pauli,

Thanks for letting us know of the Norwegian forum Hepatitt.com. I just had a look and while I don't read Norwegian I did see a comment from someone (partly in english) about going to India and they also made mention of FixHepC which didn't seem to be censored. You may want to try joining their forum as often guests are much more restricted in what they can say than members and the more who talk about something like this the better. They may also be able to give you guidance as to how supportive specialists are in your country or even which ones are or are not. ;)
I can't advise on what you tell your specialist as that is your decision based on what you believe is best for your health and your conscience. I told mine and he was supportive but I also had the back up plan with alternatives (GP2U) if he did not agree.
One thing you may find useful in your discussions to provide support for your decision is that the Redemption trials have just been listed by the U.S. government's National Institute of Health in their clinical trials database - www.clinicaltrials.gov/ct2/show/NCT02657...rm=redemption&rank=1

Best wishes for your successful treatment and please keep us informed of your progress.
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:

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Waiting game 6 years 8 months ago #9137

  • Chejai
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Hi PauliNO, welcome and congrats on being proactive with your health and wellbeing :)
Good Luck with your Tx, you will find an abundance of info and compassionate, supportive help on this forum. There really is a lot to explore on the site so don't be afraid to ask questions and people will guide you to where/how to get your answers. Share as much or little as you like about your journey - there's no judgement here #love
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec '15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb'16 VL UND #woohoo!
AST 24
ALT 26
GGT 50H
The following user(s) said Thank You: Ariel, splitdog

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Waiting game 6 years 8 months ago #9164

  • PauliNO
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Hi Gaj

You did a better job than me finding my own post!! Good thing it was not cencored. It will be interesting to see if other norwegians will join this site as well.
Genotype 1b - Tx naive
Pre Tx Vl 8 900 000, Alt 52
2 weeks VL160
4 weeks VL 43
7 weeks VL UND
EOT UND
SVR 12 UND

Startet Tx 6. feb 2016 Hepcivir-L (Generic Harvoni from Cipla)
(REDEMPTION trial)
The following user(s) said Thank You: Gaj

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Waiting game 6 years 8 months ago #9181

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Mrmumbai? :lol: :+1:

Good to see that it hasn't been deleted.
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:

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