- This topic has 54 replies, 23 voices, and was last updated 8 years, 4 months ago by
.
-
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!
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
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 defeatedGT 3 – about 28 yrs with HCV
Welcome Paulino from Norway! All the best with your treatment, you’re in the right place for support and information.
Hi PauliNO,
Welcome! We hear you about the stress and worry – so good to see another person taking control of their destiny.
Cheers
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.
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, 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
. 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
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?
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.
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.
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 – https://www.clinicaltrials.gov/ct2/show/NCT02657694?term=redemption&rank=1Best 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
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
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 50HMrmumbai?
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
- You must be logged in to reply to this topic.