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Welcome Cameralady,
Great to hear you are underway! Lifelong under the shadow of the dragon, what a journey. I will be keen to hear how you go evicting it!
Also good news about your nurse. The collective wisdom is, take at same time every day, drink plenty of water, try to surf over any ups and downs- you may not get any- and keep in touch! I came out from under after 30 years of HCV, (thanks to fixhepc) and it is a wonderful feeling.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
Being tearful, a bit buzzy, is really common, I had it and heard it a lot- it feels like a thinner skin. There is so much going on, when you have had it for ages, I know what that is like- a whole new normal is going on in our bodies. I look at it as the fight going on, us winning it, as we shed virus in those first amazing weeks. But overall for me, those effects were more interesting than really a problem. Other people get none, and then worry it is not working. Good luck! sounds like yours is working.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
yes is really common…. I certainly had it off and on with treatment, and heard of many others who do too. Feels like a few days after a biopsy- upper right. There are no nerves in the liver, so they tell us it is the surrounding tissue that causes pain, but for myself it really feels like it is within the organ. I think it is the virus dying, shedding, liver changing shape with repair- is a good thing, not bad! ALT is your best news. Try visualise the HCV invader withering and dissolving when you feel it. Drink a glass of water to flush out the remnants. Good luck.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
dointime wrote:Anybody who has been correctly diagnosed as having liver cirrhosis will not find that it is gone right after achieving SVR with a 12 or 12 week treatment of the new DAAs. Or should I say, I have never heard of that happening. The liver is an organ that can regenerate itself. Some people who have had cirrhosis have reported that their level of fibrosis did improve some over time, but they were talking about years, not months. I have heard of others who were not cirrhotic that their liver fibrosis improved a lot over time, as measured by fibroscan.
dt
Hi logged after being away for a while… re this reversal of cirrhosis, I can report that I had it 18+ years. When I started Daa’s late 2015 it was urgent, with a Kp of 40. At end of treatment had halved to 22, still high but good result. At 24 weeks SVR, down to 9.5 so F2-3 which I had thought impossible. All tests done by same expert on modern machine on 12 hour empty stomach. I keep feeling better so I think when I go back again in a couple months will be lower still…… I didn’t know this was possible either, but it is.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
Hi Chong, Malaysia is ok I think for Redemption trial- generic medication, here is the ink http://fixhepc.com/home/redemption-etrials.html
I am a patient not doctor but they will advise- I took 24 weeks sofosbuvir and daclatisvir which cured my genotype 3- and cirrhosis. Good luck.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
Good to see Prof Gane’s stance for patients in Auckland too this week:
http://www.drugfoundation.org.nz/matters-of-substance/nov-16/hep-c-hope
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
More from New Zealand- it is not over here yet, ironic that Tina and I live where there is the most clinical resistance in NZ.
The 5 min video is gold, doesn’t come up on my phone versionhttps://www.odt.co.nz/news/dunedin/health/sdhb-slated-hep-c-stand
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
Hi all,
I’ve been quiet lately, trying to concentrate on exams coming up. Checking in to share my encouraging news for those who are F4- cirrhosis is reversible! Had a scan yesterday, has gone from 40kp pre treatment, was 22 at end of tx, and now, coming up SVR 24, has dropped to 9.2kp.
So – I had hep C 30 plus years- don’t now. I had cirrhosis, 18 plus years- don’t now. Takes some getting used to. I realised that my specialist, same guy, has given me 2 biopsies, about 20 or more scans, 2 rounds of interferon/rib- this was the biggest, fastest drop he has seen. He must have seen so many recover on interferon- yet the liver doesn’t seem to recover like it has on DAA’s. They must set off regeneration somehow, not just kill virus.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
I agree with Gaj too, partly or mostly, because we do need entities to actually take blood, do fibroscans, print leaflets, help people get generics etc and we may as well, in some cases, use existing structures and services. But it is true to say- any advocacy group that is not pretty active telling people how to get cured, or investigate how to get cured, and telling people about generics is not doing its job. Because it is urgent, lifesaving information.
So, shine a light on them, examine the agenda and where possible get them working for the people they exist for. I wanted more from the NZHF, then they put up that great post I put in the activism thread which is really useful. It comes from the EASL results, it is becoming irresistible. It is a clear test- put it to these organisations now: “Do you support people getting information about generic medication?” if yes, then they have a role to play. If no, they are no use to people so it is a money-go-round. Gilead etc use their funding of charitable groups to avoid tax too and try to appear like good corporate citizens.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
GF- It is an animation- these birds are long extinct. New Zealand/Aotearoa was the last place in the world for humans to settle, and these moa are thought to have only survived 70-90 years after the arrival of the Maori, long before the marauding Europeans and many more species. There is an archaeological site just north of here where they estimate there is the remains of 50,000 or more moa. There was nothing else here but seals to hunt.
And Fretboard- all of that public display of remains is not cool here anymore, was offensive to the customs- all body parts have been brought back here from museums and interred properly respectfully etc BUT I did help once with the recovery of koiwi ( human remains) from a burial site on an eroding cliff- was so interesting, may have dated from that period as above of first settling. Perfect teeth.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
Kiwi reggae all stars version of Stand Up https://www.facebook.com/1735226546747969/videos/1745944932342797/?pnref=story
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
NZHFnotice.pdf
Not sure where to put this…. here will do. I was very pleased with this quote from the New Zealand Hepatitis Foundation’s recent publication talkinghepC , Winter 2016, p7 and I think it is a really good endorsement beyond NZ, a kind of international reference, and contains useful information, so I typed it up… here it is pasted in, can be copied and pasted for use anywhere, also have attached as a full page sort of noticeboard/poster“What if I do not qualify for the funded treatment?”
Personal Importation, NZ Hepatitis Foundation Clinical Director Alex Lampen-Smith discusses:
“In the 2016 Autumn edition of talkinghepC, we discussed personal importation as a means of accessing affordable generic versions of the lifesaving DAA’s.
Many people in New Zealand have personally imported treatment. In April 2016 Dr James Freeman, of the FixHepC Tasmanian Buyers’ Club, received a long-standing ovation following his presentation at the EASL conference in Barcelona, which presented the high cure rates, (>90 per cent) of cheaper generic medications.
The international liver specialist community recognises the way in which he is helping make generic DAAs available for sufferers of hepatitis C at a fraction of the cost: the approximate cost of 12 weeks of treatment is $2500 (NZ) . If you are interested in personally importing treatment please ask your GP to refer you to a specialist for assessment to ensure you import the correct combination and length of treatment”.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
Brilliant! good luck, haere ra as we say in NZ
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
I think recaption the last 2 frames if you can… fixhepc to the rescue, something like that.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
Great day Tina, it has gone so fast, lead us on with that SVR24
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
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