Forum Replies Created
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It will be interesting to see the detail. But until then the good news is that it appears we will no longer be damaging people with interferon and the success rate will be at least 1.5 times as good. And that is good news!
G
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
Ah, good points there LondonGirl! My excuse is that I wrote it at 4:30am because of insomnia from these damn drugs!*
On a more serious note I do agree that we should be sharing how we feel on medication but both the sides (of which there are indeed some but, for most of us I suspect, they are livable) but also the improvements of which at least in my case there are many! What I am trying to say is that people shouldn’t stress out about this before treatment because I suspect in most cases they will find that it isn’t a big issue. It’s the far more reasonable hour of 6:00pm now and I have edited my post above a bit to try and reflect these thoughts.
And speaking of the improvements, in another thread recently someone mentioned that some of their joint pain had resolved with medication at which point I suddenly realised I hadn’t felt my usual hip/lower pain for……errr…..don’t know but it has gone!
Hopefully you will find the same.
G
* the Ribavirin dammit.
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
A big thank you to the Hepatitis Australia team.
G
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
Hopefully someone will invent a medication for insatiable greed soon! Then we could charity fund a compulsory “Compassionate Access” program for those most in need.
G
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
Thanks Sirchinenge, I agree with everything you say there.
So for newcomers especially, or others just starting out:
What most of us should keep in mind is that all the trials with Sof plus Led or Dac have shown that the great majority of people experience very few sides and mostly they are minor. And even at FixHepC, of the hundreds (thousands?) of people who have commenced treatment, only a few are posting of feeling and suffering from more than minor sides that are sometimes hard to distinguish from the virus itself, other health problems they have or maybe they could have caught a bug that was going around? Speaking of which, cold & flu tablets have sides too but most find the relief they bring is greater than the disease itself.
I suspect that a lot of this is because we are part of a great new social experiment of treating ourselves and the emotional roller coaster for a lot of us of finally getting a successful treatment where we previously thought there was none, or it was unaffordable. And certainly, they are nothing like Peg/riba.Perhaps if we were at the stage where we went to the doctor and he said in a bored tone “oh yes, your tests show you have Hep C, take one of these each morning and come back in twelve weeks so we can check that it has gone, you may feel a bit fluey and off colour but it’s nothing to worry about.” it would be different but we aren’t quite there yet. And people tend to worry about anything that is new.
As Sirchinenge says, that is not to take away from the minority like Dan who unfortunately do have bad sides or interactions with other health issues, some of which may of course be hep related.
G
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
Thermometer was cool but IMO would be nicer to have something here on the site saying how many have been helped to date. Maybe as part of the Charitable Donations section?
G
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 Chejai,
Yes, F4 basically means cirrhosis. On the Fibrosis scale in Hep C the cirrhosis F4 scale starts at about 14-15kPa and goes up to 75kPa so is a large range. See link below.
http://fixhepc.com/forum/experts-corner/122-fibrosis-cirrhosis-kpa-and-f-score-and-hepa-score.html
Like the rest of the F scale cirrhosis is also graded as to how bad it is and the major groupings are Compensated where your liver still functions well enough that you don’t have major problems from it as long as you look after yourself. As it worsens it becomes Decompensated and there are then serious medical issues all the way up to total liver failure. My understanding is that most stages can still be treated with the DAAs in the right circumstances on a case by case basis however I’m not a doctor so can’t provide informed advice.
If your brother is receiving care from his GP with only annual visits to Liver Clinic then it appears he is still compensated so doesn’t sound like he is too advanced for Tx but again, I’m not a doctor so those are just my thoughts.I didn’t go via Dr Freeman as I’m already lucky enough to have an excellent specialist who was very supportive in writing scripts for generics and then monitoring me.
If as you say, your brother’s GP is keen to get him help perhaps he would be prepared to provide your brothers full medical records for your brother to have a consultation with Dr Freeman and would then provide monitoring if Tx was suitable and prescribed?
G
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
Reading the article it seems that people who have hep c are more likely to have this as well. That may just mean it is transmitted by similar means. It seems they don’t know yet whether it is harmful or not which is why they are studying it more closely. We are hosts to many viruses at various times, some harmful, some not and some may even be beneficial to us.
http://news.sciencemag.org/2013/05/friendly-viruses-protect-us-against-bacteria
G
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
Great news LondonGirl! )
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
‘A bit clunky’???
inch: Now that is British understatement!
But a good read, thanks Alsdad.
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
C O N G R A T U L A T I O N S ! ! ! Lynne. Great news and must give you great confidence that your Tx is progressing well.
G
PS I was told today that my results will be available Wed or Thu latest, next week so looks like I won’t be anxious over Xmas.
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
Just to clarify my post above. I have never been lucky enough to reach UND, though was very, very low at end of trial in 2013 however it sprang back up quickly of which I was quickly informed.
I also reckon that what I was told by either the nurse or interviewing specialist (can’t remember which) would have been correct about my genotype and that given I was just diagnosed and anxiously trying to bring myself up to date on what the hell the implications of having this virus were, it was most probably me who made the mistake! And the question never came up again until today. I trust my specialist implicitly, he had been trying to fast track my treatment and when I proposed generics he readily agreed and prescribed treatment for me based on correct tested genotype and liver condition.
G
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 All,
I was feeling lonely in the G2s so thought I’d join a more trendy clique.
Meeting with Hepatologist this morning
Me: So, I’ve never known what subtype of G2 I am, is that on my file?
Prof: Ummm……you’re a 3a. What made you think you were a 2?
Me: Errr, that is what I was told when diagnosed 4 years ago.
Prof: Hang on…no here is your original test: 3a…..no doubts, no changes.
So, did the nurse or original interviewing specialist misread? did I mishear? was I confused with something else I was told at the time, after all there was a lot to take in? Buggered if I know but here I am now a F4 G3a
The good news is my week 4 results show significant improvement per my signature and my latest CT is all clear. So all those niggling little doubts at the back of my mind are gone and I’m kicking goals with my new team.
G
(To the 2 team; sorry guys, luv’d playing with ya but the threes just offered me more money so I sold my soul.)
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
pkhow said “but unfortunatly a few months ago relapsed 6 months after treatment finished.”
As someone who experienced similar two years ago, I have some understanding of how disappointing and demoralising it can be to struggle through the old Peg/RIBA regimes with their horrendous side effects only to find that the virus comes right back stronger than ever. But as you know these new DAAs are the real thing and they work on people with cirrhosis too as can be seen by my latest lab results! And the best part is they are a walk in the park compared with the old treatment.
As others have said, please insist your friend to at least talks to Dr Freeman or someone similarly up to date and supportive of their patient’s health rather than those who keep saying wait, wait, wait when it isn’t their liver that is getting more scarred and non functional every day. The sooner he gets treatment the easier and more successful it will be.
G
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
Thanks zhuk,
Yes, I was also thinking along the lines of pediatrics or similar. Should have highlited the “may” and ” considered” in my post and added “on medical advice”.
G
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
