Thanks FF You sure do have something to smile about.....good luck
Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
flyingfox66 wrote: Also I would say to your friend, seek out a HIV/sexual health specialist GP clinic...they will most certainly be prescribing...and all it will probably need is a phone call to their specialist to get the ball rolling.
My friends are already in Liver Clinics in a huge capital city hospital as was I before I realised this roll out was going to be a mess, was sick of lobbying big pharma, the Australian Government and the Hep Orgs, and bought my meds yes with a lower VL than yours even. At F0 and an organic lifestyle, like you I was in good shape especially after the peginf debacle!
No booze no smoking no nothing
I'm clear now UND
I am now pissed off that under 18 are still only allowed access to interferon based therapy did you read that!!
One surfer mates son did clear on peginf during teenage but what a horrible thing to go through; just ask me I was pumped full of the stuff for no good reason, as I had no knowledge of HepC at diagnosis etc and a family full of doctors have brainwashed me since birth to just accept
Not these days!
My friends don't need another clinic hun ty anyway for your kind thoughts but they do need the promised roll out like yesterday!!!
So far no word of promise yet one is F4 with varices and more and the other don't want to go into it all v sad
They have no money left thanks to HepC
They also live in another state away from me but have like Lynne and I kept seats warm in the largest closest liver clinic for years
I'm wondering too, re your script yesterday did you get it in QLD? If so was it easy to have filled? Like at a pharmacy? I'm wanting to write to these two friends because seriously this is very depressing for them FF
ANY seeds of hope will be good
One has just had more bad news so please update babe ps they are not in Qld
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
PBS Pricing - Take a deep breath...
7 years 9 months ago #12171
I received this information from my clinic regarding the PBS roll out in regional Vic, so we are already behind it seems.
'.the phone calls are coming thick and fast, we will not be actually starting anyone until the end of the month...a couple of reasons. There is lots of training planned for this month AND I am still a Dr down'
gt 1a VL 6m
F2/3 FibroScan - 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc
I feel your pain Ariel
I am also trying to help a cirrhotic friend negotiate the swamp of a major city liver clinic.
It s not easy for people with brain fog to get organised, and for some bizarre reason her Hep nurse has chosen this as a good time to take a holiday. My public specialist seemed to think that the hospitals wouldn't be organised to start prescribing till April.
This is why I got organised and I can at least feel good that I have freed up a Specialist appt at the public clinic.
However I didn't really spend much money in the end, apart from the fibroscan which it turns out you don't actually need, as I have heard there are prescribing GPs on the ground willing to do it just with blood tests.
The problem with the HIV GP clinics is that they generally don't bulk bill, but I still only paid a total of $80 on two appointments.
If your friend is in Sydney they should try Holdsworth House (I went to their Brisbane branch and they were very organized)...as long as they have some evidence of cirrhosis and a blood test within the last six months...that is really all they need to prescribe.
Presumably someone with varices will have plenty of recent tests. The only problem I can see is that they might need some special monitoring, but surely the GP can consult with their public specialist somehow. Its early days yet so hard to know for sure, which is why giving any advice is difficult.
Once they get the script go with it to the pharmacy that the HIV clinic recommends.
Mine is ringing this morning with hopefully pick up happening later on.
Harvoni 12 wks
And thanks to Dr Freeman for being willing to prescribe for me when no-one else was. I'm sure its his courage and integrity that has forced Gilead to give us such a good deal.
And thanks to you all for sharing your stories and advice...you are a wonderful bunch of people.
I am a very lucky person in a very lucky country!
Harvoni 12 wks
Sorry I'm a bit late here FF, so stoked for you that you got the PBS meds and have started them now - outstanding!
Lynne-Francis-facebook wrote: Hi all I just have a general question. If (someone's treatment failed, can they still go through Dr Freeman to get another course of treatment at the PBS prices, I watched his interview on the FB page and got the impression that yes, patients could go through GP2U and they would organise a clearance from a specialist to get the meds. Just curious more than anything
A question I've been pondering too Lynne, in 'worst-case-scenario' mode. Surely the Govt's priority would be to treat those who have not yet been prescribed DAA's? I can't see how those who might be needing retreatment would get ahead in that queue (so tto speak) Added to the fact that doing so without finding out if anyone has has unfavourable genetic markers would be kind of a waste of Govt funds - an expensive test they are unlikely to roll out I would think. Maybe I'm missing something here, I dunno
GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
I had the doc lined up to prescribe to me under the PBS in the case of relapse. Figured it'd be a lot quicker and easier than going through a liver clinic. And he posted
And he's going to do another PCR for me at the 6 month SVR mark. The liver clinic wanted to wait another year. I don't think so. I'm confident but I'm not that confident.
Huon Valley, Tasmania
Hep C+ since 1980s
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
Yeah I don't imagine my liver clinic would be too keen either, not when there must be a bit of a queue stacking up by now lol
I guess its a waiting game with SVR in any case huh. I'm not sure what avenues there would be for retreatment under certain circumstances; as Dr James says it might be best just to wait for future meds to become available if you are are unlucky enough to relapse, and in a clinical position to be able to do so.