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PBS Pricing - Take a deep breath... 8 years 2 months ago #12150
| 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!!! The following user(s) said Thank You: Ariel |
PBS Pricing - Take a deep breath... 8 years 1 month ago #12168
Hi FF, 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 Xxx Ariel Gen 1a 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 Cured SVR12 Dysplasia Adenomas RemvdAug '16 SVR24 UND ALT11AST16 ColonoscopyClear Nov17 LumpectomyClear ‘18 LithotripsyCytoscopyBiopsy 4/18 | |
PBS Pricing - Take a deep breath... 8 years 1 month 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 The following user(s) said Thank You: Ariel | |
PBS Pricing - Take a deep breath... 8 years 1 month ago #12172
| 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. Fingers crossed. F49HepC25ysGT1a "mild" Harvoni 12 wks Brisbane, Australia The following user(s) said Thank You: Ariel |
PBS Pricing - Take a deep breath... 8 years 1 month ago #12225
| I started the meds yesterday btw Ariel Harvoni 12 weeks. F49HepC25ysGT1a "mild" Harvoni 12 wks Brisbane, Australia |
PBS Pricing - Take a deep breath... 8 years 1 month ago #12229
Great news FF! Fantastic to hear that you personally have been able to start 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 The following user(s) said Thank You: Ariel, flyingfox66 | |
PBS Pricing - Take a deep breath... 8 years 1 month ago #12231
| Thanks Gaj! 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! F49HepC25ysGT1a "mild" Harvoni 12 wks Brisbane, Australia The following user(s) said Thank You: Ariel |
PBS Pricing - Take a deep breath... 8 years 1 month ago #12232
You're just starting? Well, good luck. You too will clear. And maybe, just maybe, you'll become conservative when that brain fog lifts...... This email address is being protected from spambots. You need JavaScript enabled to view it. Genotype 3 VL 4,100,000 ALT 101 AST 71 Treatment Naive Started Sof/Dac Jan 12, 2016 VL= <15 4 weeks in. AST/ALT normal. VL=UNDETECTED 8 weeks in. SVR4= Virus back. 3,300,000 Started generic Epclusa Sep. 23, 2017 4 weeks in <15 *Detected. 12 weeks in <15 *Not Detected. 16 weeks in <15 *Not Detected. Finished 24 weeks treatment 3-17-18 SVR5 <15 Not Detected. SVR 20 <15 Not Detected. SVR 44 <15 Not Detected. Thank you Jesus. Thank you Dr. James | |
PBS Pricing - Take a deep breath... 8 years 1 month ago #12233
| When the brain fog lifts I am going to be truly dangerous F49HepC25ysGT1a "mild" Harvoni 12 wks Brisbane, Australia |
PBS Pricing - Take a deep breath... 8 years 1 month ago #12234
Good luck FF Yes ty to Dr J he is awesome it's damned hard to get a script Well done and enjoy tx its pretty easy The time slips by so fast you will be stoked Splashes. Ariel Gen 1a 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 Cured SVR12 Dysplasia Adenomas RemvdAug '16 SVR24 UND ALT11AST16 ColonoscopyClear Nov17 LumpectomyClear ‘18 LithotripsyCytoscopyBiopsy 4/18 The following user(s) said Thank You: flyingfox66 | |
PBS Pricing - Take a deep breath... 8 years 1 month ago #12254
This specialist is out of touch. Each script is a PBS "supply" and incurs the $6.20 or $38.30 charge. So Sof + Dac + Riba would be $18.60 or $144.90 a month. Still a great deal! YMMV | |
PBS Pricing - Take a deep breath... 8 years 1 month ago #12327
Yes, it is a great deal. We need to send some politicians on field trip to the land of Oz. This email address is being protected from spambots. You need JavaScript enabled to view it. forums.delphiforums.com/generichcvtx G 1a F-1 Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil 11/17/15 4 wk lab ALT 17 AST 16 <15 11/18/15 Started Harvoni 12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND 1/14/16 Fin. Tx 7/07/16 UND SVR 24 | |
PBS Pricing - Take a deep breath... 8 years 1 month ago #12953
Sorry I'm a bit late here FF, so stoked for you that you got the PBS meds and have started them now - outstanding!
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 AST 26 ALT 26 The following user(s) said Thank You: Ariel | |
PBS Pricing - Take a deep breath... 8 years 1 month ago #12961
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 this . And he's going to do another PCR for me at the 6 month SVR mark. The liver clinic wanted to wait another year. Huon Valley, Tasmania Hep C+ since 1980s Genotype 1b F3/4 VL 480,000 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 | |
PBS Pricing - Take a deep breath... 8 years 1 month ago #12988
Thanks Chester 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. fixhepc.com/forum/retreatment-corner/764...eatment-failure.html 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 AST 26 ALT 26 The following user(s) said Thank You: Ariel | |