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Ariel takes the Plunge 8 years 1 month ago #12906
I am so sorry for how you are feeling Chejai! The hep C problem is in good hands and you are a fast responder, UND at 4 weeks! So hang in there, all will be fine. You will sort out all the problems, one at a time! I wish you all the best and only UND! HCV since I don't know. Diagnosed in 2010. GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive, started 12 wks Twinvir on 06.12.2015. Feeling great and grateful virus not detected 06.02.2016 & SVR24 This email address is being protected from spambots. You need JavaScript enabled to view it. | |
Ariel takes the Plunge 8 years 1 month ago #12908
Yay! EOT is approaching! Don't worry you are a fast responder too, almost 5 weeks UND! And you had little liver fibrosis F1-F2! Happy EOT and only UND! I wish you and your daughters all the best! Edit: Oops ! Sorry, my mistake with fibrosis! Your signature is clear, F0-F1! HCV since I don't know. Diagnosed in 2010. GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive, started 12 wks Twinvir on 06.12.2015. Feeling great and grateful virus not detected 06.02.2016 & SVR24 This email address is being protected from spambots. You need JavaScript enabled to view it. The following user(s) said Thank You: Gaj | |
Ariel takes the Plunge 8 years 1 month ago #12913
I'm very sorry to hear you are having such a rough time, Chejai It does sound a lot like your pre-existing conditions, definitely. It must be difficult especially since you were feeling relatively good at the start of tx....hang in there seems like a platitude but I really mean it mate! So being Gen 3 inclines you towards extending the course? Since you were UND like me at 4 weeks, just wondering. I know that I will not be extending or retreating, in any case no matter what. Re the PBS though, I don't think anything has really filtered through as yet - my recent extended hospital experience suggests than no one has heard of these meds, at least so far at the coalface. Maybe its different with a GP, you might want to start making some enquiries now if that's the way you're leaning atm. All the best Chejai - seriously it sounds awful what you are going through. Fingers crossed you will find some relief for it. 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 | |
Ariel takes the Plunge 8 years 1 month ago #12921
Thank you so much for your kind wishes I'm doing fine around 19 days to go I think I had bloods done again yesterday by my GP YES the previous UND was taken at Day 32 Just to say no I have never been F1-2 I'm 5.6 Kpa last time which is F0 I don't want to be written up as F1-2 never have been. Highest ever reading was 6.0 which is F0-1 Here are the charts but it is in my signature the correct and most generous F score even allows for my highest reading Ariel Not an F2 Not my signature hepatitiscnewdrugresearch.com/fibroscan-...he-scoring-card.html 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: isaing4 | |
Ariel takes the Plunge 8 years 1 month ago #12924
Hi zhuk & Chejai, Gt3 often presents as a bit more aggressive and difficult to treat than the other genotypes even if initial RVR is similar. The usual recommendation is to extend the treatment somewhat which seems to bring the success rate up to something similar to the other strains. I'm also sorry to hear of your issues during treatment Chejai, I don't think they can just be put down to sides so would advocate getting things like the headaches checked. Some may be pre-existing conditions that won't resolve with EOT but many could well still be HCV related and just take longer to heal. After all, while these new medications are miraculous it is a lot to expect 35 years of your body fighting the virus to just be cured in 10 or even 24 weeks. Some symtoms may take much longer to go away or fade and so require watchful patience. 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: zhuk | |
Ariel takes the Plunge 8 years 1 month ago #12926
Ariel, Looking forward to hearing the results of your latest tests. 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 | |
Ariel takes the Plunge 8 years 1 month ago #12930
Hi Gaj the bloods were: VL assay range 15-100000000 PCR RNA FBE LFTS 19 days left and public hospital wrote up only EOT and post tx 12 weeks GP doing the extras, better assay than hospital. More vigilant too. Just a last full check b4 EOT expected. He will also order same earlier after EOT. Big hospital, lots of people waiting and least monitoring but at least they see me they didn't have to after all I bought my meds here. I'm sure my result will be similar to the one taken at that path on Day 32 after Hosp only wrote up a VL no PCR for the 4 week one which if you check back in my thread came back unquantifiable That's why I went through my GP and he sourced a good path and did both quantitative and qualitative Nice day today here Cheers 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: isaing4 | |
Ariel takes the Plunge 8 years 1 month ago #12938
Thanks Ariel, useful to know there is a local lab with that capability in case I need it for any 'confidence' tests after EOT. It is a superb day, but have to drag myself up to Prahran 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 | |
Ariel takes the Plunge 8 years 1 month ago #12942
I apologize for my mistake! I have edited my previous post with that! I am really very pleased for you, being F0-F1 . Thank you for the link with fibroscan scoring! I just wanted to say that you are a quick responder, UND at 32 days, and odds are on your side for SVR! Good luck with your bloods! I wish you and your daughters all the best! HCV since I don't know. Diagnosed in 2010. GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive, started 12 wks Twinvir on 06.12.2015. Feeling great and grateful virus not detected 06.02.2016 & SVR24 This email address is being protected from spambots. You need JavaScript enabled to view it. The following user(s) said Thank You: Ariel | |
Ariel takes the Plunge 8 years 1 month ago #12943
Weight gain? Noooooooo Small price to pay Genotype 1a Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!! Harvoni treatment, started 19 March 2016 4 week results Bilirubin 12 down from 14 pre treatment, Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47, VL <15 down from a lazy 6 million or so EOT Results Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND 12 Weeks post EOT Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND Cured baby | |
Ariel takes the Plunge 8 years 1 month ago #12973
Hi Beaches Gaining weight has been a good thing for me. I have had a rough trot with peginf tx leaving skinny legacy and this is the first time in four years that I have successfully overcome that issue. I was truly skeletal from that tx and despite effort such as sport, growing my own food, taking ensure plus when urgent, eating no sugar, no true appetite suppressant foods, no alcohol and doing yoga etc focusing on weight gain through solid balanced diet, rebuilding muscle deteroriated completely by peginf I was never truly "hungry", and had to force myself to eat. It was like an induced anorexic state that I had to mindfully fight off, all part of my peginf ride. During that regime I often vomited more than a dozen times in a day. In hospital they worked hard to fatten me a bit so I could get home again. So now I am astonished at my appetite it's returning. Somedays I am absolutely starving no matter how much I eat!!! I'm not really up with this as a general sx for all patients but for me it's a godsend. At clinic they ask if I had any nausea! Hardly, more like pass the food now thanks We are all different here, and so my happiness over my weight gain is just a personal anecdote, a sign things are working. That's what is clear about these meds, everyone seems to present with different sx at various times, some have none, but the common thing is that they work and almost everyone is cured. Most people report good progress in many life areas. I think that taking away the anxiety of living with hepC is going to be the best feeling I have had in a long time and I can see the good outcome now. Thanks to this team at FixHepC Looking back before I got my meds it's a different place and I don't want to go back there. We are so blessed to have access to treatment that really works. Sending love 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: LondonGirl, mgalbrai, Gaj, Lynne-Francis-facebook, beaches, isaing4 | |
Ariel takes the Plunge 8 years 1 month ago #12999
Wow you have really been through it! I'm even happier now that I decided not to try the interferon / riba treatments. Sounds like you are loving feeling 'normal'. I can sense the joy in your post. From what I've heard that treatment is brutal. I thought tomorrow was going to be D day for me but apparently no. Tomorrow is going to be baseline bloods and fibroscan. Then when the blood results come back I'll get a script. I've been asking where I can get the actual meds from but no one is telling me. No doubt I'm over complicating things but I imagine that not all pharmacies will be stocking Harvoni or whatever they decide to prescribe. I should not complain. After all I chose to wait for the treatment to become available on the. PBS but now it's just so close! Genotype 1a Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!! Harvoni treatment, started 19 March 2016 4 week results Bilirubin 12 down from 14 pre treatment, Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47, VL <15 down from a lazy 6 million or so EOT Results Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND 12 Weeks post EOT Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND Cured baby | |
Ariel takes the Plunge 8 years 1 month ago #13004
Hi beaches, I suspect that very few if any pharmacies will carry these in stock given the label pricing. They will likely order in on presentation of a script. You may need to check around your area to see which chemists are prepared to do that. Likewise those who are wanting to fill repeat scripts should probably present them to the pharmacy a few days to a week prior to running out of the previous one to ensure continuity of treatment. 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 | |
Ariel takes the Plunge 8 years 1 month ago #13112
A TOAST TO MY BLOODS Little boast From the coast With the most Just repeat after me Ariel doesn't G&T Her FBE history Says 17 GGT WOOHOO first bloods update in from Tuesday Alt still a magic 18 blah blah etc and now also the GGT is so good 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 | |
Ariel takes the Plunge 8 years 1 month ago #13117
Hi Gaj, I went to my local pharmacy. They are good people.They are getting it for me. In fact they went above and beyond with a bit of begging on account of I missed the supplier's midday cut-off Genotype 1a Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!! Harvoni treatment, started 19 March 2016 4 week results Bilirubin 12 down from 14 pre treatment, Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47, VL <15 down from a lazy 6 million or so EOT Results Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND 12 Weeks post EOT Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND Cured baby | |