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2B HERE 7 years 5 months ago #22473
Hi Thirdtimelucky I guess another piece of good news is that you no longer have to rely on the NHS because for not much money you can access geeric treatment. I'm hoping one of the new treatments works for you 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 | |
2B HERE 7 years 5 months ago #22474
Hi ThirdTimeLucky Hoping you get onto your next tx and sort this out for good yes excellent generics are available and progressively newer more effective meds to treat more difficult cases are becoming increasingly available too. I have seen a lot of really promising information from Gaj and Mgalbrai and others here re new meds so I hope that gives you hope. Sending you splashes of goodvibes for the future and empathy for relapse but most of all strength in your challenge. Love from 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, Lynne-Francis-facebook, beaches, Donna, thirdtimelucky? | |
2B HERE 7 years 5 months ago #22510
| Really Thanks. Waiting for Test results. NHS seem reluctant to even consider anything not on their approved list. I am discussing providing the drugs and being monitored by NHS. This is hopeful once type of medication is decided? Should have results soon. TTL dw The following user(s) said Thank You: LondonGirl |
2B HERE 7 years 5 months ago #22511
| Great News. dw |
2B HERE 7 years 5 months ago #22518
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Unfortunately, this is true, in general. But... Many will keep an eye on you, albeit "quietly"... You can't really blame they if it's against the rules, but often they will help out when the time comes. My advise, is not to push them too hard on it in advance, just turn up to next appointment and tell them you have started treatment. It would be rather unethical of them to refuse to monitor and there is a "duty of care". There have been some very supportive GPs . Mine was. I took Dr Freeman's GP cheat list along with me and told my GP I had done much research and "made an adult informed choice" and was "taking licensed medicines via a trusted supply chain on an official trial". He agreed. I was so nervous asking, but he was great about it. I think some GPS have more leeway, but the tests they order often aren't as thorough. Good luck. GT1a Dec14 F2/8.7 VL 900000-2.5M Jan16 Hepcivir-L MonkMed/Redemption Baseline: VL 913575 Alt 76 Platelets low Wk2 VL1157 Alt 23 DET Wk 8 VL 32 Alt19 'In the slow lane' June16 Fibro 5.7 F0/1 LIF 1.5 Wk 11 VL<12 Alt 13 Det/Unq Extending tx 12 wks Mylan Sofo/Dac MonkMed Wk 14 VL <12 Det/Unq Wk 16 VL UNDETECTED Wk 22 + 4 Wks Sunprevir FixHepC Wk 24 UNDETECTED Alt 13 Wk 12 post tx SVR12 Wk 26 SVR24 Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC |
2B HERE 7 years 5 months ago #22523
Linky to the GP Cheat Sheet that London Girl mentioned. fixhepc.com/getting-treated/how-to-do-it/doctors.html 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: LondonGirl | |
2B HERE 7 years 5 months ago #22525
Hello thirdtimelucky, Most of the UK teaching hospitals will monitor patients who have sourced generics themselves. Some prescribe, some don't and that's on a per consultant basis. YMMV The following user(s) said Thank You: LondonGirl, Gaj | |
2B HERE 7 years 5 months ago #22532
| I am amazed to hear that "some prescribe" - This is an excellent step forward from the start of this year. As Dr F says, "this is on a per consultant basis" . The problem for the NHS patient, is finding out who those consultants are, managing to contact them and getting an appointment sooner, rather than 6 months time. I have never met my consultant at my current hospital, the specialist nurses seem to be dealing with treatments much more these days, but I guess the consultant needs to give the nod. Have found the nurses extremely supportive and kind. They did ask me not to broadcast this, but if any UK patients would like to PM me, I'd be happy to share my experiences with 3 different UK hospitals and 4 different consultants whose approach seem to vary quite a bit. On my blood forms, it states 'Redemption' under treatment. It brings a tear to my eye to see! Those of us who have been around since 2015 know we have taken giant steps forward since those days thanks to Dr Freeman and Dr Andrew Hill's amazing work getting the info out there to EASL and medics etc GT1a Dec14 F2/8.7 VL 900000-2.5M Jan16 Hepcivir-L MonkMed/Redemption Baseline: VL 913575 Alt 76 Platelets low Wk2 VL1157 Alt 23 DET Wk 8 VL 32 Alt19 'In the slow lane' June16 Fibro 5.7 F0/1 LIF 1.5 Wk 11 VL<12 Alt 13 Det/Unq Extending tx 12 wks Mylan Sofo/Dac MonkMed Wk 14 VL <12 Det/Unq Wk 16 VL UNDETECTED Wk 22 + 4 Wks Sunprevir FixHepC Wk 24 UNDETECTED Alt 13 Wk 12 post tx SVR12 Wk 26 SVR24 Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC The following user(s) said Thank You: Lynne-Francis-facebook |
2B HERE 6 years 10 months ago #24834
Having now reached the end of my 12 week Sof/Vel treatment, and received my EOT 12 week blood test results showing that I am HVC RNA - NOT DETECTED, I urge you to join me if you remain untreated. This is my shout-out to all the Type 2 folk. We type 2ers get told things like "don't worry, no need to treat you, it's only type 2, and so benign compared with types1 & 3". But, it is nasty knowing all that virus is chugging around your body, subverting your liver and other body systems. Another thing I have felt diminished by, is not being able to be an organ or blood donor. Type 2 is relatively uncommon in most populations, and easy to treat. Please go ahead and use all of the resources on this site to fix hep c now. Help yourself, then you can help others! G2, infected maybe in 1971? Diagnosed HVnon-A non-B 1980s, revised to HVC 1990's. Treatment naive. Fibroscan & bloods all normal ranges. Viral load 7million, began Redemption trial4, 12-week generic Sof/Vel (Incepta) 2017. Week 4 UND, Week 12UND, SVR24 Thank-yous to my doctor for the script, to Jan at FixHepC for wrangling, and to Dr Freeman for courage. Kia kaha e hoa ma! | |
2B HERE 6 years 10 months ago #24835
| Great news, all the best for SVR around the corner. SVR 24 |
2B HERE 6 years 10 months ago #24851
Yay Mnem!! Great milestone....onwards to SVR G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!) Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back! New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217. SVR12 and SVR 24 The following user(s) said Thank You: Mnem | |
2B HERE 6 years 10 months ago #24865
Hi Mnem - yay! That's brilliant news, very very happy for you! 2b diagnosed about 10 years ago Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine Started dac/sof 27/03/17 4 week test - liver function normal - alt 31 full blood count normal RNA detected 26 IU/ml Log = 1.42 9 week test 26/05/17 bloods and liver function normal - alt 27 RNA detected <10 IU/ml | |
2B HERE 6 years 10 months ago #24867
| Great new Mnem! Gt 1a, F0, VL 6.5 million, AST 59, ALT 62 Started Twinvir 1/15/16 6 wk. labs VL UND, AST 27, ALT 20 EOT labs VL UND, AST 23, ALT 19 SVR 16, VL UND, AST 28, ALT 17 SVR 24 , VL UND, 10/8/16 SVR 125, VL UND, 9/22/18 SVR 230, VL UND, 10/3/20 The following user(s) said Thank You: Mnem |
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