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2B HERE 4 years 11 months ago #22473

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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
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2B HERE 4 years 11 months ago #22474

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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
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2B HERE 4 years 11 months ago #22510

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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
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2B HERE 4 years 11 months ago #22511

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Great News.
dw
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2B HERE 4 years 11 months ago #22518

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NHS seem reluctant to even consider anything not on their approved list

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. :+1:
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
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2B HERE 4 years 11 months ago #22523

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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
:cheer: :cheer: :cheer:
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2B HERE 4 years 11 months ago #22525

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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
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2B HERE 4 years 11 months ago #22532

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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
Last Edit: 4 years 11 months ago by LondonGirl. Reason: LGs spectacular typos
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2B HERE 4 years 4 months ago #24834

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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!
Last Edit: 4 years 4 months ago by Mnem. Reason: typographical correction
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2B HERE 4 years 4 months ago #24835

Great news, all the best for SVR around the corner.
SVR 24
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2B HERE 4 years 4 months ago #24851

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Yay Mnem!! :woohoo: :woohoo:
Great milestone....onwards to SVR #flower
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...
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2B HERE 4 years 4 months ago #24865

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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
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2B HERE 4 years 4 months ago #24867

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Great new Mnem! :cheer: :+1: Undetected EOT!
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
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2B HERE 4 years 4 months ago #24869

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Great news Mnemonic :) :+1:
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2B HERE 4 years 4 months ago #24870

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Mnem that's predictive text :lol: .......another one cured...... that's what we love to hear :+1: #love
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