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Help with Freind Geno1b F3-F4 6 years 11 months ago #5374

  • pkhow
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Hi Everyone. I desperatly need help to convince my freind "BD" to get treatment now for his HepC and not to wait. He has Geno1b and had a poor Liverfunction, FibroF3 so received treatment from a central Queensland Clinc. In 2014 "BD" was treated with Interferon,Riba and Telpervir (or simeprevir) but unfortunatly a few months ago relapsed 6 months after treatment finished. They have convinced him to wait for re-treatment to become available even though it has come back with advengence progressing to F4. This advise is so wrong as treatment now for him has become a possible matter oflife and death.
He has been convinced that the treatment he needs is not available as a generic and only has one shot at this.
I know this is bull as FIXhepC has helped many re-treatments and for 1b with F4 cirrosis the very best new drug treatments are available here for a fractionof the price.
I feel so angry that they have convinced someone who desperatly NEEDS TREATMENT RIGHT NOW as this may be a death sentence .
Please anyone who can add some advise and help convince "BD" here will be greatly appreciated.
Genotype1b probably since 1978.
On prior TX. Started TX 11nov15
Sofosburvir + Daclatasvir FixHepC
VL Undetected 4weeks thanks to
Dr Freeman and FixHepC

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Last edit: by pkhow. Reason: Badly layed out

Help with Freind Geno1b F3-F4 6 years 11 months ago #5379

  • poodle
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Hi try to set up an appointment with Dr James Freeman via Skype . He needs to hear it from another doctor, because if he has been convinced once by a doctor with the wrong advice, he can also be convinced again by the right doctor with the right advice. Perhaps even a phone call between your friend and Dr James Freeman might be enough to change his mind. Good Luck there is still hope. Jill
Geno1a 35years fibrosis 2 or 3 different results from different hospitals ??
24weeks mesochem sof/led as unsure of fibrosis status.
currently UND. No bad side effects
Have svr12 ... waiting for svr 24
I now have SVR 36 weeks.
The following user(s) said Thank You: Chester, zhuk

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Help with Freind Geno1b F3-F4 6 years 11 months ago #5390

I think poodle's advice is spot on. There is little any of us could say about our own experiences that isn't already there in dozens of different threads. If he's been convinced by a doctor it will take another doctor to change his mind. I know for a fact the doc is very good at getting people to face the gravity of their situation. And your friend sounds like he is in urgent need of a reality check.
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
The following user(s) said Thank You: zhuk

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Help with Freind Geno1b F3-F4 6 years 11 months ago #5397

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There would be no other GP in Australia with the sort of direct, real-world experience in working with DAA's that Dr James has...and yep you are right, he cannot afford to wait at this stage of disease progression, to be fobbed off and told that the generics he needs are "not available".

He needs help and he needs it asap.
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

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Help with Freind Geno1b F3-F4 6 years 11 months ago #5399

You somehow need to get your friend reading, it's alot to take in if it's all new.
i hope you can get him to listen to someone with medical authority & he can speak to Dr F.
It must be very frustrating for you.
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

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Help with Freind Geno1b F3-F4 6 years 11 months ago #5417

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Thanks for your replies. I know I somehow need to get him to make an appointment with Dr Freeman and I am hoping even these few comments here may be enough to get him to that point.
I just need him to understand the politics behind why they are putting their own agenda's and ego's ahead of the fact their patient has a desperate and urgent need for re-treatment now.
I have the same HepC type1b for the same time and we were both treated back in the late 1970's by the same medical centre for HEP NonA-NonB as it was called then. I am now at day 36 of treatment with Sofos+Dacl with the Virus becomming un-detectable by day15. I had not progressed to cirrhosis so i am luckier I beleive he will have to add Riba as well and longer treatment but it is looking like the Sofos+Daclat combo particularly for 1b is looking like it will acheive close to 100% clearance rates.
Thanks all !!
Genotype1b probably since 1978.
On prior TX. Started TX 11nov15
Sofosburvir + Daclatasvir FixHepC
VL Undetected 4weeks thanks to
Dr Freeman and FixHepC

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Help with Freind Geno1b F3-F4 6 years 11 months ago #5418

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pkhow said "but unfortunatly a few months ago relapsed 6 months after treatment finished."

As someone who experienced similar two years ago, I have some understanding of how disappointing and demoralising it can be to struggle through the old Peg/RIBA regimes with their horrendous side effects only to find that the virus comes right back stronger than ever. But as you know these new DAAs are the real thing and they work on people with cirrhosis too as can be seen by my latest lab results! And the best part is they are a walk in the park compared with the old treatment.

As others have said, please insist your friend to at least talks to Dr Freeman or someone similarly up to date and supportive of their patient's health rather than those who keep saying wait, wait, wait when it isn't their liver that is getting more scarred and non functional every day. The sooner he gets treatment the easier and more successful it will be.

G
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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Last edit: by Gaj.

Help with Freind Geno1b F3-F4 6 years 11 months ago #5435

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Its also worth considering that because of the damage to the liver your friend is struggling to think clearly, and is also frozen with fear. Gentle is the way forward.
Geno1a 35years fibrosis 2 or 3 different results from different hospitals ??
24weeks mesochem sof/led as unsure of fibrosis status.
currently UND. No bad side effects
Have svr12 ... waiting for svr 24
I now have SVR 36 weeks.

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