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Dan's Twinvir story 8 years 2 months ago #5204

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I wouldn't mind this in my post :-)
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND
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Dan's Twinvir story 8 years 2 months ago #5205

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I still think you should speak to someone in a Citizens advice bureau they're usually staffed by
lawyers versed in this type of situation.

I'm not shocked the type of Lawyer you spoke too make that statement this is not the type of case they
run with.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.
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Dan's Twinvir story 8 years 2 months ago #5223

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I agree Sirchinenge. I'm not sure of the exact legal situation in the UK although likely similar to Aust as most of our laws are based on your model. I very much suspect that the NHS is playing a game of bluff here. But to some extent the argument comes down to how strong the patient is and whether they are able/willing to fight the system or have more user friendly options such as a supportive GP and access and funds for private consultant and/or testing. But supposing they choose the NHS clinic route:

- if someone is already a client of a clinic then I suspect that their consultant is not in a position to deny them access to the services of that clinic. They may rant and rave about it and advise against self treatment as a course of action. They may be able to delay testing, appointments, etc. and frustrate the patient to the point of giving up. But they can't actually deny the patient access and if the patient presents with concerns or side effects that need checking then they have a duty of care to provide that service. It really comes down to how strongly you are able to fight back and how big a pain in the arse you can be.

- I have just read the letter from Alsdad's consultant to his GP and that just further reinforces my views above. At no point do they deny him monitoring although they attempt to imply it. The whole letter is an attempt at instilling FUD (fear, uncertainty and doubt) in the GP and by association the patient. I wonder what would have happened if Alsdad had said "right, yes, I'm taking Sovaldi/Ribavarin as my generic treatment so please monitor me for side effects of that. I'm not too fussed about you doing VL tests but feel free to if you are curious" and then proceeded to take his Sof/Dac "coz I get confused by all these medication names!" They may not have liked monitoring him and I suspect any moral/emotional support may have been lacking.....but they wouldn't have thrown him out on his ear. :whistle:

I really think the biggest problem here is the stigma attached to hep c and your NHS is playing on that in an attempt to deflect any responsibility. What it probably requires is someone prepared to stand up in court and/or the media and say "This isn't fair!" But I understand how hard that is for anyone to do particularly with the vulnerabilities that this virus causes in us.

Anyway, just a few of my thoughts and I'm not advocating lying about what meds you are on because that is a risky route to take.

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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Dan's Twinvir story 8 years 2 months ago #5225

It is all an extremely grey area to put it midly.

There will indeed be dirty tricks by some, my consultant has just written to my GP saying I have 'no fibrosis' - this is a blatant lie!
That's two lies now :-( He also mentioned that I 'may treat privately' - This letter arrived 2 days before I see my GP. All extremely odd, It really does wear you down emotionally, which doesn't help the stress levels and makes me personally feel ill, probably a bit like any wellfare options here these days like sickness benefit. Our world is changing rapidly.

i also think, what with all this devolution going on here in the UK, that different areas will have different policies in healthcare due to budgets and who's at the head of policy, this is just the beginning of a huge post code lottery.

I agree, Stigma, is very much alive here in the UK, I am absolutely sure of that and have been on the end of it a few times - and no, It's not paranoia. It has taken nearly two years to understand this.
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

Dan's Twinvir story 8 years 2 months ago #5455

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Hi Dan,
I hope that you can have a smoother treatment. Only undetectable! :lol:
I started treatment with Twinvir. Waiting to do blood tests at the end of 2 weeks. :woohoo:
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
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Dan's Twinvir story 8 years 2 months ago #5464

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Thank you. I hjope so too.

2 weeks in to treatment now.

I got the second good news, first was the start of tx. The virus is dying. The VL just after one week is 29, down from 400,000. The nurse paused on the phone, before telling me the viral load.

I'm going to see my GP on Monday to get more bloods, which will be 3 weeks LFT, FBC and will arrange a private VL to see how it is doing now.

The sx at the moment: Fatigue in the evening, dizziness most days, numbness of hands and legs in the evening. Pulsating sensation only appear later in the evening, when really tired. Sometimes the feeling of fear.
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND
The following user(s) said Thank You: LondonGirl, Enkel

Dan's Twinvir story 8 years 2 months ago #5466

Dan - that's awesome - Well done you !

What else did the nurse say? She must have twigged you're on treatment now?!

Hope the sides mellow out a bit for you soon, how far in are you (sorry I am never good at dates and times).
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

Dan's Twinvir story 8 years 2 months ago #5468

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LG:
She didn't say anything else :cheer: Day 15 today. The Blood tests were done at 7 days.
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND

Dan's Twinvir story 8 years 2 months ago #5469

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The 1b is the easiest genotype. The VL after one week 29 menans that you are now negative.
Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured

Dan's Twinvir story 8 years 2 months ago #5470

LG:
She didn't say anything else :cheer: Day 15 today. The Blood tests were done at 7 days.


How odd! but good :cheer:
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

Dan's Twinvir story 8 years 2 months ago #5471

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That's great news for you Dan. I'd be astonished if you weren't UND on your next vl test.

That ******g clinic at Manchester Royal! They know you're on generics and they know they're working. But still they stick their heads in the sand! It's just a nasty nightmare that they want to go away, and wake up from. Why wouldn't rational, intelligent professional medics call you back in and find out everything they could?
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Dan's Twinvir story 8 years 2 months ago #5472

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Reading your stories Dan, LG & Alsdad, just brings home the fact of how lucky we are down under by comparison. Not all of course but many docs (and clinics, or at least certain individual drs in them) are happy to monitor and are taking an understandably keen professional interest. Beggars belief really what roadblocks and downright obstinacy in the face of all logic you must contend with. But I guess such is the scale to which they appear to have been snared by big Pharma. Feel for you guys.
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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Dan's Twinvir story 8 years 2 months ago #5473

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Alsdad - Someone from the hospital rung home yesterday and I thought it is MRI hepatologist or the nurse. This is why I called today, but was told, that they didn't call me.

I thought that they saw the VL result and wanted to bring me back into the clinic, to make sure the result is right.

Never mind, I'll see what my GP will say next week. At least I have the evidence that it is working.
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND

Dan's Twinvir story 8 years 2 months ago #5474

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Fantastic news, Dan!!
I think you can say confidently that you've achieved a very rapid SVR.
Panic attacks should dissapeare very soon and energy levels should increase by week 4.
How is your eczema situation?
I'm on my last week of treatment. Dragging my feet and saffering from the back and neck pain. Other than that feel great.
Virus not detected from 14.10.2015

Dan's Twinvir story 8 years 2 months ago #5475

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Thanks Nadia.

The eczema improved as well with just steroid creams.

The new sx for the past 2 days is numbness in the evening and the muscles in hand up to the elbows and legs up to knees feel so tight
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND
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