emo Gamma GT

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6 years 7 months ago #1892

That is a great fibroscan score, :)
what was your original score before tx ?

It's good to read more & more people reporting that this new DAA's tx is not so difficult, almost nothing to report when it comes to sides as compared to the old interferon/Riba toxic blast.


Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.

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6 years 7 months ago #1896

I only found out I should have had a fibroscan when I first went to see my private consultant. When I got my NHS case files through (which I'd obtained under freedom of information laws), I discovered that my NHS Hepatology Consultant had written to my GP earlier this year advising them that they were going to do a fibroscan. Instead, they did an ultrasound scan (but a very special one, as my NHS Consultant informed me). How on earth do places like that get to 'centre of excellence' and 'teaching hospital' status? Does Coco The Clown award the accreditations in the UK?

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6 years 7 months ago #1898

Alsdad wrote:

I only found out I should have had a fibroscan when I first went to see my private consultant. When I got my NHS case files through (which I'd obtained under freedom of information laws), I discovered that my NHS Hepatology Consultant had written to my GP earlier this year advising them that they were going to do a fibroscan. Instead, they did an ultrasound scan (but a very special one, as my NHS Consultant informed me). How on earth do places like that get to 'centre of excellence' and 'teaching hospital' status?
Does Coco The Clown award the accreditations in the UK?

Yes, didn't you know??? :lol:

OMG :ohmy: what the sick people have to go through to get anything on the NHS,
maybe the idea behind this is to make it so difficult, stressful & confusing so majority of patients just give up even trying ….?? & go away, :(


Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.
Last Edit: 6 years 7 months ago by Jolie.
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6 years 7 months ago #1901

"Instead, they did an ultrasound scan (but a very special one, as my NHS Consultant informed me" - Ooh lucky you Alsdad - you had a 'very special Ultrasound" :lol:

and Jolie "what the sick people have to go through to get anything on the NHS maybe the idea behind this is to make it so difficult, stressful & confusing so majority of patients just give up even trying ….?? & go away"

Really, it beggars belief the way healthcare is run in this country.
:(


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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6 years 7 months ago #2015

Got the result of my 8 week viral load test back this morning. Still Not Detected. No surprise there, but the reassurance it there.

Saw my Pall Mall Consultant this evening. He's delighted with my progress: Last FBC results were spot-on; General health good, improved; Just wants me to send him a copy of my 9 week LFT's that my GP will do next week. He's pretty-much signed me off. Wants me to do a 12 week eot viral load test and, subject to that being satisfactory, he'll do an eot report for my GP.

We chatted a bit about the generics situation. He's still getting people turning up at his NHS clinic with them, asking him to monitor. After a series of meetings with the NHS Trust, the order has come down from on high: No NHS monitoring. UGH!!!!! He's quite frustrated by the situation, having seen the good that these generics are doing.

He'd had a look at this site and the Buyers Club setup following my previous suggestion. He was impressed. He likes your work Doc James.

Last Edit: 6 years 7 months ago by Alsdad.
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6 years 7 months ago #2023

Alsdad, funnily enough I was just having a good old rant re the NHS and its incredible bureaucracy. It is getting quite frankly ridiculous and putting lives at risks in a variety of departments.
Anyway, will discuss HepC because that's why we're here :)

I can understand that Drs not warming to the idea of patients self-treating and possibly buying from dubious sources,
However, if someone like Dr freeman, a Dr. has organised testing of generic medicines at a reputable lab and the medicines have been deemed legitimate, then there really is no excuse. The total lack of willingness to look into it and the pure stubborn narrow-mindedness re improving the situation by is just plain immoral. Surely, if they communicated with Dr Freeman and with the option of electonic mail (*rolls eyes*) we have these days (uh hello??) a standard letter could be drawn up by Dr F / The testing lab stating the medicines had been tested and they are coming from a reputable manufacturer (or words to that effect anyway) - the very least they could do would be to monitor patients even if they are tied up with the legalities of patents and they can't prescribe. After all, it is saving money for the NHS patients paying for their own medicines for heavens sake!

With the will and some creative thinking, they could even set up testing here in the UK (uh hello again?) - No. Why? Because big business rules here in the UK, particularly England and shareholders are in high places - I will leave it at that, . They have got the NHS in a vice and they can't get out.

I also find it totally immoral that they have recently been offering not only Interferon to patients but Boc and Telap. (Yes, indeed). It's been a while now that they have stopped Boc & Telap in North America. What are they doing, using up old stock? of medicines that can harm patients and cause long-lasting negative health problems that not only reduce the patients quality of life, but also end up costing the NHS more, when there are now better options available? Arggg! Not one dot of a holistic approach - as apparently joint pain, nerve pain, eye problems IBS etc etc are ''not considered connected to the virus' or the medicines they have been using, even though there are plenty of medical papers written by top hepatologists , gastros and hematologist s saying the complete opposite and are available for patients to read online! We have to learn about this virus ourselves, because no-one else seems to want to acknowledge any of the symptoms we all have in common and most of us suffer that we all discuss on these forums.

Scotland no longer offers Interferon treatments for GT1s - A start at least. Apart from the fact the new treatments are better and more tolerable, Harvoni for Treatment Naive GT1s for 8 weeks is also cheaper than the triple ! - Absolute madness.

Another thing that concerns me, is Drs don't seem to do much in the way of basic observations eg Pulse, BP, Listen to heart, lungs, look in eyes, reflexes etc any more - Why is that? I have been 'looked at' once since being diagnosed 18 months ago and that was by an excellent leading professor of Hepatology who has since retired and who I booked a private appointment with. I nearly cried after that consultation because a medical professional had actually bothered to check me out nearly a year after diagnosis. He noted a slight tachycardia and slightly raised blood pressure noted in a letter to my GP which was sent to a stranger in Wales because the admin in NHS hospitals is a mess. On mentioning to my GP that I'd like him to check my heart out before treating, he told me to 'go on holiday and relax'. No wonder we are anxious when we go to appointments, we are scared to ask for advise or help re anything! We must remember that many GPs are now shareholders and partners in the surgeries, so financing of tests is a personal concern to them these days. There are many recent articles about how HepC can cause a higher risk of heart disease for example. How many of you have had a Dr listen to your heart lately ?

It seems to me that Drs just aren't 'Doctoring' here in England of late. I know there are some excellent Drs and specialists out there, but somehow they are being restricted and I've read some articles which raise this very concern, A recent one was from a cancer specialist who said he felt restricted in trying things that may work when a patient was deemed 'untreatable', and felt like he 'couldn't be a Doctor' - but that's another story.

I have talked to so many other Hepatitis C patients who have become almost phobic about seeing their consultant or GP - Surely this cannot be right? Why has it become like this?

End rant - feel a bit better for it , I think

Big congratulations on your 8 weeks undetected Alsdad and here's to your consultant for trying to raise the issue.


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: 6 years 7 months ago by LondonGirl.
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6 years 7 months ago #2559

Picked up my GP Practice week 9 blood test results today. Gamma GT is down to 47, now in the 'normal' range. So, as things stand, I'm virus-free and my liver is functioning normally.

Previous two GP Practice blood test results have been a one page affair containing basic LFTs and KFTs. This latest one is a pretty thorough four page job. Makes me think that the progress of my treatment may have made someone's ears prick up in the NHS.

I've attached the results with all identifying info redacted manually (for the lowlife scumbag who unredacted the digitally redacted first set of documents I put up).

Last Edit: 6 years 7 months ago by Alsdad.
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6 years 7 months ago #2560

Blood test pages 3 & 4.

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6 years 7 months ago #2564

Alsdad wrote:

So, as things stand, I'm virus-free and my liver is functioning normally.
Great news Alsdad - So pleased for you .


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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6 years 7 months ago #2572

Alsdad, wonderful news for you and very encouraging for me


gt 1a VL 6m
F2/3 FibroScan - 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc
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6 years 7 months ago #2588

Great news Alsdad. Only 12 days of meds to go - the finish line is approaching.

It would make a good story for the British press...


NSW Australia. Genotype 1b 30+ years, F0-F1, VL 91,000 Feb 2015 (740,000 in 2010), Tx naive.
Ordered Sof/Dac from Buyers Club 21 Sept, received 14 Oct.
Virus UNDETECTED at 3 weeks AND 12 weeks (EOT) AND SVR4 AND SVR12 AND SVR24. :-)
A thousand thankyous to Dr James and the amazing FixHepC team.
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6 years 7 months ago #2605

Great to hear your positive news Alsdad :) And I agree with Joy...wouldn't that be a rather instructive story to get the word out on, considering the state off affairs as it stands 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
Last Edit: 6 years 7 months ago by zhuk.
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6 years 7 months ago #2607

It might be a nice story if there was any major media interest in it. But it isn't going to happen due to personal circumstances.

Last Edit: 6 years 7 months ago by Alsdad.
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6 years 7 months ago #2621

well done Alsdad!,
I'm so happy for you & hope you'll continue to feel better & better once you finish the tx in 12 days,
jolie xxxxx :)


Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.
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6 years 7 months ago #2685

Blumey Alsdad! Less than 2 weeks left, time is flying fast!


Virus not detected from 14.10.2015
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