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Any Luck Receiving NHS Monitoring in the UK? 8 years 1 month ago #7233

  • Enkel
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Just curious How much the cost of testing of ALT? In my country AST testing is four USD. VL is 250USD.

I do the VL privately because the public hospital cant do it.
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

Any Luck Receiving NHS Monitoring in the UK? 8 years 1 month ago #7279

Hi Sonix, I am in the UK not Australia. I agree it can be helpful to see a poster's country of origin in their signature but it can also be recorded in the profile.

Enkel, blood tests on the NHS (National Health Service – the UK public-funded health service) are free. Privately purchased blood tests in the UK can vary in price, but probably about £200 for HCV viral load qualitative; £150 for HCV viral load quantitative; and £80 for FBC and liver function test. So if you intended to have 3 sets of bloods, one at 4/52, one at EOT and finally one at SVR12, NHS monitoring could save you as much as £600 - £700.

Thanks, LG, for pointing out the significance of the cost and budgetary aspect. I think you may be right that this was a factor in my GP thinking it would be more appropriate for the hospital hepatology dept, rather than his GP practice, to do my VL monitoring. However, I'm grateful to my GP for interceding on my behalf with my hospital consultant: this may have been influential in securing my VL monitoring.

Perhaps the most significant thing to emerge from this thread is that of the 5 UK-based people who have broached the issue of generic-monitoring with NHS doctors – whether by GPs or consultants – all but Alsdad – perhaps because he was the first - have managed to get it. So maybe things are not now quite so grim for generic-using patients in the UK as is sometimes thought.
Male Geno 1a F3-4 Tx Naive
Contracted early 1970s Diagnosed 2012
Started 12 wks TWINVIR (Sof/Led) on 15 Nov 2015
Pre-treatment VL 1.8 million
UND at 8 Dec 2015; UND at 12 Jan 2016
Ended 12 wks TWINVIR on 6 Feb 2016
9 Feb 2016 EOT VL test <15 PCR Negative
UND at 3 May 2016 SVR12
The following user(s) said Thank You: LondonGirl, Debs

Any Luck Receiving NHS Monitoring in the UK? 8 years 1 month ago #7282

  • Debs
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Agree with you, Thurl.
The ball will hopefully start rolling. Really, the NHS needs to greet this with open arms as it will save it a fortune.
Deb :)
Geno 1a, F1, tx naive, had it 35 yrs.
Started Cipla HepcvirL on 12/01/16
Starting VL 490,000
At 16 days in <15
4 week results: UND
8 week results: UND
5 weeks EOT alt 25
SVR 15 - Not Detected
6 months EOT - Not Detected

Any Luck Receiving NHS Monitoring in the UK? 8 years 1 month ago #7300

  • Alsdad
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Dan wrote: Alsdad-
My VL was done in Trafford, my local hospital. As they don't have Hepatoligist there I go to MRI hospital.
Similar to LG, I didn't have AST result, just ALT.
It is very strange how they work. I guess it depends on GP practice budget as well.


Ah! Thought Dr Prince and his not-so-merry gang at Mcr Royal had had a change of heart :( .

Any Luck Receiving NHS Monitoring in the UK? 8 years 1 month ago #7302

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Thurl wrote: Hi Sonix, I am in the UK not Australia. I agree it can be helpful to see a poster's country of origin in their signature but it can also be recorded in the profile.

Enkel, blood tests on the NHS (National Health Service – the UK public-funded health service) are free. Privately purchased blood tests in the UK can vary in price, but probably about £200 for HCV viral load qualitative; £150 for HCV viral load quantitative; and £80 for FBC and liver function test. So if you intended to have 3 sets of bloods, one at 4/52, one at EOT and finally one at SVR12, NHS monitoring could save you as much as £600 - £700.

Thanks, LG, for pointing out the significance of the cost and budgetary aspect. I think you may be right that this was a factor in my GP thinking it would be more appropriate for the hospital hepatology dept, rather than his GP practice, to do my VL monitoring. However, I'm grateful to my GP for interceding on my behalf with my hospital consultant: this may have been influential in securing my VL monitoring.

Perhaps the most significant thing to emerge from this thread is that of the 5 UK-based people who have broached the issue of generic-monitoring with NHS doctors – whether by GPs or consultants – all but Alsdad – perhaps because he was the first - have managed to get it. So maybe things are not now quite so grim for generic-using patients in the UK as is sometimes thought.


To be fair, my local hepatology clinic were obstructive (and continue to be), but my GPs have been as helpful as they could reasonably be, doing everything except the vl tests with blood work and helping facilitate a fibroscan.

Any Luck Receiving NHS Monitoring in the UK? 8 years 1 month ago #7323

Hi Enkel, LFTs around £45-50, AST can be as much as £90, VL up to £200.
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

Any Luck Receiving NHS Monitoring in the UK? 8 years 1 month ago #7422

  • Jolie
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Hi Tomas & congrats on getting your meds already, well done. :+1:

On my Jolie's Party thread I wrote about the monitoring in greater details, in short I had no problem with getting the basic monitoring from my consultant after I emailed him & reassured about the med's quality, tests, etc. & gave link to the blog on this site.
He said NO to the prescription (as he only works for NHS so no private practise or private scrip was possible) but YES to monitoring once I got the generic meds.
It's really great that our little UK tx group is growing here, the more people from the UK start to treat the easier it will be for others to follow & hopefully the UK consultants will feel more reassured in respecting & supporting our decision.

My consultant recently told me that I've made the right choice to start to treat with generic meds rather then waiting for NHS to get their act together, as apparently I'd not get the new DAA anyway as NHS only offer them to patients with the Fibro score of 9.6 kPa as a cut off point at present, so any lower then that no luck, you'll get the old Peg/Riba & Sof instead but no Dac.
Nationally they're trying to push the score downwards but who knows how long that will take, maybe another 1-2 years.

So we're all very fortunate to have this access to generic meds thanks to the incredible Doc James & team & many other people like Greg J. & Rachel at Mes., Monk Meds, amongst many others good hearted people, who made this possible for us.
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.
The following user(s) said Thank You: Debs, Gaj, Tomas_73

Any Luck Receiving NHS Monitoring in the UK? 8 years 1 month ago #7424

  • Debs
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Well put Jolie, as usual! :)
How are you doing?

I didn't realise about the fibroscan threshold requirement!
Geno 1a, F1, tx naive, had it 35 yrs.
Started Cipla HepcvirL on 12/01/16
Starting VL 490,000
At 16 days in <15
4 week results: UND
8 week results: UND
5 weeks EOT alt 25
SVR 15 - Not Detected
6 months EOT - Not Detected

Any Luck Receiving NHS Monitoring in the UK? 8 years 1 month ago #7425

  • Jolie
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Hi Deb,
Yes, the threshold has come down from 11pKA last year to 9.8 pKA. so in a way this is good news as more people would get the new DAA, still people like me @ 8.7 pKA would not get the new meds. Probably next year the score will get down to 8, so am glad I started to tx in December.
I'm feeling really good, a bit of insomnia, that's about it, lots of energy, the brain fog has gone.
All bloods are perfect & am awaiting for my VL results @ 5 weeks.

How are you ?, am really excited to read you, LG & Tomas are all getting aboard.
Did you started already ?
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.
The following user(s) said Thank You: Debs

Any Luck Receiving NHS Monitoring in the UK? 8 years 1 month ago #7429

  • Debs
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Hi Jolie -sorry I should have read your profile info at the bottom first - Feeling fantastic and bloods perfect! That is wonderful! I want a bit of that!
I am feeling particularly brain foggy and tired at the moment. I do remember now the fibroscan requirement previously being 11 point something - This is a prime example of brain fog! I forgot there WAS a requirement. But I start on Tueday, got my hospital appt. then I will start!
Thankyou for asking Jolie,
Will report back then!
I think a few of us will be reporting back soon!
:) :) :)
Glad you are doing great!
:) :) :)
Geno 1a, F1, tx naive, had it 35 yrs.
Started Cipla HepcvirL on 12/01/16
Starting VL 490,000
At 16 days in <15
4 week results: UND
8 week results: UND
5 weeks EOT alt 25
SVR 15 - Not Detected
6 months EOT - Not Detected

Any Luck Receiving NHS Monitoring in the UK? 8 years 1 month ago #7431

Hi guys, My last consultant told me there was no treatmet until June earliest for me, but he also said they were 'no longer treating GT1s with Interferon' so no offer of the triple either (not that I wanted it!) . They are setting up a whole new system, which sounds like it will be good once in motion, but what happens in the meantime, you know? no mention of fibro limits or anything like that, I was just told that there was no treatment for me until then at all, full stop?

I think the situation is variable from hospital to hospital. He also stated 'the nurses will be doing everything and you won't be seeing a consultant'. It's an excellent hospital and I can see them doing good things in the future, but that's no good for individuals who are waiting for this to begin, you know?

So, I advise sound out your own hospital protocol, GP etc and seek out the good Drs who believe appropriate duty of care is needed when you've made an adult, informed choice and there is supply chain integrity, even if they can't condone it - Also offer evidence & info for your informed choice as Jolie, Debs and I have done, plus Dr F's GP Cheat Sheet I also feel you may want to seek out the consultants who don't have 'conflicts of interests' ' ......
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

Any Luck Receiving NHS Monitoring in the UK? 8 years 1 month ago #7432

Hi Tomas, I managed to get myself together enough to go and see my GP about using generics and monitoring some weeks ago,as i needed to change my blood pressure meds as there is a possible interaction . He stopped me before i got to the point and said are you trying to say you want monitoring, and said, just book in with the practice nurse , what ever tests i need. You may get the opposite response but you've nothing to loose. I was very supprised. My GP practice is a busy rural practice and this may make a difference. Hi to all you good people,my first post for some time, just hav'nt been able to get myself together much lately. BIG thanks to you LG.
gt3 started sof dac jan 2016 now 48 wks svr. not the real wilko johnson just have the same real name. shropshire uk
The following user(s) said Thank You: LondonGirl, Tomas_73

Any Luck Receiving NHS Monitoring in the UK? 8 years 1 month ago #7434

5 weeks bloods all normal, ALT 18 (!) - down from ALT 73 at the start of tx.
Waiting for 5 weeks VL test results.
Feeling Fantastic !


Wow Jolie - That's great news ! :cheer:
Well done you ! #flower #love :+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

Any Luck Receiving NHS Monitoring in the UK? 8 years 1 month ago #7435

  • Debs
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Hi Wilko! Lovely to read your post! so another person being nhs monitored, could be the start of a trend....! ..just out of interest, do you mind me asking what blood pressure meds they took you off and what you changed to? I am getting a dose reduction pre tx.
Thanks, all the best to you, debs
Geno 1a, F1, tx naive, had it 35 yrs.
Started Cipla HepcvirL on 12/01/16
Starting VL 490,000
At 16 days in <15
4 week results: UND
8 week results: UND
5 weeks EOT alt 25
SVR 15 - Not Detected
6 months EOT - Not Detected

Any Luck Receiving NHS Monitoring in the UK? 8 years 1 month ago #7436

Debs - So Glad you are starting treatment soon :cheer: #love
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: Debs
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