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Any Luck Receiving NHS Monitoring in the UK? 6 years 8 months ago #7049

So... I haven't yet told my GP or consultant that I'm expecting meds to arrive! I'm not really sure how to approach it.

You see the NHS haven't exactly instilled confidence. I was told "Interferon + Riba aren't that bad" etc. (Really? That's contrary to everything I've read!)

Since I made it clear that I didn't want Interferon+Riba, it's been year after year of delays for the DAAs. Recently I was told to come back in 4 months again (what they meant was wait till your really ill), and so hence I got more proactive and found out about FixHepC. Amazing!:)
I wish NHS could have mentioned buying from abroad, but would they ever do that? - well of course not.

Anyway, I figure it would be good to get a few blood tests around treatment, primarily to read Viral Load, but also to keep an eye on things. But how?

Maybe I can get my latest blood results emailed from the hospital. Then maybe after (or during) the course I would tell them I've got the meds, and see if I can get another blood test then. Not sure...

If anyone has experiences/knowledge/advice, pertaining to this predicament, please chime in. :)
HCV Genotype 1a, Infected circa 1993, Treatment naive.

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Last edit: by Tomas_73.

Any Luck Receiving NHS Monitoring in the UK? 6 years 8 months ago #7052

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Hi. I'm in North West. My consultant didn't want to look after me on tx, but I still managed to get one blood test out of them. My GP was very supportive and agreed to monitor my blood.

There are few people on here, who get NHS or GP support. The other option is to go private.
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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Any Luck Receiving NHS Monitoring in the UK? 6 years 8 months ago #7055

Hi Tomas, there are few people here that have got NHS help in the form of GP and monitoring.

I was advised to go to my GP as 'first port of call' by a GP2U (thank - you Dr A ) and although I took my time about it, I eventually got the courage up and my GP couldn't have been nicer or more supportive - Really heart-warming and restored my faith somewhat that there are still Drs that care about our health. I think if you tell them you have made a well-researched , adult choice and can back up with some evidence, this can be helpful.

I made notes before I went so I wouldn't forget anything and armed myself with Dr F's fabulous "GP Cheat Sheet" (tabs at the top of this page) - I think many GPs just feel they don't know much about the complexities, so if you can give them good info from another Dr, they are definitely more likely to help. I typed out the tests needed as given by Dr F I also used a few phrases that seemed to help things along.

My GP was pleased that I waited for the official licensed meds and this is another reason I waited for those. "Supply chain integrity" is important to GPs too ! Give them the facts that your meds are licensed and from a reputable company.

My consultant was another story entirely, I was very upset after my last 'consultation' and I'm being re-referred to a new one (your right under 'Patients Choice' - Google) which does take time - Fingers crossed, I really can't afford the private route.. There are many who will monitor privately, around £220 for first appointment and then usually less subsequently - but it's the tests that are extortionate, some quoting as much as £675 a go plus £350 or more for a fibroscan. However, there are also some on the NHS who will monitor as a "duty of care" even if they can't "condone it". You just have to pluck up courage and ask. I found it such a relief to ask you know? At worst, they can only say no, who knows one or two may even say yes.

You can also consult with the MonkMed Drs online by secure Telemed if you are concerned while on treatment - They are extremely polite and caring and also - affordable - actually , I think free if you are on a Redemption Trial.

My advise is you gather some info for your GP and try that first. 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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Last edit: by LondonGirl.

Any Luck Receiving NHS Monitoring in the UK? 6 years 8 months ago #7057

To my pleasant surprise, and to my NHS consultant's credit, I am receiving NHS monitoring for my Twinvir (Sof/Led) treatment.

I wasn't expecting this because I got short shrift from my consultant when I asked him for a script for generics. (I got my script from Dr Freeman at GP2U instead.)

I found my GP more receptive to my use of generics and he agreed to do a full blood test for me (ALT and AST came back normal - pretreatment both were raised) but said he didn't have the authority to obtain a VL test for me. My consultant agreed to do VL tests for me but wrote to me that this was not to be taken as an endorsement either by him or by the NHS of my use of generics which was "entirely at my own risk" - something I was very happy to agree to.
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
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Last edit: by Thurl. Reason: Correction

Any Luck Receiving NHS Monitoring in the UK? 6 years 8 months ago #7061

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Hi Tomas, you could always try e mailing your consultant directly, worked for me and Jolie. Put all your points in including "secure supply line" and mention the Cipla brand ( if that's what you've got) as the NHS knows and trusts it. Mention dr freeman and this site.

At the very least you can get your latest bloods sent from the hospital, though in my experience they prefer to post rather than e mail.
G.P can monitor, but as has been said, can't do VL I believe.
All the best,
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
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Any Luck Receiving NHS Monitoring in the UK? 6 years 8 months ago #7063

My GP has done VL twice now, but I am confused as to which one re the quantitative / qualitative thing !
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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Any Luck Receiving NHS Monitoring in the UK? 6 years 8 months ago #7064

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Hi L.G!
Sorry for wrong info., just shows how treatment varies place to place!
More options for Tomas, hopefully
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

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Any Luck Receiving NHS Monitoring in the UK? 6 years 8 months ago #7066

No probs Debs, yes - variable in many areas! I was pleased and surprised when he offered one earlier in the year and now, pre tx. . Now off to bed, don't want to miss Mr Delivery-Man tomorrow :-)
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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Last edit: by LondonGirl.

Any Luck Receiving NHS Monitoring in the UK? 6 years 8 months ago #7068

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Thurl wrote: I found my GP more receptive to my use of generics and he agreed to do a full blood test for me (ALT and AST came back normal - pretreatment both were raised) but said he didn't have the authority to obtain a VL test for me.

My GP had no problem with ordering blood tests including VL pre-tx but wouldn't prescribe and said further monitoring should be done by the prescribing doctor. He's in a clinic that mainly sees families and old people so I may be one of his only HepC patients.
His main concern was the quality of the generics but was satisfied when I explained the testing/verification process.

Are you in Australia, Thurl? I think it would be helpful for everyone here to put their country in their signature so it's easier to understand our individual situations. I'll do mine now.
M 61yo HCV+ ~ 30 yrs Gt1a F2 VL 223,000 ALT 54 AST 42 Tx start Sof/Dac 17Dec15.
SVR4 at 7Apr16 ALT 22 AST 22
SVR12 at 9Jun16 ALT 23 AST 25
Melbourne, Australia

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Last edit: by sonix.

Any Luck Receiving NHS Monitoring in the UK? 6 years 8 months ago #7112

Looks like liver function blood tests are easier to acquire than the Viral Load tests.
HCV Genotype 1a, Infected circa 1993, Treatment naive.

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Any Luck Receiving NHS Monitoring in the UK? 6 years 8 months ago #7114

Yes, this seems to be true, I think maybe that VL tests are rather expensive may have something to do with it and GP budgets etc etc Any tests on NHS are a help though
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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Last edit: by LondonGirl.

Any Luck Receiving NHS Monitoring in the UK? 6 years 8 months ago #7132

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My GP also ordered VL test for me without any problems.
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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Any Luck Receiving NHS Monitoring in the UK? 6 years 8 months ago #7184

General blood work is normally done at the GP's local hospital lab, but the vl tests are normally done at/through the nearest hepatology clinic.

My GP's request for vl tests was turned down, but Dan's (who attends the same hepatology clinic as me) GP's request was accepted.

Maybe Dan can confirm where his vl tests were done?

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Any Luck Receiving NHS Monitoring in the UK? 6 years 8 months ago #7191

Hi Alsdad, I think this may well indicate that it could be down to independent GP budgets & policies ? My GP surgery doesn't do AST, so it seems they are indeed variable. When I had AST done privately before, that went to a separate lab to the other tests.
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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Any Luck Receiving NHS Monitoring in the UK? 6 years 8 months ago #7230

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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.
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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