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Dan's Twinvir story 8 years 2 months ago #5128

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Hi Dan,

I agree with Sirchinenge that changing meds if your viral load isn't UND at 4 weeks is not the correct decision. Please see the Doc's post below about when different people attain low viral loads which can take up to 8 weeks in some cases. But also note that even then he is not talking about only UND but also some who will be in the <15 group at that point. In fact I have read in a number of the trials where people have still been showing <15 at EOT and have then gone on to be UND at SVR12 or 24.

fixhepc.com/forum/experts-corner/287-vir...-what-to-expect.html

I also agree that it would help if you have someone you can confide in with your concerns about both your treatment and the other health issues you have. I know from experience that this can be difficult with the stigma attached to hep c but it is important for all of us to share our thoughts and feelings with someone we trust. A close friend or relative perhaps? Or if that is not possible, your GP as you seem to trust him enough to have informed him you are treating with generics? Otherwise, I am sure that there are many of us here including myself who would be happy to Private Chat with you from a laymans POV if there are worries that you don't wish to discuss in open forum.

How is the sleep going? As I've said in a few other threads I believe it is important to sleep at least reasonably well during treatment so if you are still having problems please discuss that with your GP too, and check drug interaction charts if he wants to prescribe something. You don't want to bomb yourself out each night but at least a few good nights each week until you get use to the meds will help I'm sure.

Hope this helps
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 #5129

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I guess my warry is to make sure that the meds are working and this should possiblity show in my blood test at 4 weeks.

I'll leave this for a couple of weeks until I get 4 weekly results.As you say, there is no point worrying at this stage of tx.
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 #5130

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Yes, it is a worry! I go for my four week bloods this Wed so I sort of know the feeling and while I feel better since I started treatment it isn't always consistent and varies from day to day so there is that nagging thought "What if it's all in my head?"
But recently I have been seeing/feeling improvements that just couldn't be happening if I was imaging things and this gives me much more confidence. I'm sure you will find the same over the next couple of weeks and will, at least, show a massively reduced VL at 4wks.

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:

Dan's Twinvir story 8 years 2 months ago #5147

Hi dan, I'm sorry to hear you're not feeling so good and can understand your anxiety with no medical support.

i agree with the advise above re changing medicines. Will email you in a bit.

I totally ubderstand how many English NHS consultants can make you feel as I have been in the same position and it can make you feel very nervous about approaching other medical professionals, but I say do not give up re this. I have talked to two UK Drs online, both surprised me with their advise to talk to your GP, my feeling is, that they may have a little more freedom to support and I hope your GP will be forthcoming. You can talk to Dr Amir on GP2U re your sx, he is very nice, although down south, so not in your area, but if your own GP is not forthcoming, he may help put your mind at rest and/or advise.

I also have an appointment with my GP Weds, I am rehearsing what I need to say in the allotted 10 min slot. I advise that you keep it as simple as possible. Discuss the safety of the treatment first, pointing out that an Aus Dr F Dr has tested the medicines by a professional Aus facility, then directly ask him if he/she will support your decision made after much research and consideration, by the way of blood tests and general observations. with the remaining time, say you have suffered some symtoms pre-tx and are having a few extra ones since starting tx and would like to seek his advise re the ones that most concern you.

the issue here, is to get blood test support, once that's in place, you can then return to your GP re other issues, you know?
If your GP wont play ball, approach another one or two. i know this is hard, especially when you're not feeling well & approaching Christmas is never a good time, but I have been given these words from an online Dr " " (hang on a sec while I look them up!) - OK Ask him if he can " Support adult patients making their own choices re tx even if he/she can't condone them " and ..." if GP feels it could affect the liver condition you have, could he/she be free to monitor bloods" also ... would they feel it's "Safer to monitor someone who's made an informed choice"

You could also print out DrF's GP cheat sheet and have it ready to show him what tests are needed so he can have the information quickly and consider the cost too. Many GPs are not totally up with the latest on all conditions, how could they be , you know? They'd have to have the mind of a computer, so if you can provide the info they may seek before they give you an answer, that may help? they are also concerned about lack of time, so I reckon the more info you can give, the better.

hope this is making sense, not on big comp, painfully slow 1 fingered 'typing' will email you in a bit and hope you're feeling a bit brighter today.
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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Dan's Twinvir story 8 years 2 months ago #5169

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Lots of excellent advice there LondonGirl. :)

"Many GPs are not totally up with the latest on all conditions....."

This is something we all need to keep in mind when talking with GPs and asking for their assistance. In almost all cases their previous experience with Hep C has been to order tests to confirm diagnosis of their suspicions and then write a referral for the patient to a specialist or clinic.
Suddenly over the course of the last 2-3 months they have got patients who are taking control of their own destiny and probably know almost as much, if not more, than the GP does about the virus.
It will be disconcerting for many due to:
a) No longer being the confident 'expert' that they usually are in their surgery.
b) The learning curve required as a busy professional to allow them to be able to provide good advice with the confidence that they are acting in the best interests of the patient.

Given the short length of doctors appointments it may be advisable during your meeting to use the approach suggested by LG regarding supporting your adult decisions. Give them a quick summary of the generics path you wish to take, how it is safe as per the printouts in your hand and how you would greatly appreciate their support but that you understand they may need to consider their decision. Then provide the GP cheat sheet plus a printout of the "Testing Provisions" blog, the site Home page, the main Getting Treated page and anythIng else you think may reassure them or trigger your particular GPs interest. Explain to them that you realise they are busy but here is some reading material for them to study later to assist them in their decision (don't forget to run a highlighter pen or similar over the FixHepC web address) and ask when they think they will be able to provide you with an answer regarding support. Basically, show them this is a considered decision on your part that you have thoroughly researched and are confident in but allow them the time to bring themselves up to speed.

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 #5179

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Great points, GAJ.

I took along all the info I could find/download from here and other sources to my GP, but was prepared for them to decline to monitor (which is what happened), their citing lack of experience/confidence in overseeing tx. I guess from their POV, its an individual professional 'risk' some aren't willing to take...I didn't blame the doc for taking that stance.
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

Dan's Twinvir story 8 years 2 months ago #5180

iT SEEMS the beginning of the TX seems the hardest, is that so ?
Treatment naive
F 3/4
Genotype 1 a & b
V/L 17 MILLION
Started Harvoni 11th Dec 2015 for 12 weeks
4 weeks VL UND
6 WEEKS ALT 32, AST 34
EOT 03/03 2016 ! UND
ALT 34, AST 26
04.04.2016 SVR 4
26.05.2016 SVR 12
16.08.2016 SVR 24
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Dan's Twinvir story 8 years 2 months ago #5191

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Dan, we've all had doubts and worries. It's only normal. I had a second vl test about 8 weeks into treatment after going UND two weeks in! How illogical is that? I hadn't convinced myself that the treatment was really working. The fact is, this virus doesn't just play about with your body, it plays about with your mind too. And on more than one level. Apart from the normal concerns anyone would have during any major medical treatment, this virus gets into your nervous system and amplifies those concerns on top of the havoc it's wreaking with your neural pathways, etc. I'm no doctor obviously, but this aspect does seem to be hitting you hard.

The first two weeks of treatment appear to be nearly always the worst Dan (they were for me). Lack of NHS monitoring is making it worse for you. But, as long as you're not getting any genuinely serious health issues from the meds, monitoring would only consist of monthly liver function tests. Your GP can't get the vl tests done, because they're sent to the ****s at Manchester Royal, and they would refuse his request.

If the side effects really start getting to you, there's nothing to stop you walking into your local A & E (Salford Royal?) for an assessment. They can't refuse you. But, unless you really are at that stage, I'd brass it out for another week, and I think you'll feel a world of difference.
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Dan's Twinvir story 8 years 2 months ago #5192

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Dan, if you want Non judgmental blood tests without mentioning you're on treatment I suggest the
following, go to any walk in GUM clinic and say you want to be checked, include Hep
C into the request.

I concur with Al, monitoring at all liver clinics consists of monthly visits,they ask a few questions
you leave and have bloods taken,its not much in the way of support. Like, you're not missing much
I do wonder what would have happened if you'd come clean and said you're on generics.

They may well say, They won't monitor you' in reality they have a duty of care, as such they have
too monitor you on treatment. Have you ever considered an advocate on your behalf?

Maybe Citizens advice.

I'm of the opinion they have a moral and legal responsibility to look after you. If it was me
Id be thinking a legal letter.
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.

Dan's Twinvir story 8 years 2 months ago #5193

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Thank you guys. Lots of advice and information. I will prepare for the GP appointment and see what happens. I also booked an appointment with monkmed.
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 #5194

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K, I refer you to the letter attached to the post I've linked from my blog thread. This is the same Hepatology Clinic Dan attends.


fixhepc.com/forum/patient-stories/98-gamma-gt.html?start=30#387


I can also confirm that, during an ongoing discussion with my private Hepatology Consultant at Pall Mall Medical, he confirmed that his NHS clinic had been instructed by their Trust Management, following a meeting in London, that no monitoring of patients using generics was allowed.

Dan's Twinvir story 8 years 2 months ago #5195

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That's interesting Al,has anyone talked to a Lawyer about this.

For example, a patient returns to the UK with generic medication, at some point they
have problems, no hospital has the right to turn them away,it breeches their duty of care.

I take on board the letter you've received I am of the opinion what they are doing is failing
to look after patients, I think someone in the UK needs to talk too legal.

The courts look very badly at this type of thing.
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.

Dan's Twinvir story 8 years 2 months ago #5196

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I called no win no fee solicitors, but mainly they look at negligence and they don't think that NHS doing anything wrong, as they don't refuse to treat me and offered interferon for a year.
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 #5199

I will prepare for the GP appointment and see what happens. I also booked an appointment with monkmed.


Good luck with the GP - Got a letter from the unhelpful consultant this morning, it's a copy of a letter he'd sent my GP - It stated I was 'considering going private' for treatment. No comment :evil:

Hope you get some reassurance from the MonkMed Drs too Dan.

Re other UK consultants, I do believe it is entirely up to them, they can't prescribe, but they can certainly monitor if they choose to, even if they don't condone it, it's just most of them don't, unfortunately.
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 #5200

Thanks GAJ, You are helping me to re-enforce my own advise for my appointment
Brain fog is pretty bad right now and very busy with work and Christmas organising,
OK in the morning after a coffe, but by the end of the day, I am not great.
Can someone be really lovely and put the links I need to print out all in one post?
or is that being really cheeky ?
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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