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Hey all. 4 years 5 months ago #25515

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Hey peeps, I'm from the uk, got diagnosed with hep c 3 or so years ago. After 18 months got put on a harvoni course for 8 weeks by the NHS. Got pneumonia 2 weeks in and spent 3 weeks in hospital on IV antibiotics. Was clear of hep c going into hospital. Was clear all through treatment, clear at 12 weeks post treatment. Felt good for a month or 2 but slowly started to feel weird but put it down to my low thyroid and an increase in the thyroid meds that had recently happened. NHS requires re-test at 12 months so i went for that and never heard back for a couple of months - never thought anything was off - I was cured right? Nah soz dude - I get a letter from the specialist saying he's very sorry to hear I've again tested positive for hep c, but he isn't quite convinced so sends me for re-test. Still not heard back from that. Soooo.... here I am. Kinda looking at my options. Thanks all. ;)
G1a. Treated unsuccessfully with 8 weeks of harvoni.
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Hey all. 4 years 5 months ago #25517

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Hi 40 Odd,
Sounds like you know how you feel... that is a pity, cost cutting by the NHS takes a gamble that 8 weeks is enough, but it reduces your chance of success, this time.
This is the place to get right advice and treatment length if you need to retreat, as it seems. Many have done so here- there are a few stages to the final victory for some. It will be your turn to get there. Your liver sounds like it is in pretty good condition, but I can understand you not wanting to have to wait for treatment- I would not give it another day than I had to.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
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Hey all. 4 years 5 months ago #25518

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Hi there 40,

That really is unfair! It isn't a complete surprise because 8 weeks of Harvoni is hardly regarded as the gold standard treatment.

Well done for finding this forum because all the information you need can be accessed this way. You could spend some time reading through the material or, if you're ready, just make an appointment for an online consultation with a specialist GP - GP2U is what you will need. If you have or can get hold of $1500 to $1600 (£1113 - £1187), that will take care of a 3 month course of treatment. You may decide, in consultation with the doctor, that it would be better to treat for a longer period and in that case the cost would be roughly proportionate.

It's worth pointing out that the NHS will eventually sort you out. They are quicker these days but a lot depends on your health district - this is where the infamous postcode lottery comes into it. The decision you come to will involve your available time, your patience, your wallet , your symptoms and history and your views about healthcare. There will be other considerations depending on your particular circumstances.

It may be helpful to know more about your history and hepc status so why not add those details to your profile. What genotype of the virus has taken up residence in your liver, for example?

With all best wishes,

RSF
G3a. Probably infected 40 years ago.
Diagnosed July 2015
7/7/2015: ALP 69, ALT 209, WBC 5.8, VL 40,000. Fibroscan 9.5 Kpa.
Commenced treatment Sof/Dac (Natco Pharma) 24 wks in Feb 16
VL UND @ 4 wks, 12 wks

EOT 6/7/16
SVR 12
SVR 24

PHEW! Thank you so much Dr James, Monkmeds and all at Fixhepc
Last Edit: 4 years 5 months ago by rightsaidfred. Reason: inaccuracy
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Hey all. 4 years 5 months ago #25519

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I've found the NHS very hit and miss. Had a lot of bad information from the nurse, they are really not up to date on anything and are very unhelpful and generally unenthusiastic about any suggestions or queries I had. I only got the treatment as the original person pulled out for some reason. The nurse had previously laughed when I asked about the new drugs on the market. Not very inspiring lol.
Whats peoples experience with re-treatment, what is the suggested length of the course and which one would be recommended for best success? I have genotype 1a, liver is in reasonable condition - some mild scaring was the expression the specialist used. Thanks.
G1a. Treated unsuccessfully with 8 weeks of harvoni.
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Hey all. 4 years 5 months ago #25520

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Hi 40-odd,
Great to have you on here! Your doctor's interpretation of your tests as "some mild scarring" sounds like fibrosis, so you might need longer than 12weeks treatment. You now need more information. See if you can get hold of it from your healthcare team. Ask them to give you a copy of your liver function tests. Also for the fibrosis score or liver biopsy test results.

By knowing your own numbers you'll become expert by experience in your own healthcare. This ensures your next steps can be the right ones.

Reflecting on your experience of your NHS healthcare so far reminds me how much of patient:provider relationships are defined by healthcare-rationing. In the US by contrast people can buy whatever healthcare they want so long as they have enough money and insurance. It is an interesting contrast.
G2, infected maybe in 1971?
Diagnosed HVnon-A non-B 1980s, revised to HVC 1990's.
Treatment naive. Fibroscan & bloods all normal ranges.
Viral load 7million,
began Redemption trial4, 12-week generic Sof/Vel (Incepta) 2017. Week 4 UND, Week 12UND, SVR24
Thank-yous to my doctor for the script, to Jan at FixHepC for wrangling, and to Dr Freeman for courage.
Kia kaha e hoa ma!
Last Edit: 4 years 5 months ago by Mnem. Reason: grammar
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Hey all. 4 years 5 months ago #25521

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Hi 40-odd,

Retreatment is a little more tricky that first-time treatment, but you are in the easier group ie those people who did not clear on 8 weeks Harvoni might well have on 12 weeks.

From what you've written you were undetected at SVR12 - 12 weeks after finishing the tablets. It is very unusual to relapse (as in 2/779 or 0.3%) at this stage. This could be interpreted as "gosh we were close" or maybe you have been reinfected.

What's required is a decent length discussion with somebody like me who knows a bit about both the treatment and retreatment. I have about 3000 patients finished or still on treatment and, failure rates being what they are, have retreated over 100.

Success rates for retreatment are very good (still over 90%) but the precise choice depends on lots of things specific to you.

You can book an appointment with me online (so we see each other by video) at gp2u.com.au/
YMMV
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Hey all. 4 years 5 months ago #25522

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hi 40-odd
That's bad luck I know how you feel I'm also NHS 8 week harvoni relapse I wasted a year working out what I was gonna do next and finally started retreatment early this year via fixHepc and Dr James.
I've got my EOT 12 week blood test coming up next week so I've got my fingers crossed
As Mnem says you need your test results, they cannot refuse you,
The nurses in at my hospital were most helpful and have been all the way through
Next thing is you need to get them to agree to test and monitor you throughout treatment
it might be the consultant has to make that decision but it's the nurses who present your case so I can't stress enough how important it is to get the nurses on side, make yourself known to them. Make sure they know that you're going to self fund your treatment with generics whether they support you or not it's hard to see how they can refuse to monitor you
my nurses agreed that they would email me all subsequent blood test results
my bloods are taken on a Wednesday morning and I have the full results by Friday evening I think it's very poor that they made you wait so long on something that so important. I would definitely be chasing up those outstanding results as there's always an outside chance that it was a duff test or the results were mixed up especially if they've been hanging around the 2 months
Good luck I hope to hear soon that you've started.
age 72 location UK
14-2-2015 GT1a 6.8 kpa F1-F2 VL6.46
16-3-16 started 8wks Harvoin
2 wks VL unquantifiable
4 wks VL undetected
8 wks EOT Vl undetected
4 wks post. detected VL 4.07 relapsed
22-5-17 started re treatment via Redemption 2 ,meds via Monkmed 12 weeks Sof Dac+Rbv
Riba via NHS
Starting VL 4.25 log 6.63 ALT 88 Fibroscan F2- F3 8.9 kPa
2 wks VL 2.86
4 wks VL below detectable level
changed Tx to Viekira+Sof+Rbv
6 wks VL undetected
13-9-17 EOT , ALT32, AST28
SVR 4 +12
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Hey all. 4 years 5 months ago #25523

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Thanks for the replies everyone. So I should ask for liver function test results and fibrosis scan info and score. Is there anything else I should ask for?
G1a. Treated unsuccessfully with 8 weeks of harvoni.
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Hey all. 4 years 5 months ago #25524

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The stuff I like to see is listed here:

fixhepc.com/what-your-doctor-needs.html

It would be good to get your genotype AFTER the relapse if this was done. Also if they did any resistance testing that would be good.

We kind of know you are low fibrosis from the initial treatment choice.
YMMV
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Hey all. 4 years 5 months ago #25525

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Many thanks. Will get on that tomorrow.
G1a. Treated unsuccessfully with 8 weeks of harvoni.
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Hey all. 4 years 5 months ago #25526

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Hi 40 - odd,

I am G1a and also relapsed after my first round of treatment so I know how you feel. My virus was particularly hard to kill but with perseverance and help from Dr Freeman and FixHepC I am now cured.

My treatment and retreatment were managed through Dr Freeman and GP2U so I didn't have to deal with the NHS. I do know that for me the NHS 8 week harvoni treatment would never have worked and there must be many more like me.

I can see you are collecting your latest results so that the right treatment can be prescribed as there isn't a one size fits all for retreatment.

My way of dealing with the relapse was to sort out retreatment as soon as I could and I'm hoping you can get back on to treatment very soon. I look forward to reading your updates.
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...
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Hey all. 4 years 5 months ago #25527

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Hi again 40 - odd,

I think it has all been said and so I am just sending best wishes,

RSF
G3a. Probably infected 40 years ago.
Diagnosed July 2015
7/7/2015: ALP 69, ALT 209, WBC 5.8, VL 40,000. Fibroscan 9.5 Kpa.
Commenced treatment Sof/Dac (Natco Pharma) 24 wks in Feb 16
VL UND @ 4 wks, 12 wks

EOT 6/7/16
SVR 12
SVR 24

PHEW! Thank you so much Dr James, Monkmeds and all at Fixhepc
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Hey all. 4 years 5 months ago #25529

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Riiiight, after many phone calls I finally got a call back from the gastro nurse, the nurse who was dealing with me is away and will call when she is back but she did know about my case and said my second test result came back negative lol. So yeah I'm now super confused. :ohmy:
G1a. Treated unsuccessfully with 8 weeks of harvoni.
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Hey all. 4 years 5 months ago #25530

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So with Hep C the screening test is for the HCV Antibody. This is positive in 100% of people exposed and infected with Hep C.

Of that 100% about 1 in 4 or 25% have immune systems capable of clearing the virus without help. The remaining 75% can not get rid of the virus so have what we call chronic Hep C.

To differentiate between people who have cured themselves we look for the actual virus, to be specific the RNA genetic code at the core of the live virus.

We do this using PCR (Polymerase Chain Reaction) which is a technique to turn a small quantity of DNA or RNA (the genetic code of life) into a big quantity. We need to amplify the quantity like this to give us enough of this stuff to count.

The test that does this is the HCV PCR RNA test. This is negative in patients who have cleared the virus naturally (or with the help of drugs) and it is positive in patients who have chronic Hep C.

So, for you, good news would be A ) Normal liver functions and B ) a negative HCV PCR RNA.

Notice the A. The usual reason people get tested for Hep C is because they have abnormal liver functions. If you have abnormal liver functions and a negative HCV PCR RNA then the cause is not Hep C because you don't have Hep C.

Here is the big list of other things that cause liver problems: www.mayoclinic.org/symptoms/elevated-liv...inition/sym-20050830
YMMV
Last Edit: 4 years 5 months ago by DrJames.
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