emo Liver Clinics and Generic Rebels

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6 years 7 months ago #2411

Well that's a rubbish state of affairs LG...I am sorry you're having such a hard time finding a doc. All you want is your levels to be monitored right, doesn't sound like that large an ask...though apparently it is.

Another UK member here might be able to suggest someone you can look up...but at least the side effects seem to be pretty minimal with the new treatments so intensive oversight isn't necessary, unlike the old meds. No possibly life-threatening anaemia, no potential heart failure...I doubt that I could have lasted a year on interferon/riba. We are all far better off in that regard.


Hey I guess you get a European trip as well as your teeth done heh. My English half brother went to Hungary to get his teeth fixed, I guess being employed he didn't want to take the public system lottery. I do wish we had at least basic treatment here - most of our end-stage public dentistry here involves extractions as that's how far gone most people are by the time they are allowed to access the system.


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
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6 years 7 months ago #2419

Hi LG, there's no nice way to say this. Your consultant sounds like a right C***. How unfortunate that you drew the short straw with him. However, even a more helpful NHS consultant has their hands tied when it comes to supplying the drugs we need, courtesy of Big Pharma's pricing and NHS collusion with it.

Now, you have got me started on UK dentists, which are another UK professional body straight out of the dark ages. I could rant on about them for hours but will try to restrain myself. Their greed is every bit as invidious as Gilead's. They insist you have to be registered with them even if you only want one little filling. My (private) dentist thinks that taking the time to match the colour of my front tooth with a filling is beneath him. He only likes the £500 root canal jobs - which then fail. Even the hygienist was salivating on my first visit hoping that she'd got another old fart with gum disease who'd need expensive periodontal treatment. When she found my gums perfectly healthy her face changed like she'd just sucked a lemon. I'd go someplace better but I've already been all over town and not found better and got myself a reputation for switching dentists (a bad thing, must be my fault). I really feel trapped in a system which is not serving my interests. To their credit, opticians don't do this. I can walk in to any optician and get service. Which makes it even more irritating that with dentists I can't.

My point is that the UK is riddled with closed shops. We are just the cash cows for their convenience and they tie us up in knots with this enforced registration and transfer of records. The only viable action we can take is the one you are proposing. Go overseas to another country for treatment. If the UK population did this in droves then these dentisits would all go out of business, which they so richly deserve to do. Same for generic meds. India, China, Bangladesh & elsewhere will do business on our terms so take our business there.

dt

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6 years 7 months ago #2421

Brilliant rant DT - and unfortunately, so true.


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 #2469

Hello everyone

I will start my treatment this Friday (have arranged a week off work next week to see how it all goes)! I have noticed that mostly people on the Forum speak of taking Sof/Dac. I will be taking Sof/Ledipasvir. Is it because of the genotype you are and if there is liver damage etc. that the other combination is prescribed for me? I'm sure it is right, because of course Dr Freeman prescribed it for me however I was just wondering if anyone knew what the different meds were. My liver function, and fibroscan were both good news and I am genotype 1b with viral load of 3.13 million. These tests were done back in February and April respectively.

Trepidation and excitement are setting in today....I have taken Joan's advice and am just rolling with the feelings at the moment.

Lynne


Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!

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  • Vicki
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  • Geno type 3b. On sof/dac for 12 weeks.
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6 years 7 months ago #2470

Hi Lynne
, I'm HCV 3. No fibrosis so i'm Sof/Dac for 12 weeks. I can't speak for Ledipasvir.
I was very anxious when I started treatment. It was hard to believe it was real. But it is, and you will be feeling more confident as the days follow on and especially when you get your next round of test results.
All the best.

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6 years 7 months ago #2471

Hi Lynne,

Welcome to the club, how exciting that you've made the decision to go ahead. I'm genotype 1b as well, and taking Sof/Dac. Sof/Led is also used for our genotype and from memory has had a larger trial base. More info under 'Getting Treated' above - 'Genotype Specific Requirements'.

All the best with your treatment. Keep us posted.


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 #2472

Yes Lynne, what Joy says is correct. Sof/led has a larger trial base. These are the recommendations from the last EASL conference for treatments for the various genotypes (note the document may not render properly on tablets):

www.easl.eu/medias/cpg/HEPC-2015/Summary.pdf

I'm also 1b and on Sof/dac/Ribavirin. RIBA because of borderline cirrhosis and dac because led wasn't available when I started and I was able to get dac under compassionate access. Frankly, I'd have been perfectly happy with any of the 4 options recommended for 1b. We are now the easiest genotype to cure. The results for both dac and led for 1b's are so close to 100% we really shouldn't waste any energy stressing about the risk of failure (but of course we all do any way!) The fact your disease has not advanced too far gives you even more reason to be extremely confident that at the end of treatment you will be cured. :)


Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
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6 years 7 months ago #2517

Hi Lynne
I have just started treatment on day 4 so we will be travelling the road together. The anxiety is hard to keep at bay and it seems to be part of the process. Its such a huge decision buying and taking the meds. And then the anticipation of how they will impact on you. Yes just try to roll with the uncertainty. Once I started I was surprised that I didn't have any side effects. Mind blowing actually as I react to everything.
I did feel exhausted on the second day and couldnt tell if it was the drugs or not. I put it down to all the pre treatment stress.
It won't be long now before you start. I wish you well and a side effect time.


GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015
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6 years 7 months ago #2518

OOPS!! And a NO side effect time.


GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015
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6 years 7 months ago #2529

Hi Joan How wonderful that you are almost side effect free.....I sure hope I am too. Nonetheless, even if I do get some side effects hopefully they won't be too bad. Like you, I pretty much react to everything too :) I seem to be not so nervous at the moment, the closer my start date gets the less anxious I am.....will post again over the weekend.


Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!

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6 years 7 months ago #2587

Hello I have been to my GP this morning and he said he wasn't sure which test to run at 4 weeks.....he is fully supportive but I guess just not clear on what tests to run. He has written out the following for me to check which one it is:
HCVL RNA
RES HCVL
LOG HCVL

Would someone be able to tell me which one it is so I can advise the Doctor when I go to him in 4 weeks. He has other Hep C patients but I suspect has not dealt with the follow up tests simply because the meds are not available here.

Thanks in advance.

Lynne


Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!

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6 years 7 months ago #2589

Hi Lynne, the GP Cheatsheet under the Forum heading at the top of the page describes Monitoring and I assume 4/52 means the 4-week point. Your GP will probably understand it, But maybe the GP's query is on the type of viral load test? I am on the same drugs as you and my hep nurse has ordered a `PCR viral load' test at the four-week mark. I hope this helps.


M, 57, Live in Wellington,NZ.
Genotype 1a diagnosed in 2013.
Treating for the first time since October 31 with Buyers Club Sof/Led. Thanks so much guys. Minimal side effects apart from sore throat at the start..
Viral load 5.4m when treatment started, Undetected at 4 weeks, 8 weeks, End of Treatment and 12-weeks post EOT. Yay!
Last Edit: 6 years 7 months ago by Chapel. Reason: Broader answer about type of test.
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  • In the field of opportunity its ploughing time
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6 years 7 months ago #2590

Hi Lynne, I'm thinking HCV RNA quantitative and a full liver panel test to ascertain liver function alt, ast, ggt. Im definitely not a GP so James and others will answer shortly. Em


Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
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6 years 7 months ago #2591

GP cheat sheet:
4/52 into treatment FBC, Cr&E, LFTs, Hep C Viral Load - See more at: fixhepc.com/forum/forum-gp-cheat-sheet.h...sthash.Mm5wpXBp.dpuf . em


Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
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6 years 7 months ago #2594

I request a Hep C Viral Load which is reported as (say) reading a pre-treatment result

HCVL RNA - HCV RNA Detected
HCV Viral Load - 1,000,000
HCV Log Viral Load - 6

So essentially all 3 are reported.

There is the Detected/Undetected. If it is undetected then they don't report the viral load.

If it is detected the the viral load is either a number > 15 or a < 15 (which is the quantification limit). If if is < 15 they don't report the log

The Log Viral Load is what the viral load is in terms of 10^x so:

Viral LoadLog Viral Load
1002
10003
10,0004
100,0005
1,000,0006
10,000,0007
100,000,0008

Essentially the viral load is "count the 0s!"

You can use the form as is and the lab will know what is required.


YMMV
Last Edit: 6 years 7 months ago by DrJames.
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