TOPIC:

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.

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

Brilliant rant DT - and unfortunately, so true.

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

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.

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.

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.

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.

OOPS!! And a NO side effect time.

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.

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

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.

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

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

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 Load	Log Viral Load
100	2
1000	3
10,000	4
100,000	5
1,000,000	6
10,000,000	7
100,000,000	8

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

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