TOPIC:

Thank you to all for your encouragement and support your sage advise has helped to reduce my anxiety re the boat im sailing in. Dr F has posted a reassuring article about patients who were still detectable at EOT who have since gone onto clear in following weeks - I am hopeful that I too will follow that tread as reported in the articles conclusions.

www.hivandhepatitis.com/hcv-basic-scienc...erferon-free-therapy

If that is not the case then I will retreat using a different DAA regime and tx period. I have spoken to my care team here in NZ and will have a script on Tuesday. I am going to arrange for some meds to be sent over so I have them in hand should I need them. I am due to have my 4 week VL taken on the 24th March and yes I agree with Enkel that I should use a different lab however we only have the one in my region and the closest alternative is in Christchurch which is 5 hours drive away When I see my care team I will ask whether or not they can arrange to get the samples sent there.

It is interesting as I have seen posts from others on Hepatitis C treatment without Borders whose VL and log is higher than mine and they have been reported as UND and it could well be our labs reporting? Dr F suspected this and rung the lab here to get clarification and turns out yes Im still detected.

As for me Im just taking one day at a time and keeping a positive attitude, knowing I have a contingency plan in the event of relapse is a huge weight off my shoulders.

Big to all xx

Hey Tina, damn I'm so sorry that you've had this news to wrestle with!

But absolutely you are on the right track with a solid plan of attack should you not clear at SVR4. Sounds like you've got awesome local support from the liver team, and Dr J will be right in your corner too - and the great attitude you have. You WILL beat this!

We are all behind you mate

HI Tina

So sorry to hear this Tina! After speaking with you yesterday my mind was racing a bit and my after thoughts were? False/positive?, was that the limit of the quantitative test or was it actually HCV RNA detected?, why wait until 4 weeks - retest now and get back on if necessary - hopefully not, need to have RAV testing done and if NS5A resistant then consider adding simprevir to sof/dac and not riba 24 weeks. This latter option is more expensive however where there is a will there is a way. I'm happy to chip in and I'm sure others will also. Em

Hi Em

Thanks for the well wishes mate xxx

Yes maybe it is a false positive as the Abbott test assay is unable to differentiate between viable and dead RNA/Virus. In relation to a Simeprevir combo I would first need to be tested for Q80k to know whether or not Simeprevir would work on me....as it turns out we cant test for that here in NZ so thats Simeprevir out, as for RAV testing for NS5A if I do need to take another course it will be Sof Dac instead of Sof Led thus (as far as I believe..) that NS5A testing is for the Lepedisvir part of the equation so its not going to be relevant if its Dac Im going to be taking. Im going to catch up with my nurse tonight and I will ask about the NS5A test and whether or not I need it.

Re riba, Doc said no at this point so that is a bonus!

Im two weeks post EOT and due my post 4 week VL in two weeks time (24th March) its going to take about 2 weeks for the first half of my script to arrive and as I see it waiting until then to take the test is not going to effect the outcome. Although it would be nice to know sooner - I will run it past my nurse tonight

I had LFTs and FBC done yesterday so I will have them back either tomorrow or the next day..... I am really interested in what my LFT scores are now as I feel it will be pretty revealing to determining whether there is any viral replication happening. I will post them up soon as I have them in hand.

Rock n Roll
Tina

Hi Tina

Daclatasvir is an NS5A inhibitor so if any resistance you would need to tailor your tx around this. This is why adding simprevir in this situation is considered a good alternative or inclusion x.24 Em

Hey Em just got off the phone with my nurse...
My LFT and FBC result is back with her ALT = 12

I spoke about RAV testing - in particular NS5A and she felt as because I was treatment naive upon commencing SOF LED that the likelihood of me having any resistance is very unlikely. I then went onto ask whether NZ does NS5A testing to which she replied no.

Good news about my very recent LFT! oh and Im going for VL testing tomorrow and in another two weeks time.

Thinking of you Tina
Keep us updated wishing you the best
Xxx
Ariel

Thank you mermaid

Must say it was reassuring to see my Alt is 12 down from 14 at EOT. Im doing good and after speaking to my nurse and reading all the lovely posts I dont feel so afraid as I did.

I am so thankful that we now have affordable options available to us all rather than being faced to pay Gileads murderous price tag. Things are vastly different to what it was like back when I was first diagnosed with Hep C, I will never forget that day as it was - if not the worst day of my life. My haven't things changed from then and for the greater good.

That's an amazing alt result post 2 weeks. Mine at post 2 weeks was 15. Its actually down fro EOT which is crazy. Fingers crossed xo

Yeh it is promising and not just fingers crossed here hehehe

Hi,
Sorry about all the crap and worry you are going through. A great 4 week result, then this. Odd.
Let's see what the 4 week EOT says and hammer the shit with something else if need be.
I would not bet against you being UND.
Not a thin dime!
M

Hi Tina,

The result is disappointing for you, I'm sure. I'm so glad to hear you have been speaking to Dr Freeman and have a plan of attack. Thankfully we have a number of other options we can look to if we don't reach SVR! It may well happen yet though!

i hope you don't have to wait too long to get tomorrows VL result back. Try to take it easy, I think you should go get yourself a massage or something equally relaxing that you would enjoy

J

Hi all

Well its been a long couple of weeks since I finished treatment (24th Feb) which at EOT my VL was <12 and reported as detected, since then I had another test for VL on the 9th March.............

Drum-roll at long last I am UNDETECTED!!!!

Tina, that's fabulous news!!!

After three weeks of worry that deserves one of these.




Here's to all your future SVRs being Undetected.

Aww that's brilliant. Really, really, really good news.