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15 July 2016 at 9:10 am in reply to: GP2U and Skinview – Diagnose melanoma at home using your phone #20945
Also did the 3 votes
Australian
Geno type 1a
Fibrosis 3-4
Treatment experienced Peg-Interferon Ribavirin (Relapsed)
Started 22/10/15 DAA’s 24 weeks Sofosbuvir Ledisbovir & 12 weeks Ribavirin
Viral Load at week 4 <15 Detected
Viral Load at week 12 Undetected
Viral Load at week 24 Undetected
Viral Load SVR4 Undetected
Viral Load SVR12 UndetectedHere in Brisbane Australia, the VL is measured either by Quantitive or Qualitative.
Our Medicare system pays for 2 Quantitive & 4 Qualitative tests per year while on HCV treatment.
The Quantitive test is more expensive then the Qualitative.
I had read a post on this site from Dr James Freeman, saying that during treatment you need to do Quantitive until Undetected then all you need is Qualitative to know if you’re Positive or Negative.
Australian
Geno type 1a
Fibrosis 3-4
Treatment experienced Peg-Interferon Ribavirin (Relapsed)
Started 22/10/15 DAA’s 24 weeks Sofosbuvir Ledisbovir & 12 weeks Ribavirin
Viral Load at week 4 <15 Detected
Viral Load at week 12 Undetected
Viral Load at week 24 Undetected
Viral Load SVR4 Undetected
Viral Load SVR12 UndetectedOk…….. 13 years of 1st hand experience.
In 2003, my testosterone levels dropped down to 4 nmo1/L for what ever reason.
Normal range is 11.0 – 40.0
At level 4 I couldn’t even scratch myself, (no energy or libido)
After I have my 3 monthly testosterone injection, my levels increase & so does my energy & libido.
I’m seeing my endocrinologist next month to look at my levels & maybe able to get off the replacement therapy .
Australian
Geno type 1a
Fibrosis 3-4
Treatment experienced Peg-Interferon Ribavirin (Relapsed)
Started 22/10/15 DAA’s 24 weeks Sofosbuvir Ledisbovir & 12 weeks Ribavirin
Viral Load at week 4 <15 Detected
Viral Load at week 12 Undetected
Viral Load at week 24 Undetected
Viral Load SVR4 Undetected
Viral Load SVR12 UndetectedThanks all for your thoughts & encouragement .
I’m so happy that I’m well on my way to SVR 24 after ticking all the previous boxes.
With my latest diagnosis of CLL, I wouldn’t have known I had it, only for all the blood tests I was having during the HCV treatment. I have no symptoms other then my lymphocytes (wbc) started to increase just outside the normal range 3 weeks before I started DAA treatment. I was advised by my doctor to keep an eye on this through my 24 week treatment. The lymphocytes slowly increased month after month. By the time I finished treatment they had doubled the normal range.
I saw a haematologist who ordered some more blood tests, which showed very early stage of chronic lymphoma Lukemia.
He told me that I may not develop any symptoms for many years.
So it’s watch & wait but live life to the fullest.
There is some connection to HCV & CLL but there’s also a connection to being male over 60.
Australian
Geno type 1a
Fibrosis 3-4
Treatment experienced Peg-Interferon Ribavirin (Relapsed)
Started 22/10/15 DAA’s 24 weeks Sofosbuvir Ledisbovir & 12 weeks Ribavirin
Viral Load at week 4 <15 Detected
Viral Load at week 12 Undetected
Viral Load at week 24 Undetected
Viral Load SVR4 Undetected
Viral Load SVR12 Undetected”James-Freeman-facebook” wrote:Back in February 2015 I met a patient with Hepatitis C who was looking to access Harvoni.
What followed was a journey of exploration looking first the India, then to the Middle East, and then to China.
The goal was pretty simple – find a reliable legal way to get the right medications to the right patients.
THANK SO MUCH DR JAMES FREEMAN FOR YOUR DILIGENCE & DETERMINATION .
You are changing this world one country at a time.
Australian
Geno type 1a
Fibrosis 3-4
Treatment experienced Peg-Interferon Ribavirin (Relapsed)
Started 22/10/15 DAA’s 24 weeks Sofosbuvir Ledisbovir & 12 weeks Ribavirin
Viral Load at week 4 <15 Detected
Viral Load at week 12 Undetected
Viral Load at week 24 Undetected
Viral Load SVR4 Undetected
Viral Load SVR12 UndetectedI received my SVR12 results today
Australian
Geno type 1a
Fibrosis 3-4
Treatment experienced Peg-Interferon Ribavirin (Relapsed)
Started 22/10/15 DAA’s 24 weeks Sofosbuvir Ledisbovir & 12 weeks Ribavirin
Viral Load at week 4 <15 Detected
Viral Load at week 12 Undetected
Viral Load at week 24 Undetected
Viral Load SVR4 Undetected
Viral Load SVR12 Undetected29 June 2016 at 6:21 am in reply to: So, what does UND mean really? (or there’s no pleasing some folk #20092Yes Sven, glass half full is a great way to look at life.
Not sure if you’ve done any previous treatments & have experienced relapsing after doing 12 months of peg interferon / ribavirin. It was devistating after being tested as undetected at EOT & then at post 3 months as positive (relapse).
Of course I would love to not think about it but for me it’s a reality, & of course it depends on what stage of treatment or post treatment you’re at.
I agree with you about just focusing on the immediate & don’t worry about looking too far ahead.
Good luck with acquiring your meds & all the best for a successful treatment.
Australian
Geno type 1a
Fibrosis 3-4
Treatment experienced Peg-Interferon Ribavirin (Relapsed)
Started 22/10/15 DAA’s 24 weeks Sofosbuvir Ledisbovir & 12 weeks Ribavirin
Viral Load at week 4 <15 Detected
Viral Load at week 12 Undetected
Viral Load at week 24 Undetected
Viral Load SVR4 Undetected
Viral Load SVR12 UndetectedThanks Arial,
Just been for my SVR 12 PCR RNA VL blood test this morning.
Should be able to post the results in about 10 days.
With the CLL, it’s only very early stages, so I’m not feeling any signs or symptoms . It’s just a wait & see & deal with it when it developes to the stage where I need treatment.
As I’ve said before, I need to well & truely clear this hepC virus, as the CLL drugs can cause a relapse.
Australian
Geno type 1a
Fibrosis 3-4
Treatment experienced Peg-Interferon Ribavirin (Relapsed)
Started 22/10/15 DAA’s 24 weeks Sofosbuvir Ledisbovir & 12 weeks Ribavirin
Viral Load at week 4 <15 Detected
Viral Load at week 12 Undetected
Viral Load at week 24 Undetected
Viral Load SVR4 Undetected
Viral Load SVR12 Undetected29 June 2016 at 4:55 am in reply to: So, what does UND mean really? (or there’s no pleasing some folk #20088Forum Main Forum Experts Corner Viral Load and SVR Understanding SVR – Why don’t we call it cure?
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TOPIC: Understanding SVR – Why don’t we call it cure?
Understanding SVR – Why don’t we call it cure? 2 months 4 weeks ago
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Karma: 40SVR means Sustained Viral Response.
When we stop the medications if there is no virus left you will remain undetected and this is SVR.
Undetected at 4 weeks post finishing – SVR4 – predicts a 96% chance of permanent cure
Undetected at 12 weeks post finishing – SVR12 – predicts a 99% chance of permanent cure
Undetected at 24 weeks post finishing – SVR24 – predicts a 99.9% chance of permanent cure
So if you finish treatment and there is virus left it will grow back, your viral load will increase again and you relapse.
If we can not detect any virus you are at SVR and the longer that remains the case the more certain we are it is permanent.
Patients reaching SVR24 post interferon/ribavirin have remained virus free for 18 years of follow up.
With DAAs we don’t have that length of follow up but basically with no drugs to hold the virus off if it is still present it grows back, and if it is not still present it can not grow back because it is gone.
You can be confident at SVR4, really confident at SVR12 and pronounce yourself cured at SVR24. There is a strong suspicion that anyone relapsing after SVR24 is not a relapse, but rather a reinfection because if the virus has had 24 drug weeks to grow back and has not…..
YMMV
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Understanding SVR – Why don’t we call it cure? 2 months 4 weeks ago
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Karma: 3So do you recommend being tested at 24 weeks as well and 4 & 12?
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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Understanding SVR – Why don’t we call it cure? 2 months 4 weeks ago
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Karma: 40Yes, it’s probably not a bad idea but unless you were one of those asymptomatic people with normal liver functions if you did relapse you would expect to feel sick and this to be obvious on your liver function tests.
After SVR24 maybe check it in a year to satisfy paranoia and declare yourself cured beyond all reasonable doubt.
YMMV
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REPLY TOPIC SUBSCRIBE FAVORITEForum Main Forum Experts Corner Viral Load and SVR Understanding SVR – Why don’t we call it cure?
Australian
Geno type 1a
Fibrosis 3-4
Treatment experienced Peg-Interferon Ribavirin (Relapsed)
Started 22/10/15 DAA’s 24 weeks Sofosbuvir Ledisbovir & 12 weeks Ribavirin
Viral Load at week 4 <15 Detected
Viral Load at week 12 Undetected
Viral Load at week 24 Undetected
Viral Load SVR4 Undetected
Viral Load SVR12 Undetected29 June 2016 at 1:12 am in reply to: So, what does UND mean really? (or there’s no pleasing some folk #20079Ariel wrote:Michael wrote:Beaches, all I can add, is to make sure you’ve treated yourself with the best appropriate DAA’s for your genotype, fibrosis & past treatment history.
Once you’ve done that, “CROSS YOUR FINGERS”
Like us all on here, hope & pray for the UNDETECTED SVR 12 & 24.I wasn’t planning on doing SVR24
Is this necessary?
I was told SVR12 is it by my hospital
My GP and I will follow the protocol suggested here
I’m sorry to hijack your thread here Beaches but I noted this issue and I think others may also want to know the best lab protocols for us going forward
Ty for bringing this up Michael
So please can I have feedback re doing a test for SVR24
Ty
Ariel [/quote]Hi Ariel,
in my case the SVR 24 is because I was on 24 week treatment , G1a, F3 / 4 & relapsed on peg interferon / riba.
I’m sure I’ll be excited if my SVR 12 results come in as undetected but the SVR 24 will be the icing on the cake.
I may also have a SVR 48 just for peace of mind.
Australian
Geno type 1a
Fibrosis 3-4
Treatment experienced Peg-Interferon Ribavirin (Relapsed)
Started 22/10/15 DAA’s 24 weeks Sofosbuvir Ledisbovir & 12 weeks Ribavirin
Viral Load at week 4 <15 Detected
Viral Load at week 12 Undetected
Viral Load at week 24 Undetected
Viral Load SVR4 Undetected
Viral Load SVR12 Undetectedyes of course GF.
Sorry I got that arse about
I’ve just been looking for “negitive” PCR RNA VL results for the 24 weeks of treatment.
Never thought of looking at SVR as a positive result.
Positive attitude , Positive outlook, Positive result.
Australian
Geno type 1a
Fibrosis 3-4
Treatment experienced Peg-Interferon Ribavirin (Relapsed)
Started 22/10/15 DAA’s 24 weeks Sofosbuvir Ledisbovir & 12 weeks Ribavirin
Viral Load at week 4 <15 Detected
Viral Load at week 12 Undetected
Viral Load at week 24 Undetected
Viral Load SVR4 Undetected
Viral Load SVR12 UndetectedGreedfighter wrote:Hi Michael, I’m sorry to hear of this development. I hope your SVR 12 comes back positive. Then onward to defeating this problem too.
Thanks GF, I know what you mean, but I would like my result to be negative
Australian
Geno type 1a
Fibrosis 3-4
Treatment experienced Peg-Interferon Ribavirin (Relapsed)
Started 22/10/15 DAA’s 24 weeks Sofosbuvir Ledisbovir & 12 weeks Ribavirin
Viral Load at week 4 <15 Detected
Viral Load at week 12 Undetected
Viral Load at week 24 Undetected
Viral Load SVR4 Undetected
Viral Load SVR12 Undetectedmgalbrai wrote:Hi GP,
Although I have 8 weeks worth of sofosbuvir and ledipasvir, I have been advised there is no way I can legally donate it to anyone.
The world is not a fair place.Hi Mike,
I agree 100% .
Australian
Geno type 1a
Fibrosis 3-4
Treatment experienced Peg-Interferon Ribavirin (Relapsed)
Started 22/10/15 DAA’s 24 weeks Sofosbuvir Ledisbovir & 12 weeks Ribavirin
Viral Load at week 4 <15 Detected
Viral Load at week 12 Undetected
Viral Load at week 24 Undetected
Viral Load SVR4 Undetected
Viral Load SVR12 Undetected28 June 2016 at 4:42 am in reply to: So, what does UND mean really? (or there’s no pleasing some folk #20027Beaches, all I can add, is to make sure you’ve treated yourself with the best appropriate DAA’s for your genotype, fibrosis & past treatment history.
Once you’ve done that, “CROSS YOUR FINGERS”
Like us all on here, hope & pray for the UNDETECTED SVR 12 & 24.
Australian
Geno type 1a
Fibrosis 3-4
Treatment experienced Peg-Interferon Ribavirin (Relapsed)
Started 22/10/15 DAA’s 24 weeks Sofosbuvir Ledisbovir & 12 weeks Ribavirin
Viral Load at week 4 <15 Detected
Viral Load at week 12 Undetected
Viral Load at week 24 Undetected
Viral Load SVR4 Undetected
Viral Load SVR12 UndetectedThanks guys for the thoughts & encouragement .
Yes, one dragon at a time lol.
It was interesting to see the link between HCV & Chronic Lymphocytic Leukemia (CLL)
The good thing is, that not everyone that has HCV will contract CLL . (Only me )
One thing I found out from my haematologist, was that CLL is very hard to treat if you have the hepC virus.
So it’s starting to be very important for me to clear this virus before I need treatment for the CLL .
There’s only about 1% that reach the point in needing treatment in the first year. The rest could be somewhere up until 10 years later. ( let’s hope that’s where I am)
Having my SVR 12 blood test done tomorrow. Boy!!!!! Is that 12 day wait for the results going to feel like a lifetime.
Australian
Geno type 1a
Fibrosis 3-4
Treatment experienced Peg-Interferon Ribavirin (Relapsed)
Started 22/10/15 DAA’s 24 weeks Sofosbuvir Ledisbovir & 12 weeks Ribavirin
Viral Load at week 4 <15 Detected
Viral Load at week 12 Undetected
Viral Load at week 24 Undetected
Viral Load SVR4 Undetected
Viral Load SVR12 Undetected -
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