Forum Replies Created
-
AuthorPosts
-
There a BBC doc with him Bowie on The Cavet show circa The Young Americans
its an interesting watch ,you’ll see a young Luther Vandross on backing vocals too.There is some amazing archives of him recording that album………
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.No, he never reinfected himself from the time of infection about 30 years go he’s lived
a very wholesome life……There are a group who when infected clear the virus without treatment he was one of them from his
first diagnosis he’s never done anything leading to a new infection.His first treatment was Interferon(Failed) next was Harvoni last year(Failed) his latest is his
best yet as in he is UD from week two.I think he looks awfully sick he says other then bloating he’s fine.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.Al, this chap was a G3 F4 who did 12 weeks of Haravoni he was 12 throughout and
6 weeks from EOT was back where he started accept he was a G4.Interestingly this guy also cleared the virus without treatment in his 20’s it came back years later I guess
he’s not the norm.The good news is he’s on some new combo of sob and three new DAA the names of which escape
me this time he’s being Undetected since week 2 he’s at week 8 still UD.Ya, it blew my mind too.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.Excellent news!
Its great you’re being looked after whilst generics I have said many times the NHS has a duty of care
to patients being treated for Hep C.I hope as more of you start treatment you find clinics taking their obligations seriously!
Oh, good luck you’ll do really well.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.Poodle,reading your stats you say you believe G1A is in the hardest groups to treat everything I have read
suggests g1 are the easiest to treat.It seems your now UD if you became UD at week 2/4 or /6 I wonder why its suggested you continue treatment maybe
you became UD later.I’m G1B, as I was Detected up to week 6, I became UD at week 10 it was suggested prior to week 10s result I may need to
continue for 8/12 week extra.The liver clinic I am in has had no Geno type 1 fail, G3 and G4 had failure rates in some instances mutating from G3 too G4.
I’m wondering why they suggest you continue.
Oh, I also have tinnitus, I don’t now in my case its relate to Hep C I have it about 10 months,its no better no worse since treatment.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.I was gutted when I read the news he’d died yesterday I’m a huge fan since I was a kid
his music was the background of my early years.I thought he looked incredible for his age it came as such a shock as he’d kept it to
himself how ill he was.Very,very sad.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.Good luck.
Its an emotional journey you’re about to take I went through similar when I started.
Id be mind full of not getting hung it and try and take it as it comes.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.So. Drum roll please.
My bloods at 10 weeks came back I am now Undetected not sure when it happened between last bloods taken at
week 6.As it was so late I’m being advised to continue for another 12 weeks I am relieved.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.Question One:
“What does this test mean?” This question is accompanied with test results such as:
HCV Viral Load (Log IU/mL) <1.18 NOT DETECTED
Answer: This is the very best news.
Undetectable means that hepatitis C is gone, and presumably all gone. The confusion over this test is because viral load tests don't measure down to zero. Further, viral load tests vary. For instance, the Abbott RealTime HCV assay (assay is a fancy word for a test that determines and measure the ingredients of something) measures down to 12 IU/mL in a 0.5 mL sample of blood. This means that if you have 12 IU/ml of hepatitis C (HCV RNA) in your blood, the test will detect it and count it. If you have less than 12, the test might not see it, and if it does, it won't be able to count it. .
Each test has its own detection range, some lower than others. The main thing is this:
"Not detected" = negative for hepatitis C
"Detected" or an actual number of how much HCV RNA you have = positive for hepatitis CIf you are concerned that you may have some residual HCV swimming around in your body, hoping to set up shop in your liver, rest assured, as this is quite unlikely. Hep C replicates a trillion times a day, so "not detected" might as well be zero. It is extremely unlikely that a small amount of HCV will remain alive in your body without having replicated to much higher amounts. In fact, viral load tends to replicate at much higher numbers when treatment fails.
Question Two:
I am on treatment with Harvoni. My pre-treatment viral load was X million. My week 4 (or week 8 or week 12) viral load came back detectable. I am devastated. Should I be?
Answer: No.
In the old days, back when treatment was long and used interferon, there were clear milestones that helped us know what our chances were of permanently clearing hepatitis C. Ignore all of that. New research funded the NIH Clinical Center showed that low levels of HCV RNA at the end of treatment are not predictive of treatment response among patients with hepatitis C virus treated with interferon-free regimens. (Clinical Infectious Diseases, March 2, 2015) In fact, low levels of HCV RNA detected at the end of treatment, and even post-therapy, do not signify treatment failure.
Here is a bit more information. Sidharthan and colleagues enrolled 114 subjects with chronic HCV/genotype 1 and no prior treatment. Six patients with detectable viral load at the end of treatment achieved a sustained virologic response (SVR12). You can read more about it: Utility of Hepatitis C Viral Load Monitoring on Directly Acting Antiviral Therapy - S Sreetha Sidharthan, et al.
The bottom line is that a detectable viral load at the end of treatment DOES NOT mean that treatment failed when using Harvoni-based treatment.
Important:
Don't despair if you have detectable virus during or at the end of HCV treatment.
Be sure your doctor doesn't stop treatment just because you have detectable HCV RNA. The HCV guidelines recommend viral load testing after 4 weeks of therapy and at 12 weeks following treatment completion. If quantitative HCV viral load is detectable at week 4 of treatment, repeat viral load testing at treatment week 6. If viral load has increased by greater than 10-fold on repeat testing at week 6 (or thereafter), then discontinuation of HCV treatment is recommended. There are no other recommendations to stop or extend therapy based on viral load results.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.You have to look at this over all okay the testing can only go as low as 12/15 ,between 0-15the virus is so
low they can’t say for sure hence you’re not Undetected.In simple terms the virus is there in very low amounts if there is no virus the test clearly states you
don’t have the virus any longer.There are two tests one tests as low as 12 the other 15 there is a wide miss understanding
about VL and what they mean over all while you’re in treatment.Now, most of Geno Type 1 at week 2/4 come back Undetected 99 % will clear the virus with 12 weeks
of treatment and at six months post treatment be cured.Look, you’re at week 4, test again in 2 weeks and then think about maybe extending with another DAA
which is what I’m probably doing.The facts are, VL can go up and down in the 12 weeks of treatment, Gilead don’t consider you a failure if at
EOT you’re a 12 as you can go on to be cured seen as we pay I’m inclined to continue and the medical advice
I’ve being given( If my VL I’ve taken at week 10 is detected) I continue.But, if at week 8 if you’re at a 12 it starts to look like you’re treatment resistant therefore its suggested you
continue for another 8/12 weeks to give yourself a better chance.Look, I know how you feel, its deflating everyone else is UD why not me, it hard to get your head around, I think
its best to be aware you may need to continue.Trust me, I thought this was a sure thing and for the most part it is, some of us take a little longer and
act like F4 with worse geno types.Lastly,this is why its advised to have a consultant you can talk too, I’m like you a patient am by no means
an expert, I have read the research and spoke with James and my consultant.Its important not to get worry about what anyone else results are and you understand clearly your own results
and what they mean too you. It would be great if you could chat to a consultant.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.Enkel wrote:I told you Jeanmarc,
The lab have saved the money by doing only quantitative. <12 means UND
I think he needs to have this looked at as best I know 12 suggests they can not say for sure you're undetected
it simply means the virus is too low to quantify.I know, a chap who was 12 all the way through treatment at week 12 post treatment he was back
detected. Id double check to be sure.Note; I thought prior to starting treatment everyone would be non detected by week 4 at the latest you can imagine
I was some what taken a back to find out at week 5 plus I'd a VL of 17 therefore my chances are lower I will be UD by week 12.Gilead disregarded all VL testing during the trials for this reason. At week 2/4/6/8/10/12 if you're in the easy Geno types
if you're UN not 12 UD you've a 99% chance six months post treatment you're cured.In fact at EOT 12 can turn out to be cured six months post treatment.
But, if you're 12 all the way through its possible you need to extend treatment due to resistance,suggesting you're
UD at 12 is not factual.My point is this not everyone clears at week 2 telling them the lab is wrong is not always factual
or correct patients need to understand what these tests mean not what we think they mean.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.If you’re at 12 at week 4 there is a possibility you may need to extend treatment I can empathize
I was in the same position, I had bloods done at week 10 and am waiting the results I am expecting to
have to extend by 12 weeks.I wouldn’t get caught up in the detected versus undetected up too week 12 those results can go up and
down during treatment.Actually Darbara the gold standard is six months post treatment.
Personally, I think there is a lot of miss information about viral loads during treatment and what they mean.
Sorry you’re having such a tough time Dan it seems to be very hard on you I am confident it will work out.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.She may need to do 24 weeks treatment the reason the majority stop at 12 weeks when
detected is they insurance will no loner pay.At nearly six weeks my VL was 17 I’ve not done any bloods since and will do the next one
at close to week 10 I may need to do 24 weeks.The facts are VL can and do go up and down during treatment even if your showing Detected at
week 12 you’re not considered failed as 24 weeks post treatment is cured.The chances are if you’re UD from early on you’ll remain so at 12 weeks
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.Surely,they will bench mark and only those at a fiber score of 10 or higher will be treated,
even then I would think the higher scores are treated first.It comes down to the cost per treatment how many can be treated in year one its a starting
point, I would think generics are still going to be needed.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.mgalbrai wrote:Doesn’t Gilead legally call Ireland its “tax home”? If so, that could explain a few of the import policies there.
MikeIts an interesting issue, I think the manufactures across all brands have managed to not only keep generics of normal
drugs at bay in Ireland they must have some influence in the aspect of imports via mail or online.The decision is made by the medical board, I think as its a small country you’d probably not get generics through the
mail or Fed Ex hence i picked mine up in the UK.For example. We have the highest prices world wide ,we have nearly no generics across all drugs,we the consumer
pay a Max of 140 per month on drugs anything above that is covered by the Health authority.Our budget for Hep C treatment in 2105 was 36 million at 60 k per treatment over all the market in Ireland is only
2 Billion for everything I’ve seen the Govt try and get generics written for basic shit they seem to have a awful job
getting GP”s on board.Over all my point is many European Countries have a very protected market when it comes to Medicines.
Ps; Monkmed looks great too me!
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges. -
AuthorPosts