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20 July 2016 at 9:10 pm #21159
If i correctly understand, LFTs and PCR are signs, not symptoms. A quote about such things (really, i dont agree with all statements of this relatively old article):
let us consider the difference between signs and symptoms. Signs are typically abnormal blood tests; these are the tests that doctors order to monitor patients. Some signs measure the degree of inflammation (such as enzymes called aminotransferases, known by patients as “ALT” or “AST”). While the ALT or AST test is often called a “liver function test”, it really does not measure any function that the liver performs, but simply assesses the presence of liver cell damage. It is more appropriately denoted as a “liver enzyme test”. The other test (sign) that we need to consider is the one that measures the number of hepatitis C particles that are present in the blood (known as “viral load” or “viral titer”). Traditionally, the success of treatment has been measured by the absence of detectable viral particles in the blood at least six months after the therapy has been stopped. This prolonged clearance of virus from the blood stream is known as a “sustained viral response” or SVR.
Symptoms are the things that affect the quality and quantity of life; it is the development of symptoms that concerns patients. Symptoms of liver failure include internal bleeding from dilated veins (called varices), excessive fluid accumulation in the legs (called edema) and abdomen (called ascites), and slowing down of thinking with confusion and even coma (called hepatic encephalopathy). Another symptomatic complication of cirrhosis is the development of hepatocellular carcinoma.
The point is that if only the enzyme tests remain abnormal, and symptoms of liver failure never occur, there is no clinical “dis-ease”. Treatment is irrelevant because it is impossible to make an asymptomatic patient feel better and, at the time of treatment, patients do not have symptoms of end-stage liver disease.(http://www.news-medical.net/health/Hepatitis-C-treatment-no-benefits-and-possible-harm.aspx)[/quote]
This article has not been subjected to peer review and is presented as his personal views. Also written in 2013 before the new meds. His views specificaly were in regards to Peg-IFN/ribavirin treatment.
Genotype 1A
ALT 473
AST 226
Virus Load 3,119,030
Results as of May-2016
5 week viral load/undetected as of 12/02/2016
Liver Biopsy Results from Feb 2013
Portal/Periportal chronic inflammation and mild interface hepatitis (Grade 2)
Focal Lobular chronic inflammation (Grade 1)
Portal/Periportal fibrosis (stage 1-2 trichrome and reticulin stains utilized)
Negative Iron stains.21 July 2016 at 5:34 am #21174This thread has been hijacked by a discussion about the semantics of what defines HCV as a disease and whether SVR24 constitutes a cure.
It is easy to distinguish between those who have suffered from HCV and those who haven’t simply by the comments that they have posted. No HCV sufferer is interested in the semantics of whether SVR12 or SVR24 can be medically defined as a cure or not. We are only interested in regaining our health after suffering HCV for decades and suffering with all the associated health issues that HCV has caused.
I have had HCV GT2 for 33 years and completed a 12 week treatment of generic SOF + DCV on the 2 July 2016. I haven’t been officially “cured” of HCV as I’m still waiting for my SVR4 test, which theoretically will give me and indication to the degree of confidence of achieving SVR12 and SVR24. Time will tell whether I achieve SVR24 and some will tediously argue whether this constitutes a HCV cure. However, from my perspective, I can honestly state that I can’t remember feeling this healthy during my adult life. For those who propose that the best evidence suggests that most HCV sufferers could not benefit much from treatment is either highly ignorant of the facts or purposely misleading to serve an undisclosed hidden agenda.
The discussion about semantics and pragmatism illuminates why the opinions of marginalised health professionals sitting in their ivory towers arguing semantics, with little or no practical experience with HCV DAAs, should be ignored, and why the opinions of pragmatic doctors with a disclosed mission statement to globally eradicate HCV should be sought. Don’t be fooled by all the hogwash.
Dr Freeman has successfully treated many hundreds of patients with generic HCV DAA medication. Make an appointment with him to discuss your options. There is no need to unnecessarily suffer with HCV, and the associated health issues that it causes, when there are relatively inexpensive generic direct-acting antiviral medication that will ‘cure’ it.
Dr. Freeman can also be reached at gp2u.com.au/
or email admin@gp2u.com.au________________________________________________________________________________________________
Humpty Dumpty discusses semantics and pragmatics with Alice, in Lewis Carroll’s Through the Looking-Glass (1872)
“I don’t know what you mean by ‘glory,’ ” Alice said.
Humpty Dumpty smiled contemptuously. “Of course you don’t—till I tell you. I meant ‘there’s a nice knock-down argument for you!’ ”
“But ‘glory’ doesn’t mean ‘a nice knock-down argument’,” Alice objected.
“When I use a word,” Humpty Dumpty said, in rather a scornful tone, “it means just what I choose it to mean—neither more nor less.”
“The question is,” said Alice, “whether you can make words mean so many different things.”
“The question is,” said Humpty Dumpty, “which is to be master—that’s all.”Alice was too much puzzled to say anything, so after a minute Humpty Dumpty began again. “They’ve a temper, some of them—particularly verbs, they’re the proudest—adjectives you can do anything with, but not verbs—however, I can manage the whole lot! Impenetrability! That’s what I say!”
_______________________________________________________________________________________________________Choose your own path … and don’t be mislead by others with undisclosed hidden agendas.
Let’s eradicate HCV.
Cheers
GT2
1983: Hospitalised with Acute non-A, non-B Hepatitis after ICU blood transfusion 3mths earlier => HCV GT2
22/02/16: (pre-tmt) ALT 61, VL 2.48 IU/ml Hepascore 0.32 (F1/2), fatigue, brain fog, bloating (Treatment Naïve)
10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
09/05/16: ALT 34, VL: NOT Detected 🙂 , FBG 11.9
17/6/16 FBG 5.7; PPBG (@14.22) 6.9 (@ 20.45) 7.1; BP 124/72
🙂 (Accu-Chek Mobile & Omron Auto BP Monitor) 🙂21 July 2016 at 5:49 am #21176GT2 wrote:This thread has been hijacked by a discussion about the semantics of what defines HCV as a disease and whether SVR24 constitutes a cure.
It is easy to distinguish between those who have suffered from HCV and those who haven’t simply by the comments that they have posted. No HCV sufferer is interested in the semantics of whether SVR12 or SVR24 can be medically defined as a cure or not. We are only interested in regaining our health after suffering HCV for decades and suffering with all the associated health issues that HCV has caused.
I have had HCV GT2 for 33 years and completed a 12 week treatment of generic SOF + DCV on the 2 July 2016. I haven’t been officially “cured” of HCV as I’m still waiting for my SVR4 test, which theoretically will give me and indication to the degree of confidence of achieving SVR12 and SVR24. Time will tell whether I achieve SVR24 and some will tediously argue whether this constitutes a HCV cure. However, from my perspective, I can honestly state that I can’t remember feeling this healthy during my adult life. For those who propose that the best evidence suggests that most HCV sufferers could not benefit much from treatment is either highly ignorant of the facts or purposely misleading to serve an undisclosed hidden agenda.
The discussion about semantics and pragmatism illuminates why the opinions of marginalised health professionals sitting in their ivory towers arguing semantics, with little or no practical experience with HCV DAAs, should be ignored, and why the opinions of pragmatic doctors with a disclosed mission statement to globally eradicate HCV should be sought. Don’t be fooled by all the hogwash.
Dr Freeman has successfully treated many hundreds of patients with generic HCV DAA medication. Make an appointment with him to discuss your options. There is no need to unnecessarily suffer with HCV, and the associated health issues that it causes, when there are relatively inexpensive generic direct-acting antiviral medication that will ‘cure’ it.
Dr. Freeman can also be reached at gp2u.com.au/
or email admin@gp2u.com.au________________________________________________________________________________________________
Humpty Dumpty discusses semantics and pragmatics with Alice, in Lewis Carroll’s Through the Looking-Glass (1872)
“I don’t know what you mean by ‘glory,’ ” Alice said.
Humpty Dumpty smiled contemptuously. “Of course you don’t—till I tell you. I meant ‘there’s a nice knock-down argument for you!’ ”
“But ‘glory’ doesn’t mean ‘a nice knock-down argument’,” Alice objected.
“When I use a word,” Humpty Dumpty said, in rather a scornful tone, “it means just what I choose it to mean—neither more nor less.”
“The question is,” said Alice, “whether you can make words mean so many different things.”
“The question is,” said Humpty Dumpty, “which is to be master—that’s all.”Alice was too much puzzled to say anything, so after a minute Humpty Dumpty began again. “They’ve a temper, some of them—particularly verbs, they’re the proudest—adjectives you can do anything with, but not verbs—however, I can manage the whole lot! Impenetrability! That’s what I say!”
_______________________________________________________________________________________________________Choose your own path … and don’t be mislead by others with undisclosed hidden agendas.
Let’s eradicate HCV.
Cheers
GT2
Bravo GT2!
Well said, and well met.
Fitz
21 July 2016 at 7:06 am #21179– It is difficult to see how the opening poster (OP) can hijack a thread. The usual convention is that they determine if the thread has served their purposes or not.
– While some Internet forum have strict rules on threads moving off topic this one does not. Threads that do meander away from their original purpose can sometimes but not always lead to fruitful pastures.
– Participation in threads is voluntary based on your interest in the topic under discussion. Any member can start a new or offshoot thread should they wish to discuss something not/no longer being covered to their satisfaction.
– Personally I am unable to determine from people’s writings on the Internet whether they suffer(ed) from HCV and regardless that is not a requirement to be a member and participant on this site.
– Attempts to declare what HCV sufferers are interested in and are acceptable areas for discussion and what are not sound suspiciously like ‘crowd’ censorship to me. They certainly don’t speak for me.
– Below are what could be best described as this forum’s ‘Terms of Use’. Please pay particular attention to the opening sentence.
Our goal is to provide a location for a warts and all discussion of Hep C in general and DAA treatment.
While a lot of discussion is about generic DAAs people taking OEM DAAs are equally welcome.
There are many other forums discussing this topic around the world – feel free to link to any information you think might help others, including other forums.
We aim to censor only the following 3 things:
Totally unrelated SEO spam
Posts along the lines of “I can get you DAAs” where the poster has a freemail address, claims to be from say Incepta, but are not.*
Flamewars, hate speech, or serious profanity* There are some proven independent parties here and the more channels to access the better – the key is making sure would be rip-off merchants can’t find victims here. The moderators know who has been proven trustworthy and reliable.
https://fixhepc.com/forum/welcome/368-this-forum-is-censored-only-for-spam.html
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
21 July 2016 at 7:41 am #21180Hi Gaj
Your comments are duly noted.
I have misunderstood the main objective of this forum. I innocently thought that it was to provide up to date information about the availability and access to generic HCV medication and to offer support to those undertaking treatment that may be experiencing side effects. In any case, that is the benefit I have had from the forum. The warts and all discussion of Hep C, including the tedious semantics, I will leave to others. I sincerely hope that those that may be new to the forum, and are generally seeking treatment advice because their medical system as failed them to various degrees, are not baffled by all white noise.
Feel free to remove all of my posts on this thread.
Have a nice day.
Regards
GT2
1983: Hospitalised with Acute non-A, non-B Hepatitis after ICU blood transfusion 3mths earlier => HCV GT2
22/02/16: (pre-tmt) ALT 61, VL 2.48 IU/ml Hepascore 0.32 (F1/2), fatigue, brain fog, bloating (Treatment Naïve)
10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
09/05/16: ALT 34, VL: NOT Detected 🙂 , FBG 11.9
17/6/16 FBG 5.7; PPBG (@14.22) 6.9 (@ 20.45) 7.1; BP 124/72
🙂 (Accu-Chek Mobile & Omron Auto BP Monitor) 🙂21 July 2016 at 8:29 am #21181GT2 wrote:It is easy to distinguish between those who have suffered from HCV and those who haven’t simply by the comments that they have posted.
Oh come on, my answers weren’t that bad.
P21 July 2016 at 8:58 am #21183Gaj wrote:Although not able to access the full article yet, I see that 85% of them went on to acheive SVR after they had their liver transplant so presumably they became undetected? I wonder if having a compromised immune system prior to transplant was preventing them from clearing the stragglers that the DAAs hadn’t affected?
Most of the patients weren’t able to finish treatment. Plus, they all used Ribavirin and people waiting for transplant are usually anemic so the Riba dose is usually lower. So this study taught us that suboptimal dosing and unfinished treatment in immunocompromised patients leads to small amounts of virus being left over.
P.21 July 2016 at 9:13 am #21184Price wrote:
Oh come on, my answers weren’t that bad.
PI’ll let others be the judge of that by letting the read the following answer that you gave me:
Post #17625
Price wrote:
The product monograph for Sovaldi (page 12) lists 6% blood sugar >250 (13.9). That’s diabetes but they don’t list diabetes. It also lists fungal infections (page 10). There are actually quite a few side effects that are not listed on the medication insert.http://www.gilead.ca/pdf/ca/sovaldi_pm_english.pdf
Things like palpitations, chest pain, visual impairment, basal cell carcinoma and amaurosis fugax (a transient monocular or binocular vision loss that appears as a “curtain coming down vertically into the field of vision in one eye;”
That sounds just like a detached retina. One of our Vets had a detached retina while on Harvoni.
The Harvoni monograph lists blood sugar >160 (8.9) in 9% for the 8 week group, 10% for the 12 week group and 12% for the 24 week group.
Again, a fasting blood sugar of 160 is diabetes but they don’t list diabetes or say whether it resolved.P
Post #17628
Gaj wrote
I agree it is important that people understand that any drug treatment has some risks attached to it. However to avoid unnecessarily alarming those seeking or undergoing treatment we need to be mindful of how significant those risks are and careful to explain what the actual figures mean.The “fungal infections” is listed in a group of side effects that are present in less than 3% of trial subjects and in all instances of these trials the Sovaldi was used in combination with Ribavirin +/- Interferon. It may still be applicable to members and guests of this site even if few are using these combinations but there is absolutely no evidence presented in the attached documents to confirm that.
The “6% blood sugar >250 (13.9)” is in one arm of the trials and is at least three times the levels of the other four arms. That particular arm is marked as PBO . So I checked what that meant and page 8 states “71 subjects who received placebo (PBO) for 12 weeks.”
Retinal detachment is a known risk associated with Peg/Riba treatment, to the extent that I was required to have an eye exam prior to participation in a clinical trial where I would receive that combination. Do you have any evidence to support its occurrence when using DAAs only?
See:
http://fixhepc.com/forum/experts-corner/1063-thrush-and-or-thirst-check-for-diabetes.html?start=15
No evidence was provided … still waiting ….
1983: Hospitalised with Acute non-A, non-B Hepatitis after ICU blood transfusion 3mths earlier => HCV GT2
22/02/16: (pre-tmt) ALT 61, VL 2.48 IU/ml Hepascore 0.32 (F1/2), fatigue, brain fog, bloating (Treatment Naïve)
10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
09/05/16: ALT 34, VL: NOT Detected 🙂 , FBG 11.9
17/6/16 FBG 5.7; PPBG (@14.22) 6.9 (@ 20.45) 7.1; BP 124/72
🙂 (Accu-Chek Mobile & Omron Auto BP Monitor) 🙂21 July 2016 at 12:20 pm #21189GT2 wrote:It is easy to distinguish between those who have suffered from HCV and those who haven’t simply by the comments that they have posted. No HCV sufferer is interested in the semantics of whether SVR12 or SVR24 can be medically defined as a cure or not.
Hi GT2, I have to disagree. While I am delighted and grateful to be experiencing vastly improved health (and I really used to think I was on top of it ) I think about SVR vs cure all the time.
There is a reason why the term SVR is used instead of cure and I keep asking myself how long it will last. The answer is, nobody knows because these DAAs haven’t been around for all that long.
Although I think about it lots, I don’t really let it worry me. At age 60 this return to health, energy, clarity and focus is a wonderful gift, and I will enjoy it for as long as I can, and if I do relapse in a few years hopefully there will be several options open to me, and anyone else in the same boat.
Hey seppos, was that direct enough?
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or soEOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby21 July 2016 at 1:31 pm #21195Hi Beaches
Don’t worry about the 1 percenters … it will give you ulcers.
The currently available evidence suggests the following:
SVR (Sustained Virological Response)
Treatment success rate is about 90-95% and is measured with SVR. SVR is counted in weeks from the cessation of medication.
• SVR24 is the gold standard – zero viral load at 24 weeks post treatment and represents a < 1% chance of ever seeing the virus again. • SVR4 represents a 97% chance of making SVR24 (96% chance of cure) • SVR12 represents a 99.7% chance of making SVR24 (99% chance of cure) See: http://fixhepc.com/kunena-2015-11-10/gp-cheat-sheet.htmlIf these figures are incorrect, then they need to be updated.
As far as I'm concerned, that constitutes a "cure" in my books.
Even a pessimist should be happy with those odds.
You can argue the semantics of "cure" until the cows come home ... but, this may put others off treatment because doubt has been cast as to weather or not they will be 'cured' of HCV. I simply wish that anyone with HCV can get timely access to generic DAAs and experience a new lease on life like I have ... and I haven't even achieved SVR yet.
The take home message is that if you achieve SVR24, there is less than 1% chance of ever having HCV RNA detected again. Pure and simple. Dr Freeman has provided these numbers, so I am confident that they are correct, as they have been published in peer reviewed journals.
GT2
1983: Hospitalised with Acute non-A, non-B Hepatitis after ICU blood transfusion 3mths earlier => HCV GT2
22/02/16: (pre-tmt) ALT 61, VL 2.48 IU/ml Hepascore 0.32 (F1/2), fatigue, brain fog, bloating (Treatment Naïve)
10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
09/05/16: ALT 34, VL: NOT Detected 🙂 , FBG 11.9
17/6/16 FBG 5.7; PPBG (@14.22) 6.9 (@ 20.45) 7.1; BP 124/72
🙂 (Accu-Chek Mobile & Omron Auto BP Monitor) 🙂21 July 2016 at 2:43 pm #21201Ya, I know GT2.
Really it doesn’t worry me. I have something I never thought I’d have – HCV not detected coming off a very easy, gentle treatment. Happy as a pig in mud.
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or soEOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby21 July 2016 at 3:47 pm #21203Hi Beaches
You’re coming off a very easy and gentle treatment because, in my opinion, you did everything that a doctor could wish their patient do during treatment by doing daily exercise and eating well.
I want to thank you for inspiring me to get back into the pool and swim laps. I’m swimming 30 laps of a 50m pool, roughly what you swim in the open water at Manly, on average 5 days a week. After buying my Accu-Chek blood glucose meter, I quickly realised that swimming is the exercise that best lowers my blood glucose, as it’s a whole body exercise combining aerobic and resistance training.
So there’s a tip for anyone wanting to lower their blood glucose – take up swimming.
I’m happy as a pig in a peach orchard.
1983: Hospitalised with Acute non-A, non-B Hepatitis after ICU blood transfusion 3mths earlier => HCV GT2
22/02/16: (pre-tmt) ALT 61, VL 2.48 IU/ml Hepascore 0.32 (F1/2), fatigue, brain fog, bloating (Treatment Naïve)
10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
09/05/16: ALT 34, VL: NOT Detected 🙂 , FBG 11.9
17/6/16 FBG 5.7; PPBG (@14.22) 6.9 (@ 20.45) 7.1; BP 124/72
🙂 (Accu-Chek Mobile & Omron Auto BP Monitor) 🙂24 July 2016 at 11:02 am #21317Price wrote:HCV RNA Persists in Liver Explants of Most Patients Awaiting Liver Transplantation Treated With an Interferon-Free Regimen.
Is this correct that liver explants, mostly, were analyzed by PCR before the treatment cessation, at the time of transplantation? If yes, then these findings do not prove that virus persists in liver after SVR12.
We assessed the presence of hepatitis C virus (HCV) RNA in liver explants from 39 patients awaiting liver transplantation who were treated with an interferon-free regimen and had undetectable serum HCV RNA at the time of liver transplantation.
only 6 patients (15%) had finalized the treatment course at the moment of LT (mean time off-treatment 25 days [range 6-61]).
Probably infected in 1977
2005 – diagnosed with HCV 1b, compensated F4, 15 mln viral load, ALT 320
2005-2006 – PegIFN/rib 48 weeks treatment, relapse
2016 – compensated F4, MELD 8-9, ALT 100-160
2018 – compensated F4, MELD 8, ALT 9125 July 2016 at 3:44 pm #21378With DAA treatment we try to stop as soon as possible to get an acceptable cure rate.
HCV replicons take about 6 weeks to decay so it’s entirely possible the detection relates to a “less than critical mass” residual bit of RNA.
6 patients 6-61 days past EOT is not enough – either volume of patients, and time from EOT to draw any conclusions.
Being a pragmatist what we want is cessation of disease progression and symptoms. The evidence to date suggests we do get that, however it’s been known since 2004 that you can still find traces of HCV at SVR. That’s the reason it gets called SVR rather than cure,
http://www.ncbi.nlm.nih.gov/pubmed/15140984
For practical purposes SVR is cure – at least for Interferon because we have long term follow up showing SVR is durable and the virus does not come back.
http://www.sciencedirect.com/science/article/pii/S1413867010700702
http://www.medscape.com/viewarticle/782532
YMMV
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