Hep C Discussion Forum

mallani · Guru

RE: Golden Wizard of O-S

Huey · Guru

Isiscat2011 wrote:
bluegene wrote:
On a more important note addressing the fibrotic/cirrhotic population in particular: Sovaldi and Olysio are protease inhibitors in highly concentrated form. Our problem, as fibrotics, is that blood flow through the liver is restricted, more in some, less in others, therefore backs up causing secondary inflammation in other body parts from joint pain, eye problems, headaches, etc. Restricted blood flow due to scarring is the reason why hepatologists immediately order an endoscopy to check for veracies, a dangerous condition in stomach lining blood vessels. Bare with me on the medical facts we're all familiar with, I do have a point...The symptoms we had prior to OS tx are now increased due to the liver becoming a virtual battle field where a war is being raged between HCV and OS. Liver inflammation is at its highest, especially mid way in tx. My own insomnia is beginning to get worse along with hand/fingers getting blood-engorged. This secondary inflammation (the liver suffering primary inflammation) is not a side effect of OS but rather a 'richochete inflammation' from that inflammatory battle field within. Cirrhotics are in a catch-22 of supreme evil design. A cirrhotic liver tends to thin its own blood, a type of self-survival technique built into our system, but only to a point. Replacing the proteolytic enzymes with over-the-counter suppliments to reduce inflammation ,to me, seems both futile and potentially harmful since both Olysio and Sovaldi ARE protease inhibitors of the highest caliber. Same for eating foods rich in proteolytic enzymes (proteases) such as pineapples (bromelain protease) and papaya (papain protease) since this runs the risk of enforcing the virus as well. Im siding with caution by decreasing all vitamin-K enriched foods to avoid portal vein thrombosis which could lead to portal hypertension, portal vein blood clot. Super high K foods are brocalli, green beans, collard greens, etc. (i.e. blood thickners hence inflammatory agents). Just my theory. lol.
Oye Vey. Sovaldi isn't a protease inhibitor; it is a nucleotide analog NS5B polymerase inhibitor (also affectionately known as a "nuke"). Check the S/L clinical trial data if you don't believe Int/Riba tx experienced people can SVR.
Just a suggestion: Let us help and support you. You are experiencing side effects of the O/S combo. While diet is important you won't be able to fix the side effects you are experiencing merely by eating more of this or less of that.
Welcome to the forum. :)

Yea Isiscat is right, Sovaldi is what i take and it is a polymerase inhibitor, A protease inhibitor was not yet out for my genotype so I used the old school riba. Witch makes me Tx naive for the protease inhibitor and if I ever do relapse I will have more options .

Gator Man · Senior Member

bluegene wrote:
Apparently there are studies showing a higher response rate for GT1 F-4 'treatment naieve' and lower response rates for 'prior null responders', a critical difference between the two which only tends to strengthen my belief that most individuals who underwent riba/peg tx in past are going to relapse after any all-oral tx in future. The exceptions seem to be those who endure the tortuous sides till the end.

I must be the exception to the exception since I only made it six weeks on Peg/Riba before tx was discontinued. The other possibility is that your conclusion is incorrect.

Isiscat2011 · Guru

bluegene wrote:
On a more important note addressing the fibrotic/cirrhotic population in particular: Sovaldi and Olysio are protease inhibitors in highly concentrated form. Our problem, as fibrotics, is that blood flow through the liver is restricted, more in some, less in others, therefore backs up causing secondary inflammation in other body parts from joint pain, eye problems, headaches, etc. Restricted blood flow due to scarring is the reason why hepatologists immediately order an endoscopy to check for veracies, a dangerous condition in stomach lining blood vessels. Bare with me on the medical facts we're all familiar with, I do have a point...The symptoms we had prior to OS tx are now increased due to the liver becoming a virtual battle field where a war is being raged between HCV and OS. Liver inflammation is at its highest, especially mid way in tx. My own insomnia is beginning to get worse along with hand/fingers getting blood-engorged. This secondary inflammation (the liver suffering primary inflammation) is not a side effect of OS but rather a 'richochete inflammation' from that inflammatory battle field within. Cirrhotics are in a catch-22 of supreme evil design. A cirrhotic liver tends to thin its own blood, a type of self-survival technique built into our system, but only to a point. Replacing the proteolytic enzymes with over-the-counter suppliments to reduce inflammation ,to me, seems both futile and potentially harmful since both Olysio and Sovaldi ARE protease inhibitors of the highest caliber. Same for eating foods rich in proteolytic enzymes (proteases) such as pineapples (bromelain protease) and papaya (papain protease) since this runs the risk of enforcing the virus as well. Im siding with caution by decreasing all vitamin-K enriched foods to avoid portal vein thrombosis which could lead to portal hypertension, portal vein blood clot. Super high K foods are brocalli, green beans, collard greens, etc. (i.e. blood thickners hence inflammatory agents). Just my theory. lol.

Oye Vey. Sovaldi isn't a protease inhibitor; it is a nucleotide analog NS5B polymerase inhibitor (also affectionately known as a "nuke"). Check the S/L clinical trial data if you don't believe Int/Riba tx experienced people can SVR.

Just a suggestion: Let us help and support you. You are experiencing side effects of the O/S combo. While diet is important you won't be able to fix the side effects you are experiencing merely by eating more of this or less of that.

Welcome to the forum. :)

Matt Chris · Guru

Hello Bluegene

Thank you for contributing to the forum, its nice to have input from a member under going treatment.

There are quite a few members that have years very deep insightful knowledge on all things HCV, so I would be careful at bringing up thoughts without substantiated science to back up what one posts to the forum.

For example you said "since both Olysio and Sovaldi ARE protease inhibitors of the highest caliber."

They are not both protease inhibitors, only Olysio is. Solvadi is a nucleotide analog polymerase inhibitor.

I would be interesting in knowing the source of your thought on "foods rich in proteolytic enzymes"

Stating our own thoughts and conjectures is ok and fine but when we do so we have to qualify them as such.

matt

bluegene · Member

On a more important note addressing the fibrotic/cirrhotic population in particular: Sovaldi and Olysio are protease inhibitors in highly concentrated form. Our problem, as fibrotics, is that blood flow through the liver is restricted, more in some, less in others, therefore backs up causing secondary inflammation in other body parts from joint pain, eye problems, headaches, etc. Restricted blood flow due to scarring is the reason why hepatologists immediately order an endoscopy to check for veracies, a dangerous condition in stomach lining blood vessels. Bare with me on the medical facts we're all familiar with, I do have a point...The symptoms we had prior to OS tx are now increased due to the liver becoming a virtual battle field where a war is being raged between HCV and OS. Liver inflammation is at its highest, especially mid way in tx. My own insomnia is beginning to get worse along with hand/fingers getting blood-engorged. This secondary inflammation (the liver suffering primary inflammation) is not a side effect of OS but rather a 'richochete inflammation' from that inflammatory battle field within. Cirrhotics are in a catch-22 of supreme evil design. A cirrhotic liver tends to thin its own blood, a type of self-survival technique built into our system, but only to a point. Replacing the proteolytic enzymes with over-the-counter suppliments to reduce inflammation ,to me, seems both futile and potentially harmful since both Olysio and Sovaldi ARE protease inhibitors of the highest caliber. Same for eating foods rich in proteolytic enzymes (proteases) such as pineapples (bromelain protease) and papaya (papain protease) since this runs the risk of enforcing the virus as well. Im siding with caution by decreasing all vitamin-K enriched foods to avoid portal vein thrombosis which could lead to portal hypertension, portal vein blood clot. Super high K foods are brocalli, green beans, collard greens, etc. (i.e. blood thickners hence inflammatory agents). Just my theory. lol.

Isiscat2011 · Guru

bluegene wrote:
This debate over the SVR rate of OS clinical trial studies is leading nowhere. Apparently there are studies showing a higher response rate for GT1 F-4 'treatment naieve' and lower response rates for 'prior null responders', a critical difference between the two which only tends to strengthen my belief that most individuals who underwent riba/peg tx in past are going to relapse after any all-oral tx in future. The exceptions seem to be those who endure the tortuous sides till the end.

It is impossible to "debate" with someone who has such a limited understanding of the subject. It simply is not accurate that most people who treated with peg/riba will relapse on all future treatments. You are repeatedly making emotionally driven arguments that are not supported by the facts. Science does not support your conclusions.

bluegene · Member

bluegene wrote:
This debate over the SVR rate of OS clinical trial studies is leading nowhere. Apparently there are studies showing a higher response rate for GT1 F-4 'treatment naieve' and lower response rates for 'prior null responders', a critical difference between the two which only tends to strengthen my belief that most individuals who underwent riba/peg tx in past are going to relapse after any all-oral tx in future. The exceptions seem to be those who endure the tortuous sides till the end.

-- Edited by bluegene on Friday 25th of July 2014 06:27:41 PM

OldenSlow · Senior Member

bluegene wrote:
This debate over the SVR rate of OS clinical trial studies is leading nowhere.

Well put. This means you'll stop now, right?

bluegene · Member

This debate over the SVR rate of OS clinical trial studies is leading nowhere. Apparently there are studies showing a higher response rate for GT1 F-4 'treatment naieve' and lower response rates for 'prior null responders', a critical difference between the two which only tends to strengthen my belief that most individuals who underwent riba/peg tx in past are going to relapse after any all-oral tx in future. The exceptions seem to be those who endure the tortuous sides till the end.

Gator Man · Senior Member

As a Geno 1(b), I would have been one of the 5.16 patients since all 1(b)s reached SVR. If Greg, as a F4 1(b) had been included in the study, the results would not have been 100% for that group. I don't think you can confidently conclude that relapse is not possible with such a small group, even as a 1(b).

Since my doctor provided data for the COSMOS Trial, we discussed the small size of the study. When I first met with him, they had just released the interim data for Cohort 2 at 4 weeks EOT. He indicated that the results were "promising", but by no means suggested that SVR was guaranteed.

At that time and today, outside of a clinical trial, the S/O combo was the only non interferon therapy available, even though it was off label when I commenced tx.

Given the progression of my disease to F4, a interferon free tx with a 80% to 90% chance of success, minimal sx, and the ability to retreat with another DAA combo if there was a relapse, the decision was not a hard one to make.

The only issue was treating with or without Riba, and would insurance cover it.

The combo worked for me, but not for others. I hope for Greg and everyone else who has relapsed or still waiting to be treated, that the next Gilead or Abbie DAAs will provide a 100% SVR. We are not quite there yet.

mallani · Guru

Sorry, I was mistaken.

The total number of patients in Arm 4 of Cosmos Trial- Cohort 2 was 14. This was the 12 week arm using Sovaldi and Olysio only. There were 8 F3 patients, and 6 F4's.

The final results presented in April showed an SVR rate of 86% for F4's. Does this mean 5.16 patients? I rest my case.

http://1.bp.blogspot.com/-MppFMXJN-A8/U0mJbzP1_QI/AAAAAAAAL3k/lz5HDp-i6OI/s1600/1a.PNG

Huey · Guru

I think the virus is attracted to liver cells and other cells like liver cells that have a lot of mitochondria like the bursa sacks in our joints. That is why we have problems like arthritis.

We are all in this together Keep your stick on the ice 'Red Green Show'

Groupergetter · Guru

bluegene wrote:
See: Cosmos II results from Stockholm Sweden clinical trials. The data I obtained confirms a 96% cure rate for GT1a F-4 and higher with or without the Q80 polymorph gene. The patients whove relapsed on OS tx were, for the most part, non-compliant and/or suffered from other complications that negated the treatment. The 96% cure rate applies to those who are totally compliant and have no other chronic conditions/medicines taken.

-- Edited by bluegene on Friday 25th of July 2014 01:48:46 AMst

With all due respect I can tell you I was 100% compliant when taking Sovaldi and Olysio. Don't drink, don't smoke, eat a healthy diet, and took almost NO other meds while on tx. I had multiple SE while on tx.
I relapsed after 12 weeks. Yes the percentages are good for SVR, and for those who reach it I am truly Thankful. While the S&O is no where near as difficult to tolerate as the INT/RIBA, Sovaldi combo's there are no guarantees. I know this from personal experience. I can't say with certainty my increase in arthritic related problems are because of the S&O but there is no doubt they are worse than before tx. Maybe it's just age, I hope that is the case. BTW, welcome to the forum. Be well.

mallani · Guru

Yep, we've all seen those results. 13 patients!

Isiscat2011 · Guru

The "legislative hammer" isn't going to come down on Olysio. There will simply be better and less expensive DAAs that take over the national and international markets. Olysio will merely die a natural and uneventful death.

Btw, Gilead has negotiated a deal with 47 state Medicaid providers and is beginning phase 2 trials for a protease inhibitor that will kick Olysio's butt (GS-9857). Meanwhile, the S/L combo will be out Oct 10; the Abbvie combo should be available in December; and that will be closely followed by Merck's all oral DAAs. And that is just a bit of what is happening here in the US.

Patience and planning will pay off. Panic over a total collapse won't.

bluegene · Member

hmm See: Cosmos II results from Stockholm Sweden clinical trials. The data I obtained confirms a 96% cure rate for GT1a F-4 and higher with or without the Q80 polymorph gene. The patients whove relapsed on OS tx were, for the most part, non-compliant and/or suffered from other complications that negated the treatment. The 96% cure rate applies to those who are totally compliant and have no other chronic conditions/medicines taken.

-- Edited by bluegene on Friday 25th of July 2014 01:48:46 AM

mallani · Guru

Hi bluegene,

To say '.........the risk greatly outweighs any potential gain' for Peg/Riba is a bit extreme. Peg/Riba with or without a DAA has helped countless patients achieve SVR.

You are obviously a great fan of Sovaldi/ Olysio. The claim that it 'cures' 96% of Rx-naive GT 1 cirrhotics is not quite right. The SVR 12 rate was 93% for only sixteen F3 or F4 patients ( Cosmos Phase 2 Trial).

Patients on this Forum have relapsed on this treatment. The Optimist -2 results will probably never be published. Olysio will disappear when Ledipasvir is approved.

Best of luck for your treatment.

bluegene · Member

TOT: Total health care collapse.

Marypetrecz · Senior Member

Wow...actually 13 times its weight in gold......

Marypetrecz · Senior Member

I'm finishing S/O, and I do feel amazed that it's so easy and I'm undectablue since 4 weeks. I don't understand you last line...avoid tot?

i am lucky to of gotten on this before the dreaded cirrhosis Invaded my liver....I am lucky that I will be hep free and live a fairly normal life after I'm finished. I really didn't think I'd ever be cured...free of hep.....living my life.....but it happened. And I'm very thankful.

bluegene · Member

hmm To everyone about to start riba/interferon with or without oral drugs: the risk greatly outweighs any potential gain, regardless of the golden Sovaldi as a kicker. Im not speaking from experience, but rather extensive research and first hand testimonies from multiple sources. Im 9 days into the golden O-S combo (Golden Wizard of OS) with a single minor side effect which comes and goes (am currently awaiting info directly from clinical research scientist on this unusual side effect which isn't from the OS combo per se). I seek medical testimonies from all sources and I provide as much helpful info as is within my knowledge and research material. My contacts at Geisinger Danville have direct lines with the science research people who basically created this greatest medical breakthrough in modern medical history, and although Gileads Sovaldi-Ledisprvir combo merged as one pill will have a greater cure rate when its finally FDA approved by the end of the year, the Golden OS is here NOW. At a cure rate of 96% for tx naieve GT 1 cirrhotics, its worth 13 times its weight in golds actual market price exchange at $1,800 a pop. Those of you on this tx--count yourself amongst the blessed and chosen. Be grateful you got it before the legislative hammer comes down and stops everything to avoid tot: total health care collapse.

-- Edited by bluegene on Friday 25th of July 2014 12:53:29 AM

Hep C Discussion Forum

Legal Disclaimer: