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Hep C Discussion Forum -> On Treatment -> Sovaldi/Olysio
Post Info TOPIC: Sovaldi/Olysio
mallani


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RE: Sovaldi/Olysio
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Hi,

Just a word about biopsies. To an extent, they rely on the skill of the doctor doing the biopsy, and the experience of the Pathologist. A good biopsy is done under ultrasound or CT guidance, and at least 2 good length cores of tissue should be obtained, with each containing more than 7 portal tracts. If the Pathologist is experienced, this should result in a correct diagnosis in more than 90% of cases.

HepC affects the liver diffusely- admittedly the whole liver does not progress overnight from F3-4 to F4. However the biopsy involves the R liver lobe, which has the most advanced disease.

Unfotunately, in large hospitals, biopsies are usually done by junior doctors with little experience. This accounts in part for the fact that biopsies are not 100% correct.

Fibroscan is a bit diappointing. The MRI Liver Staging Scan will be almost as good as biopsy.

 

 

 

 



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Dzdayscomin


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If it helps I have been a decompensated cirrhotic for 3 yrs now, i had HCV g1 almost 30 yrs prior to tx and did the Sovaldi /Olysio tx and was cured, since that time things have improved somewhat as far as labs are concerned, except I had HCC and surgery to destroy the cancer, and am awaiting transplant, so as sad as this sounds, please don't get to upset because although cirrhosiss and ESLD is bad, it is a slowwwwww process if you watch your diet, etc.

How are your labs? Are your platelets and INR  ok? If you are not experiencing acities,  varicies, portal hypertension, or encephalopathy you are not as bad as you may think. 

It is critical to get regular MRI scans to watch for HCC because that could pose the greatest risk if it is not detected early.

Best wishes hang in there.

Duane



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
Tig


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Hi Rubye,

Yes, there's a significant difference between compensated and decompensated cirrhosis. Things start going wrong once you have decompensated. Things like ascites (fluid build up in the abdomen), varicies and encephalopathy, among other things. I have to agree that while compensated cirrhosis is an important factor to address, the most important issue at hand, I believe, is getting diagnosed properly and then treated correctly. The cirrhosis progression stops and things begin to improve over time!

http://www.hepatitis.va.gov/patient/complications/cirrhosis/decompensated.asp

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Rubye


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Maybe I'm in denial but I never have understood what difference it makes knowing what stage of stage 4 you're in once you know you have cirrhosis. I was originally diagnosed by a MRI and all my labs supported that diagnosis. Aren't there a number of factors that determine when your liver decompensates? More so than to what degree one's liver is cirrhotic? I've never had a biopsy or a Fibroscan and probably never will. It just seems like people make it too complicated.

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UNDETECTED 5/4/15 - 16 weeks after EOT, 1st treatment - Sovaldi and Olysio, Geno 1a, 67 year old with compensated cirrhosis, over 40 years with HCV.
Tig


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Hi Taylor,

Fibroscan is a specialized ultrasound test that measures liver density. Fibrosure is a blood test that looks for certain markers hoping to determine the likelihood of fibrosis. The routine ultrasound test you have scheduled does not provide the same information as a Fibroscan. There are many comparisons of accuracy between Biopsy and Fibroscan. In my opinion biopsy remains the gold standard. There are potential complications but they are rare. I've had several without any complications at all. The Fibroscan is gaining ground and is a credible procedure. The technologist performing the test is an important consideration as well. I would prefer either the biopsy or Fibroscan procedure when determining my fibrosis stage. 

http://www.myliverexam.com/en/lexamen-fibroscan.html

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Miracleinprogress


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Thank you both. Is the fibrosure and fibroscan the same thing? I was told that even biopsies aren't reliable because some areas of the liver are ok and if the needle goes in there, it would show better. Result. Same thing if they put it into a dead area. appreciate the help. My side hurts so just want this done with.

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Genotype 2b. Not in treatment yet. F4-Cirrhosis (they say) Unknown years. Could be 51 or 35 years.
mallani


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Miracle,

Relax and read my reply to your PM. You have plenty of time to find an educated doctor. Cheers.

 



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Tig


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Check with the Gastro doctor and avoid the GP that's herding you through like cattle. Doesn't sound very encouraging. It does take more than taking blood and handing out pills! A Board Certified Gastroenterologist goes to school for years to learn the specialty. They understand the disease processes, anatomy and physiology of the GI tract better than most. A Hepatologist is schooled further in the liver specifically. A specialist is important!

A specialist will likely do additional fibrosis testing. The Fibrosure test is inaccurate at both ends of the scale. Until I had a Fibroscan or biopsy, I would have to question the accuracy of the cirrhosis diagnosis. That's my opinion of course. But regardless, there are many stages of cirrhosis and you're not going to die anytime soon, please trust me. We have many members here that have cirrhosis, some decompensated and waiting on transplant. They can explain the process better than I and hopefully put your mind at ease. It's a slow, progressive disease. All I'm saying is, you have time to seek the specialist better suited to treating you and actually determining your own specific problem. Not that of a herd of cattle, just sayin...

So take a deep breath and do your best to relax. This too shall pass and we'll be here for you. Hang in there!

Tig    



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Miracleinprogress


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All I have is this site. Will check into finding a gastro even just for consult. I know I have it, I know all they can do is hand you meds and then take blood work. I have a good dr but can't understand him (chinese) and well he hoards you in and out like cattle and can never see that man stop moving just to talk. I NEED someone that will do that for me.
I'm still scared as cirrhosis sounds like a death sentence to me. I'll let you know what happens and thank you.

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Genotype 2b. Not in treatment yet. F4-Cirrhosis (they say) Unknown years. Could be 51 or 35 years.
Tig


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Hi Miracle,

Do your best to not get frightened. If you have a Gastro doc available, by all means get an appointment with that practice. A Gastroenterologist is far more qualified than a GP to address HCV. The cirrhosis has to addressed but it's not so dire that waiting for your GE consult will cause any additional problems.

You can call your insurance carrier and discuss your concerns. They can help you present this dilemma with your current doctor if necessary. They won't approve a protocol that isn't warranted and can politely inform them of the problem and the approved treatment. There shouldn't be a problem getting this straightened out. The Sovaldi/Ribavirin treatment is less expensive than S/O, so I'm sure your insurance carrier will be a big help getting your current doctor educated on the correct treatment.

I would still prefer the GE doctor and recommend you move in that direction if you have the choice. You've got nothing to worry about by waiting for that consult. See what you can find out on Monday and let us know. Take a deep breath and relax! You're going to be fine, I promise! 

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Miracleinprogress


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Now I'm scared. I don't seem to have a dr. that is aware or maybe he's confused, and we have no hepatologists in our area. I'm scared because I have Cirrhosis because I waited so long for a safe treatment and now one is here and I can't take it. I'm afraid of dying and feel that the cirrhosis won't keep me around much longer. All I can do I guess is ask for a consult with a gastro dr but then, there's more time added on to this.



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Genotype 2b. Not in treatment yet. F4-Cirrhosis (they say) Unknown years. Could be 51 or 35 years.
mallani


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I agree 100%!



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Tig


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Hi Miracle,

Just in case you missed the replies on the earlier thread, S/O is not approved for Genotype 2.  The trials proved this a non effective treatment for your genotype. You need to find a different doctor that understands these protocols. I doubt that your insurance carrier will approve it upon closer scrutiny anyway. In the off chance they miss this, why would you want to put yourself through all those weeks of an ineffective protocol? This is a very expensive treatment. You need 12-16 weeks of Sovaldi and Ribavirin. Just trying to offer you some advice. Best of luck...

Tig

 

"OLYSIO® (simeprevir) is a hepatitis C virus (HCV) NS3/4A protease inhibitor indicated for the treatment of chronic hepatitis C (CHC) genotype 1 infection as a component of a combination antiviral treatment regimen."



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Miracleinprogress


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Has anyone been on this treatment and could you fill me in on it? I've done the research but would love to hear from someone actually taking the drug.

Dr. wants me on this and waiting for approval now.

Thanks a bunches



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Genotype 2b. Not in treatment yet. F4-Cirrhosis (they say) Unknown years. Could be 51 or 35 years.
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