JUST GOT DIAGNOSED WITH EARLY CIRRHOSIS NEED SUGGESTIONS

[yary5629]

I just got the news that I have early cirrhosis from my Hep C that I got around 40 years ago.I am a  Geno 1a and have been treating with a  GI for the past 40 years,  I  had a Fibrosure test that came back F4 early Cirrhosis so he send  me to a Hepatologist. I had not treated my Hep C in the past due to my depression  issues. The new Dr. had me do MRI to check for cancer and came back no lesions and mild enlargement of the spleen. . Did Endoscopy,  I have small  varices and mild portal hypertension. My lab work came back AST 52,  ALT 89, platelets 130K, viral load 1.3 million  and everything else was within normal range..The new Dr. said  based on my lab results he considered  me to be at Child P A scale and it would take about 10  years for me to into Child P B . (???) I have read lots  regarding the new med Sovaldi and Olysio and I was thinking he was going to put me on it but he said I can wait until the end of this year and treat with a better med that  is coming out with less side effects and gave me appointment for Nov.  I am afraid since I feel time is running out for me and as crazy as it might sound I am also afraid the meds will worsen my liver condition. My husband suggested to go for a second opinion and I am just very confused.  Any suggestions?

[Sarah1949]

I just started Sovaldi/Olysio 4 days ago and went through the struggle of whether to go for it now or wait for the new one, Sovaldi/Ledipasvir. For me, it boiled down to insurance concerns because I have Extra Help and in my state, Oregon, there is a lot of political stuff going on that can influence whether one even gets a prescription or not. Because the Sovaldi/Olysio was a sure thing I decided to go with it rather than wait. If insurance is not a problem for you, perhaps you should wait. Although it is approved for an October 10 release it will still take time to get on insurance formularies, probably a month or two.

[Magnum]

Oct. 10th is the magic date the new drug at 99% clearance is going to be available by Gilead Pharmaceuticals. Ask the doctor... Good luck...

Magnum

[Cindy815]

This is unbelieveable to me.  My husband tx with Incivik and he was F4 cirrhosis, the tx was horrible but it was suppose to be the latest and greatest.  I rememeber we could not wait until it came out so he could tx.  He completed tx and relapsed shortly after.  I use to lay there and watch his breathing at night because it was so rapid on this tx. It was horrible.  Now they are taking it off the market, how did it ever get to market?  I thought that was what trials were for or did they just not have enough people with advanced liver disease in their trials for fear it would not be FDA approved.

Emotional - you have every right to be emotional, believe me I understand.
I am hoping and praying the new tx will work for our husbands and for everyone.  Sorry for the ranting this has been a long journey.

Take care, cindy

[Willy50]

Hiya Magnum. I have wondered how you have been.
I'm glad to hear your news, very glad.

I just lost a friend a month ago. It has been hard, I knew things were bad but somehow hoped the cavalry would rescue her at the last minute.  It didn't happen.  

So I am glad to hear you made it through, Hector did as well.

Great to see you are well!!

willy

[Magnum]

Boy does your story sound familiar. I treated 5 times with no success and will start with new meds. Transplanted 9 months ago and doing great. Have you asked your doctor about a liver biopsy? That usually tells all. AST and ALT readings come and go, it's the MELD score you should have your doctor check you for. Cirrhosis happened to me and in my case progressed rapidly and I was extremely lucky to get a liver after being on the list for only one month. As for a second opinion....absolutely! I went to two Gastroenterologists. Each had his own take. I felt much more comfortable and relied on the second one. He treated me for 13 years and followed step by step my progression and told me exactly the time to get on the list. That's the kind of doctor you need. Good luck and a long long life...

Magnum

[Dee1956]

Hi please don't feel like time is running out.  I think your doctor is doing the right thing in waiting for the new medication.  
Just my humble opinion.  I remember being made to feel as if I had to treat right away.
You have time for a second opinion, time to think it through and make a decision.
Good luck
Dee

[Dee1956]

Hi Nan, your words really hit home for me.  You are so right.  

[flyinlynn]

yes I have heard that too. say good bye to the old wonder drug that didn't work so well

[nan535]

My husband's doctor told us just last week they are taking it off the market here.  Found this link confirming that:

http://www.bostonglobe.com/business/2014/08/12/vertex-stop-selling-hepatitis-drug-incivek/El0jtOpH9I1CaIgQpSUKWO/story.html

All I have to say is "Good riddance!"

Nan

[flyinlynn]

Hi nan

A couple of people had posted about the article. I see it is from Israel so I am guessing it is because Sovaldi and Olysio are not available there yet. Apparently it is the only option for the sickest people there at this time. They don't have time to wait so that is the best they can be offered it seems from the article.

No, I  would not want to take Telaprevir at this point since we have the new meds here in the US, but if it was my only option I would have to consider it

Hope your husband can find a cure soon
Lynn

[nan535]

"...in our view should be given mainly to patients with advanced disease that cannot wait for the new drugs to be available and affordable.”

I think it is totally irresponsible to even consider giving this triple treatment to anyone who has advanced liver disease.  Instead every effort should be made to get these new drugs to these patients. My husband was put on triple treatment with Incivik in late 2011 when he had decompensated cirrhosis. The result was severe anemia, numerous blood transfusions,  and he came very close to suffering kidney failure. He had to stop treatment after only  5 weeks.
At the time not enough was known about the effects of this treatment on patients with advanced liver disease and it was the "new hope" for curing this virus. But there is no excuse now.  The results are in. To give this treatment to patients with advanced disease is like handing them a loaded gun and telling them to pull the trigger.  They must be nuts to even consider it given what they know now!

Guess I'm still a little emotional about everything he has gone through...would not wish it on anyone.

Nan

[flyinlynn]

OK success I found the article and they are definately spaeking about Teprevir and Boceprevir which are not recommended per the AASLD guidelines

excerpt

Efficacy of triple therapy varied among Israeli patients with HCV
WASHINGTON, D.C. — Israeli patients with hepatitis C virus infection genotype 1 showed varied improvements after protease inhibitor-based triple therapy, according to data presented at ICAAC 2014.

Researchers at the Soroka Medical Center in southern Israel treated 55 outpatients with hepatitis C virus (HCV) genotype 1 with telaprevir (n=39) or boceprevir (n=16) in combination with pegylated interferon and ribavirin between September 2011 and November 2013. Patients were followed for 6 months post-treatment.

“In our experience, protease inhibitor-based triple regimen for HCV genotype 1, though more effective than previous dual treatment, is still limited in effectiveness and holds major safety issues,” the researchers wrote. “In light of the era where new, much more effective and safe [direct-acting antivirals] begin to emerge, the triple therapy in our view should be given mainly to patients with advanced disease that cannot wait for the new drugs to be available and affordable.”

[flyinlynn]

I heard something about that earlier . Do you have a link? Which protease were they talking about?

I have heard Telaprevir was kinda difficult but that is not the current recommendations here in the US. Most of us are taking Sovaldi and Olysio some are taking interferon and some have ribavirin. Sovaldi is a HCV NS5b polymerase inhibitor not a protease inhibitor. And the safety profile for Sovaldi and Olysio have been good

Here is a link for the AASLD American Assosiation for the Study of Liver Diseases for the current recomendations for treatment of hep c with and with out cirrhosis, compensated, decompensated, and post transplant by genotype

http://www.hcvguidelines.org/sites/default/files/full_report.pdf

With your status the guidelines would probably say Sovaldi and olysio with or with out ribavirin for 12 weeks.

Also Sovaldi /Ledipasvir single pill fixed dose is on the horizion of being approved this fall probably October 10th and has been shown to be very effective.

Good luck to you
Lynn

[yary5629]

Hello, I was reading yesterday article in the HCV Advocate website that indicated that protease inhibitors based therapy had limited effectiveness and had major SAFETY  issues.  They suggested these treatments to patients with advance disease that cannot wait. I wounder why they would treat a patient with advanced disease with a med that has major safety issues? I would think that there is a risk the meds would make the liver worse. Are they talking about patients in the B or C class? Thank you for your input.

[flyinlynn]

Hi

I have hep C genotype 1a known about it since 1989 and treated 3 times unsuccessfully 3 time null responder. I was diagnosed with early cirrhosis in Jan 2008.

Your Child score is a combination or some of your test results and a way to grade how severe is you cirrhosis. Here is some info about Child scores (also called Child-Turcotte-Pugh)

http://www.hepatitis.va.gov/provider/tools/child-pugh-calculator.asp

There is also another score frequently used cald the MELD score again based on your blood tests

http://www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-model-unos-modification

I would imagine your doctor want so wait for the newest and soon to be approved medicine which is having near 100% success at eradicating th eHep c virus. The current meds are very good but the new one looks even better.

The medicine is a sindle pill combo of Sovaldi & Ledipasvir is it supposed to be FDA approved by October 10th and then maybe a month or 2 before patients will be able to get the medicine by prescription.

Hope that helps some. I am sure you have many questions at this point. We will try to help as much as we can to provide you with good information so you can work with your doctor to make the best choices for your treatment

Good Luck
Lynn

[zarmar]

There are members in this community expert on treatments and options to consider to help your liver heal.  For my part, I'll encourage the second opinion with a hepatologist preferably from a large teaching hospital.  Is one near you or are you able to travel?  Even thought my hepatolgist is part of a recognized transplant center, I sought a second opinion.  There are doctors who will discourage this thinking it will confuse the patient.  But my experience is the opposite. The consult opinion helped clarify my situation and increased my learning about options.  I sought consults from large specialty hospital 7 hours away.  I sent local records of biopsies, scans, and images ahead of my appointments -- I went before treatment and again a few weeks ago at end of treatment -  for review or evaluation by the consult hematologist and their pathology departments.  They don't redo or duplicate tests I just had done, but they read the slides, images and findings.  There can be subtle interpretation variations that are significant.  There is a lot of new learning recently about the liver and impact of genes, lifestyle, other illnesses that not all doctors know or express in same way.  Check your insurance for coverage if you can't cover this yourself.  My BCBS product covered in-network consults even when practicing in another state.  Hope this is helpful - ZM