What HectorSF said is correct. I am ESLD stage 4 decompensated liver with HE and high Hep C viral load. I was signed up for the tx but my doctor pulled me from it due to decompensation and % of adverse effects (death) for a person w/my levels to do tx. PLUS, even if I had been able to do the tx I still would have had to have a liver transplant because DECOMPENSATED livers DO NOT regenerate. It had made no sense to me to take a good liver and put it in my body with high Hep C load but he said that after transplant it would take a year or two before the Hep C would even start attacking my new liver and by that time they will have something even better than tx to treat Hep C. I have been studying up on the tp side and there are SO many people waiting on a liver...so people, find a good hepatologist and liver specialist and do what they say before you get to this stage. If you are involved in the community, start talking about organ donations...even if you are a organ donor, 40% of donors families will refuse to allow it to happen. When I was first diagnoised with Hep C my viral load was so high they gave me, maybe, 30 days to get my affairs in order and a tape on how to handle dying from Hep C alone. Most people it seemed on that tape would just go to sleep and not wake up. But ESLD will be painful so do whatever you can NOW to get rid of this. You don't want to get to this stage, your options are very limited. He said liver wise I am stable because I am watching a protocol of diet, sleep, walking, and no stress. However, my Hep C is out of control and high again. Over last 20 years it has gone up and down ,,,, I was a non responder on 3 trials. The interferon & peg attacked my muscles...the riba attacked my eyes and skin but at least I tried. Don't give up before you get to this stage.
Hi everyone,
I am cirrhotic and 3 days off the end of my second week of triple therapy (boc)
Have all the usual sx but felt pretty bad before so just happy to be hopefully moving in the right direction,
Really helpful to read all the posts here.
I had my doctor appointment today and found out (as you stated) that I am not cirrhotic. I was confused with all the information going in one ear and out the other! I guess that is why I possibly can do 24 weeks if all goes well. He'll make that determination at 4 weeks. I had my blood work today and did develop a UTI so am on antibiotics. After one pill, it already has a positive effect. 6 days left of this. Hoping this doesn't recur often. You can't have dairy around these pills and dairy is my staple right now so I'm having to alter my fat diet. Also the doctor said if I get sufficient fat, I shouldn't experience the anal issues. He said from his experience, this is more prevalent in those not getting the full 20 gr of fat. We'll see. Thanks again Hector for the wealth of information. Very informative and I'm learning a lot. Your help is appreciated.
Wow...you are my newest hero! What a wealth of information. Are you in the medical field? I learned so much from you. I guess I'm in the relapser bridging fibrosis stage of 85%. Thank you Hector for the detailed information.
Such great information.
Good luck Yodennis.
Indeed I'm aware it will be a good year before there is a decent sample secondary to the 48 week mandate with cirrhosis. And I'm aware of the trial stats. Nevertheless I finished my 48 weeks in July and some cirrhotics, i.e. "stage 4" started treating before me so I thought I'd ask.......Really all my posts on this helpful forum are an attempt to mitigate my "living with a question mark" anxiety so I'm asking for others tx experiences while I wait for my 6 month post tx date and it's PCR result! My best. d
Cirrhosis is stage 4 liver disease. Stage 3 is bridging fibrosis which means
the the collagen or fibrous tissue bridges adjacent portal areas (located at the corners of liver lobules). So fibrosis staging measures the amount of the liver lobule that contains collagen. A liver lobule is a unit of the liver that is made up of liver cells (hepatocytes) arranged around a central vein. The blood flow from the ends of the liver lobule (portal area across the lobule where it interacts with the hepatocytes (the liver cells that do most of the work of the liver). So when the collagen develops it interferes with the proper functioning of the liver cells and the liver as a whole.
Cirrhosis is the replacement of liver tissue by fibrosis, scar tissue and regenerative nodules (lumps that occur as a result of a process in which damaged tissue is regenerated), which leads to loss of liver function.
It is possible to still cure the hepatitis C virus when a person has compensated cirrhosis and partially reverse the liver damage although the chances of cure (SVR) are much lower than for people with lesser liver damage. For example with Incivek the statistics are as follows.
SVR by Baseline Fibrosis Stage and Prior Response
Null responders
No, minimal or portal fibrosis = 41%
Bridging fibrosis = 39%
Cirrhosis = 14%
Huge difference!
Prior Partial Responders
No, minimal or portal fibrosis = 72%
Bridging fibrosis = 56%
Cirrhosis = 34%
SVR rate is cirrhotics is about 50% less than those with minimal or portal fibrosis.
Prior Relapsers (Relapsers are much like treatment-naïve patients)
No, minimal or portal fibrosis = 86%
Bridging fibrosis = 85%
Cirrhosis = 84%
When the liver is too damaged and the person develops End-Stage Liver Disease (with complications such as ascites, bleeding varices, hepatic encephalopathy etc.) a person can no longer treat their hepatitis C and the liver damage is irreversible. In time that person will need a liver transplant to continue living.
So whether a person can cure their hepatitis C and be able to have their liver disease partially reverse, depends upon how damaged their liver is when they start successfully treating it.
Metavir
The Metavir scoring system was specially designed to evaluate
the liver in people with HCV. The scoring consists of using a
grading and a staging system. The grade gives an indication of
the activity or amount of inflammation and the stage represents
the amount of fibrosis or scarring.
The grade is assigned a number based on the degree of
inflammation, which is usually scored from 0-4 with 0 being
no activity and 3 or 4 considered severe activity. The amount
of inflammation is important because inflammation somewhat
correlates with the development of fibrosis.
The fibrosis score is also assigned a number from 0-4:
• 0 = no scarring
• 1 = minimal scarring
• 2 = scarring has occurred and extends outside
the areas in the liver that contains blood vessels
• 3=bridging fibrosis is spreading and
connecting to other areas that contain fibrosis
• 4=cirrhosis or advanced scarring of the liver
Cheers!
Hector
Yes, count me as a svr with cirrhosis. I did the same trial as can-do ( thank you can-do) because it sounded promising and have been svr for a year and a half. Still have cirrhosis but doing well. Go Victrellis!
Bill1028 is correct.
I was first DX with cirrhosis in early 2005, treated with SOC for 86 weeks and relapsed 1 month post, was in the last Victrellis trial and now I'm SVR.
A couple others in that trial that was cirrhotic and now SVR were ejoli and Choprchk
I haven't been around that much, I think there was about 8 a year ago. For the record Cando and I did BOC which is now known as Victrelis.
Thanks so much for the info. Just to show you how green I am, I had to look up esophageal varices. I never heard that before. It sounds like it adds to the complications. I'm learning so much just reading these responses. Thank you all for being so free to share.
I wish you Coeric the very best of luck in your post treatment success. We're all praying for your continued success.
Pat
If I recall correctly, Can-do was in an Incivek trial (triple med Tx) and he SVR'd.
I do think it is a bit early for cirrhotics to report in. I doubt many have reached 24 weeks EOT because they had to do 48 weeks.
great news about the UND at 4 weeks. will you do a 12 week viral load?
also sorry about the hijack.
eric
Stage 4 with Grade 1 esophageal varices. i am very grateful to have had the opportunity to treat. thank you.
great questions. i was told last week that if i am successful, i will stabilize the liver damage. the PA did say that they had one cirrhotic patient that got to SVR, but then needed a transplant several years after treating. also with cirrhosis we have to continue checking for liver cancer after SVR. it's important to know the stage and to have had a recent biopsy prior to treatment in order to determine the length of treatment. if you have cirrhosis you try to do 48 weeks with incivek. if the virus is undetected at 4 weeks and you are stage 1 or 2 you get off at 24 weeks. the first hepatologist i spoke with said stage 3 would require 48 no matter what. i think the doc that ended up treating me may have be a little more lenient. the single punch biopsy only samples a small part of the liver and may not be representative of the liver. at transplant hospitals trans-jugular biopsies are performed and 3 samples of the liver taken. in addition to the tissue the pressure gradient in the hepatic vein is also measured and is a direct measurement of the resistance in the capillary bed in the liver. this is reported as hepatic vein pressure gradient (hvpg) and is a good indicator of liver scaring. the hvpg combined with biopsy seems to be standard of care for a pre-transplant patients.
ask Hector, he is the expert. Well others too, but he is very knowledgable.
@yodennis again, hoepfully she will chime in, but Dee1956 is SVR, and I really thought others as well, but maybe coeric is correct about the 48 weeks thing, so maybe I am think about 12 weeks post tretament UND's.
Now I'm curious as to whether I'm considered cirrhotic or not. My doctor said that there is still a chance I will only do treatment for 24 months (will know at week 4 I guess with viral count). If you're cirrhotic, it sounds like you must do 48 from what you're saying.
good info as always on this forum. We're all learning especially ME!
What stage are you?
hang in there...you're almost there. AND there's always hope. With all the research going on, there is always a new treatment coming out. We have so much to be thankful for.
That's good to know if true. I'm new at this and I'll double check with my doctor but was told I had mild cirrhosis years ago. I double checked on my last biopsy and was told it was stage 3. I didn't specifically ask him if that was cirrhosis though. I'll ask if I have cirrhosis tomorrow when I see the doctor. This new doctor hasn't specifically mentioned cirrhosis as it was a previous doctor under previous treatment. Maybe someone can give us information on whether you can reverse cirrhosis with treatment or once you have it, it's permanent.
thanks,
Since the FDA only approved triple therapy last May and us cirrhotics need 48 weeks, we will only begin to see SVR reported this coming November. there are some here that may have had cirrhosis and had to discontinue therapy before 48 weeks. hopefully they will chime in. If i recall correctly there were only about 200 cirrhotics in the trials for incevik. although i don't remember the numbers, it was more than 50 percent that made it to SVR. i finished last week and had the end of treatment talk with the PA. he said if we are going to relapse we will probably due it within the first three month following treatment. he also said that if i did relapse it is not the end, because he is anticipating that we will have another drug available in 18 months. maybe he was just giving me hope.
I always thought stage 4 was cirrohsis. Just a curious comment.
@yodennis, there has been SVR with cirrohtics treating with triple therapy, they will chime in eventually.
I'm very interested in this also as I was a responder/relapser with previous riba+interferon. I'm just finishing week 1 of triple treatment. I have type 1b, stage 3 damage/cirrhosis. I'm 64 and hoping this is the last time I have to deal with this. I know the doctor told me the percentage of cure using triple therapy was 86% with my past history. Hoping to be one of those 86%-ers.
Good luck on continuing the undetectable status. It's looking good for you.
What stage are you and type?