Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Hep C Discussion Forum -> New Members Area -> Well folks, here I go.
Post Info TOPIC: Well folks, here I go.
mallani


Guru

Status: Offline
Posts: 3398
Date:
RE: Well folks, here I go.
Permalink  
 

Hi Bill,

Having normal liver enzymes for a long time puts a different perspective on things. Although even cirrhotics can have normal enzymes, usually this means the liver is pretty 'peaceful'. Viral Loads fluctuate widely. In view of this, I withdraw any comments about the biopsy report.

It is difficult to get accurate information about the long term effects of Interferon . For me, I was fit and well before starting my current Rx despite 3 previous episodes of Interferon. Forum members tend to drift away after achieving SVR so we don't hear a lot about residual effects of Rx. Much has been published but it is difficult to decide what is a true side effect of Rx and what is actually an extrahepatic manifestation of chronic HCV. 2 of our members suffer from ME, which may be due to Rx. Have you read the ' stickies' in the Post Treatment section of the Forum?

Given the condition of your liver, I would wait 2-3 years for the best oral combo Rx. This will probably be the sofosbuvir/ledipasvir/ribavirin combo from Gilead or the Abbott trio. This is just my opinion. Good luck with your choice.

 



__________________

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
bill77


Member

Status: Offline
Posts: 5
Date:
Permalink  
 

mallani wrote:

Hi Bill,

Do you have a copy of your liver biopsy report? It's just that an inflammation score of A-0 is most unusual. With a long history and a viral load of 5M, you will have 1-2 trillion viral replications in your hepatocytes every day. Scores of A-0 are reserved for very low viral loads, little (if any) fibrosis, and normal liver enzymes. Unless your liver enzymes have been normal for the last year, the A-0 is possibly incorrect. Liver biopsy has limitations in that only a small part of the liver is examined, and the interpretation depends on the skill of the Pathologist. This is only my opinion, based on what I have seen over the last 30 years. Do you have access to Fibroscan (transient elasticity)? This is a very good additional test.

If you try the current triple Rx with Victrelis or Incivek, you would probably only do 24-28 weeks, depending on your VL response. Your chances of SVR are 70-80%. The rates for the all-oral regimes is not known as yet, but for a 62 yo CT prior-relapser, it might be around 80%. I've probably had HCV since 1969, was A-0, F-0 in 1984, A-1, F-0 in 1990, A-3, F2-3 in 1998 (revised to F3-4), and F-4 by Fibroscan in 2008. I've survived four bouts of treatment with Interferon (total of 3.5 years) but understand your concern. The visual problems from Interferon are mainly an optic neuritis but this is not common. Good luck.



-- Edited by mallani on Saturday 23rd of March 2013 08:53:26 AM

 Malcolm,

Not sure what the correlation is between inflammation and viral load and I know that there is some range of error in the interpretation of a liver biopsy. My doctor did not seem perplexed by the results. Have read about Fibroscans but have'nt had one. I guess we all have become fairly astute about HCV with access to the Internet and 20+ years of this condition to learn about it after all we are our own most loyal patients. Sounds like you have been fighting this very aggressively for a long time and may very well have beaten it, congratulations. My liver enzymes have been normal for a long time and if the extent of my fibrosis is greater than my results I would think not by much and therefore I should accept the biopsy at face value however as you expressed, this is not a linear process. What puzzles me is the associated sequelae of HCV infection, which of those may I expect to find some resolution from with a SVR and what long term conditions are possibly attributable to interferon if any. I was hoping the board may have some insight along these lines which would help me make a decision to wait or not. Cheers

 



__________________

Geno 1b,IL-CT,A-0 F 1-2,Current VL 3Mil,62yrs old,Relapser from alpha inteferon- Riba 1999, Started Incivek, Peg, Riba 6/18/13, UND @ 4, 12 weeks
JIme


Guru

Status: Offline
Posts: 733
Date:
Permalink  
 

I did 8 weeks of triple tx in the fall of 2011 and it did not work for me. It was my first attempt at tx. Something changed in my body from that tx.  I can't put my finger on it exactly but something in my body chemistry changed and has stayed changed since then. I won't go into details here but PM me and I will. Nothing drastic but it did change me. I was on teleprivir, peg interferon, and riba.

I got on a trial in March of 2012 with 7977 for 24 weeks and I was cleared on the virus. There were no sx. None! And everyone on my trial cleared. Everybody.

The only question I would have about waiting is would I be able to take the 7977 without interferon. I have read that one of the first approvals they will get is for 7977 with interferon. I would not take it with interferon. What's the point of waiting if you had to take it with interferon?

I'm now 59 but my biopsy did not change in the last 10 years. From 2002 to 2012. Stage 2 , level 2. I do not drink or do drugs and I worked out like a maniac for those years. I think that helped me. I did start to get pretty tired the last 2 years and did not work out as much.

Here my 2 cents Bill. Take it as one mans partially infromed opinion.  I would wait if I could. Not taking interferon would be the deciding factor for me if I was in your position.

I'm sure that whatever you decide you will make work and you will be clear of this virus in the near future. Good luck to you.

 

 



__________________

jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi Bill,

Do you have a copy of your liver biopsy report? It's just that an inflammation score of A-0 is most unusual. With a long history and a viral load of 5M, you will have 1-2 trillion viral replications in your hepatocytes every day. Scores of A-0 are reserved for very low viral loads, little (if any) fibrosis, and normal liver enzymes. Unless your liver enzymes have been normal for the last year, the A-0 is possibly incorrect. Liver biopsy has limitations in that only a small part of the liver is examined, and the interpretation depends on the skill of the Pathologist. This is only my opinion, based on what I have seen over the last 30 years. Do you have access to Fibroscan (transient elasticity)? This is a very good additional test.

If you try the current triple Rx with Victrelis or Incivek, you would probably only do 24-28 weeks, depending on your VL response. Your chances of SVR are 70-80%. The rates for the all-oral regimes is not known as yet, but for a 62 yo CT prior-relapser, it might be around 80%. I've probably had HCV since 1969, was A-0, F-0 in 1984, A-1, F-0 in 1990, A-3, F2-3 in 1998 (revised to F3-4), and F-4 by Fibroscan in 2008. I've survived four bouts of treatment with Interferon (total of 3.5 years) but understand your concern. The visual problems from Interferon are mainly an optic neuritis but this is not common. Good luck.



-- Edited by mallani on Saturday 23rd of March 2013 08:53:26 AM

__________________

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
bill77


Member

Status: Offline
Posts: 5
Date:
Permalink  
 

Zlikster and Malcolm,

I am having a hard time with this decision. Also my treatment has been delayed a month or so and if it drifts much further my decision may be made for me. My relative mild fibrosis and inflammation are indeed odd in that i was most likely infected in the 70's as a medical worker and should, you would think, be more fibrosed. My doc said that if I were clearly F-1, after all this time, he would do nothing as I would likely not succumb to this malady (hadn't heard that one before). All that said i have multiple issues besides fatigue and my vision being one. I am nervous that interferon may reek further havoc with it and possibly not be reversible. On the other hand I am a 1b prior relapser and think I would clear (SVR) with the current SOC. 48 weeks will be a grind but I did interferon and riba before and worked during treatment so now as a retiree I could lay on my ass and only move and exercise when i feel like it. It is tempting to wait but my doctor is conservative and is set on the current SOC regimen. My insurance will cover that treatment but I am not sure what may happen in the future with more expensive drugs. Maybe it's just a "bird in hand" and knuckle down dilemma, I don't know. c

Take care

Bill



-- Edited by bill77 on Saturday 23rd of March 2013 04:10:58 AM



-- Edited by bill77 on Saturday 23rd of March 2013 04:14:19 AM



-- Edited by bill77 on Saturday 23rd of March 2013 04:20:42 AM

__________________

Geno 1b,IL-CT,A-0 F 1-2,Current VL 3Mil,62yrs old,Relapser from alpha inteferon- Riba 1999, Started Incivek, Peg, Riba 6/18/13, UND @ 4, 12 weeks
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi Bill,

It will be a hard decision whether to treat now or wait. The guys are a bit optimistic about sofosbuvir. Sure it will probably be approved in late 2013-early 2014, but only for use with Peg and Riba in Geno 1. You will have to wait for approval of Ledipasvir which will take 12 months longer. The Abbott trio may be approved sooner ( late 2014) and may be just as good. I was always taught to add 1 stage to the Fibrosis score, just to be safe. Good luck. Cheers.



__________________

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
Zlikster


Guru

Status: Offline
Posts: 791
Date:
Permalink  
 

Hi Bill, if your liver is ok (and it seems with very low fibrosis score and no inflamation) and you do live in USA, my personal opinion (i am not a doc hey!) would be wait for new meds, since it seems they will be available end of 2013/ early 2014 in USA. Lots of folks here went thru clincal trial with new DAAs+riba, and let them tell you what a difference it is from interferon based therapies (almost no sx!)

I have worries about long term interferon sx (in my case particualry audiotory nerve/cochela damage), but living in Bosnia doesn't helps in getting new meds anytime in near future. Even my hepa doc joked we gonna get Sofosbuvir in 2050 here, she still can't get Telaprevir or Boceprevir for her patients! so i went for SoC (interferon+riba) in meantine...

just my 2 cents

all the best



__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
Bouba


Senior Member

Status: Offline
Posts: 171
Date:
Permalink  
 

Hi Bill,

I was A2, F3 last October when I started triple with Incivek.

My hepatologist just told me, that if Gilead news were there 6 months ago, he would have advised to wait until the new meds are in the market

(tentatively end 2013 in USA, 2014 Europe). 

Your liver activity and fibrosis are low, which is good news! 

 



__________________

58 yo male, HCV since 1981. Gen 1B (IL28B, CT). Diagnosed 1999,  VL before tx 100'000. Biopsy A2, F3 fibrosis. Naive, SOT (with Incivek) Oct 26, 2012. UND @ week 4, 12, 18, 24, UND 12 and 24 weeks post-RX
Cinnamon Girl


Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Hi again Bill, yes you`re right, there is a risk of post tx health problems with interferon based treatment regimes, but then I think the longer you wait the more you have to take account the risk of further damage to your liver from the Hep C virus, especially as you get older.

I didn`t do the triple tx (I had gen 3a) but I completed my SOC tx about 2 years ago, when I was 61, and have so much more energy now.  I hadn`t realised the difference it would make and in some ways wish I`d done it sooner, but that`s the way it happened.  Of course, that`s just my story, it`s not the same for everyone.

~ Jill



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
bill77


Member

Status: Offline
Posts: 5
Date:
Permalink  
 

Malcolm, My last biopsy was last Nov. They rated my fibrosis between 1 and 2 (mild fibrosis) and inflamation A-0. I realize that my age can be a factor in the rate of progression. I am envious in the prospect for a shorter less poisonous course. So close yet so far away but i am sure there are many like me and will most likely op for the SOC.

Cheers Bill

 



__________________

Geno 1b,IL-CT,A-0 F 1-2,Current VL 3Mil,62yrs old,Relapser from alpha inteferon- Riba 1999, Started Incivek, Peg, Riba 6/18/13, UND @ 4, 12 weeks
JIme


Guru

Status: Offline
Posts: 733
Date:
Permalink  
 

I used to have complete strangers tell me I looked tired....lol.

Now I do feel great and getting better each day.   Good luck.



__________________

jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi Bill,

Just a question. I notice you have described your liver as G-0, F1-2. G-0 is presumably the degree of inflammation, which is usually written as A 0-4. How long ago was your biopsy? I'm sure you are aware that liver fibrosis is not a linear progression, and increases rapidly with age. This may play a part in your decision. Cheers.



__________________

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
bill77


Member

Status: Offline
Posts: 5
Date:
Permalink  
 

Thanks everybody, Jill, you are right I have been tired for 20+ years, Macomb you are also correct, 3 x wk was the drill. Fairly confident I'll clear this time. My liver is in fair shape but was wondering if you ever feel better if you are "Cured". My doc says I may never escape this malaise even if I do achieve a SVR.
I was just curious to know if anyone that has cleared but believes that interferon has long lasting or residual manifestations. I would think that people that don't have any problems with it are not posting to that effect as much but mostly the ones that think they have issues from interferon's use. This could influence my choice in that interferon free regimens are hopefully only a few years away. However my decision is right now and time and age are not my friends. Guess this should be posted in the "Post Treatment" thread for responses and will repost there.
Thanks so much to the board and all the good people here.
Cheers
Bill

__________________

Geno 1b,IL-CT,A-0 F 1-2,Current VL 3Mil,62yrs old,Relapser from alpha inteferon- Riba 1999, Started Incivek, Peg, Riba 6/18/13, UND @ 4, 12 weeks
Biggyb


Guru

Status: Offline
Posts: 820
Date:
Permalink  
 

Welcome to our world, i am doing 48 wk triple with Victrelis, ~



__________________

58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
2willy


Senior Member

Status: Offline
Posts: 256
Date:
Permalink  
 

Just turned 62 and in the middle of tripple therapy, have had different side effects so far and it is not a picnic but I believe it is worth it.  This is my first time round with these therapies and yes this forum is a life saver

bill and family



__________________

Geno type 1  rib and peg September 2012 , 5 weeks tripple and viral down to < 15 und april Aug 25 finished stay at peg 3 rib and eprex + blood transfussion finished treatment Aug 25 2013
Cinnamon Girl


Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Hi and welcome, Bill!   If you decide to go with the triple therapy with incivek you`ll stand a much better chance this time round, we have many people here who have been successful on that regime and have cleared the virus.  Whether you want to wait for new drugs depends a lot on the health of your liver and how soon you want to get on with it.  Malcolm has a good point about your age, and I`m guessing you`ve been infected for quite a long time. 

We`re here for you whichever way you decide to go, and you`ll find all the support and info you want on this forum. 

Best of luck!  smile  ~ Jill

ps - It`s quite helpful if you write you genotype details etc in your `signature` line, then it will show at the bottom of all your posts.  You can do that in your profile settings.



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Matt Chris


Guru

Status: Offline
Posts: 1781
Date:
Permalink  
 

Yes Welcome Back

The Best to your new efforts , with the extra DAA that you have added with this treatment it it gives your body very good odds at blocking the replication cycle of HCV.

Keep in contact with the forum it can provide you with great insights on this exact treatment as many have completed it with success.

Matt



__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi Bill,

Welcome to the Forum. I like your avatar- the NS portion of the HCV is fascinating.

Plenty of us have done triple therapy after previous attempts with Interferon and Ribavirin. Back in 1999, you would have been on the old x3 weekly Interferon injections. The Peginterferon is much more effective. I have just finished 48 weeks on the Victrelis triple, after 3 previous attempts with Interferon +/- Riba. The Forum is getting good results from triple therapy- at your age, I wouldn't wait too long. Good luck.



__________________

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
bill77


Member

Status: Offline
Posts: 5
Date:
Permalink  
 

Hi everybody,Bill here, about to start triple therapy (Incivek) March 22nd. My chances for SVR with my particulars should be good but wonder if more interferon vice waiting 2 years is worth consideration in lieu of what is now being questioned about repetitive interferon regimens.confuse

Geno 1b,IL-CT,G-0 F 1-2,Current VL 5Mil,62yrs old,Relapser from alpha inteferon- Riba 1999



-- Edited by bill77 on Tuesday 12th of March 2013 03:33:21 AM

__________________

Geno 1b,IL-CT,A-0 F 1-2,Current VL 3Mil,62yrs old,Relapser from alpha inteferon- Riba 1999, Started Incivek, Peg, Riba 6/18/13, UND @ 4, 12 weeks
Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.
Hep C Discussion Forum -> New Members Area -> Well folks, here I go.
Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.