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Hep C Discussion Forum -> Post Treatment -> 6 years post treatment
Post Info TOPIC: 6 years post treatment
mallani


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RE: 6 years post treatment
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Hi John, thank you for the clarification. I found your initial story confusing, not fabricated. To progress to cirrhosis in only 11 years is very unusual. Also, varices are a late development in cirrhosis so to have had varices since 2004 is pretty unlucky. Your list of treatments seem a bit cruel, as you are obviously interferon- insensitive. I can understand you having a trial of celgosivir as this was Canadian. Your future treatment options are obviously limited, apart from the T. word. All the best.



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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
c99


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You are most certainly mistaken..In 1998 I recieved 1 year of Interferon. 2nd round was Peg Interferon,3 rd round was added riboviron.4th was added celgosivir.. 5th round was the pegasis prefilled injections.I have been diagnosed with cirrosis in 2000,so why it's effecting me so bad is beyond me.I have had esophigal varices since 2004 and have been on Nadolol since.I am in Canada and my liver specialist out of Toronto General Did put me on these treatments which cost me nothing because it was covered by the pharma trials out of US....I am sorry if you feel my story is fabricated.As I said I have severe brain fog.I go for more testing in 2 weeks and my doc. is also setting me up for a CT scan..I guess I don't know my disease level..I know I have been compensated under Level 4 out of 5.1 below cancer iwith the Canadian Red Cross class action..I am sorry..This was a mistake! 



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mallani


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Hi c99, I find your story confusing. You say you have esophageal varices, but liver biopsy only shows fibrosis Stage 2/3. Sorry, varices only occur in cirrhosis (Stage4). You also say you have had many liver biopsies since 1998- this is strange. I am also surprised that you have developed cirrhosis so quickly-if you acquired HCV via a blood transfusion in 1989, this is only 23 years. Unless you have coexisting hepatitis B, HIV or haemochromatosis, this is very unusual in a young person ( you say you are now 42 yo). I also find it hard to understand why you had 5 lots of Rx since 1998. If you are in Canada, Peg interferon and ribavirin would have been available then, but no Hepatologist would have prescribed 5 courses . Back then, the cost would have been enormous.

Please clarify any of the above if I am mistaken. Unfortunately ,with varices, you would not be accepted onto any trials of the new drugs.



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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
Mary Jane


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c99 wrote:

I have ben treated for Hep C 5 times in 8 years with failure.My last treatment of Pegatron ended in Jan 2007.Since then my life has taken a drastic fall.I have lost all energy,ringing in one ear constantly,stomach pain,depression,fibromyalgia,can't take the cold, major brain fog and much,much more.Biggest of all is my wife said I am not the same person anymore and haven't really gotten along for the past 10 years.It seems like I am punishing her staying with her.Mt question is how do you deal with this?I Never would have taken any treatment if I knew this would be my life.I don't know what to do anymore.I am 42 and can't control my own emotions..

 Hang in there dude, yes there are side effects to these drugs, as I am sure you are well informed. I hope some of the Guru's jump in here, but the things you describe are also the lovely ill effects from HEP C..  brain fog check- RA or fibro check- sensative to the cold- check -IBS check- anxiety and mood swings check- it takes it's toll on you.  Best line of defense a sense of humor, a good support group, and if you have any spirtual preference use it.. Must be love if you wife is stickin by you.. I'd say it's time to get some current data on labs and biopsy or firbro scan and re-educate yourself.  There are many new drugs in the pipe line and some current on going studies.. I had a gf with  vereces in the asophagus and she said that was no picnic she had to go every six months for repairs.. Hang around ... join the party.. we all in the same boat just waving at each other... all the best peace and love MJ



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Do not go where the path may lead, go instead where there is no path and leave a trail.Ralph Waldo Emerson

1a - VL 22 million  F2- IL28B- CT / Inck-Riba- Peg triple therapy 9/15/12 UND 4/8/14  8 wks BT ..3/1/2013 done! 3wks Post UND
Bills


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That's a tough story

Sorry to hear you've such a rough time There are many here with complications and other illnesses      Bouba has a good point about the new treatments They are much more reliable better success. I was treated in 2008 the only offering was Interfron and Ribivran  I didn't drop enough to stay on so they stopped  @12  weeks  So you didn't have much choice back when you did treatment

They couldn't offer me a second chance at that time Cirrhotic stage 3 and varasies and Non responders were in holding pattern till new drugs were approved . . there are also trials and study's  I agree they are scary but  I didn't have much choice even up to last year  I'm doing back to back treatment I did a trial last year 48 weeks  & failed week 49 I was advised to start the next 48 week treatment I'm doing Incivek Ribv and Intf  This round   I was undetected by week 5-6  still UND @ 12 w I need another VL test to prove it but I think I'm stll good  I'm @ 15 weeks into this round I'll  do it so long as I remain UND

So I'm very concerned about how long I'll be on interfreon and like you what I'll wind up with later

Please just ask questions here and you'll be surprised what comes back.  You'll see that the people here are really doing alot of research and you will get good advice and leads to information you might not know about. I Hope you can try again and wish you good luck

 

 



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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

JoAnneh


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I didn't respond to Interferon and RIBA
11 years ago. My VL dropped but was always detected.
Triple tx w Invicek, Pegs and RIBA is working. After 6 months I am UND.
Sorry u have so many health issues:(

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
c99


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Thanks everyone.The latest triple treatment I was turned down for.They said I am a non respondent to interferon so it was a waste of time.I have stage 2/3. fibrosis with scirrosis..My ALT ranges from 450 sometimes it can reach lows of 50's.I have vereces in the asophagus.I go for another ultrasound and bloodwork in 2 weeks.I have had many biopsies inthe past from 1998 on...I now take Nadolol for vereces.Cipralex and lorazapam for anxiety and prevacid for gerd.Not taking anything prescriptions for constant pain or IBS. I had none of these illnesses before treatments..



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JoAnneh


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See my brain fog all typos errors! HA

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
JoAnneh


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Hey! I am on triple treatment and its working this time.
As far as emotions, antidepressant and therapy along with attitude
Of praise for your blessings will help.
Prayer and being around positive people helps too.
You are not alone we all understand the struggle.
Have u had a biopsy? My stage are you?
So glad u found us for support. Hoping for
Improved relations at home. With God anything is possible.
I hear from experience my marriage is great now
We can face trails w a super spirit. Find a good church
It helps a lot!!! Hang in there and make u get relief soon
JoAnne

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
Bouba


Senior Member

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Hi John,

There are new antiviral HepC medicines in the market, approved by FDA in 2011. So called, triple therapy. Interferon+Ribavirin (like before) + Victrelis or Incivek (new). The response rate went up to an average 70-80 pct.
Depending on the response, the therapy usually lasts between 24 and 48 weeks. If you are ready for another try, please type any of the questions you may have in the search box here or simply ask... There are Gurus on this forum that can save you a few visits to a doctor by a straight and clear answer.... Obviously a full medical examination and lab tests (blood work, genotype, viral load, damage or no damage, etc) incl. possibly a liver biopsy will be required to decide on treatment. You can do well, cheer up and go fight the thing! Like all of us do here. You are not alone... Good luck!!!

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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
c99


Newbie

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Posts: 3
Date:
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I have ben treated for Hep C 5 times in 8 years with failure.My last treatment of Pegatron ended in Jan 2007.Since then my life has taken a drastic fall.I have lost all energy,ringing in one ear constantly,stomach pain,depression,fibromyalgia,can't take the cold, major brain fog and much,much more.Biggest of all is my wife said I am not the same person anymore and haven't really gotten along for the past 10 years.It seems like I am punishing her staying with her.Mt question is how do you deal with this?I Never would have taken any treatment if I knew this would be my life.I don't know what to do anymore.I am 42 and can't control my own emotions..



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