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Post Info TOPIC: interferon folk
patiently_waiting


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RE: interferon folk
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I won't miss it!

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42 yrs old: geno 1b, 23mil VL, ALT/AST 269/94 as of Apr '14.  Got HCV when I was 16.  Relapsed from Peg/Riba twice, last time in '08.  Completed Sol/Oly on 9/2/14, UND as of 10/7/14
Isiscat2011


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Scruffy wrote:

Judging by the few people on another forum that have started that same tx this month its going to be around for a while.

 

          _______________________________________________________________________________________________________

Incivek will be SOC in some countries (the ones that have it) until the new orals' costs come down and they go through the approval processes.  In the US the AASLD guidelines specifically state not to use Incivek.     

 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Scruffy


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Looks like Paul B is gonna start the triple tx with incivek. Good luck Paul post any problems, there are people here that have been down that road and can help. Judging by the few people on another forum that have started that same tx this month its going to be around for a while.

Best wishes form you.



__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
newmex


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Scruffy wrote:

@ newmex I think you and globetroter are the last incivek + peg/riba 48 weeker's left. I'm glad you both posted on the forums. I've been trying to keep an eye out for ya's. globetroter is on week 30 also. You guys be sure to keep us up to date and post any problems.

Best wishes!

 

Thanks Scruffy, used to get on more often but focus kinda went south for a while. Funny how it slips up on you. Have spent hours in this chair staring at the wall, but think I have it all figured out now. Will check up on Globetrotter.  



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John
Paul B


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mallani wrote:

Back for another try in 2000. Still no Peg., so Interferon + 1,200 mg Riba daily for 24 weeks. PCR -ve after 4 weeks and relapsed between 3 month and 6 month  after EOT. Again, not bad Sx and worked all through Rx.


                      

That is interesting.  I was in an 1998 trial in Melbourne.  Initial response was promising with my ALT down to 30.  AT week 10 numbers were heading up again and I was so wiped out I quit the programme.  Was never told anything about others in the trial so it is interesting to find out that it was  not tolerated by virtually the entire cohort.



-- Edited by Paul B on Thursday 5th of June 2014 01:07:32 AM



-- Edited by Paul B on Thursday 5th of June 2014 02:16:54 AM

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57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.

Paul B


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Cinnamon Girl wrote:
mallani wrote:


@ Paul...best of luck with your incivek triple, I`m sure you`ll find it a lot easier to cope with than your previous attempts and we`ve seen many success stories here from people who`ve done that tx combo.  smile

 

 

 Thanks, I hope it is easier.  I felt a lot stronger 16 years ago and failed to stick it out then.



-- Edited by Paul B on Thursday 5th of June 2014 01:06:26 AM

__________________

57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.

Scruffy


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@ newmex I think you and globetroter are the last incivek + peg/riba 48 weeker's left. I'm glad you both posted on the forums. I've been trying to keep an eye out for ya's. globetroter is on week 30 also. You guys be sure to keep us up to date and post any problems.

Best wishes!

 



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
beingsassy


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We really owe a lot of gratitude to the warriors who were using the first generation of treatments. You guys proved that there was hope and new treatments today were made because of your willingness to be trial subjects. I've had a hard enough time tolerating the new generation of treatment. Today i will take my final dose of ribavirin. Took my final dose of sovaldi this morning. My hat goes off in respect to those who are of the first generation, your efforts helped create the new generations. Will be going for post tx labs on June 18 and again in Dec. to find out if I'm SVR. Thank you to the warriors who helped pave the roads to the new treatments. I don't know how you did it, sometimes more than once, but you helped make my life and tx easier. Thank you for helping me before I did tx and during tx. Will let you know how those labs go. You saved my life.

gigi



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genotype 2 completed sovaldi and ribavirin on 6/4/14. SVR on 12/3/14
Isiscat2011


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JLynch30 wrote:

I was in the Halt C usc study for 7 years - half our group stayed on interferon for 7 years and the other nothing.  Thanks god I was nothing because they found it didn't help the progression.

_________________________________________________________________________________________________________

"Thanks god" is right, JLynch.  Not only did it not help the progression but they discovered the prolonged use of interferon resulted in "excess mortality." In other words, it killed people.  The Halt C study resulted in many, many, publications.  I suppose this is the price of progress but what a price for the people who paid it (and their families).

All of your stories are amazing.  Incredible tenacity.  Malcolm, I'm pretty sure you are made out of steel.  

I was only on Interferon once and it just about killed me.  Within weeks my platelets went from >200 to <50 (they have never recovered since).  The Riba took my Hgb from >14 to <6.5.  And, that's just a couple of the things it did.  

I think that how this stuff effects us depends largely on genetic/biochemical factors as well as the state of our livers when we start.  My liver had been staged at a 2 when I started but I'm not so sure that was correct.  Kind of a crap shoot since we still understand relatively little about so much of this. 

Thankfully, Interferon tx will soon become a thing of the past for many of us.  I only wish it was for all of us.  In the meantime, interferon in combination with other drugs, can and does allow some people to achieve SVR.  Just gotta wonder if the cost of the cure is greater than the cost of living with the disease sometimes.  For some people it is; for others it isn't.  We just never know.  

 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
JLynch30


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I was in the Halt C usc study for 7 years - half our group stayed on interferon for 7 years and the other nothing.  Thanks god I was nothing because they found it didn't help the progression.



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John   non-responder  

Undetected at week 2 on solvaldi/rib/interferon:  stayed through week 12 but virus came back as soon as I stopped.  on   Harvoni and ribravirin 24 weeks undetected after two. 8/2/15  12 week EOT  UNDETECTED!  SVR

1991-2015 RIP

 
TazKat


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me too mllani. a very bad memory!! i hate that i have to deal wih it now..



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 
TazKat


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one shot a week for me. but remember the mixing the powder & water.. felt like a junky at my desk mixing it~~  that was the good ole days when i got support at work..

biggrin



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 
Scruffy


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First time I was in tx was the interferon and riba blind study. Some people got the single dose of interferon and some people got a double dose. All were on 1000mg of riba. Weekly interferon box had 2 needles one vial of water and one vial of powdered interferon. I had to mix my own dose. My VL came down 3/4 after 6 weeks but they pulled me off.   Said I didn't respond. My sx's weren't all that bad. My Doctor also talked about a "maintenance" dose of interferon.(not for me) I thought my second tx wouldn't be that bad. Boy was I wrong! Bad but do-able. It wouldn't have been that bad if it wasn't for the anemia.



-- Edited by Scruffy on Wednesday 4th of June 2014 09:37:04 PM



-- Edited by Scruffy on Wednesday 4th of June 2014 09:41:21 PM

__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Cinnamon Girl


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mallani wrote:

Second round was to be 24 weeks of Interferon + Ribavirin in 1998. The Riba dose was being trialled, and I was on 2,000mg/day! After 12 weeks I was stopped due to severe anaemia. None of the Study Group managed to finish the 24 weeks.   


Wow Malcolm, I`m not surprised you suffered from severe anaemia on that Riba dose or that none of the group managed to complete the course! 

@Mike... your MD suggested you stay on daily shots on interferon permanently, what a horrific thought!  I can imagine your reaction when she said that!

I`m just amazed and so impressed at what you and others here have gone through during past treatment attempts, you were the ones paving the way forwards and you should all be so proud!

@ Paul...best of luck with your incivek triple, I`m sure you`ll find it a lot easier to cope with than your previous attempts and we`ve seen many success stories here from people who`ve done that tx combo.  smile

 

 



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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.

 

 
mallani


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Going back even further, I had 48 weeks of Prednisone and a wonderful drug called Imuran (Azathioprene) as Non-A, Non-B hepatitis was thought to be related to auto-immune disease.

In 1996-7, my first 48 weeks of Interferon ( 3x weekly) didn't really cause many problems. I continued to work and from memory didn't feel too bad. I became RIBA -ve after 8 weeks but relapsed 4 months post-Rx (No PCR then!).

Second round was to be 24 weeks of Interferon + Ribavirin in 1998. The Riba dose was being trialled, and I was on 2,000mg/day! After 12 weeks I was stopped due to severe anaemia. None of the Study Group managed to finish the 24 weeks.   

Back for another try in 2000. Still no Peg., so Interferon + 1,200 mg Riba daily for 24 weeks. PCR -ve after 4 weeks and relapsed between 3 month and 6 month  after EOT. Again, not bad Sx and worked all through Rx.

I was invited back for another try in 2002 as the protocol had been increased to 48 weeks and I think Peg had just become available. I said no thanks! Bad mistake.

My 48 weeks of the Victrelis triple in March 2012, was pretty dreadful. By then I was cirrhotic, older and I think Victrelis augmented the anaemia from Riba. All the other Sx were a nuisance  but tolerable.

So it's been a battle but I've been very lucky. Hopefully Interferon will eventually be a bad memory. Cheers all.

                      



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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
Paul B


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Tig56 wrote:

I like to consider us pioneers of the original assault on Hepatitis C. The first pioneers of treatment to achieve SVR on the original protocol had to take the injections 3 to 5 times per week, often for a year or more! I can't even imagine how those original warriors felt after a year of that stuff almost daily. (Other than like complete sxxt) Inventing pegylated interferon that reduced the requirements to once weekly was a life saver in more than one way. We've got several old warriors here, including yourself, that went through those harsh courses of treatment and the fact they're still here are a sad indication of their rates of success, none...

Tig

My first attempt was in 1995 and the injections were three times per week.  Then again in 1998, the frequency I seem to have forgotten, but I think it may have been daily.  Starting triple therapy in a couple of weeks (Interferon, Rib, Incivek).  Really hoping that the vastly reduced frequency of injections means an easier time.



-- Edited by Paul B on Wednesday 4th of June 2014 07:01:00 AM

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57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.

Northern


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My 2nd time around was daily shots for 48 weeks. I was undectable during treatment but viral load came back right after I completed. My MD at the time suggested i stay on it permantly. I told her she was nuts :) glad it's over with. 



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1b, 3rd time around on treatment. Stage IV cirr. Undetectable at 8 weeks with Incviek. Been infected since the late 70s. 48wk treatment completed. Sustained undetectable. 
Gracie


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Ah yes, the three times a week needle club. I was lucky enough to try that nonsense back when I first treated. And what a treat. Nothing like the joys of incevik though. Did have a brief period of und at least. Enough to make me realize it's possible. Awaiting for my dr to call me in so I can press for the new treatments. Looks like they are working for us old treatment failures as well as the others so this news really makes me happy!

Been off for 2 months, and feeling better but still got the blahs. And every ache or twinge throws me into liver cancer dreams. Looking forward to the beginning of the end of treatments which I know will come someday!

thanks to all you trailblazers who are leading the way .... :)



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
Tig


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Doing pretty well, all my LFT's are back to normal and the last CBC was normal as well. I'm having a real bad time with joint pain though and it's getting worse. I went in recently for X Rays of my hips and they found some significant abnormalities in my left hip, and mild problems developing in my right. It's quite painful and it's either spreading around to the rest of my joints or my imagination thinks it is! My PCP isn't versed on post treatment problems as a result of HCV  treatments that included Interferon, so she's bumping me up to yet another specialist. I'm hoping that in time these issues will diminish and I'll enjoy pain free joints along with the SVR I've come to cherish! Regardless of the hip pain, nothing will take away the smile that accompanied that last viral load test result....undetectable/svr. You'll know that feeling soon!

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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newmex


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once I got off the Incivic started feeling much better, every thing normal or very close as far as labs, hemoglobin hanging about 11.4 and been there for last couple months, so am guessing it wont drop much more. have been on AD since a couple months before I started and that helps me immensely. Have thrown a few things but realized what it was , so didn't get to far into it. No damage or scattered potato flakes, lol,.. yet. Was driving about like the average texting teenager, but can get to store and back by myself now, just cant remember what I went for. Rash finally went away last week, so am very thankful for that.  Good to talk to you again, Good luck to every one



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John
JLynch30


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I remember the three a week!

I am angry but too tired to punch....

I am undetected at week 4 and 8.  Two more shots left.  Platelets are hanging tough at 0.9 

never slept so much in my life!  How are you?



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John   non-responder  

Undetected at week 2 on solvaldi/rib/interferon:  stayed through week 12 but virus came back as soon as I stopped.  on   Harvoni and ribravirin 24 weeks undetected after two. 8/2/15  12 week EOT  UNDETECTED!  SVR

1991-2015 RIP

 
Tig


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Hey John,

Buddy, you don't probably don't know what normal feels like anymore! That's an old memory in a book you turned in months ago, ha, ha! You hang in there brother, you're doing great because you're still able to write using full sentences!! How's your temper and anger management holding up? Let me in on how you've been doing, it's been awhile since we talked. Do you have any recent lab results? How's the anemia been? Hang in there and good luck...

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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newmex


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lol,you think your the last, I'm 30 weeks into 48 on interferon and Incivic, but so far so good. Been undetected since 2nd week on Incivic, and some days feel almost normal, if I am remembering what it feels like right. 



-- Edited by newmex on Wednesday 4th of June 2014 04:06:24 AM

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John
Tig


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I like to consider us pioneers of the original assault on Hepatitis C. The first pioneers of treatment to achieve SVR on the original protocol had to take the injections 3 to 5 times per week, often for a year or more! I can't even imagine how those original warriors felt after a year of that stuff almost daily. (Other than like complete sxxt) Inventing pegylated interferon that reduced the requirements to once weekly was a life saver in more than one way. We've got several old warriors here, including yourself, that went through those harsh courses of treatment and the fact they're still here are a sad indication of their rates of success, none... It will really be a great day when these new drugs and the treatment protocols that accompany them are made available to everyone in all countries around the world. Hopefully soon. In the meantime I look forward to all the new drug developments and hope they're made available to everyone sooner than later!!

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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JLynch30


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we are the last of the breed!



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John   non-responder  

Undetected at week 2 on solvaldi/rib/interferon:  stayed through week 12 but virus came back as soon as I stopped.  on   Harvoni and ribravirin 24 weeks undetected after two. 8/2/15  12 week EOT  UNDETECTED!  SVR

1991-2015 RIP

 
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