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Author Topic: Started sovaldi/ribavirin combo  (Read 115089 times)

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Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: Started sovaldi/ribavirin combo
« Reply #100 on: December 11, 2014, 02:22:36 pm »
DesertGuy,
If by chance you relapse, letting it take it's course is something you really need to think about. The Ribavirin is the damaging drug, in my opinion. So the Harvoni and
other combos for multiple genotypes have two direct acting agents that actually
break the virus RNA, not just stuff the reproduction like the 35 Year old ribavirin.
If I relapse I will try again. Nothing could be worse than the ribavirin side effects.
Also, the end stage effects of advanced Hepc can be compared as 4-10 times worse
than ribavirin. Hope you get cured, but think about plan B just in case.

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Started sovaldi/ribavirin combo
« Reply #101 on: December 11, 2014, 04:39:44 pm »
DesertGuy,

I am not religious but this Hep C thing has made me pray more than I ever did the previous 55 years of my life. I am praying for you not to relapse, you have been through so much and deserve a break.

It sucks so much to be sick, I am so sick of being sick. I barely leave my house, I am totally isolating, this needs to stop but I can't make it. I just keep hoping that somehow when this evil is outside of my body I won't feel so yuck and may want to re-enter the human race.

Anyway I am thinking about you and saying a prayer for you.

Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline DesertGuy

  • Member
  • Posts: 134
Re: Started sovaldi/ribavirin combo
« Reply #102 on: December 11, 2014, 05:47:39 pm »
Hey guys--Thanks, and I understand it all---sure none of us are rushing to that day we check out, but at sometime also you just need to step back and look at a calendar.   these are the things I see
How old are you?---How long do people in your  family live?--Where are you in that chart?-----next -How do you feel?--Are you getting worse day by day?--Does letting someone beat you with a stick for 6 months make you feel better?
This Riba has made me think about a lot of deep thoughts. My wife has a very strong faith and I feel also. But in my life about 45 years ago I started pulling my own chain--up until 24 weeks ago. Then I put myself ( not knowing what was going to happen) in the hands of a stranger.  I'm not a fatalist--I sure hope that in 6 months I am still undetectable. That is why I did this!!!!!  . But also in 6 months if I am back to the person I was 6 months ago and the virus comes back, when the doctor (excuse me--DOPE DEALER ) waves his newest product under my nose, I'm not going to be so quick to take it.

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Started sovaldi/ribavirin combo
« Reply #103 on: December 11, 2014, 05:54:28 pm »
Hey guys--Thanks, and I understand it all---sure none of us are rushing to that day we check out, but at sometime also you just need to step back and look at a calendar.   these are the things I see
How old are you?---How long do people in your  family live?--Where are you in that chart?-----next -How do you feel?--Are you getting worse day by day?--Does letting someone beat you with a stick for 6 months make you feel better?
This Riba has made me think about a lot of deep thoughts. My wife has a very strong faith and I feel also. But in my life about 45 years ago I started pulling my own chain--up until 24 weeks ago. Then I put myself ( not knowing what was going to happen) in the hands of a stranger.  I'm not a fatalist--I sure hope that in 6 months I am still undetectable. That is why I did this!!!!!  . But also in 6 months if I am back to the person I was 6 months ago and the virus comes back, when the doctor (excuse me--DOPE DEALER ) waves his newest product under my nose, I'm not going to be so quick to take it.

Hey DesertGuy,

I hear you, they come out with all of these drugs and we so badly want to get better that we believe. Sometimes it's better to let it be for a bit before jumping into the fire. Take me and Olysio; we were a really really bad match and I was in misery for 8 weeks but I stuck with it in hopes that I can beat this infection that has my liver cirrhotic.
Then I look at my grandson who had some chemical inbalances he was born with due to being born addicted to a multitude of substances and think about all the new fancy medications they used to "stabilize" him which instead made him angry and caused other nasty side effects. We went back to the old classics and he has been really stable and happy for over 4 years, even through puberty. Makes you want to just step back a bit.
I hope you win the battle this time and totally understand where you are coming from. I support whatever you choose to do and totally get it.

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Mike

  • Member
  • Posts: 999
Re: Started sovaldi/ribavirin combo
« Reply #104 on: December 11, 2014, 06:43:11 pm »
Hi  DesertGuy,

I know that treatment can be an emotional rollercoaster.

But Remember: You are undectected, which is what you want at the end of treatment. You have an excellent chance beating HCV and the statistics on treatment efficacy for GT3 reflects this. You made it through treatment and the Ribavirin side effects will begin to disappear.

Simply put, your glass is more than halfway full!

Shake the negatives and focus on the positives.

Keep your chin up and know you have real hope for a cure!

Best, best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline zeena

  • Member
  • Posts: 114
Re: Started sovaldi/ribavirin combo
« Reply #105 on: December 13, 2014, 10:37:21 pm »
desertguy
              its been 3 weeks now since i stopped.and wow!! what a difference,i am less paranoid, not as angry and definatly not ragey.i sleep well, eat more,after 6 months of being unsure of who was in my body, this is a nice surprise. it will happen for you too.the last weeks were the hardest for me, it goes quickly. and good luck to you!! you live in natures lap, enjoy your treasures!!,

Offline Coach

  • Member
  • Posts: 69
Re: Started sovaldi/ribavirin combo
« Reply #106 on: January 15, 2015, 12:33:38 pm »
Got back BW 3 months after failing tx with sol/rib for gt3. It seems things have settled down after Flare up.. VL 2.1 million drop to 388000. AST from 126 drop to 51. ALT from 280 drop to 108. So these #s are encouraging, hopefully I won't have to rush into next tx.. Doing plenty of Milk thistle, green max and N=acetyl- cysteine in the mean time.. How are things going with YOU..

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: Started sovaldi/ribavirin combo
« Reply #107 on: January 15, 2015, 02:32:57 pm »
Yep,
I take my bloodwork today for 4 week post treatment. My friend who is cirrohtic failed this combo. 24 weeks and he is suffering with all kinds of effects. (1A)
I will find out in about a week the results for viral load. If I am detected, even
1 I will go immediatly into the Abbvie treatment, now it is suppose to be 100% for 1B. 94% for 1A. I am 1B. I just feel having a plan B  is the thing to do.
Not giving in, sorry.  I am not cirrotic, (yet)
And after being off 1 month, I still have bouts of fatigue, itching, rash. My P-Neuropothy has not improved. I still go to work everyday, but admit it has been a tough go.

Offline Coach

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  • Posts: 69
Re: Started sovaldi/ribavirin combo
« Reply #108 on: January 15, 2015, 04:09:25 pm »
I hope things work out for you.. As far as plan B there are some options for you.. Gt 3 has no options now and the ones that are coming are a couple of years away according to my Doctor...

Offline DesertGuy

  • Member
  • Posts: 134
Re: Started sovaldi/ribavirin combo
« Reply #109 on: January 15, 2015, 04:53:11 pm »
I take my 4 week bloodwork tomorrow also--and will also be a week or so before I hear back. I don't even want to think about being detectable now--gimme a break. Wait until 12 weeks out to knock me down again. I am just starting to get back to normal, less depression, stronger, less fatigue, and better bowel movements. I still have my fingers crossed because this is my first treatment and I did 24 weeks, that it will stick, but I can see that being cirrhotic has a much less chance of being cured. I'm not ready to start looking for another doc--won't go thru this again with the same one. Glad to see us ole-timers are still monitoring the forum, LOL.

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: Started sovaldi/ribavirin combo
« Reply #110 on: January 15, 2015, 08:13:44 pm »
DesertGuy,

If the 4 week is 0, the chances of it staying 0 are very high.

Offline Long_Haul

  • Member
  • Posts: 161
  • Slayed the Dragon
Re: Started sovaldi/ribavirin combo
« Reply #111 on: January 16, 2015, 10:16:17 am »
Best of Luck DesertGuy. I hope your results are UNDETECTED!
(I'm an old guy at 66, do I qualify as old enough?)    :^)
AL
Genotype 1A

Diagnosed 1989
Biopsy-cirrhosis stage 4 2000, no starting VL this round

3 rounds of Int+Rib
(Combo/48wks,Peg/26 Wks,Triple with Incivek/16wks)
UND with Incivek, Relapsed
Started 12 weeks Harvoni and Rib Jan 2nd,2015
4 weeks Undetected
8 weeks Undetected!
EOT at 12 weeks Undetected
EOT at 24 weeks STILL UNDETECTED
Completed TX Mar 26th,2015

EOT plus 4 weeks UNDETECTED
EOT plus 12 weeks UNDETECTED !!!!!!!!!!! I am DONE!

NO LONGER a member of the "WAITING GANG"

Offline kimharvest

  • Member
  • Posts: 35
  • Fighting to Get Back my Life - GT 3a
    • Vital Wonders
Re: Started sovaldi/ribavirin combo
« Reply #112 on: April 23, 2015, 12:24:00 am »
GT - 3a: I just started my 2nd half of Sovaldi and Ribavirin, starting month 4. My one month viral load test showed no detection from 10,000,000. They cancelled my 3 month viral reading. I did this week start showing macrocytosis, enlarging of red blood cells. Anyone have that? Is that the same as anemia? Hopefully just a B12 thing. Need to take more blood tests now.  Missed two doses last month, getting harder every month. Never planned on going 6 months.  But if that is what it takes... Anything to rid myself of this. Will be MOST unhappy if this fails like I am hearing for 3a. I also have had tinging in points around my face along with sensitivity over my scalp and hair follicles. Very tired. Just trying to not stress out about anything but everything gets on my nerves.
kimharvest
"Eat healthy food and drink pure water for a healthy life."
GT 3a  15,000,000 VL.
Started Sovaldi/Ribavirin 1/26/15 for 24 weeks.
Doctor Office Dropped me on 5/8/15 at 14 weeks;
Finished 4 months total, two months short.
I do not recommend Grand Junction Gastro!
Not Detected at 3, 6 & 12 months.

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: Started sovaldi/ribavirin combo
« Reply #113 on: April 23, 2015, 01:23:38 am »
kimharvest,

I read that macrocytosis can be caused by hypothyroid, and ribavirin can cause thyroid damage. Also severe anemia can cause it also, and ribavirin is known for that. Stay on top of this, you can reduce the dose of ribavirin as a precaution. Ask your doc, I would not hesitate to get answers on this right away.

Offline Coach

  • Member
  • Posts: 69
Gt3 failed sol/rib looking new tx
« Reply #114 on: January 04, 2017, 01:07:53 pm »
Failed solrib over a year ago. Thinking of trying new tx for gt3a. Looking at Epclusa . Looking for other options?? Meeting with Doc next week.. Seems like pretty bad sides from most Epclusa patients?? Any good new on it??

Offline andrew90

  • Member
  • Posts: 71
Re: Started sovaldi/ribavirin combo
« Reply #115 on: January 04, 2017, 01:24:17 pm »
zero sides for me with Epclusa

hoping im Undetected by EOT was still detected by 5 weeks in but from 6.4 million to 35 so huge drop.!
5/1/17 UNDETECTED!

EOT Blood Testing 1/25/17
UNDETECTED!

Five week blood testing 12/8/16
DETECTED
Viral Load: 35(IU/mL)
AST: 34

Started Epclusa 10/2/16

Genotype 3a

9/19/16
Fibrosis: F2/3
ALT: 459
AST: 189
Viral Load: 6415894 (iU)/mL

Offline Coach

  • Member
  • Posts: 69
Re: Started sovaldi/ribavirin combo
« Reply #116 on: January 04, 2017, 01:36:45 pm »
Hope it continues to drop and go well for you.. Good to hear sides are not bad for all. I guess thats why my Doc tells me not to read the blogs , but I do anyway..

Offline andrew90

  • Member
  • Posts: 71
Re: Started sovaldi/ribavirin combo
« Reply #117 on: January 04, 2017, 02:08:06 pm »
Yeah after reading these blogs i did not want to take Harvoni at all.. i was scared.

Epclusa was newer and i did not read much "bad" so it made taking this drug less stressful and without Symptoms i have no worries at all. i had a day or so of headaches and that was the worst side effect.
5/1/17 UNDETECTED!

EOT Blood Testing 1/25/17
UNDETECTED!

Five week blood testing 12/8/16
DETECTED
Viral Load: 35(IU/mL)
AST: 34

Started Epclusa 10/2/16

Genotype 3a

9/19/16
Fibrosis: F2/3
ALT: 459
AST: 189
Viral Load: 6415894 (iU)/mL

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: Started sovaldi/ribavirin combo
« Reply #118 on: January 04, 2017, 08:10:59 pm »
It is not uncommon for people who have problems would want to vent their issues while those who did not have any problems often remain silent and don't go to forums to complain when they had nothing to complain about. So the tendency is that problems often get overrepresented  online.

While unfortunately a few folks do seem have problems it is yet to be determined if their problems were from treatment or possibly coincidently another health problem arose while they were on treatment. Another possibly their treatment may have activated or reactivated a preexisting problem they may have already had. But not much has been proven at this point as to the underlying cause. Still of course something that we should bear in mind for ourselves as a remote possibility.

The clinical trial data with admittedly a limited number of people who participated most people only experienced mild to no side effects.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Coach

  • Member
  • Posts: 69
Re: Started sovaldi/ribavirin combo
« Reply #119 on: January 04, 2017, 09:59:50 pm »
  True and that is why the Docs tell you not to read the blogs, but I have to get as much info as possible before starting tx. Is there anyway to find out how this first wave of people on Epclusa are doing?? I think I went into Sol/Rib to fast and its was found not to be very successful on gt3a.. Don't want to be a guiena pig again??

Offline Lynn K

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  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: Started sovaldi/ribavirin combo
« Reply #120 on: January 04, 2017, 10:37:00 pm »
http://www.epclusainfo.com

"In clinical studies, EPCLUSA had high overall cure rates of 99% for genotype 2 (GT2) patients and 95% for genotype 3 (GT3) patients†. EPCLUSA was also found to be highly effective in patients with GT1, GT4, GT5, and GT6, with overall cure rates ranging from 97–100%.

Cure means the Hep C virus is not detected in the blood when measured three months after treatment is completed."

For GT3 treatment for 24 weeks of Sovaldi plus Ribavirin was rated at 93% in clinical trails. So nothing in life is guaranteed but your odds are better this time around and no ribavirin needed.
« Last Edit: January 04, 2017, 10:40:56 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline elias

  • Member
  • Posts: 285
Re: Started sovaldi/ribavirin combo
« Reply #121 on: January 04, 2017, 11:43:19 pm »
Quote
Failed solrib over a year ago. Thinking of trying new tx for gt3a. Looking at Epclusa . Looking for other options?? Meeting with Doc next week.. Seems like pretty bad sides from most Epclusa patients?? Any good new on it??

The good news is most have  mild side effects on Epclusa.

Epclusa might well have the highest SVR rates of whats available now. There are even better meds awaiting  FDA approval specifically for "salvage therapy": meaning re-treatment after DAA failure. For those with low fibrosis score who failed earlier DAA treatment, might be worth waiting for those..

In my case, i did/do have some pretty harsh side-effects on Epclusa. But as Lynn says, it may have exacerbated a pre-existing sleep issue. I was having this horrid side effect, a week or so before having taken my first pill. Really odd?
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Coach

  • Member
  • Posts: 69
Re: Started sovaldi/ribavirin combo
« Reply #122 on: January 05, 2017, 11:09:36 am »
Thanks Lynn K and Elias for your responses. What tx are coming in the near future. Trying to figure out if I should go with Epclusa or see what comes up next. My #s and sono's have been good, feeling great. Things did get better even though I failed the sol/rib tx. Any info is greatly appreciated. Meeting with Doc next week . Gotta do my homework..

Offline elias

  • Member
  • Posts: 285
Re: Started sovaldi/ribavirin combo
« Reply #123 on: January 05, 2017, 02:08:07 pm »
Hi there Coach:

The two regimens I had in mind were:

Sof/Vel/Vox  by Gilead Sciences, which is a combination of Epclusa+Voxilaprevir. Gilead specifically researched this combo as a salvage treatment. Seems it succeeded in that role. But they failed to show it can be used for shorter periods than the 12 weeks of Epclusa for treatment naive


Glecaprevir/Pibrentasvir (G/P) by AbbVie

This was thoroughly researched in several Phase III studies. Very high success rates in re-treatment of DAA failures.  It even outdid Gilead's Sof/Vel/Vox in that the 8 week regimen for treatment naive had very high SVR-12 rates.

Both of the above are now awaiting FDA approval and were granted breakthrough status. A third regimen yet is not far behind.

You can hear quite a bit of details on these in this symposium based on AASLD review by experts in this field. It may help decide. The first half of this deals with re-treatments. There's long intro which you can skip:

http://hosted.medipix.com/aasld2016/

I'm not clear what your and fibrosis/cirrhosis status is? Might be determinative factor in choosing. Also hard to say how insurance works with re-treatment approvals. But would be good to discuss those two new approaches with yhour doctor. He might have some idea as to how long it'll be for FDA approval and odds of getting it insurance approved if its not yet in their formularies

« Last Edit: January 05, 2017, 02:53:45 pm by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Coach

  • Member
  • Posts: 69
Re: Started sovaldi/ribavirin combo
« Reply #124 on: January 05, 2017, 05:37:20 pm »
Not really sure about fibrosis. I go for sono every6 months and no fatty liver it looks clean is what they tell me. ??? But they did say no scarring. I'm actually looking for a tx for 8 weeks. If that exists for 3a who failed tx. I saw sof/Vel plus gs 9857 for 8 weeks.  Keep me posted on any info u have . Thanks.

Offline elias

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  • Posts: 285
Re: Started sovaldi/ribavirin combo
« Reply #125 on: January 05, 2017, 08:18:54 pm »
Hi again Coach:

Quote
Not really sure about fibrosis. I go for sono every6 months and no fatty liver it looks clean is what they tell me. ??? But they did say no scarring.

Does this mean you are F0? (=no fibrosis)?

If so, it gives u some time to sort it out...I'd ask for an F-level  if I were you just to be sure..

Quote
If that exists for 3a who failed tx. I saw sof/Vel plus gs 9857 for 8 weeks.  Keep me posted on any info u have

Yes, that is Gilead's Sof/Vel/Vox I mentioned earlier . That GS- drug has now been given a name: "Voxilaprevir" and this triplet combo is now awaiting FDA approval.

The 8-week regimen was for treatment naive. I think. And it was no better than the 12 week Epclusa regimen. Actually, Epclusa 12 weeks did slightly better than this new Sof/Vel/Vox 8 weeks. The strength of the Sof/Vel/Vox was more in terms of its re-treatment potential than in shortening the tx duration.

The AbbVie Glecaprevir/Pibrentasvir (G/P) did better in 8 weeks. So if 8 weeks-rather than 12- is of very high importance..this might be worth looking into further

I'd go through that CME Symposium carefully (the first half of it anyhow) if I were you to get clearer details on all this. For example, when they say prior "treatment failure" what treatment regimens r they referring to? And if that includes Sof/Ribavirin combo...etc..:

http://hosted.medipix.com/aasld2016/

Its still based on unpublished releases and posters, so its not yet peer-review published data. I gather that in addition to this CME symposium, it was presented at the November 2016 Liver Meeting

Basic point here is. Pretty much all treatment failures can now be salvaged. But important to get the right one based on all considerations such as GT, Fibrosis level, RAV's ..etc.. And of course, unfortunately insurance coverage for re-treatment and "non-formulary" might be  a major limiting factor. Hopefully, it won't
« Last Edit: January 05, 2017, 08:32:53 pm by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Coach

  • Member
  • Posts: 69
Re: Started sovaldi/ribavirin combo
« Reply #126 on: January 05, 2017, 09:36:26 pm »
Thanks for the Help Elias, I have some research to do..What is an F-level?? I hope its not a biopsy.

Offline elias

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  • Posts: 285
Re: Started sovaldi/ribavirin combo
« Reply #127 on: January 05, 2017, 09:54:25 pm »
No, its not a biopsy. nor does it require one. It's a score from 0-4 which tells degree of fibrosis and if cirrhosis is present. They probably gave u such a score already since u did get Sovaldi in the past.  Unless u have cirrhosis treatments are pretty much the same. Reason I asked was in terms of having time to wait until the more powerful re-treatment drugs are approved. Epclusa is already powerful in terms of success with SRV and was specifically tested for GT2 and GT 3, but I dont know if it was studied in terms of treating those who failed Sof/Riba on GT3. There is no 8 week protocol AFAIK with Epclusa. So far as I know, those in the Phase III trials of Epclusa who were "treatment experienced" had been treated by some interferon-based regimen
« Last Edit: January 05, 2017, 10:03:21 pm by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Coach

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Re: Started sovaldi/ribavirin combo
« Reply #128 on: January 05, 2017, 10:06:37 pm »
  Thanks again Elias.

Offline elias

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Re: Started sovaldi/ribavirin combo
« Reply #129 on: January 05, 2017, 10:10:35 pm »
Good luck, Coach. And please keep us posted as to how it goes in that meeting with the dr. Good news is that pretty much everyone is now curable. Proper choosing of the meds and access to them will be the major issues
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Gaj

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  • Posts: 172
  • Optimist
Re: Started sovaldi/ribavirin combo
« Reply #130 on: January 05, 2017, 10:40:35 pm »
Hi Coach,

Lots of good information there from Elias.  :)
F-score or Fibrosis level use to be a biopsy procedure but these days there are non intrusive tests such as fibroscan (similar to an ultrasound) or blood tests available. I suspect you will already have been tested and have the results on your file.
As you have only treated with Sofosbuvir and riba you won't have an acquired NS5a resistance which potentially opens up opportunities with current treatments that do include a NS5a active drug. Whatever you use I think your doctor will want you to treat for a minimum of 12 weeks to give you the best chance of success on this attempt.

There are a couple of other options that are currently available to research and discuss with your doctor:

- Sofosbuvir + Daclacasvir - This is a currently AASLD recommended treatment but in your case for retreatment may require addition of riba.

- Zepatier + Sofosbuvir - This is a new combination of two medications that have each been available for a while although I understand it is already an approved treatment option for GT3s in Canada. The results of trials as presented at AASLD in Nov were excellent (96-97% even with cirrhosis) but would require "off-label" prescription so not sure how that would play out with insurance, etc. http://www.infohep.org/Grazoprevirelbasvir-sofosbuvir-highly-effective-for-hard-to-treat-genotype-3-hepatitis-C-patients/page/3099138/
Male - 61 years
Genotype 3a (since 1978?)
Diagnosed 2012
Treated 2013 PEG/Riba/Dac (Relapsed)
F4 - HCC#1 Resected 06/15 - #2 RFAblated 11/15
11/18/15 Commenced Generic Tx - Sof/Dac/Riba (24wks)
Pre Tx = ALT: 270  AST: 209  ALB: 31
05/05/16 = ALT: 34  AST: 32  ALB: 40  VL: Undetected (EOT)
06/16/16 = Relapsed
06/23/16 = ALT: 92  AST: 59  ALB: 40  VL: 290,770
01/12/17 3rd Tx - Zepatier + Sofosbuvir (16wks)
05/03/17 EOT und
06/22/17 SVR7 und
07/27/17 SVR12 UND!
10/26/17 SVR24 UND & Cured!!!

Offline Coach

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Re: Started sovaldi/ribavirin combo
« Reply #131 on: January 06, 2017, 10:11:49 am »
Hi Gaj, thanks for the info. I don't think I could do the rib again, I did it for 6 months and it definitely messed with my mind. What is the ALB in your test scores?? And also what is NS5a resistance .. Thanks for your help.

Offline rainbowray

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  • Gen 1B
Re: Started sovaldi/ribavirin combo
« Reply #132 on: January 06, 2017, 01:01:04 pm »
Well, It is over two years since Sol/riba treatment. I am not detected. My Liver pains from stage 3 are all but gone, just a few discomforts now and then on the liver. My neuropothy is still the same. Evidently nerve damage from autoimmune issue from Cryoglobunimia is not going to heal . The Cryo is still there also, although very mild.
So I guess I should count my blessings especially after knowing I had Heb C for 44 years before getting treatment.

Offline Gaj

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  • Optimist
Re: Started sovaldi/ribavirin combo
« Reply #133 on: January 06, 2017, 10:36:43 pm »
Hi Coach, I can understand your dislike of riba having done two 6 month tx with it. While it can give a bit of a boost when added to some of the other tx there are often other options which have less sides available these days. It is far cheaper than others though which I suspect is why it is often used but do listen to your specialists advice before making any decisions.

ALB is albumin which is a good overall indicator/predictor of liver health and low levels are associated with things like edema, low platelets, inflammation, etc. It should be 0.35 - 0.50 and mine has been low (down to 0.26) for a number of years so was very happy and started recording it when it bounced back up to normal range within 4 weeks of commencing tx and has thankfully stayed there with other results all gradually stabilising too.

In simple terms, NS5a is one of the protein sites used by HCV during its replication process. Some of the antivirals such as Ledipasvir, Daclatasvir and Velpatasvir attempt to target and inhibit or block that site in different ways so that the virus is unable to use it to replicate. But in certain cases the virus finds a way around these blocks and then is able to replicate and pass on that ability to its own replicas at which point it has acquired resistance. If that happens then the drug and possibly others in the same class become much less effective. As neither Ribavirin nor Sovaldi target the NS5a protein you (or more correctly the virus) will not have 'acquired' resistance to any of the relevant NS5a inhibiting medicines from your previous tx so have a wider range of choices available.
« Last Edit: January 06, 2017, 10:58:01 pm by Gaj »
Male - 61 years
Genotype 3a (since 1978?)
Diagnosed 2012
Treated 2013 PEG/Riba/Dac (Relapsed)
F4 - HCC#1 Resected 06/15 - #2 RFAblated 11/15
11/18/15 Commenced Generic Tx - Sof/Dac/Riba (24wks)
Pre Tx = ALT: 270  AST: 209  ALB: 31
05/05/16 = ALT: 34  AST: 32  ALB: 40  VL: Undetected (EOT)
06/16/16 = Relapsed
06/23/16 = ALT: 92  AST: 59  ALB: 40  VL: 290,770
01/12/17 3rd Tx - Zepatier + Sofosbuvir (16wks)
05/03/17 EOT und
06/22/17 SVR7 und
07/27/17 SVR12 UND!
10/26/17 SVR24 UND & Cured!!!

Offline Coach

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Re: Started sovaldi/ribavirin combo
« Reply #134 on: January 12, 2017, 10:54:20 am »
 Went to my gastro Doc today and he said Epclusa 12 weeks was the current recomendation for 3gta with failed sol/rib. I told him I was interested in epclusa +gs59857  for 6 or 8 weeks , but it is in trial and we will see how these come out. No F-score for me? He said I would have to go into the nyc for a fibroscan. All my other numbers are in the good range, so I am not looking to rush into tx. I have another appt with a hep specialist next month to see what she has to offer. Appreciate all the advice that has come this way and look forward to any more info that comes your way.

Offline Coach

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Re: Started sovaldi/ribavirin combo
« Reply #135 on: January 12, 2017, 11:03:13 am »
Just to clarify the Epclusa +GS9857 is also called sofosbuvir/Velpatasvir + GS 9857 (Voxilaprevir) very confusing ..?

Offline elias

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Re: Started sovaldi/ribavirin combo
« Reply #136 on: January 12, 2017, 03:40:27 pm »
The investigational drug Sof/Vel/Vox will  likely be approved by FDA this year. It is Epclusa+ a third drug added to it: Velpatasvir. It has been studied specifically for treatment failures. As a salvage drug for those who failed DAA, I believe it's 12 week regimen that's optimal. You can hear the views of experts on this in the first part of this symposium:

http://hosted.medipix.com/aasld2016/

Hope your insurance would cover it , if that's the route you and your dr choose to go.I wouldnt try for an 8 week regiment where a 12 week is recommended.

Good luck and keep us posted
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Coach

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Re: Started sovaldi/ribavirin combo
« Reply #137 on: January 12, 2017, 04:48:23 pm »
Hi Elias, I agree w/u I would do the recommended tx. I just saw something about it being a 6 or 8 week tx. ? I want to put as little of these meds into me as possible.. Read something about companies making these regiments much longer then needed.. LMK if u get any relevent info..Also I flunked sol/riba not a DAA is there a difference. Maybe this isn't for me?? Thanks

Offline elias

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Re: Started sovaldi/ribavirin combo
« Reply #138 on: January 12, 2017, 04:57:31 pm »
The studies looked into shorter treatment duration and found them to be lacking. Epclusa 12 weeks did better than Sof/Vel/Vox 8 weeks. It is not recommended as a salvage regimen.

PS: Sofosbuvir (Sovaldi) is a DAA
« Last Edit: January 12, 2017, 05:02:15 pm by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Coach

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Re: Started sovaldi/ribavirin combo
« Reply #139 on: January 13, 2017, 03:45:07 am »
Which is recommended as a "salvage" treatment , which i assume I am? The Epclusa or the new combo for 12 weeks.

Offline elias

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Re: Started sovaldi/ribavirin combo
« Reply #140 on: January 13, 2017, 10:10:22 am »
Hi Coach;

That new combo. But that does not at all mean Epclusa wont do the trick, since it does have a higher success rate than does Sof/Ribavirin.  I just dont think its been tested specifically for this

I'm basing much of what I'm saying on that symposium webcast along with the charts it provides. It does speak of 3 new salvage regimens, two of which have already applied for FDA approval. Worth listening to it.
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Coach

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Re: Started sovaldi/ribavirin combo
« Reply #141 on: January 14, 2017, 10:15:55 am »
Thanks Elias, going to a Hep specialist feb. 7 so I'll see what she has to say.

Offline Coach

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Re: Started sovaldi/ribavirin combo
« Reply #142 on: February 07, 2017, 12:29:37 pm »
Got back from the Hep specialist. She strongly recommended the Epclusa for my Gt 3 and having failed Sol/Rib previously. I asked about the sol/vol/vex and she said I would have problems getting it since I didn't try this first ?? So before I change my mind I think I am going to start with this.. Will keep you posted.

Offline Coach

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Epclusa or Sol/Vol/Vex
« Reply #143 on: February 16, 2017, 09:38:11 am »
Failed sol/Rib my #s are good. Having trouble deciding between waiting for Sol/v/v or doing Epclusa now. Docs say do Epclusa and if it fails you can try the other combo when it is available. That just sounds like a protocol to me. Also they said I would have to do Epclusa first and fail to get sol/v/v approved. ?? My head is spinning on which way to go ..Treat now or wait??

Offline elias

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  • Posts: 285
Re: Started sovaldi/ribavirin combo
« Reply #144 on: February 16, 2017, 01:39:12 pm »
Quote
if it fails you can try the other combo when it is available. That just sounds like a protocol to me. Also they said I would have to do Epclusa first and fail to get sol/v/v approved. ?? My head is spinning on which way to go ..Treat now or wait??

I'd say to treat now. You do not have cirrhosis. The Astral-3 trials with Epclusa showed it to have 97% success rate for GT3 without cirrhosis:
Quote
Among patients
who received sofosbuvir–velpatasvir, the rate of
sustained virologic response was 91% among
those with cirrhosis, as compared with 97%
among those without cirrhosis."
==============

This article was published on November 17,
2015, at NEJM.org.
N Engl J Med 2015;373:2608-17.

The sof/vel/vox triplet is not yet approved. And it probably is the case that insurance will want you to have gone through Epclusa first , because it has been researched as a "salvage" treatment. Listen to that podcast I posted the link to above:

http://hosted.medipix.com/aasld2016/

Discussion of Sof/Vel/Vox in first half..

Might help to clarify a bit.

Yeah, some of this might come down to "protocol" but insurance does wield lots of power in this.
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Coach

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Re: Started sovaldi/ribavirin combo
« Reply #145 on: February 16, 2017, 02:16:35 pm »
Thanks for your thoughts. Will definitely check out video.

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Started sovaldi/ribavirin combo
« Reply #146 on: February 20, 2017, 12:56:32 pm »
Hi Coach,
Would you mind saying more about your reservations? I am curious as to why you wouldn't go ahead with the suggested treatment?
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Coach

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  • Posts: 69
Re: Started sovaldi/ribavirin combo
« Reply #147 on: February 20, 2017, 01:37:46 pm »
It seems that the Sol/Rib tx was not what they said it would be. Then all of a sudden it's not being used for gt3 anymore. Now the Epclusa is supposed to be the one yet they have another one sol/vol/vex coming down the line. In 1996  or so a Doc was straight with me about the interfeuron tx for 18 months. He said it is protocol that they recommend it, but chances of success were not very good. He told me to wait and only do it if my # s went up. Another Doc told me I'd be dead in 2 years if I didn't do the interfeuron. So I guess I am a little skeptical about Docs Drug Co. etc. Also I've been reading stuff about the new drugs causing cancer?? I value your opinion and I am leaning heavily to starting Epclusa this week. What do you think???

Offline Coach

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  • Posts: 69
Re: Started sovaldi/ribavirin combo
« Reply #148 on: February 23, 2017, 12:29:41 pm »
  I decided to do the Epclusa. The insurance company told my Doc.  that since I failed once with Sol/Rib I would have to do Epclusa and Ribavarin?? Not going to do Riba again. Both docs told me just the Epclusa originally.. Not sure what is going on but will wait for the next drug ? Sol'Vol/Vex ?? has anyone else had this situation..

 


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