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Author Topic: TX naive who had Sovaldi & Oly w/o RBV & INF, 2-3 years ago. What's up?  (Read 7601 times)

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Offline D63

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  • Posts: 44
  • and, so . . .
Hi, I'm new here. I'm a 52 year old male, treatment naive patient. I was diagnosed with HCV in 1990. Biopsy in 2001 confirmed geno 1b, with portal fibrosis, and last labs, done in 2011 showed VL at over 6MIL.
I am doing some research to get more information from the current status of other treatment naive patients whom have had the Olysio & Sovaldi treatments 2 to 3 years ago before considering the tx. Where are you now? Any new or other complications in the last 2 to 3 years after taking this treatment WITHOUT RBV or PEG INF.

I am currently in Los Angeles, and would also like to know if OLY & SOV are available in Barcelona, Spain, and covered under the public health system there.
Genotype: 1A 
Contracted tattoo
Dx in 1990
Fibroscan: 11/15/2016 
Stage: F-0,  5.4 Kpa
Tx naive
Started Harvoni: 1/30/2017 - 8 weeks Tx

Week 1 Starting VL: 3,044,516
AST: 36
ALT: 63
Cryoglobulinemia: positive 12.00
Week 2:
AST: 15
ALT: 20
Week 4 VL: 0- UD
Cryo: NEGATIVE
AST: 16
ALT: 20
Week 8 EOT VL: 0-UD
AST: 15
ALT: 18
Week 12, after EOT of 8 WK Tx: VL: 0- UD
Six months after EOT: VL: 0- UD
ALT: 13
AST: 12

One year after End Of Treatment: Viral Load: 0- NEGATIVE
ALT: 20
AST: 17

CURED

Offline sunrise

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  • Posts: 463
Re: TX naive who had Sovaldi & Oly w/o RBV & INF, 2-3 years ago. What's up?
« Reply #1 on: November 29, 2015, 11:31:47 am »
Hi d
 I did sovaldi olysio without rib or inf. for 12 weeks. Finished tx Dec 21st 2014 was undetected after 24 weeks, so I am cured. Still dealing with some side effects, but they are manageable. I was geno 1a w viral load of 5 mil. Good luck on your journey. I don't know about Spain, I was very lucky to have the pharma co. pay for the whole cost of meds. I felt as if I won the lottery.... 

Offline D63

  • Member
  • Posts: 44
  • and, so . . .
Re: TX naive who had Sovaldi & Oly w/o RBV & INF, 2-3 years ago. What's up?
« Reply #2 on: November 29, 2015, 06:20:44 pm »
 :) Thank you, Sunrise. It sounds very hopeful.

D
Genotype: 1A 
Contracted tattoo
Dx in 1990
Fibroscan: 11/15/2016 
Stage: F-0,  5.4 Kpa
Tx naive
Started Harvoni: 1/30/2017 - 8 weeks Tx

Week 1 Starting VL: 3,044,516
AST: 36
ALT: 63
Cryoglobulinemia: positive 12.00
Week 2:
AST: 15
ALT: 20
Week 4 VL: 0- UD
Cryo: NEGATIVE
AST: 16
ALT: 20
Week 8 EOT VL: 0-UD
AST: 15
ALT: 18
Week 12, after EOT of 8 WK Tx: VL: 0- UD
Six months after EOT: VL: 0- UD
ALT: 13
AST: 12

One year after End Of Treatment: Viral Load: 0- NEGATIVE
ALT: 20
AST: 17

CURED

Offline Lynn K

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  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: TX naive who had Sovaldi & Oly w/o RBV & INF, 2-3 years ago. What's up?
« Reply #3 on: November 30, 2015, 12:30:46 am »
I treated with Sov/Oly with out Ribavirin for 12 weeks from March to June 2014. GT 1a, F4 cirrhosis DX Jan 2008 on biopsy. Three time null responder to interferon based tx. I was not detected on treatment and at end of treatment.

Was found to have relapsed 12 weeks post in Sept 2014.

Nov 2014 started Harvoni for 24 weeks and added ribavirin later for 15 of those 24 weeks. In October I tested not detected at 24 weeks post treatment. I am now hep c free.

So I am not treatment naive but I am guessing by your bridging portal fibrosis that makes you a F3 near cirrhosis and that in itself makes us harder to treat. But from what I understand GT 1b responds better to treatment than GT 1a.

Good luck on whatever treatment you get on. I wish you good luck and to be cured.

Lynn
« Last Edit: November 30, 2015, 12:36:15 am 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 D63

  • Member
  • Posts: 44
  • and, so . . .
Re: TX naive who had Sovaldi & Oly w/o RBV & INF, 2-3 years ago. What's up?
« Reply #4 on: November 30, 2015, 01:27:44 am »
Thank you all for responding. I suppose I should spill it and spell it out here, although I did not want to on this forum. But I need to make some things clear, so that eventually I can get cured without dealing with an aftermath, if any.
Here's why I posted this subject-
I have and have had friends and loved ones go through the "barbaric" treatments, PEG-INF + RIB. They all relapsed. They also developed cancer and diabetes, none of which they had prior to their tx. Three of them are no longer here, due to forms of cancer, which were recognized too late; two men, one woman. All were 1b, same as I. My friend, for 27 years, who is a female, geno-1b, underwent INF + RIB twice and relapsed twice. Both txs were 52 week treatments. The first was with Intron A interferon + RIB and the second round, was with PEG-INF + RIB. She relapsed. Then she tested positive for uterine cancer, required radiation and complete hysterectomy, no chemo.
Seven years passed and she developed cirrhosis, with the usual platter of extra-hepatic symptoms, ascites, never-ending infections, incontinence both bladder and bowel, and diabetes. She was then given OLY+SOV 12 weeks, through medicare, in Mar. 2014. She's been undetectable since. But now, she's going blind and now insulin-dependent.
I hesitate to take any combination with RIB or INF. After seeing my friends go through this, I hesitate. And I want to be informed before I decide. However, like many people who aren't lucky enough to get the new direct acting antivirals, I don't want to be like my friend, knocking on death's door to get an 84,000 dollar cure to turn out that it is linked to something. I can't afford ObamaCare.
So far, there is no post-marketing data or post clinical trial data that I can find. So I found this forum.
I may not have time to check in and answer or thank each of you in the next month. I'm trying to go somewhere, where medicine may be more accessible to me. I hope you understand my concerns. I thank all of you whom have told me your experience and thank those who may share theirs in the future; now you know the impetus for my original post.  :P :D
XO
D
Genotype: 1A 
Contracted tattoo
Dx in 1990
Fibroscan: 11/15/2016 
Stage: F-0,  5.4 Kpa
Tx naive
Started Harvoni: 1/30/2017 - 8 weeks Tx

Week 1 Starting VL: 3,044,516
AST: 36
ALT: 63
Cryoglobulinemia: positive 12.00
Week 2:
AST: 15
ALT: 20
Week 4 VL: 0- UD
Cryo: NEGATIVE
AST: 16
ALT: 20
Week 8 EOT VL: 0-UD
AST: 15
ALT: 18
Week 12, after EOT of 8 WK Tx: VL: 0- UD
Six months after EOT: VL: 0- UD
ALT: 13
AST: 12

One year after End Of Treatment: Viral Load: 0- NEGATIVE
ALT: 20
AST: 17

CURED

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: TX naive who had Sovaldi & Oly w/o RBV & INF, 2-3 years ago. What's up?
« Reply #5 on: November 30, 2015, 02:48:35 am »
So sorry to hear about your friends but just to add that is not the case for many who treated with the old medicines.

For myself perhaps I have been lucky or perhaps just average. I did treat for 6 months with interferon monotherapy 3 shots a week and did not respond in anyway. I later treated with pegintron and ribavirin for 6 months my viral load increased on treatment. Still later I treated again with interferon and ribavirin along with a trial medicine for 6 months again my viral load did not decline at all.

Finally after being infected with hep c for 30 years I progressed over the years with each subsequent biopsy from F1 to finally F4 cirrhosis. However even with cirrhosis I have not slowed down much. I did develop some edema and also esophageal varicies that required banding all as a consequence of my cirrhosis. But I still work full time plus a part time hobby job and am starting back to the gym.

If I had not treated my future was looking grim now with cure I have hope for a future I am 57 years old and was beginning to doubt I would live long enough to retire.

For me it was an easy decision to treat but I fully understand your hesitancy. All I can say is do you research and make your own decision. I am sure many here will share their stories and opinions but of course ultimately the choice is up to you.

Lynn
« Last Edit: November 30, 2015, 03:14:01 am 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 D63

  • Member
  • Posts: 44
  • and, so . . .
Re: TX naive who had Sovaldi & Oly w/o RBV & INF, 2-3 years ago. What's up?
« Reply #6 on: November 30, 2015, 03:10:08 am »
OH! Glad I was awake! Thanks, Lynn. Yes, I do know that others who treated with the older tx, not to my knowledge suffer the same consequences. I am operating within a "sphere" of observation and judgement, being close to people with those similarities. In the original work-up my hepatologist declined me for INF & RIB to hold out for what was on the horizon.
I am really impressed with the fortitude and courage and will you have to do what you did and to do what you're doing, as well as the others here and my friends. I appreciate your understanding of my concern and your inspiration too.
Genotype: 1A 
Contracted tattoo
Dx in 1990
Fibroscan: 11/15/2016 
Stage: F-0,  5.4 Kpa
Tx naive
Started Harvoni: 1/30/2017 - 8 weeks Tx

Week 1 Starting VL: 3,044,516
AST: 36
ALT: 63
Cryoglobulinemia: positive 12.00
Week 2:
AST: 15
ALT: 20
Week 4 VL: 0- UD
Cryo: NEGATIVE
AST: 16
ALT: 20
Week 8 EOT VL: 0-UD
AST: 15
ALT: 18
Week 12, after EOT of 8 WK Tx: VL: 0- UD
Six months after EOT: VL: 0- UD
ALT: 13
AST: 12

One year after End Of Treatment: Viral Load: 0- NEGATIVE
ALT: 20
AST: 17

CURED

 


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