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Author Topic: 13 million viral load but Dr. only treating for 8 weeks  (Read 11624 times)

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Offline Scoutdoy

  • Member
  • Posts: 452
13 million viral load but Dr. only treating for 8 weeks
« on: July 11, 2015, 12:29:53 am »
I am very concerned about the
 treatment that I am going to start in a few days .I got approved by my insurance for harvoni for 8 weeks, which i am very excited about, but my viral load is at 13 million. All of the literature I have read say I should be taking it for 12 weeks I thought it should be at least 12 weeks although I have no cirrhosis and very good liver numbers ...has anyone else experienced this?  I don't want to go through the treatment and relapse
Logged
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: 13 million viral load but Dr. only treating for 8 weeks
« Reply #1 on: July 11, 2015, 12:36:58 am »
Have you asked this question to your doctor I would recommend you start there.

It could be you have an initial approval by your insurance for 8 weeks and they will add the other 4 weeks later. Ask your doctor and or your prescription drug insurance provider.

Good luck on treatment
Logged
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 Scoutdoy

  • Member
  • Posts: 452
Re: 13 million viral load but Dr. only treating for 8 weeks
« Reply #2 on: July 11, 2015, 12:46:29 am »
Thank you for the reply.  I am a little scared about the whole process of what is going to happen and I have so many questions. Everything is happening so fast. My appt is with the Dr. Next week to get info on the medicine and get started. I suppose I should just be patient and wait but I find myself researching what I shoul or shouldn't do....the anxiety is killing me, I was originally told I wasn't sick enough to get approved, and I was shocked when the pharmacy called and said my prescription would be ready for pick up today. Apparently I was called even before the doctors office...wow
Logged
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline will I?

  • Member
  • Posts: 15
Re: 13 million viral load but Dr. only treating for 8 weeks
« Reply #3 on: July 11, 2015, 09:52:43 am »
Well i have high f3 very close to cirrhosis in fact the first bloodtest my insurance made me get said i had cirrhosis...the second one before treatment said very close to f4. viral load 6million only had the hep c for 5 years. but i have fatty infiltrattion of liver on top of hep c genotype 3 which made for some nasty quick liver damage
anyhow i just started my 4th month of solvadi and ribasphere with only 1 bloodtest at week 4 which said non detectable. but my doc kept me on it till now.. i have a bloodtest next week.
Is this a long time, or does my liver damage make for longer treatment??
Logged

Offline GLCII

  • Member
  • Posts: 127
Re: 13 million viral load but Dr. only treating for 8 weeks
« Reply #4 on: July 11, 2015, 10:48:00 am »
Quote from: Scoutdoy on July 11, 2015, 12:29:53 am
I am very concerned about the
 treatment that I am going to start in a few days .I got approved by my insurance for harvoni for 8 weeks, which i am very excited about, but my viral load is at 13 million. All of the literature I have read say I should be taking it for 12 weeks I thought it should be at least 12 weeks although I have no cirrhosis and very good liver numbers ...has anyone else experienced this?  I don't want to go through the treatment and relapse

Hi Scoutdoy

My insurance wouldn't pay a dime and my VL was over 12 millon. They denied the prescription flat out saying I wasn't bad enough and also denied the appeal that HFH submitted. If your insurance approved 8 weeks that's atleast a good start. They could add another 4 weeks if the doc recommends it. Keep in kind that when I finally started doing the Tx, which Gilead gave me after the denials, my VL went from 12043488 to under 15 during the first 2 weeks and was undetected after 4 weeks.
Logged
Pre Tx (VL 12043488) ALT 52/ AST 39
Harvoni Start Date 03/12
2 Week in Tx Results HCV RNA Detected, less than 15 IU/mL. ALT 19 / AST 19
4 Weeks in Tx Results HCV RNA Not detected. ALT 21 / AST 18
12 Week in Tx Results HCV RNA Not detected. ALT 17 / AST 19
--------------------------------------------------------------
Post 12 Week EOT Tx ALT 19/ AST 19 (Undetected)
Post 24 Week EOT Tx ALT 19/ AST 15 (Undetected)

Offline Scoutdoy

  • Member
  • Posts: 452
Re: 13 million viral load but Dr. only treating for 8 weeks
« Reply #5 on: July 11, 2015, 02:53:16 pm »
That's good news about your viral count.  It's strange how my viral count is so high ..yet I show no liver damage.  I have horrendous joint pain though.  I hope once the treatment is completed that the joint pain eases up.  I don't see very many people on this forum with very high viral counts like yours and mine
Logged
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: 13 million viral load but Dr. only treating for 8 weeks
« Reply #6 on: July 12, 2015, 05:10:50 am »
Hi Scoutdoy and welcome

Strangely there is no correlation with viral load and extent of liver damage same for ALT and AST liver tests.

People can have high numbers and little damage or low numbers and liver cirrhosis

Best of luck to you
Lynn
Logged
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 GLCII

  • Member
  • Posts: 127
Re: 13 million viral load but Dr. only treating for 8 weeks
« Reply #7 on: July 12, 2015, 12:14:11 pm »
Scoutdoy

I was astounded when I saw how high my VL was. The 12043488 was actually from a 2/17/14 test I saw online in the My Chart HFH has. It could have been higher or lower at the time I started the treatment. The last time I saw my VL it was only 2.5 million. That was back in "06" I can't figure out why it was so high or what makes it go so high.  I did read on here where one person had a VL of 22 million.  :o


My doc scheduled blood work for every 2 weeks during the treatment but not one prior to starting the treatment. Go Figure!

I know this is hard but try not to be too concerned at this point. Your doc could order another 4 weeks during your 8 week treatment. Talk to him/her about it.

I'm curious as to why doctors don't follow a certain protocol when treating patients on Harvoni. If you read these posts on here, it seems everyones doctors has a different approach to how long they are prescribing the treatment and when to get blood work. My VL was over 12 million, with no severe liver damage ( cirrhosis ) and I was prescribed 12 weeks. Your's is over 13 million and your doc orded 8 weeks. It seems that people on here, that are in the similar situations, are being treated differntly by different doctors. I wonder why?!  ???
Logged
Pre Tx (VL 12043488) ALT 52/ AST 39
Harvoni Start Date 03/12
2 Week in Tx Results HCV RNA Detected, less than 15 IU/mL. ALT 19 / AST 19
4 Weeks in Tx Results HCV RNA Not detected. ALT 21 / AST 18
12 Week in Tx Results HCV RNA Not detected. ALT 17 / AST 19
--------------------------------------------------------------
Post 12 Week EOT Tx ALT 19/ AST 19 (Undetected)
Post 24 Week EOT Tx ALT 19/ AST 15 (Undetected)

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: 13 million viral load but Dr. only treating for 8 weeks
« Reply #8 on: July 12, 2015, 01:46:39 pm »
Still though I was prescribed 24 weeks but only approved initially by insurance for 12 had to get the further 12 weeks approved later. As the treatment of 8 weeks is only to be "considered" for patients with VL less than 6 million treatment naive with no cirrhosis you should be getting 12 weeks prescribed. Per the Harvoni prescribing information sheet

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

I am wondering if the doctor actually wrote the prescription for 12 weeks and the insurance for whatever reason has only approved 8 weeks and will approve the remaining 4 weeks later on after you are close to the 8 week mark.

I would ask my doctor what was actually prescribed
Logged
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 Scoutdoy

  • Member
  • Posts: 452
Re: 13 million viral load but Dr. only treating for 8 weeks
« Reply #9 on: July 12, 2015, 02:10:17 pm »
I go on the 22nd and pick up the medicine (that has already arrived) and I am going to ask some detailed information. This forum has been very helpful on questions I would like answered.  I have learned over the years to be my own doctor in ways and not put all my trust in any one person.  I would hate to go 2/3 of a treatment simply over a paper mistake. I would like to know from anyone who has gone through the treatment if some of the symptoms went away? Like joint and muscle pain or brain fog? I would like to list my numbers on here under my name.. I am just not sure how to...I am new to the forum and not the greatest with computers. My kids usually do it for me...even the 7 yr old
Logged
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline GLCII

  • Member
  • Posts: 127
Re: 13 million viral load but Dr. only treating for 8 weeks
« Reply #10 on: July 12, 2015, 02:14:39 pm »
Go to the top of the page, right below where it says About Hepatitis and you'll see Profile, then Forum Profile. You can add your info there.
Logged
Pre Tx (VL 12043488) ALT 52/ AST 39
Harvoni Start Date 03/12
2 Week in Tx Results HCV RNA Detected, less than 15 IU/mL. ALT 19 / AST 19
4 Weeks in Tx Results HCV RNA Not detected. ALT 21 / AST 18
12 Week in Tx Results HCV RNA Not detected. ALT 17 / AST 19
--------------------------------------------------------------
Post 12 Week EOT Tx ALT 19/ AST 19 (Undetected)
Post 24 Week EOT Tx ALT 19/ AST 15 (Undetected)

Offline Scoutdoy

  • Member
  • Posts: 452
Re: 13 million viral load but Dr. only treating for 8 weeks
« Reply #11 on: July 12, 2015, 06:47:12 pm »
Thank you...I appreciate your help
Logged
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!
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