Welcome, Guest. Please login or register.
February 26, 2024, 12:07:04 pm

Login with username, password and session length


Members
  • Total Members: 6307
  • Latest: golfer
Stats
  • Total Posts: 55122
  • Total Topics: 4850
  • Online Today: 127
  • Online Ever: 1314
  • (June 22, 2016, 05:23:42 am)
Users Online
Users: 0
Guests: 101
Total: 101

Welcome

Welcome to the Hep Forums, a round-the-clock discussion area for people who have Fatty Liver Disease, Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.
  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.
  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.
  • Product advertisement (including links); banners; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from the Hep Forum Moderators.
Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: New member  (Read 22311 times)

0 Members and 1 Guest are viewing this topic.

Offline elias

  • Member
  • Posts: 285
New member
« on: September 08, 2016, 05:17:18 pm »
Hello and thank you for this forum.

I just received confirmation yesterday of my antibody + HCV test. I had been reading material on this forum ever since the antibody test was given. Before confirmation. So i do know a bit about the basics

The test was given because there was some mild elevation in liver enzymes. The viral level was high (about log 6). Other than that I do not yet know anything bout the Genotype or "Fibroscan".

I have appointment with gastroentologist next week.

My family doctor tried to reassure me that this is now quite curable now, given the new meds.

I have two concerns which are haunting me.

1) One of course is the status of my liver. Since i may have had this for a long time. Though other than those enzymes , my blood tests are normal. And no outstanding health issues that I know of. I take no medications

2) The other is financial. How will I be able to afford those new medications on my limited Social Security income and Medicare. I know that Medicare Part D is supposed to cover this. I've read news reports that it actually has been. I also receive something called "Extra Help" for Part D. This is for those on Medicare with very low income (close to poverty level) and little assets. (I think it's Federal, not state, but I'm not certain.) It is meant to help those on Medicare Part D with their copays, etc. The one time I did need to use my prescription drug plan (Part D) , I only paid ~$2 in copay. I guess the "Extra Help" is what had made it that low.  However,I do not know how to go about finding out if this "Extra Help" for Part D even covers meds this costly. I have very rarely used Part D of Medicare, since I rarely needed medications thus far.  I probably should post this rather technical insurance question elsewhere on this forum. Once I find the Forum category for it.

Unless somehow someone reading this might just happen to know?

I really wish I could focus all my energies on my health right now and not get bogged down with insurance questions. But alas, such is not the case

Anyhow. Thank you for the Forum. Truly appreciate it.

-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 AllShookUp

  • Member
  • Posts: 30
  • "itching like a man on a fuzzy tree" - Not anymore
Re: New member
« Reply #1 on: September 08, 2016, 08:43:00 pm »
Quick answer to your insurance questions.

You are in a pretty good position to get the drugs because you have medicare part D w/ extra help. The extra help allows you to change your part D insurance provider at any time during the year - no need to wait till the end of the year to make allowed annual change. The extra help also puts a cap on the money that comes out of your pocket.

Once you know your genotype and which medicines are required, check out your part D's Formulary. You should find latest version on line. If they don't offer what you need , then check out other companies (under the extra help umbrella) formularies and switch to one which has what you need.
Male - BabyBoomer
1995 - diagnosed HCV
2002 - Peg + Riba - quit after 5 weeks severe anemia
2015 Nov -start 12 weeks Harvoni +Riba + Procrit
Gen 1b - VL 1,500,000 -ALT93-AST143
Comp cirrhosis - enlarged spleen - platelets 35
Week 5 of Tx - HCV undetected - ALT/AST normal
End Week 12 of Tx - HCV UD - ALT/AST normal
Jan. 25, 2016 EOT
April 4, 2016 - SVR10 UD - ALT/AST normal
May 5, 2016 - SVR14 UD - ALT/AST normal
Aug 5, 2016 - SVR28 UD - ALT/AST normal

Offline elias

  • Member
  • Posts: 285
Re: New member
« Reply #2 on: September 08, 2016, 10:37:34 pm »
Thanks for what may be a very reassuring reply

Quote
Once you know your genotype and which medicines are required, check out your part D's Formulary.

Do you man the Formulary of the particular PDP (Prescription Drug Plan)
Medicare had assigned me to?

-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 AllShookUp

  • Member
  • Posts: 30
  • "itching like a man on a fuzzy tree" - Not anymore
Re: New member
« Reply #3 on: September 08, 2016, 11:18:51 pm »
Yes, that is what I mean. I am also saying that there are other Extra Help PDPs  available (at least in my state) to choose from if the one assigned to you does not meet your needs.

When checking the Formulary make sure it is the most recent. My PDP - Silver Script- seems to revise about every 3 or 6 months.

Another thing to consider is that the annual money cap resets around the first of each year, so to save money you might want to wait until the beginning of the new year before starting.




Male - BabyBoomer
1995 - diagnosed HCV
2002 - Peg + Riba - quit after 5 weeks severe anemia
2015 Nov -start 12 weeks Harvoni +Riba + Procrit
Gen 1b - VL 1,500,000 -ALT93-AST143
Comp cirrhosis - enlarged spleen - platelets 35
Week 5 of Tx - HCV undetected - ALT/AST normal
End Week 12 of Tx - HCV UD - ALT/AST normal
Jan. 25, 2016 EOT
April 4, 2016 - SVR10 UD - ALT/AST normal
May 5, 2016 - SVR14 UD - ALT/AST normal
Aug 5, 2016 - SVR28 UD - ALT/AST normal

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: New member
« Reply #4 on: September 09, 2016, 12:51:43 am »
Many people have had hep C for many years with little to no liver damage. I have see a stat where about 20% of patients with hep c for 20 years will develop cirrhosis. So 80% will not.

As far as blood testing my results other than liver enzymes were normal until a couple of years after I was diagnosed with cirrhosis. But I am optimistic you won't have any liver damage or at most very little and very likely not cirrhosis.

Good luck
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: New member
« Reply #5 on: September 09, 2016, 01:23:36 am »
Thanks Lynne for your reassuring comments.

I am panicked over this of course, but trying to remain hopeful as best I can

I'm afraid I've had this for longer than 20 years. Given my guess as to how n where I got it. But I'll keep hoping nonetheless. Other than some Irritable Bowel Syndrome (IBS)-type constipation, I have few if any symptoms. But who knows..

=============================

I still have  a follow-up question for "AllShookUp" about Medicare Part D PDP Plans.

I'll post it either tonight or tomorrow.

Would you happen to know of an organization and/or agency best to contact if i need further clarification of these complex Medicare Part D questions?

Thanks again:

-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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: New member
« Reply #6 on: September 09, 2016, 01:56:36 am »
Just to add I was followed closely from when I was first diagnosed in 1990 when I likely had hep c for about 11 to 12 years at that point. I had liver biopsies every 5 years 1993, 1998, 2003, and my last biopsy in 2008 where I was diagnosed with cirrhosis. So that was after probably being infected for 30 years. And like I said only about 20% of people will progress to cirrhosis. I guess I was just not that lucky on that score.
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: New member
« Reply #7 on: September 09, 2016, 02:13:07 am »
Yes, that is what I mean. I am also saying that there are other Extra Help PDPs  available (at least in my state) to choose from if the one assigned to you does not meet your needs.

When checking the Formulary make sure it is the most recent. My PDP - Silver Script- seems to revise about every 3 or 6 months.

Another thing to consider is that the annual money cap resets around the first of each year, so to save money you might want to wait until the beginning of the new year before starting.

Thanks again, AllShookUp:

My current Medicare part D PDP does list Harvoni

===============

 Tier Description: Specialty Tier

30-day Preferred Pharm: 25%

=================

It also lists : Sovaldi in a similar manner.

I do not see any  Medicare Part D PDP plans listing Epclusa. Which is combination of Soposbuvir and Velpatasvir.  Could this be because Epclusa was so recently released?

I do not see Velpatasvir listed on any of those PDP  plans either

Would you happen to know if this omission from list is specific to Part D plans, or simply that insurance companies in general have not yet gotten around to a policy on Epclusa? My hunch is that will be a much better medicine that the the others so far. And it seems to cover all major genotypes.

I know this might all seem a bit premature. I am asking all this now, not even knowing my genotype, because I'd rather that imminent decisions on this, such as my choice of physician and medication be based on medical considerations as much as possible rather than insurance issues. I realize this is kinda tricky given these new meds and their costs.

I've tentatively narrowed it down to Harvoni or Epclusa. Since I'm desperately hoping to avoid Ribavirin . I do see Harvoni on some of those PDP plans. But not Epclusa.

If this does get too complex for me, are there organizations and/or agencies best suited to guide me through it- if i cant sort it out on my own and the specialist doesnt want to take the time?

Thanks again. Part D is almost a foreign language to me as i've rarely needed to even use it. Until this mess..

-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 elias

  • Member
  • Posts: 285
Re: New member
« Reply #8 on: September 09, 2016, 02:24:35 am »
Just to add I was followed closely from when I was first diagnosed in 1990 when I likely had hep c for about 11 to 12 years at that point. I had liver biopsies every 5 years 1993, 1998, 2003, and my last biopsy in 2008 where I was diagnosed with cirrhosis. So that was after probably being infected for 30 years. And like I said only about 20% of people will progress to cirrhosis. I guess I was just not that lucky on that score.
=============

Thanks Lynn. So sorry about that. Its tragic these new medications werent around back in 2003, when you sought treatment for it with the older meds
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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: New member
« Reply #9 on: September 09, 2016, 03:13:40 am »
Well it is what it is. I treated back in maybe 1995 with interferon monotherapy. Three shots of interferon a week for 6 months no response. I treated again maybe 2001 with the new pegalayed interferon and ribavirin just one shot a week for six months again no response. Then maybe about 2003 treated on a clinical trial interferon, riba and a trial med still nothing.  Diagnose January 2008 with cirrhosis on my 4th liver biopsy with no medical treatment available.  Wondering if and when I'm going to decompensate and be waiting for liver transplant.

Treated with Sovaldi and Olysio in 2014 for 12 weeks undetected at EOT, 12 weeks later was found to have relapsed.

 November 2014 starting treatment for 24 weeks with Harvoni  and 15 weeks ribavirin and now on my fifth treatment I am finally cured.

That's my story
« Last Edit: September 09, 2016, 03:21:20 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 elias

  • Member
  • Posts: 285
Re: New member
« Reply #10 on: September 09, 2016, 04:19:42 am »
Quote
Diagnose January 2008 with cirrhosis on my 4th liver biopsy with no medical treatment available.  Wondering if and when I'm going to decompensate and be waiting for liver transplant.

This is so heartbreaking, Lynn!

You finally did rid yourself of the virus after some painful and failed attempts, yet have this hanging over you.

Are there any interventional and/or life-style approaches which can ameliorate chirrosis. or at least slow or prevent its course?

I'm naive with all this as I've only heard about HCV a week or so ago.

-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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: New member
« Reply #11 on: September 09, 2016, 04:31:00 am »
The one best thing I can do I have done is to have cured my hep c.

The reversal of cirrhosis for those of us with cirrhosis due to hep c is a topic of discussion amoung experts and those of us with cirrhosis. The thought is that with time some of us now cured may experience a regression of our liver disease. I have seen it said that about 50% may improve with time.

But as I am ok now I am ok with what functioning liver I have left. The biggest risk for me and others like me is HCC heptocellular carcinoma aka liver cancer. We are at increased risk of HCC but now with cure even that risk is decreased. For now and probable for the rest of my life I will have blood testing and abdominal ultrasounds to monitor for the possibility of HCC to catch it as early as possible. But as long as I don't get HCC I should be fine and hopefully die from something other than liver disease.

Of course it goes without saying I can never drink any alcohol and need to be cautious with medicines. Also to avoid salt which contributes to the edema I have (lower leg swelling) from cirrhosis. I have my flu shot early every year and have had both pneumonia vaccines as I guess we are considered to be of somewhat fragile health

Really I am otherwise in pretty good health. I could stand to lose some weight and that would also be helpful to my liver but really for being 58 I think I am doing ok
« Last Edit: September 09, 2016, 04:38:34 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 FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: New member
« Reply #12 on: September 09, 2016, 11:35:37 am »
Hi Elias and welcome to the forum! I know this is a very scary time for you.  But once you get started on treatment and get all these decisions behind you, your stress level will hopefully improve.

I wanted to share with you that I was likely infected in the mid-70s, 40+ years ago, and I have minimal liver damage, F 1-2 per biopsy & FibroSure. So just because you've had this over 20 years does not mean you have significant liver damage.

There are several articles in the medical literature that show drinking coffee can be of benefit; why, they don't understand fully yet, but the data are pointing to coffee being of benefit in preventing fibrosis.

Try to hang on until you get more info on your health status.  Our imaginations can run wild while waiting, I know -- but try to "stay calm and carry on" until you get more info. Deep breaths!! Keep us posted, FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline elias

  • Member
  • Posts: 285
Re: New member
« Reply #13 on: September 09, 2016, 05:26:09 pm »
Thank you , FutureThinker,  for your encouraging words.

And congratulations on your clearing the HVC!! if I understand those signature terms correctly.

The only "drug" I take is coffee. So good to hear about caffeine. I even use it as a pain killer oddly

I don't yet know my Genotype.

My concern-other than of course the status of my liver- is cost and insurance. I'm hoping it not be the major focus of my initial consultation with the Gastro specialist next week. So the better educated on this i am now, the more productive that consult might be.

I see that Harvoni is listed on many of the Medicare Part D PDP's (Doesnt mean they make it easy to get. Just means its in their Formularies)

So what happens then if someone on Medicare is Genotype 2 or 3? Harvoni- I read- doesn't work for those GTs

I do not see Epclusa listed on any of those Medicare Part D plans. I'm curious as to why? Since it's considerably less expensive than Harvoni and supposedly works cross-genotype

Also. When I look at assistance programs for these medications, there's exclusion of anyone thats on Medicare or Medicaid. Why would  that be? Seems a bit paradoxical at first glance, doesnt it?  (I'm guessing perhaps theyre expecting govt to pick up the slack. But i'm new to all this. So I dont really get it?

Anyhow, perhaps "AllShookUp" can help explain some of this? Or anyone else that might know?

Sorry for posting about insurance issue in introductory post. But being reassured theres a cure. and then not being able to access that cure does haunt me.

Heres link to American J Managed Care ( I think article is from May 2016) which outlines some of this:

http://www.ajmc.com/journals/issue/2016/2016-5-vol22-sp/coverage-for-hepatitis-c-drugs-in-medicare-part-d

Summary of above article:

Quote
Take-Away Points
 
The high prices of new hepatitis C virus (HCV) drugs are bringing fiscal pressures onto Medicare. The current coverage designs for HCV drugs by Medicare Part D plans are:

    All Part D plans cover at least 1 new, expensive HCV drug.
    Nearly all plans charge relatively high coinsurance and require prior authorization.
    Expected out-of-pocket spending for enrollees with no subsidy to complete a course of treatment ranges from $6297 to $10,889; for enrollees eligible for a low-income subsidy, total expected out-of-pocket spending varies between $10.80 and $1191.
    Under the current Part D benefits, HCV drug users with no subsidy face sizable financial burdens.

Perhaps things have changed since this was published?

Thanks again for Forum

-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 FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: New member
« Reply #14 on: September 09, 2016, 05:57:36 pm »
Thanks for the congrats! It's only been a few weeks and still almost seems unreal.

Epclusa was just approved for the market on June 28th and many insurance formularies take their time to get these drugs listed.  So that may be why you're not seeing it yet -- it's just been 2+ months.

I don't have MC so I am unable to help you with your valid and important questions, but I am very glad to see AllShookUp seems to be quite knowledgeable, so that's good. No need to apologize re: insurance questions -- trust me, we've all had them!!!
I had to take my insurance co to my state ins. board to get my treatment, so it's (unfortunately) part of the equation w/ treatment, due to the very high costs of these DAAs.

Until you get some basic info, i.e. genotype and F score, you'll be unable to really get a handle on which drug is best for you. So hang in there! FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline AllShookUp

  • Member
  • Posts: 30
  • "itching like a man on a fuzzy tree" - Not anymore
Re: New member
« Reply #15 on: September 09, 2016, 10:51:07 pm »
elias - It looks like you have been doing your homework and getting some good insights from others. That is a good thing.

I read the ajmc article you posted. You fall into the lowest paying category.

Today, I received "2017 Annual Notice of Changes" package from my PDP. You should be getting yours soon and be able to study latest cost rates.

Quote
Also. When I look at assistance programs for these medications, there's exclusion of anyone that's on Medicare or Medicaid. Why would  that be? Seems a bit paradoxical at first glance, doesnt it?  (I'm guessing perhaps theyre expecting govt to pick up the slack. But i'm new to all this. So I dont really get it?

There are exceptions to that. I was very fortunate to have been referred to a liver
specialist/transplant center in the big city for treatment by my local hospital GI. The staff really had their act together. The person whose sole job was to deal with insurance companies and supply patients their needed drugs, knew of and secured for me, assistance from a charitable medical group which covered the remaining costs of meds that Part D would not pay. Totally blew my chronic cynical mind.

Don't be surprised if the GI you are seeing this week wants to do other diagnostic
stuff (ie. possibly - catscan, mri, ultra sound, etc) before ordering up meds. I am not saying that he will necessarily do that but mine did.


Male - BabyBoomer
1995 - diagnosed HCV
2002 - Peg + Riba - quit after 5 weeks severe anemia
2015 Nov -start 12 weeks Harvoni +Riba + Procrit
Gen 1b - VL 1,500,000 -ALT93-AST143
Comp cirrhosis - enlarged spleen - platelets 35
Week 5 of Tx - HCV undetected - ALT/AST normal
End Week 12 of Tx - HCV UD - ALT/AST normal
Jan. 25, 2016 EOT
April 4, 2016 - SVR10 UD - ALT/AST normal
May 5, 2016 - SVR14 UD - ALT/AST normal
Aug 5, 2016 - SVR28 UD - ALT/AST normal

Offline dragonslayer

  • Member
  • Posts: 873
Re: New member
« Reply #16 on: September 09, 2016, 11:13:49 pm »
Patient Access Network is incredible..  They picked up all my copays so that treatment cost me nothing despite being on a Medicare advantage plan.

https://www.panfoundation.org/index.php/en/
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline elias

  • Member
  • Posts: 285
Re: New member
« Reply #17 on: September 10, 2016, 08:30:55 pm »
Thanks all:

I'm trying to keep sane during this rollercoaster. Not easy to do.

I guess feeling equipped with lots of information is my peculiar way of coping now.

I know i come off as dispassionate, but in reality im in a state of panic.
=========================

Anyhow,  i do have a few follow up questions about the Harfvoni vs Epclusa  thing.

I realize its a bit naive, since i  may have little choice in this given insurance factor.  I might even not be able to get either, but nevertheless, here it goes:

Among the many on this forum that are experiencing some pretty bad , prolonged post-treatment effects with Harvoni, is there some sense which of the two "ingredients" in Harvoni might have caused this: Whether the Sofosbovir or the Ledipasvir? Because if it's the latter, perhaps Epclusa might be a better bet. As the second component is a different DAA (Velpatasvir?) Or is this inevitable with all the new DAA's?

The question may seem a bit premature and perhaps even unanswerable at this point, but it bears on the larger question about holding out for potentially less toxic medicines down the road. if the condition of my liver even allows for that.

In retrospect, i wish I hadnt looked at that section on this forum about post-treatment illnesses. But I had already peeked there..

Thanks again:

-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 dragonslayer

  • Member
  • Posts: 873
Re: New member
« Reply #18 on: September 10, 2016, 09:20:09 pm »
Elias, what youre seeing here is not a representative sampling of adverse events if youre trying to make a determination as to odds of any single individual experiencing these kinds of more serious side effects/symptoms.   Most patients experience only mild adverse events that can be tied directly to the medication.   As for the odds of any single individual experiencing symptoms with Harvoni, out of 539 individuals on 12 wks treatment the following occurrences were noted in the trials:

Fatigue          13% 
Headache       14%
Nausea             7%
Diarrhea            3%
Insomnia           5%

The majority of these adverse effects were listed with a severity grade of just 1.  These results can be seen summarized here on page 5.   Adverse effects are listed at somewhat higher frequencies for those with cirrhosis in table 3 on page 6.

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


Without knowing the condition of your liver,  nor your genotype, its impossible to give much advice regarding waiting for a different treatment, or even what you might or might not be eligible for.. However, HCV is not a disease to mess around with...  I found Harvoni extremely easy to take, unlike some others.. However, the incidence of adverse events seem to parallel, overall, my experience with it, and if you're eligible to take it and get cured, I wouldnt even think twice about doing so.






« Last Edit: September 10, 2016, 09:22:41 pm by dragonslayer »
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline elias

  • Member
  • Posts: 285
Re: New member
« Reply #19 on: September 10, 2016, 09:27:34 pm »
Thanks, Dragonslayer:

My question wasn't about side effects  while actually taking the meds.

I dont worry about those, because its for 12 weeks or thereabouts.

My concern is about those who develop post-treatments after-effects-- illnesses after treatment and cant seem to shake them. Things like arthritis, arthrlagia, all sorts of conditions?

There seems fairly large number on forum here reporting those

Does anyone know how common those are. And which component of these drug-combos might be causing those?

-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 dragonslayer

  • Member
  • Posts: 873
Re: New member
« Reply #20 on: September 10, 2016, 09:48:29 pm »
Weve been round about this subject several times here, and youll find a wide divergence of opinions.. So far as Ive been able to determine, there are no serious  studies which positively tie adverse events post treatment to  Harvoni.. All weve seen are anecdotal data. 
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline AllShookUp

  • Member
  • Posts: 30
  • "itching like a man on a fuzzy tree" - Not anymore
Re: New member
« Reply #21 on: September 10, 2016, 10:28:40 pm »
DS - Pan foundation is the one that covered me also. Did you personally request assistance?

elias - I understand your being uptight about treatment and yes you should be well versed in what you are getting yourself into; however, I think you are causing yourself unnecessary stress. Stress is an enemy to your health.

IMHO, if you are in reasonably good health, 12 weeks of just Harvoni is a cake walk for most people. Until you learn more about your condition - relax - don't borrow trouble - in the end everything is going to be all right.
Male - BabyBoomer
1995 - diagnosed HCV
2002 - Peg + Riba - quit after 5 weeks severe anemia
2015 Nov -start 12 weeks Harvoni +Riba + Procrit
Gen 1b - VL 1,500,000 -ALT93-AST143
Comp cirrhosis - enlarged spleen - platelets 35
Week 5 of Tx - HCV undetected - ALT/AST normal
End Week 12 of Tx - HCV UD - ALT/AST normal
Jan. 25, 2016 EOT
April 4, 2016 - SVR10 UD - ALT/AST normal
May 5, 2016 - SVR14 UD - ALT/AST normal
Aug 5, 2016 - SVR28 UD - ALT/AST normal

Offline dragonslayer

  • Member
  • Posts: 873
Re: New member
« Reply #22 on: September 10, 2016, 10:47:31 pm »
DS - Pan foundation is the one that covered me also. Did you personally request assistance?

elias - I understand your being uptight about treatment and yes you should be well versed in what you are getting yourself into; however, I think you are causing yourself unnecessary stress. Stress is an enemy to your health.

IMHO, if you are in reasonably good health, 12 weeks of just Harvoni is a cake walk for most people. Until you learn more about your condition - relax - don't borrow trouble - in the end everything is going to be all right.

Yes, AllShook, PAN was fantastic.  They handled everything for me, and I wound up paying nothing.  I cant say enough good stuff about them.
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Luna7

  • Member
  • Posts: 179
Re: New member
« Reply #23 on: September 10, 2016, 10:50:50 pm »
The side effects are much worse in Europe, so be sure and remain within the US border if you decide to take it... :P
Between F2 & F3
Alt & Ast nearly 100
Viral load over 8 million
Gt 3a

Treated 12 weeks with Sovaldi & Daklinza, start date mid-April 2016
Undetected at 4 weeks into treatment
Alt & Ast  normal
Treatment completed July 14
Most likely will be undetected at 12 weeks (mid October 2016) as symptoms are gone

Offline dragonslayer

  • Member
  • Posts: 873
Re: New member
« Reply #24 on: September 10, 2016, 10:52:57 pm »
The side effects are much worse in Europe, so be sure and remain within the US border if you decide to take it... :P

Why is that, Luna?
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Luna7

  • Member
  • Posts: 179
Re: New member
« Reply #25 on: September 10, 2016, 11:05:12 pm »
Why is that, Luna?

I think the drug companies based in the US manage to hide a lot of information for monetary reasons.
Between F2 & F3
Alt & Ast nearly 100
Viral load over 8 million
Gt 3a

Treated 12 weeks with Sovaldi & Daklinza, start date mid-April 2016
Undetected at 4 weeks into treatment
Alt & Ast  normal
Treatment completed July 14
Most likely will be undetected at 12 weeks (mid October 2016) as symptoms are gone

Offline dragonslayer

  • Member
  • Posts: 873
Re: New member
« Reply #26 on: September 10, 2016, 11:20:00 pm »
I think the drug companies based in the US manage to hide a lot of information for monetary reasons.

Do you have any evidence for this?  Do you think European companies are inherently more honest that American ones?  What European companies have developed current DAA HCV drugs in wide usage today?
« Last Edit: September 10, 2016, 11:23:01 pm by dragonslayer »
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: New member
« Reply #27 on: September 11, 2016, 02:14:24 am »
Well all I can add as far as long term post treatment effects the only one I have is improving health.

Even though I have had cirrhosis for over 8 years treatment was a breeze and my post treatment labs except for my just barely above normal AFP test which has been reduced from around 40 to just 10 with 8 being normal and my platelet count which has risen from around 80 - 90 range to the highest score I have seen in decades of 111 with normal being 150 so still a little low but excepting those results you would not know I have cirrhosis.

I have some more energy and feel better than I have in years
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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: New member
« Reply #28 on: September 11, 2016, 02:18:12 am »
The side effects are much worse in Europe, so be sure and remain within the US border if you decide to take it... :P

I hadn't see that myself Luna can you provide a link I would like to read more about what side effected they are experiencing
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 AllShookUp

  • Member
  • Posts: 30
  • "itching like a man on a fuzzy tree" - Not anymore
Re: New member
« Reply #29 on: September 11, 2016, 09:27:06 pm »
Quote
Yes, AllShook, PAN was fantastic.  They handled everything for me, and I wound up paying nothing.  I cant say enough good stuff about them.

Ditto for me too. I plan to give them a good slice in my will - hopefully, they won't be collecting for many years.
Male - BabyBoomer
1995 - diagnosed HCV
2002 - Peg + Riba - quit after 5 weeks severe anemia
2015 Nov -start 12 weeks Harvoni +Riba + Procrit
Gen 1b - VL 1,500,000 -ALT93-AST143
Comp cirrhosis - enlarged spleen - platelets 35
Week 5 of Tx - HCV undetected - ALT/AST normal
End Week 12 of Tx - HCV UD - ALT/AST normal
Jan. 25, 2016 EOT
April 4, 2016 - SVR10 UD - ALT/AST normal
May 5, 2016 - SVR14 UD - ALT/AST normal
Aug 5, 2016 - SVR28 UD - ALT/AST normal

Offline Luna7

  • Member
  • Posts: 179
Re: New member
« Reply #30 on: September 12, 2016, 11:38:17 am »
I hadn't see that myself Luna can you provide a link I would like to read more about what side effected they are experiencing

I was referring to the side effect discrepancies in testing reported from the U.S., France, & Canada.
Lucinda reported the discrepancies here:
https://www.hepmag.com/blog/hepatitis-c-side-effects

Lucinda wondered if the cause of these discrepancies are differences between clinical trials in other countries, and while I allow that as a possibility I believe there very well could be another reason for these discrepencies -- that the the studies done by the U.S. in this case have been deliberately altered for the benefit of Gilead sales. Of course I have no proof of that -- call me jaded but ever since the fiasco with the tobacco companies I do not trust corporations in general. Additionally, Big Pharma does not seem to be acting in the best interest of people who need help -- they are far too greedy -- so this makes me believe they would not err on the side of caution but instead would get away with whatever they could in order to increase sales (including minimizing or distorting evidence that has the potential to decrease the astronomical profit they are able to achieve during the introduction of novel drugs).
Between F2 & F3
Alt & Ast nearly 100
Viral load over 8 million
Gt 3a

Treated 12 weeks with Sovaldi & Daklinza, start date mid-April 2016
Undetected at 4 weeks into treatment
Alt & Ast  normal
Treatment completed July 14
Most likely will be undetected at 12 weeks (mid October 2016) as symptoms are gone

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: New member
« Reply #31 on: September 12, 2016, 12:51:45 pm »
Hi all -- Coach Mike posted an excellent article on the US pharmaceutical system that I highly recommend for anyone wanting to understand more about it.  It's under the "Hepatitic C Awareness & Activism" category, Thread title "Big Pharma & Big Profits..." posted on 8/31/16. It's not just greed, albeit that is a big part.

The title of this excellent thread perhaps should be different, as I think it provides one of the best explanations of the pharmaceutical industry here that I've read.

Go check it out.  FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline dragonslayer

  • Member
  • Posts: 873
Re: New member
« Reply #32 on: September 12, 2016, 02:39:54 pm »
I was referring to the side effect discrepancies in testing reported from the U.S., France, & Canada.
Lucinda reported the discrepancies here:
https://www.hepmag.com/blog/hepatitis-c-side-effects

Lucinda wondered if the cause of these discrepancies are differences between clinical trials in other countries, and while I allow that as a possibility I believe there very well could be another reason for these discrepencies -- that the the studies done by the U.S. in this case have been deliberately altered for the benefit of Gilead sales. Of course I have no proof of that -- call me jaded but ever since the fiasco with the tobacco companies I do not trust corporations in general. Additionally, Big Pharma does not seem to be acting in the best interest of people who need help -- they are far too greedy -- so this makes me believe they would not err on the side of caution but instead would get away with whatever they could in order to increase sales (including minimizing or distorting evidence that has the potential to decrease the astronomical profit they are able to achieve during the introduction of novel drugs).

Luna, all you have to do is find some properly done scientific studies outside the Gilead clinical trials, done independently, using the same criteria and measuring sticks as Gilead.. If the results vary significantly, then I think youve got something... Otherwise, , as youve kind of alluded to, its strictly conjecture.. Even better would be if you found European studies done.. that would lend more credence to your feeling that somehow, Gilead has slanted their results.  Just make sure the studies were randomized in the same way, and that all study criteria were equally met on both sides...   Looking forward to seeing your results!

>>Lucinda wondered if the cause of these discrepancies are differences between clinical trials in other countries, and while I allow that as a possibility I believe there very well could be another reason for these discrepencies << 

I just read Lucinda's blog on this subject and I came away with a very different interpretation..  The most common side effects, ie, headache and fatigue were reported much less frequently in Canada than in the US.. In addition, the listing of individual adverse events such as blood, cardiac, and eye disorders , for example, fell into the < 2% range in canada.... Ie, they were relatively statistically insignificant in the overall picture as Harvoni side effects.   So, the fact that they were Less than 2% reported in Canada, and not reported here, to me, is not that big a deal statistically.   With the adverse event numbers Lower in the Canada pkg insert, wouldnt They be the ones who youd think might be underreporting?

As far as the slow heart beat reporting, this is now warned in the Gilead American pkg inserts also.
« Last Edit: September 12, 2016, 03:14:01 pm by dragonslayer »
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline elias

  • Member
  • Posts: 285
Re: New member
« Reply #33 on: September 12, 2016, 07:48:16 pm »
Hi again:

I saw Gastroenterologist today.

He took necessary bloods to run genotype n fibrosis testing  and scheduled Ultrasound in a few more days.

Once he gets those results, he will put put in for the medication best suited for my condition. It will be be those newer DAA's He is convinced he will not need to use Ribavirin in my case.

 He assured me that my chances of being cured are better than 98%. and that he does expect some degree of damage to my liver from the virus since I've had it for decades. But unlikely it will be severe. I had asked him about that. That was (and continues to be) a major concern. He guesses that the level I have (his wild guess. only a guess as ~F2)  would probably be reparable once I rid myself of the virus. That the liver can heal from it. I guess I'll know more when those results are in . I hope he's right.

As to my fears about insurance. It seemed he's on top of issues like that. He has staff person that works on it. Of course , there are many hurdles. But I dont think he'll leave me high n dry to fend entirely for myself. He said that so far none of his patients treated for this had to "run off to India" to get their meds.

He also said this is a real cure and not just some clinical trial results. He's been using it in real life , and that it's an amazing breakthrough.

My impression was that he knows this Hep C stuff quite well and is experienced in treating it. Was even aware of Epclusa. But he does speak very rapidly . So was good I had a bit of background already.

Hopefully , he said, this should all be behind me in a matter of months. It does seem that I shouldnt have to keep on top of him because he does know his stuff and the latest regimens.

The direction I'd like to go with this will be very hard for me to do , but ideally seems the best. it's as follows:

 To take this time  to focus on my general health. Something I had begun doing anyhow  before that traumatizing  Hep C test. And not obsess as much as I have been on the Hep C details. I should leave much of that to him. (easier said that done) I tend to be OCD in such matter,s because in the past, most my dr's didnt keep abreast. But this one offhand does seem like he does.

Many here have been encouraging to me in this most early part of the ordeal. Hoping you have suggestions as to how to achieve the above, at least in part

My impression is that that diet exercise regimens which are basically "heart-friendly" and/or "insulin resistance" friendly are also "liver friendly" And my resolve to work on those prior to the "Hep C positive" trauma was already bearing fruit in overall mood and a few health parameters.

I wish i knew how to get back to where was only a few weeks ago. Having changed my eating habits,  going to the gym regularly. doing my tai chi and other such exercises more diligently, drinking lots of water etc. It would take a dramatic divergence from my obsessive and cataclysmic personality. I realize I'll probably be needing lots of testing throughout , as swell as lots of paperwork regarding insurance issues. But the hard part would be to distract myself to the degree possible and lead my life. Ever since i found out i was Hep C positive, ive not had one real meal nor one real night sleep. I've not even been able to make eye contact with my kids.

Maybe this GI's more hopeful attitude can help help turn that around for me and actually set the healing process into play even before i start the medication.

Even as i write this, I feel plagued by nagging doubts about premature reassurances. So I do need faith that I'll come through this successfully. It would take  an amazing degree of self-discipline for me.

Suggestions?

-elias


« Last Edit: September 12, 2016, 07:54:15 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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: New member
« Reply #34 on: September 12, 2016, 08:36:44 pm »
Hi Elias

The best thing I can say is a quote by Leo Buscaglia

“Worry never robs tomorrow of its sorrow, it only saps today of its joy.”

The odds are very good even great you will be cured. Any liver damage even up to cirrhosis can improve with time. Worry today will not change future outcomes as the quote says worry only saps the joy from today.

The recommendations for post treatment cured patients with F2 or less is they wont need to be followed and should be treated the same as any patient who never had hep c. For those of us with F3 and F4 we will still need to be followed but our prognosis is greatly improved with cure.

Sounds like you have a great doctor and he is on top of your treatment needs.

My suggestion is to live the best life you can today and have confidence in being cured tomorrow

Best to you
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: New member
« Reply #35 on: September 12, 2016, 08:50:09 pm »
So it is true that liver fibrosis can be reversed by time and life-style changes , once the cause is removed?
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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: New member
« Reply #36 on: September 12, 2016, 10:49:40 pm »
Yes it can be reversed especially minimal damage.

It is more difficult for those like me with cirrhosis from what I have read about 50/50 but may be better than that only time will tell but even I have some hope of regression. In fact I have some evidence of improvement by looking at my improved platelet count at just one year post treatment.

This is from the AALSD treatment guidelines for post treatment follow up

http://www.hcvguidelines.org/full-report/monitoring-patients-who-are-starting-hepatitis-c-treatment-are-treatment-or-have

Recommended Follow-up for Patients Who Achieve a Sustained Virologic Response (SVR).

    For patients who do not have advanced fibrosis (ie, those with Metavir stage F0-F2), recommended follow-up is the same as if they were never infected with HCV.
    Rating: Class I, Level B


SVR typically aborts progression of liver injury with regression of liver fibrosis in most but not all treated patients. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Because of lack of progression, patients without advanced liver fibrosis (ie, Metavir stage F0-F2) who achieve an SVR should receive standard medical care that is recommended for patients who were never infected with HCV.

Among patients with advanced liver fibrosis (ie, Metavir stage F3 or F4) who achieve an SVR, decompensated liver disease (with the exception of hepatocellular carcinoma) rarely develops during follow-up, and overall survival is prolonged. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Patients who have advanced fibrosis or cirrhosis continue to be at risk for development of hepatocellular carcinoma after achieving an SVR, although the risk in these patients is lower than the risk in persistently viremic patients. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Patients with cirrhosis who achieve SVR experience increased survival (compared with patients with cirrhosis who are untreated or in whom treatment fails), but still may be at some risk for hepatocellular carcinoma; thus, they should continue to undergo regular surveillance for hepatocellular carcinoma despite the lowered risk that results after viral eradication. (Bruix, 2011) The risk of hepatocellular carcinoma among patients with advanced fibrosis prior to treatment but who have regression to minimal fibrosis after treatment is not known. In the absence of data to the contrary, such patients remain at some risk for hepatocellular carcinoma and should be monitored at regular intervals for hepatocellular carcinoma. Alpha-fetoprotein (AFP) is considered an inadequate screening test for HCC. (Bruix, 2011)


This is why it is so important to treat people before they advance to F3 and F4 liver damage.
« Last Edit: September 12, 2016, 10:51:20 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!

 


© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.