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Author Topic: Secured medicine! Now what?  (Read 1073 times)

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Offline Frbrazil

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  • Posts: 3
Secured medicine! Now what?
« on: August 21, 2018, 11:05:30 am »
Hello all,
I was diagnosed with HCV in 2014. Recently, I was denied life insurance because of the virus and because my ALT was 659 and my ALS was 180. I’m. It sure what the reason for such extreme elevation, but have been feeling sicker than usual as of late. I have been repeatedly denied treatment, and finally secured Generic Harvoni. My medication is Hepcinat LP (Ledipasvir and Sofosbuvir). I have three 28 pill bottles (12 weeks). I recall my genotype as being 1a. I am treatment naive, and do not have cirrhosis and have never had Hepatitis B.

My research tells me that a 12 week 1 pull per day regimen should be sufficient, but I would like to confirm this. Also, which lab tests should I order and how frequently should I order them?

I’m determined to take matters into my own hands, but need support and advice. Thank you.

Offline Lynn K

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  • Posts: 4,009
  • Get tested, get treated, get cured, fight Hep c!
Re: Secured medicine! Now what?
« Reply #1 on: August 21, 2018, 03:41:59 pm »
You should likely coordinate your treatment with your doctor. The folks here who went the generic route coordinated their on treatment testing, monitoring  and follow up with a doctor.

Take a look at the Harvoni prescribing information sheet:

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

Yes the treatment for those who have never treated before who do not have decompensated (Child score B or C) cirrhosis is 12 weeks. But for those with decompensated cirrhosis treatment should add ribavirin.

Do you have cirrhosis? Have you been followed by a doctor monitoring your condition since you became aware of your infection? Have you been having blood testing either every six months or year including a liver panel, CBC, and chemistry? Do you know your INR/PTT? Are you having abdominal ultrasounds at least annually? Have you had a liver biopsy or Fibroscan or fibrosure to evaluate the amount of fibrosis (scarring) your liver has?

Your ALT and AST seem unusually high for just having hep c have you discussed the cause for these elevations with a doctor? Most of us had ALT/AST elevations just slightly above normal and less then 100.

On my treatment I had CBC and liver functions done monthly. But when I first started taking ribavirin we checked my CBC weekly to monitor for ribavirin induced anemia (low HGB level) but once we dose reduced the ribavirin and my HGB stabilizer I was just tested monthly.

Your doctor may have you do a HCV RNA by PCR test at 4 weeks on treatment to check patient compliance with treatment. Then test for HCV RNA again at EOT to see if you are not detected at that time. But the test that shows you as cured is the 12 week post treatment test for SVR12. If you are not detected at that point you are considered by many medical professionals as cured although some prefer to wait until 24 weeks post to say you are cured.

I urge you to work with a doctor to confirm the status of your liver and your genotype as you seem unsure in order to confirm the correct treatment and duration for you as well as to determine the best on treatment and post treatment testing regimen for you and you individual circumstances. For help and support see your doctor.
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 Frbrazil

  • Member
  • Posts: 3
Re: Secured medicine! Now what?
« Reply #2 on: August 21, 2018, 06:00:52 pm »
I have scheduled an appointment with my doctor and faxed him the labs that the life insurance underwriters considered.  These ALT and ALS numbers are a huge departure from my previous labs, which showed only slightly elevated levels.  I do not know what could cause this. (?)

Just prior to the lab test, I recall my urine and stools being discolored in the same manner as the acute phase of the virus, which I experienced shortly after I contracted it. I have dealt with some fatigue. I'm very worried, and look forward to getting the green light for treatment.

I really appreciate the information.

Thanks

Offline Lynn K

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Re: Secured medicine! Now what?
« Reply #3 on: August 21, 2018, 06:14:31 pm »
You entered ALS do you mean AST and got spell checked?

As far as I am aware ALS is Lou Gehrig’s disease (Amyotrophic lateral sclerosis) and AST is a liver enzyme aspartate aminotransferase also sometimes called SGOT (serum glutamic-oxaloacetic transaminase).

There are many things which can cause elevated liver enzymes ALT AST glad you are working with your doctor. I never had an acute phase.

https://www.mayoclinic.org/symptoms/elevated-liver-enzymes/basics/causes/sym-20050830
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 Frbrazil

  • Member
  • Posts: 3
Re: Secured medicine! Now what?
« Reply #4 on: August 21, 2018, 06:16:11 pm »
Yes! AST indeed.  Thank you. I look forward to learning more.

 


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