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Author Topic: New here and urgently need advice  (Read 3727 times)

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Offline WorriedO

  • Member
  • Posts: 5
New here and urgently need advice
« on: March 11, 2018, 10:48:46 am »
Hello Everyone,

Recently, a free clinic that I was attending had me test for hep c and I have a HCV/ RNA of 125,000 IU/L. I do have symptoms of fatigue, digestive problems, joint pain.

Currently, I don't have health insurance, but I am looking into getting one as soon as possible.

I would appreciate if anyone can provide any advice.

- What would be the tests which should be done,

- How costly it is without insurance?

- Would I have trouble getting a health insurance?

- Would the health insurance cover for tests and treatment?

_ how effective is the treatment in other (lower costs) countries?

Your advice is highly appreciated since I am a little worried and I am trying to determine what would be the best course of action

Thank you All and wish you all the best

O
Probably contracted HCV around mid 90s
On March 2018, Tests were:
HCV/ RNA: 125,000 IU/L
Geno type: 4
AST: 69
ALT: 143
FIBROSIS SCORE: 0.73
FIBROSIS STAGE: F3/F4
ACT SCORE: 0.81
ACT GRADE: A3

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: New here and urgently need advice
« Reply #1 on: March 11, 2018, 04:23:24 pm »
O, you should be able to get answers to your questions on a weekday from the Patient Advocate Foundation's Hepatitis C CareLine (800-532-5274 or http://hepatitisc.pafcareline.org). They have worked wonders for others here on the Hep Forums. Also, several of the manufacturers of current HCV treatments will pick up most of the prescription cost for people who need the financial help, so once you know which treatment you'll be on, you'll be able to check whether its manufacturer offers a program for which you qualify. (In 2015, I ended up paying only $15 for 12 weeks of Harvoni.)

Since you already have a viral load result, other labs are a liver panel blood test and some measurement of your fibrosis level: these days, instead of a biopsy, people are given either a blood test like the FibroSure or a special ultrasound called a FibroScan. Costs for anything medical vary greatly; unfortunately, it's the person without any insurance who is charged the "sticker price" (insurance companies get much better deals). It's currently still illegal for an insurance company to deny someone insurance because of a pre-existing condition, but how much the insurance will cost depends on where you live.

There are people here who have been cured using generics purchased from out of the country, but the Patient Advocate Foundation's Hepatitis C CareLine and financial help from the manufacturer may make it unnecessary for you to go that route.

Best wishes,

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 3,776
  • Get tested, get treated, get cured, fight Hep c!
Re: New here and urgently need advice
« Reply #2 on: March 11, 2018, 04:31:19 pm »
Ok so first take a breath and exhale hep c is not a medical emergency. Generally it takes decades if ever for hep c to cause liver damage. Tiredness is a common complaint for people with chronic hep c infection. Digestive problems not so much of a symptom that could be so many things including stress induced. Joint pain might be a symptom or maybe not.

I can’t answer all your questions but will try to answer as best I can. 

- What would be the tests which should be done
Your doctor would likely order a genotype test to find out which specific variant of hep c you have to determine which treatment is best for you there are many treatments available. Also they would likely order a liver enzyme test. This looks for several enzymes produced by the liver if it is being injured by something. Usually those with hep c will have liver enzyme tests slghtly above normal range. Your doctor may also have you have a liver ultrasound to learn more about the health of your liver and either a fibrosure blood test or Fibroscan test similar to an ultrasound. Either the Fibroscan or Fibrosure will be able to determine how much liver damage you have if any.

- How costly it is without insurance?
I don’t really know I assume the blood tests are relatively inexpensive. The ultrasound I have no idea a hundred maybe, maybe more. Fibrosure blood test and Fibroscan I have no idea

As to treatment costs as an example Harvoni costs $1125 per pill. Generally treatment is 12 weeks but can be as few as 8 taking one pill a day. So a 12 week treatment with Harvoni would cost out of pocket about $94,500.00 Prices are lower for some of the other newer meds but it all depends on what is the correct treatment for your genotype and other factors like if you have a lot of liver damage.

- Would I have trouble getting a health insurance?
If you are in the US the Affordable Care Act (ACA) aka Obama care has no preexisting medical exclusions. That was one of the purposes of the ACA.

- Would the health insurance cover for tests and treatment?
Likely yes

_ how effective is the treatment in other (lower costs) countries?
In other countries there are generic forms of Harvoni available and maybe other meds I haven't followed all the details on this. I have seen others talking about fix hep c website about how to obtain meds from overseas maybe $1000/month I think. The generic forms are equally effective to the non generic forms. But you still will need to know more about what a doctor would suggest as possible treatments depending on your genotype and your general health.

Here is a link to the AASLD (American Association for the Study of Liver Diseases) treatment guidelines for more information about treatment options.

https://www.hcvguidelines.org

Just to add unless you have had hep c for decades you likely have little to no liver damage. I was being followed closely after I was diagnosed with hep c back in 1990. I was probably infected for 30 years when I was diagnosed with cirrhosis in 2008. Many here were infected as long as me and don’t have cirrhosis the majority have almost no liver damage.

One suggestion is if you drink, stop at least until you can get this all sorted out. If you use drugs you may be denied treatment by insurance for hep c because the odds of reinfection are very high. So if you do use drugs especially IV drugs get clean as soon as you can. I have heard some insurance has issues even with marijuana. So keep that in mind as well.

Best of luck. I am sure others with more info about costs and getting meds overseas will chime in soon.
« Last Edit: March 11, 2018, 04:36:01 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 WorriedO

  • Member
  • Posts: 5
Re: New here and urgently need advice
« Reply #3 on: March 11, 2018, 08:50:26 pm »
Gnatcatcher and Lynn K,
Thank you so much for your responses.
Most probably I got infected somewhere around mid 90s, so I probably had it in my system for more than two decades. For two decades now, I don't drink any alcohol, don't use any drugs. The two things I overuse are Nuts and Coffee.
I am in Northern Virginia. I think the best route to pursue is to call the hep C carline gnatcatcher provided first thing in the morning and see what they say, then, most probably afterwords, for me to get health insurance and find a specialist that will have me do all the needed tests.
Thank you again for your valuable advice. I really appreciate it
Probably contracted HCV around mid 90s
On March 2018, Tests were:
HCV/ RNA: 125,000 IU/L
Geno type: 4
AST: 69
ALT: 143
FIBROSIS SCORE: 0.73
FIBROSIS STAGE: F3/F4
ACT SCORE: 0.81
ACT GRADE: A3

Offline WorriedO

  • Member
  • Posts: 5
Re: New here and urgently need advice
« Reply #4 on: March 29, 2018, 05:13:21 pm »
Hello All,
I just got some more tests done:
Geno type: 4
AST 69
ALT 143

Still pending fibrotest/actitest panel

Any insight is highly appreciated
Probably contracted HCV around mid 90s
On March 2018, Tests were:
HCV/ RNA: 125,000 IU/L
Geno type: 4
AST: 69
ALT: 143
FIBROSIS SCORE: 0.73
FIBROSIS STAGE: F3/F4
ACT SCORE: 0.81
ACT GRADE: A3

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: New here and urgently need advice
« Reply #5 on: March 29, 2018, 08:22:41 pm »
O, you're making good progress on the testing front. Is a doctor ordering your tests for you? Were you able to line up insurance or financial help?

Once you have the fibrotest result, you'll know whether you do or don't have cirrhosis, and you can go back to the web site Lynn recommended and head directly to the place for genotype 4:
https://www.hcvguidelines.org/treatment-naive/gt4
Click on one of the two links depending on whether your F score is F0 - F3 ("Without Cirrhosis") or F4. "Treatment-naive" just means you haven't been treated for hep C before.

This web site is what the doctors check to decide on the best treatment options for a particular patient. Unfortunately, the site doesn't use brand names: the fourth option on both lists (ledipasvir and sofosbuvir) happens to be Harvoni (which is what I took), but I wouldn't know the other brand names without Googling the scientific names. Once you figure out the brand name, you can go to its web site and see if the manufacturer offers a financial subsidy.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 3,776
  • Get tested, get treated, get cured, fight Hep c!
Re: New here and urgently need advice
« Reply #6 on: March 29, 2018, 08:24:54 pm »
You likely have little to no liver damage at this point since you were not infected for that long and don’t drink. Even if you do score as F1 or F2 and even F3 once cured your fibrosis will very likely improve with time.

Other than that your doctor needs to prescribe treatment appropriate for Genotype 4.

The AASLD (American Association for the Study of Liver Diseases) currently recommends for people never treated before who do not have F4 cirrhosis either 8 weeks of Mavyret, 12 weeks of Epclusa, 12 weeks of Zepatier, or 12 weeks of Harvoni. All have had good results treating Genotype 4 hep C and all are well tolerated by most patients.
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 gnatcatcher

  • Member
  • Posts: 1,372
Re: New here and urgently need advice
« Reply #7 on: March 29, 2018, 08:27:55 pm »
O, thanks to Lynn, you now know all the brand names on that page I cited.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 3,776
  • Get tested, get treated, get cured, fight Hep c!
Re: New here and urgently need advice
« Reply #8 on: March 29, 2018, 08:31:49 pm »
Yeah I was looking all that up while you posted lol great job Gnatty!
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 WorriedO

  • Member
  • Posts: 5
Re: New here and urgently need advice
« Reply #9 on: May 09, 2018, 07:23:13 am »
HI ALL,
Sorry for the absence, I was trying to figure out what to do.
Last month I got the Fibro test results.
FIBROSIS SCORE: 0.73
FIBROSIS STAGE: F3/F4
ACT SCORE: 0.81
ACT GRADE: A3

Obviously, it freaked me out, and I still am. I am getting to many symptoms (nausea, shaking, dizziness, disoriented, loss of appetite, fullness/discomfort on upper right abdomen. I sense that my liver is enlarged!
The free clinic which I am attending arranged an appointment with a GI specialist who recommended Epclusa and advised me to try Milk Thistle. I tried the Milk Thistle last week (as well as Dandilion root tea) and I am not sure whether it helped or not.
Luckily, yesterday, the clinic called me and said that they have received my first 28 pills of Eplcusa from Gilead, and I should be picking it up today, in a couple of hours.
I am so excited to start the medication, I am worried though about the milk thistle and dandelion root that I have been taking for the last week, would it interfere with the Epclusa?

Thank you all for your support
Probably contracted HCV around mid 90s
On March 2018, Tests were:
HCV/ RNA: 125,000 IU/L
Geno type: 4
AST: 69
ALT: 143
FIBROSIS SCORE: 0.73
FIBROSIS STAGE: F3/F4
ACT SCORE: 0.81
ACT GRADE: A3

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 3,776
  • Get tested, get treated, get cured, fight Hep c!
Re: New here and urgently need advice
« Reply #10 on: May 09, 2018, 01:14:23 pm »
Most of us decided to not take any thing we don’t have to during treatment to avoid any risk of inter fearing with the hep c meds. You should discuss with your doctor all medicines you are taking including non prescription to get their opinion.

I know a lot of people try milk thistle and other things you can buy at the health food store. The clinical studies have not found evidence of efficacy in healing of liver damage. Personally I don’t subscribe to their use. 

The best thing you can do for your liver is eat a normal healthy diet like the heart smart diet, if overweight lose some weight, and as able get some exercise. Also keep properly hydrated.

I was diagnosed as F4 aka cirrhosis 10.5 years ago and am fine. I did have esophageal varicies found with upper endoscopy that needed banding back in 2012 and also have some ascities and lower leg edema but non of the symptoms you describe which do sound a little like anxiety more than anything which is totally understandable with all this news about your health.

Best of luck your will do fine and you will be cured.
« Last Edit: May 09, 2018, 01:23:10 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 KimInTheForest

  • Member
  • Posts: 1,878
  • Believe in yourself
Re: New here and urgently need advice
« Reply #11 on: May 12, 2018, 12:14:37 am »
Congrats on getting set up to start treatment! I am sure you will do fine on it. I will say that several of the symptoms you cite are exactly the symptoms I was plagued with for 3 years, right before my Hep C was diagnosed in 1995. In fact, those symptoms are what led me to keep going back to doctors until I was diagnosed. They were: nausea, loss of appetite, dizziness (like vertigo almost), fatigue, some joint pain (the only time ever in my life for joint pain), and liver area discomfort and soreness. And they were all Hep C symptoms as far as I am concerned. I sometimes could not eat for days at a time because of the nausea.

As soon as I was diagnosed I began researching online like crazy (which was possible even back in 1995). I changed my diet very quickly, added more exercise, did everything I could to support my liver. And those symptoms I had struggled with for 3 years (1992-1995) disappeared within the first week after my diagnosis. So I am quite sure they were caused by my chronic Hep C infection, which I probably had since 1970.

I finally treated and was cured in 2015, when the new drugs became available.

Good luck to you. And stay well hydrated on treatment. That helps reduce the most common side effects.

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline WorriedO

  • Member
  • Posts: 5
Re: New here and urgently need advice
« Reply #12 on: May 15, 2018, 07:44:26 am »
Lynn and Kim, Thank you so much for your support and the information you provided.
I just got my seventh pill of Epclusa couple of hours ago. So far I didn't notice troubling side effects  except for headache the last two days, .... and wanting to sleep like 20 hrs/day.
I will keep you posted
Thank you
Probably contracted HCV around mid 90s
On March 2018, Tests were:
HCV/ RNA: 125,000 IU/L
Geno type: 4
AST: 69
ALT: 143
FIBROSIS SCORE: 0.73
FIBROSIS STAGE: F3/F4
ACT SCORE: 0.81
ACT GRADE: A3

Offline KimInTheForest

  • Member
  • Posts: 1,878
  • Believe in yourself
Re: New here and urgently need advice
« Reply #13 on: May 15, 2018, 03:21:54 pm »
Lynn and Kim, Thank you so much for your support and the information you provided.
I just got my seventh pill of Epclusa couple of hours ago. So far I didn't notice troubling side effects  except for headache the last two days, .... and wanting to sleep like 20 hrs/day.
I will keep you posted
Thank you

That's great to hear! Headache is a side effect that very commonly improves for people upon drinking a glass of water (i.e., it's often hydration-related on these treatments).

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 3,776
  • Get tested, get treated, get cured, fight Hep c!
Re: New here and urgently need advice
« Reply #14 on: May 15, 2018, 08:09:24 pm »
Glad to hear you are doing well as Kim suggests keeping properly hydrated seems to help to ward off headaches. Also you can’t take tylenol if desired just don’t exceed the max daily dose.
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!

 


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