Author Topic: i just tested positive (Read 22754 times)

bardee · « **on:** March 02, 2016, 06:17:04 pm »

I just found out i have hep c 2b. I have not been to a specialist yet. My liver functions have not shown anything in the past but, my viral load is over 8 million. I am scared.

lporterrn · « **Reply #1 on:** March 02, 2016, 07:17:00 pm »

Hi Bardee. Scared is normal. You came to a good place to help sort out your feelings. It may sound hard to believe, but the viral load doesn't matter, and although it may sound high, truly how high or how low it is doesn't indicate more or less damage. Hep C is curable, and there is an excellent treatment for genotype 2 about to come out at the end of June.

Let us know if you have any specific questions. Feel free to unload your fears here. It gets better.

Scoutdoy · « **Reply #2 on:** March 02, 2016, 10:22:58 pm »

Hey bardee, it's natural to be scared and angry and confused. Luckily in 2016 there is a cure for hep C and as for your viral load mine was 13.9 million and my liver functions were honestly perfect. I have had hep c for 30 years. Don't stress on how you got it because most people do... but it doesn't matter ...you have it...get to a specialist get the medicine and get cured. Feel free to private message me if you have any questions I would be happy to help you. This forum is a great place to communicate with others who have the same disease and can answer most of your questions. good luck

Scout

bardee · « **Reply #3 on:** March 02, 2016, 10:54:22 pm »

Thank you for your replies. I am sure I will be spending a lot of time on this forum in the future and appreciate any help and support.

FutureThinker · « **Reply #4 on:** March 03, 2016, 06:56:12 pm »

Hi bardee and welcome to this forum! I was diagnosed in '11 but just started Harvoni 9 days ago. I remember very well how I felt at the news of having HCV. I believe "knowledge is power", so read everything you can on this disease and that will help you to feel more in control vs. lost. Lots of valuable info on this site, plus others online. My viral load has fluctuated between 15 million and 3 million -- but I remember when I saw the first lab that said 8 million, it sounds very scary!!! So the more you understand about what these numbers mean, the better you can "stay calm and carry on". Don't hesitate to ask questions, many good people here! Take care, FT

Mike · « **Reply #5 on:** March 05, 2016, 04:21:48 pm »

Hi Bardee,

You've found a great place for support, information and feedback.

please feel free to ask any questions you might have. There is no such thing as a dumb questions.

I remember when I was first diagnosed. I was scared, felt like the world was crashing in on me and didn't know how to turn to. I was ashamed that I contracted this virus and had one foot in the grave.

This is all normal.

Please understand that this is the golden age for HCV treatment with cure rates closing in on a 100%! Focus on this and not on the past.

Welcome aboard.

Best wishes, Mike

Philadelphia · « **Reply #6 on:** March 05, 2016, 07:54:06 pm »

Yep, my viral load has varied all over the place, from month to month I think! I had a VL test in Sept 2014 that showed close to 800,000, then in Feb it was 350,000. Nothing had changed, just the numbers.

Keep an eye on developments - there are new treatments coming down the line and you are in the right place at the right time.

bardee · « **Reply #7 on:** March 06, 2016, 11:47:36 am »

I just called my insurance co. blue medicare hmo. He estimated a $10,000 cost for my co-payment for sovaldi. From what i read it is the preferred med for type 2b. Does anyone know if there is any available help for this? Of course, that does not say that authorization will be made. I am afraid I am not a very patient person--I just want this gone! Again thanks for replies from you all.

FutureThinker · « **Reply #8 on:** March 06, 2016, 01:29:16 pm »

It has been said on this forum that "patience and waiting are an art". I understand fully that you "just want this done", don't/didn't we all!! It's devastating news. This is a process you are going to have to go thru to get to the other side, and that's the goal -- SVR. Try to focus on that goal and learn as much as you can. We're with you on this; it is likely going to take some time, but, these days, it is taking less time. Keep us posted!! FT

Philadelphia · « **Reply #9 on:** March 06, 2016, 03:24:51 pm »

I am not from the US so have no understanding of your whacky health care system. I'd be asking around to see if that's a co-pay that is "normal", whatever normal is.

There are other ways to access these drugs if cost is prohibitive I believe. I'm not sure if an appeal is in order but someone here might now. Other people have successfully accessed generics at greatly reduced prices.

Ask around - people on this forum know a lot.

Lynn K · « **Reply #10 on:** March 06, 2016, 08:19:52 pm »

Quote from: bardee on March 06, 2016, 11:47:36 am

Does anyone know if there is any available help for this?

Hi Bardee

Here is some info from support path sovaldi:

Eligible patients may pay no more than $5 per co-pay for SOVALDI

We believe that cost should not be a barrier to receiving treatment. That’s why the makers of SOVALDI offer a co-pay coupon. If you are eligible, you may pay no more than $5 per co-pay.

Please note the following:

You are not eligible if you are enrolled in a government healthcare prescription drug program such as Medicare Part D or Medicaid. This includes if you are in the Medicare Part D coverage gap known as the "donut hole."

The SOVALDI Co-pay Coupon Program will cover the out-of-pocket costs of your SOVALDI prescriptions up to a maximum of 25% of the catalog price of a 12-week regimen of SOVALDI. The offer is valid for 6 months from the time of first redemption. See Terms and Conditions below.

https://www.sovaldi.com/coupons

As you are genotype 2 I assume you are also going to be prescribed ribavirin.

Good luck hope you are approved soon

Coach Mike · « **Reply #11 on:** March 08, 2016, 02:22:30 pm »

Hi B,
Read my posts. There are a lot of them. You can fight and win, but it will take time. Not as long as it used to, but it is still quite a process most of the time. Get an advocate. I highly recommend Brendan Bietry at the Patient Advocate Foundation. He can be a great help.
If you want it "over with", book an appointment on GP2U.com and join the REDEMPTION clinical trials. Initial results are excellent and it's affordable, compared to OEM medications.
About the cheapest quality tx that I am aware of runs around $900 for 12 weeks.
You could probably be rid of HCV by the time you went through the first appeal/denial/appeal/denial/appeal/denial process.
A lot depends on how bad your liver is from a fibrosis standpoint, your insurance company's treatment criteria and how hard your doctor fights for you.
CM

lporterrn · « **Reply #12 on:** March 10, 2016, 09:41:43 am »

Bardee, after you jump through a few hoops, it's likely you will get this treatment at an affordable cost - but the quickest way is to work with an advocate - Mike's suggestion is a great one. The Hep C Careline (PAF) is my favorite - www.hepatitisc.pafcareline.org Call Help4Hep and ask them for assistance: 877 Help 4 Hep (877 435 7443). Mike has contact info for Brendan

Coach Mike · « **Reply #13 on:** March 10, 2016, 09:55:36 am »

This guy will work his butt off for you.

Brendan Bietry
Case Manager, Clinical Team
Patient Advocate Foundation
P.O. Box 635158
San Diego, CA 92163
(800) 532-5274 ext. 2110
(757) 528-4790 efax
brendan.bietry@patientadvocate.org
www.patientadvocate.org

CM

bardee · « **Reply #14 on:** March 20, 2016, 09:34:58 am »

I am still having testing--no results from the scan yet but, my viral load has gone from 8 m to 13904452--what does this mean? getting more scared!

Coach Mike · « **Reply #15 on:** March 20, 2016, 10:41:17 am »

OK.
Viral load fluctuates. The liver enzymes give a more accurate picture of how well your liver is dealing with the virus. I had this crap for nearly 30 years before I found out I was infected. Drank a lot of alcohol over the years. Took all kinds of NSAIDS. Both are liver toxins. Used together, especially in excessive amounts, they can really cause some damage. Like lethal. So, after all those years of infection and abuse, my liver showed mild-moderate fibrosis.
This crap takes a while to cause significant damage in the vast majority of people. Sometimes, it never does. In others, maybe a little quicker.
If you are drinking alcohol, stop. Try to avoid NSAIDS.
This is not a death sentence. Since the DAAs came along, HCV has basically become a viral infection that needs to be treated. The sooner, the better.
So relax (easy to say, hard to do), get the tests done. Those will tell you exactly how your liver is doing and then, plan on how you wish to access tx. If you want the virus gone, like yesterday, and the fact you know you are infected is driving you crazy-you might choose one route. If you are not in a really big hurry, another might work.
At least now, you have options...quite a few really.
Get the results and see what your GI recommends. If they prescribe treatment, get a paper copy for your "records", along with copies of all your lab and test results.
Once you see your doctor, things will be much clearer for you.
Any questions, ask away. We have all been in your place.
CM

bardee · « **Reply #16 on:** March 20, 2016, 06:45:31 pm »

By the way my ast is 20 and my alt is 11---protein is 7.8. Of course I don't know what that means. Does a higher viral load mean you are sicker? Does it say anything about your condition--length of time one has had it, etc. Thank you so much!

Coach Mike · « **Reply #17 on:** March 20, 2016, 07:01:06 pm »

just means at the time of the test, you had "x" number of the virus detected. The good thing is the enzymes. Those stay inside healthy liver cells normally. They get into the blood when the cells are destroyed by something like HCV or alcohol or huge doses of Tylenol etc. My viral load fluctuated from 5 million down to 1.4 million.
See what the fibroscan or fibrosure tests show and see what your doc says.
I'm definitely not qualified to offer medical advice, but this disease takes years and years to damage a liver typically. Your enzymes are very, very good.
Just try to relax, but not with alcohol.
Don't be the least but surprised if your doctor says "Hey, you're not that sick".
CM

Lynn K · « **Reply #18 on:** March 20, 2016, 09:01:40 pm »

There is no relationship between viral load and severity of illness. People can have low viral loads for many years but still have liver damage or high viral loads for years with little damage. My viral load was 2.4 million but I was infected for 37 years. At 30 years of infections was diagnosed with cirrhosis.

Also ALT and AST same thing test results whether high or low have no relation to severity of liver damage elevated liver enzymes only indicate that something is harming your liver.

If you look on your test results there is likely a reference range as different labs may use different scales. But without knowing your labs scale your ALT & AST are well within normal range. Protein is not a test score I look at it is not really an important number in liver disease.

Test results you may want to look at are bilirubin, creatinine, INR (how long it takes your blood to clot) and platelet count. Platelet counts can drop significantly below normal with cirrhosis. I expect all those tests for you are probably fine.

Scoutdoy · « **Reply #19 on:** March 20, 2016, 10:04:32 pm »

Bardee, don't worry about the viral load. Mine was at 13 million also. My liver isn't scarred and treatment was successful.

Scout

Bree · « **Reply #20 on:** March 20, 2016, 10:19:58 pm »

Me too. VL over 13 M. Treatment successful. Just be sure to get 12 weeks.

bardee · « **Reply #21 on:** March 28, 2016, 06:08:10 pm »

well, my liver scan showed no to mild fibrosis. This is good, but I am worried about the insurance company covering it. The treatment would be sovaldi and ribivarin. I cannot afford the 11,000 co-payment. I just called the hep careline and am waiting to hear back from them. fingers crossed

Bree · « **Reply #22 on:** March 28, 2016, 06:10:37 pm »

Quote from: bardee on March 28, 2016, 06:08:10 pm

well, my liver scan showed no to mild fibrosis. This is good, but I am worried about the insurance company covering it. The treatment would be sovaldi and ribivarin. I cannot afford the 11,000 co-payment. I just called the hep careline and am waiting to hear back from them. fingers crossed

Is Harvoni an option? (You can also check the overseas options....)

bardee · « **Reply #23 on:** March 28, 2016, 06:29:04 pm »

Harvoni is not an option--I have type 2b. I wish it was!

Bree · « **Reply #24 on:** March 28, 2016, 06:36:53 pm »

Quote from: bardee on March 28, 2016, 06:29:04 pm

Harvoni is not an option--I have type 2b. I wish it was!

Thanks for letting me know... I missed that somewhere... good luck to you, fingers crossed!

bardee · « **Reply #25 on:** April 24, 2016, 07:13:31 pm »

I have been approved but my co-pay is $3750 for the first month. I do not qualify for help because I had an ira dispersed and it counts as income. I have no damage. i was told there is a new treatment that should be approved within 6 mo. for a much lower price. Trying to decide whether to wait. I just want this gone!

lporterrn · « **Reply #26 on:** April 24, 2016, 09:39:30 pm »

Have you worked with a patient advocate, such as https://hepatitisc.pafcareline.org/ They know ways to get these co-pays down

You can also consider a clinical trial https://www.hepmag.com/basics/hepatitis-c-basics/hepatitis-c-clinical-trials

bardee · « **Reply #27 on:** May 08, 2016, 07:25:47 pm »

I got my medications and after looking at them for 2 days finally started taking them today. This is scary too! I have to go to work tomorrow and hoping for no bad side effects. How long does it usually take for them to appear?

Lynn K · « **Reply #28 on:** May 08, 2016, 07:57:55 pm »

The majority of people have few to no side effects the most common being mild headache. Most here would recommend keeping your fluid up to be properly hydrated seems to help with the headaches

bardee · « **Reply #29 on:** May 08, 2016, 09:39:10 pm »

Thank you for all the info and support!

Lynn K · « **Reply #30 on:** May 08, 2016, 09:43:48 pm »

Sorry I missed you will be taking Sovaldi and Ribavirin. Ribavirin can be a tougher row to hoe. I was on Harvoni for 24 weeks and Ribavirin for 15 of those weeks. I made it through but did need to push through the Ribavirin as I developed anemia. I worked full time and even did a 1 week trip for work to Europe. So it is doable

Good luck

Mugwump · « **Reply #31 on:** May 09, 2016, 02:24:05 am »

Quote from: bardee on March 20, 2016, 09:34:58 am

I am still having testing--no results from the scan yet but, my viral load has gone from 8 m to 13904452--what does this mean? getting more scared!

Fear is normal go by what your liver function tests tell you not what your viral load is currently as others have explained. In a month your viral load can go down to the low millions. It has happened to me over the years.

This is the nature of HCV stress and fear will effect your ability to deal with the disease so you really need something to do other than focus on the disease. I know I would not have made it to cured if I had not learned this important bit of truth early on after I was diagnosed with HCV in 1993!

Please learn this as you deal with the disease daily, you must learn to put the disease in the back of your mind for the sake of sanity and your spirit.

When your immune system kicks in and deals with the latest bout of genetic nastiness happening inside your liver cells you will feel better physically, but stress delays and effects how long it takes to reach an equilibrium where your immune system keeps up with the disease.

It is an absolute imperative to stay physically and mentally active is the best advice that I can give you.

I hope you get treatment soon but if you do not do not despair, it is very rare for HCV to attack suddenly and cause cirrhosis the way HAV and other diseases of the liver can.

It took well over 40 years for my infection to progress to cirrhosis as most likely I was infected in 1969 but could have been infected even before that when I was 6 years old because of gun vaccinations. I was symptomatic of HCV all through my teens so who knows when and how long I actually had HCV. I might have had for 57 years for all I know.

What I can tell you now that I am cured, is that "feeling normal" is something which I am just learning about. For the first time in my life I no longer feel that I have the flu every other month or so!

OOPS I see you are getting treated.

Even so what I said applies equally to treatment. For me staying as active both mentally and physically as possible along with staying well hydrated made the treatment go much better even though I have cirrhosis. IN ESSENCE stop considering yourself as a patient and get impatient with those who do!

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Lynn K · « **Reply #32 on:** May 09, 2016, 06:53:36 pm »

Viral load varies all the time and has no relationship to severity of illness

FutureThinker · « **Reply #33 on:** May 10, 2016, 01:32:39 pm »

Hi Bardee and CONGRATS on getting your meds and starting treatment! Yes, it IS SCARY -- but try not to focus on possible problems that may or may not arise and instead keep your eye on the goal of SVR. Listen to your doctor and do what they suggest; ask any and ALL questions you have to get your mind at ease and keep your stress down. Stay in touch with your doctor and keep the communication lines open. That will help you stay focused on the goal.

Sides are different for everyone and dependent also on which drugs they are taking. I believe there is info on this forum for the combo you are taking, so browse around on it on older posts. It is amazing just how much info has been posted on this forum! Best of luck to you in your new journey and we are here for you. The future is bright! FT

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Author Topic: i just tested positive (Read 22754 times)