New to the battle!

[Nanato6]

So glad i found this forum! i was diagnosed in Aug 16 2018. I was angry, shocked, really feeling awful, so much pain and fatigue, the criteria for exposure and testing is not accurate! I considered myself with no exposure then i started reading the possibilities of blood PRODUCTS! i have it narrowed down to 3 for direct blood product exposure: 1955 Vaccines DPT & Smallpox, 1974 Rhogam shot, 1987 Gamma globulin injection against Hep A exposure, also about 18 lesser exposures like I worked in a nursing home and home health for about 10 years, ears pierced, surgeries dental work etc ..

in my younger years I was the party girl that everyone made fun of because I didn't drink or do drugs..i married the guy who told me he got 'high on life and didn't need drugs'!

i am also a ruptured brain aneurysm survivor (May 2014). i often wondered why i survived the rupture, to be tortured so..i thought it was to help my #3 child through her pregnancy with intracranial hypertension. But..

About the guy i married, he also tested positive on Aug 29 2018 and told all our kids (5) to get checked (still waiting on #2 child to be tested) all neg so far except hubby, he is f4 type 1a. He saw an infectious disease doc, had some blood drawn and will have his meds (mavyret 12 weeks) as soon as the insurance says ok. This is why I survived! He has no symptoms at all! he does take a nap every day he can. His ast and alt are better than mine! He would have never known to get checked.

What about when hubby gave blood in the early 80's and never got a call back about bad blood. Of course they checked it for Hep b but wouldn't non a or b show up at that time?

I have seen a gastro CRNP and will see gastro MD Jan 18 2019! So far I have had liver scan, extensive blood draws, declined a colonoscopy and pray I don't need an endoscopy! I have previously lost my appendix, gallbladder (lost my voice for 2 years due to improper tube down the throat), sneezed and my lung collapsed and then the brain rupture which requires mra every year..so i am not too keen on any extra invasive procedures!

I am 1a, M28V mutation, F2 fibrosis.  I do not know how the meds will affect the vessels in my brain, which include fibromuscular dysplasia (FMD) I am hypersensitive to most meds and only take bp meds.. I use CBD oil for pain and anxiety..

This helps, i'm not so angry, just sad for not being able to do all i could before. i am hopeful the meds will kill this bug. i've already had 4 life extensions! Can i really get one more?

Mom to 5
Nana to 6

[Lynn K]

Hi and welcome! I’m so sorry to hear of all your struggles.

One thing I can speak to is donating blood in the 80’s. I was very likely infected in 1978 tattoo in a GI bar in Germany when I was in the Army in a guys apartment. I did also party a bit at that time as well so one or the other.

I donated blood a couple of times back then in Germany and also when I got back to the states in the early 80’s. That was eventually how I learned I had hep c. I donated in 1989 when they had just approved a blood test for the hep c virus that year. That was the fifth time I donated I believe. Prior to the test for hep c virus being found in 1989 that was one way to get infected was through blood donation.

While not common there is a small risk of sexual transmission of hep c. While the CDC does not recommend barrier protection for long term monogamous couples and I don’t think I can recall someone in a long term relationship having been infected in that way the odds are not zero. But really, that is all kind of moot at this point anyway.

I think you may be a cat and have nine lives because these new meds are very effective at curing most especially those who have no prior treatment without cirrhosis I think your odds are about 99% or better. So in that estimation this would be life number 5 you still have 4 to spare.

Best of luck let us know if you have any questions we can try to help you with.

[Nanato6]

Thank you for your service! And your prompt reply.  I was interested in any info on the mutation. We're both 1a, I asked hubby's dr if it was the virus or me, he wasn't sure,  I'm thinking the virus.  Funny thing he asked how many kids we had,  told us he won't wait to treat hubby, they usually wait 6 mos, he wants us to be treated together and to use a condom! We giggled about that..also what was different after 1964 or 65, that people born after that don't need to be screened? Thanks!

[Lynn K]

Vietnam era veterans are a high risk group as well as boomers. But surely people on the near edge of the demographic should be considered one would think.

Your doctor wants to treat your husband soon because of his F4 fibrosis score which is the highest score possible for liver scarring. Has your doctor discussed the significance of this score with you both? What test did you both have to determine your fibrosis score? Is you husband going to be referred to a hepatologist (liver specialist)?

There are I believe 16 total genotypes 1a, 1b, 2a, 2b, etc genotype 1 either a or b are the most common in the US.

I liken genotypes to say varieties of the flu like swine flu, bird flu etc. Just without the interesting names.

The good news is that with cure of hep c even livers with higher fibrosis scores may have some improvement with time. And certainally no further liver damage from hep c will occur. I assume your husband has stopped all alcohol if he does drink.

Here is some lay person general information about hepatitis C and the liver from the VA

https://www.hepatitis.va.gov/patient/index.asp

[Lynn K]

“Hepatitis C Virus Genotypes

An important variable for all patients with chronic hepatitis C virus (HCV) is the "genotype" of HCV with which they are infected. This is the strain of the virus to which they were exposed when they were infected, often many years prior to their evaluation, and it is determined by a simple blood test. Genotypes of HCV are genetically distinct groups of the virus that have arisen during its evolution.(1) Approximately 75% of Americans with HCV have genotype 1 of the virus (subtypes 1a or 1b), and 20-25% have genotypes 2 or 3, with small numbers of patients infected with genotypes 4, 5, or 6.(2) Most patients with HCV are found to have only one principal genotype, rather than multiple genotypes.(3, 4, 5) Genotype 4 is much more common in Africa than in many other parts of the world, genotype 6 is common in Southeast Asia, and each area of the world has its own distribution of genotypes.”

https://www.hepatitis.va.gov/provider/reviews/genotypes.asp

[Nanato6]

No discussion of the score of fibrosis or any indication yet to see a hepatologist.
we both had the LIVER FIBROSIS, FIBROTEST-ACTITEST PANEL (FIBROTEST)(Q1696)
my other blood tests normal except ALT 53. Hubby was normal except glucose a little high (maybe from BP meds?)

Another question: i have these flareups of pain. lower back for 2 weeks, it came on quick and left just as quick. a month later it was my neck, lasted 6 weeks then bam, gone..now it's the lower back, AGAIN! it was after the first flareup my PCP looked at me and said were gonna do a hep test. is this a common thing with this virus or not?

[andrew j]

Hi Nanato6,

More medical testing?
That looks to be the way forward for you at the moment?

The pain?
I'm not sure - I'm not a Dr ... but I got some serious pain probs because of an [initially undiagnosed] bacterial infection.
Maybe that's something you could look at?

All the best with the next little while.

(The new Hep C meds are usually fairly well tolerated).

A.

(P.S. In case you want to reply - I can only get to a computer 2 or 3 times per week at the moment).

[Lynn K]

Glucose test results are only valid when fasting so if he ate before the test the glucose score means nothing. Only fasting glucose can be used for diagnostic purposes.

I was having liver biopsies every five years after I was diagnosed with hep c in 1990. In October 2014 which was just before I treated with Harvoni Nov 2014 to May 2015 I had a Fibroscan test to check my fibrosis score in case my insurance wanted to confirm my F4 score with something more recent than my 2008 liver biopsy. A Fibroscan is a machine similar to an ultrasound except it kind of makes a thump to determine liver stiffness. Results are about equal to fibrosure for accuracy.

Has you doctor discussed your husband having an upper endoscopy and being immunized against hep A and Hep B if he hasn’t been? As well as having the pneumonia vaccine and making sure he has his flu shot every year. My doctor had me get all that done when I was diagnosed as F4.

AST and ALT are often slightly elevated in hep c. Elevated liver enzymes mean something is bothering your liver but not how much liver damage has occurred or is occurring. Once you are both cured of hep c likely your liver enzymes will return to normal range. Very likely your first blood testing on treatment will show you liver enzymes as normal because you have the virus on the run

Your back pain could be anything I tend to doubt it is hep c related. If your doctor hasn’t said so yet your preferred pain medicine is actually Tylenol just use caution to not exceed the recommended daily dose. Tylenol at recommended dosage and duration (occasional use) is perfectly safe for the liver. Just make sure if you take a multi symptom reliever whether or not it contains Tylenol (acetaminophen). It is so easy to accidently take too much if taking a multi symptom coldmexicine and then additional Tylenol.

I was diagnosed as fibrosis score F4 January 2008 if you have any questions. When is your next doctor visit?

[Nanato6]

Lynn K;
As far as i know we are finished with tests, i have an brain MRA in march which they scheduled at the same time as the gastro doc on Jan 18.. Hubby's A1C was 6.5.
 
i did have a pulsed wave and color flow Doppler of upper abdomen. same as fibroscan? 

the waiting is so long! the fatigue is so awful!

we don't drink or take any meds but vitamins and BP meds. i think hubby will be fine with the antiviral meds and i'm hopeful i'll do ok with them.

the links were informative, thank you!

andrew j: i think maybe inflammation not really infection and it just might all be in my head!

[Lynn K]

The Doppler I am assuming was part of an ultrasound.  On my ultrasound they also do a Doppler where they can make sure that my blood flow is going in the correct direction inside my liver.  I’ve had the Fibroscans done at my doctors office. The machine produces sort of a thump you would feel it. 

Here is a short article from hepmag about Fibroscan

https://www.hepmag.com/blog/fibroscan

[Nanato6]

Update: Hubby got his meds, mavyret and meets with coordinator tomorrow morning. We did get help with the co-pay that was around 3000 per month..

i am still waiting, my app is on Jan 18.

Funny thing, hubby did get and sonogram done last week (Jan 3)and it said No sonographic abnormality.No signs of cirrhosis/fibrosis. No cholelithiasis or sonographic signs of inflammatory change.

This is good but is it Fibrosis Stage F4 which the fibrotest said? Gosh i took good care of him!

we also saw our PCP for a sinus/awful cough thing we had going on. he was quite chatty about the hcv and told us stories how he tried to get more screening done in a rural community..he also told us they not only reused syringes but they reused the needles, hammered them and sharpened them for reuse back in the day!

so i am back to thinking hubby hasn't had this too long if its 15-20 years for damage to show or the tests are just not reliable or accurate or someone made a mistake....maybe it'll be gone on his next blood test! always hopeful!
8/29/18    11/8/18   
HCV RNA QN PCR (IU/mL)
IU/mL
14100000      8770000   
HCV RNA QN PCR (Copies/Ml)
log IU/mL
7.15               6.94

Have a great week!

[Lynn K]

You really can’t diagnose cirrhosis on the basis of ultrasound. That being said there would be indications like my ultrasound said coarsened echotexture consistant with cirrhosis.

I was diagnosed with cirrhosis on my 4th liver biopsy after probably being infected with hep c for thirty years. In general only about 20 % of patients infectedfor20 years will develop cirrhosis it doesn’t happen overnight. So yes he I am guessing may be in the very early stages of cirrhosis. I was diagnosed in Jan 2008 so 11 years ago with early cirrhosis and I am still here to talk about it.

The Fibroscan and fibrosure blood test are reasonably accurate at diagnosis of either little damage or F4 cirrhosis but less so in the middle ranges. But even if he was F3 he would still be treated and followed post treatment the same as F4 and should still take the same precautions like being careful with OTC meds and not drinking any alcohol ever.

Viral load does not relate to severity of liver damage that is or previously occurred nor do liver enzyme tests. But it is optimistic to me that the ulrasound doesn’t detect the structural changes associated with cirrhosis but I would still defer to his fibroscore to determine his liver scarring status.

Is the Mavyret copay coupon fromthe manufacture not available to you?

https://www.mavyret.com/copay-savings-card

“Commercially Insured?
See if you're eligible to pay $5 per month for MAVYRET. Download a MAVYRET Co-pay card and bring it to your pharmacist to verify eligibility.”

Best of luck to you both.

[Nanato6]

He took meds this AM, so far he's 'normal'...he has medicare and aetna hmo supplement, the price was 32,171.16, member cost 13,385.80 plan pays 10,849.95, copay 2,535.85..which is actually less than last month as he missed the phone call to get it (we were on vacation, no phone or internet) we got help through the HealthWell Foundation recommended by the Aetna pharmacy, they approved him the next day up to 30000 for the next 3 months. i was really surprised!

 He met with pharmacist yesterday to go over meds and next steps..blood work in 2 weeks, they gave him 3 month Rx but depending on how he does he may need less..something to do with the discrepancy in the tests..

i called the company that makes mavyret and was told he did not qualify. There was another form from the company that i filled out but the health well answered so quick i didn't need it...So thankful there is help out there!

3 more days until i see the Dr. i still have so many questions! that prolly have no answers!

[Lynn K]

Great news congrats on the funding help. Yeah the manufacture does not provide copay assistance for Medicare recipients unfortunately.

Most people tolerate treatment well mostly a few headaches is the most common side effect and can be helped by keeping properly hydrated the old 8 each 8 ounce glasses of liquids we all should be consuming anyway will help prevent or reduce headaches. Also fluid does not have to be just water even some foods like watermelon have high fluid content

[Nanato6]

Finally got the meds! Started yesterday.

Hubby is almost done and doing really good.he sees Dr next week!
 HCV RNA QN PCR (IU/mL)   <15 IU/mL   
HCV RNA QN PCR (Copies/Ml) <1.18 log IU/mL  4 week blood work. This is good, right?

I still cannot believe how long it has taken. found out in Aug saw CRNP Nurse in Oct, Dr in Jan. they told me i would not have to do anything, they would take care of getting the meds. first they sent the script to the wrong pharmacy, not in my insurance network where it sat for a month. i finally spent 2 days on phone to get it moved. i also had to get the copay help but i knew what to do. then the meds were sent to Dr office and had to wait another week to get app with nurse. i really think they could do better! Mavyret does not help with the copay if you have healthcare subsidy aka obamacare. the pharmacist did not know this. crappy insurance with 6500 copay but i did get a grant to help, so happy and thankful for that!

this is gonna be a long 2 months!

the nurse said i had to drink half my weight in oz and only 8oz of coffee!

so far only a little nausea and headache, it comes and goes. very, very tired..dreaming of playing in the dirt and planting a garden.

  Have a great week!

[Lynn K]

The result looks like the test sensitivity do you see the words “not detected” that would hopefully be his result.

Yeah meds going to wrong pharmacies and other dumb hassles sadly is just a part of this sometimes.

Glad to hear you finally got your meds good luck with treatment!