Do I still need treatment with no liver damage?

[KY]

I have had HEP C since ~1972. I just got a fibroscan that showed zero liver damage.  My ALT and AST scores are normal: 27 and  23. HCV RNA viral score 132,990; other reading 5.12. The only problem is my White blood cell count is always high ~15.00.  But I do get fatigued and  feel aches and pains in my body at times. My genotype is 1b. Has anyone received treatment with conditions like mine? Thanks

[gnatcatcher]

Welcome, KY. I can't answer your specific question, so I hope someone else will.

You don't say how old you are, but Hep C does tend to become more damaging once a person nears senior citizen status, so your F0 score and normal ALT and AST scores can begin to rise aggressively as you age despite your taking the best possible care of your liver. The fatigue and aches and pains may well be due to the Hep C.

What does your hepatitis specialist recommend? Are you or your doctor concerned that your insurance might not approve treatment yet? In that case, will your doctor follow up with a regular schedule of retesting?

Best wishes,

Gnatty

[KY]

Thanks, Gnatty. I have an appointment with the specialist this week. I am 64 years old, have had HEP C for ~43 years. I just found out about an imaging place where fir $250 anyone can walk off the streets and get a fibroscan. I was thrilled to see my liver was good. My ALT and AST levels were only high in 2010 when I found out I had HEP C. I  have no idea if insurance will cover with low viral load and no liver damage or if really need to put the drugs in my body for a cure. I often wonder if the virus does not cause other problems besides the liver.

[andrew j]

Hi, KY.

Yes - the virus does, or can cause other problems - some of them extremely unpleasant.

It's not the sort of thing you want to leave untreated long-term - and you're already getting into that territory now (as Gnatty suggests).

I'd be very surprised if your specialist doesn't recommend treatment.

S/he will help you with the insurance.

Best wishes,
A.

[gnatcatcher]

Indeed, HCV can cause an assortment of other problems. There is a term for this: Extrahepatic Manifestations (EHMs) of HCV. Here is a link to more information: http://hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf

While it is true that some people have cured HCV without treatment, that typically occurs within the first six months after infection. The fact that you have a viral load this long after infection means your HCV is chronic, not acute. I'm glad you'll be seeing a specialist this week. In case you don't already know, today's medicines are MUCH easier to take and have vastly better cure rates than what was available in 2010. The specialist will fill you in on the recommended treatment for genotype 1b.

[KY]

Thanks everyone for the great help. I am new on the forum and find it comforting to know others have gone before me.

[CureSeeker]

Hi KY,

I would add that even if your test results seem amazing for how long you have had the virus - you still have the ability to infect others.  That alone should be a good reason to aggressively seek treatment and get cured.

As an example, a grandchild could watch grandpa shave in the morning, and then sneak in grandpa's bathroom when no one is looking to mimic the actions of his beloved role model.  Innocent enough.  No malice presented by either party, but if the young one happens nick his skin attempting to remove his imaginary mustache, it is possible he can be exposed and infected too.

Another example could be a roommate, or family member, who accidentally grabs your toothbrush instead of their own...

A rusty nail on a boardwalk - you step on it, and how many others that you don't even know accidentally hit it too...

It's sort of like Mastercard: the possible scenarios for transmission to another are endless - no matter how unlikely they may seem.

Best wishes to you, and welcome to the forum! 

[strangerbynight]

Hi KY,

I would add that even if your test results seem amazing for how long you have had the virus - you still have the ability to infect others.  That alone should be a good reason to aggressively seek treatment and get cured.

As an example, a grandchild could watch grandpa shave in the morning, and then sneak in grandpa's bathroom when no one is looking to mimic the actions of his beloved role model.  Innocent enough.  No malice presented by either party, but if the young one happens nick his skin attempting to remove his imaginary mustache, it is possible he can be exposed and infected too.

Another example could be a roommate, or family member, who accidentally grabs your toothbrush instead of their own...

A rusty nail on a boardwalk - you step on it, and how many others that you don't even know accidentally hit it too...

It's sort of like Mastercard: the possible scenarios for transmission to another are endless - no matter how unlikely they may seem.

Best wishes to you, and welcome to the forum! 

I totally agree with you, i have been living with constant fear of all above scenario for the past 5 months, i wake every day with this fear that i might somehow pass this to my family..please seek for a treatment asap..

[Gator714]

Hi KY:

Yeah, you should get it treated.  I contracted it from a surgery about 30 years ago and the hep C was caught during a check-up 20 some years ago.  It never caused any issues, so I just ignored it.  Finally decided to deal with it this year.  Similar to your case, there was no liver damage (stage 0) and the viral load was low (around 200,000).  Assuming you have main-line insurance (Aetna, Cigna, UHC, etc.), they should approve eight weeks of Harvoni without much trouble.  For "light" cases like ours, without any prior treatment, eight weeks of Harvoni has the same success rate as 12 weeks - like 97% (and costs about $30,000 less).

I did the Harvoni for the eight weeks and there were absolutely no side effects, not any different than taking a vitamin pill; a non-event.  The virus was undetectable by four weeks and I just had it checked at seven weeks post-treatment; all liver functions normal and virus undetectable. 

You really should get it treated, particularly since you have no liver issues now.  I understand that, particularly as we get older, this virus can get very nasty, very fast, and you don't want to go there.

[KY]

Gator714,  thanks so much. You made my day, especially since your previous condition was like mine. I just filled out the consent form for the pharmacy to represent me for Harvoni 8 week treatment. Now I am waiting for the approval from Aetna. I am excited to get started and get rid of this stuff that been in me for over 43 years.

[Gator714]

Hi KY:

You're absolutely doing the right thing.  Even if there are no symptoms, it's still kind of like a little black cloud that follows you around - always in the back of your mind.  Not to mention that, once it becomes active, it's a pretty grisly downhill ride.  An MD family member explained that to me, in very graphic detail, and I realized that treatment was a no-brainer and made an appointment with a liver guy right away.

I also have Aetna and the approval was relatively easy, took maybe a week or ten days.  I anticipated a battle, but that was not the case at all.  Liver guy told me that most people tolerate Harvoni very well, suggested to drink plenty of water.  Said that some people get a mild headache at the beginning of treatment, but I never had any of that. 

[KY]

Great news, especially since Aetna approved your treatment and mine is almost the same with low viral load and no liver damage. Before you took treatment did you feel that the virus caused days when you felt out of it so to speak? Extremely tired with some muscle aches when waking up in the morning?

[andrew j]

They are classic symptoms of chronic-active Hep C - and indicate, again, that you should get treated as soon as possible.

A.

[abacomike]

Thanks everyone for the great help. I am new on the forum and find it comforting to know others have gone before me.

Getting treatment for Hep C is critical - Hep C causes untold harm to not just your liver, but also to other organs and systems.  I took 12 weeks of Harvoni back in June-Sept, 2015, but in Oct. 2015, my virus load was 90,000+ even though the virus was undetectable throughout treatment.

I then went on Veikira Pak with Ribavirin, but unfortunately suffered a heart attach in Nov. 2015.  My doctor feels it was brought on by Ribavirin.  In April, 2016, I was diagnosed with Heptatic Carcinoma (Liver Cancer) caused by the Hep C Virus.  Had a liver resection in Sept 2016, and after weeks in the hospital and in rehab, I finally got home.

My doctor put me on a 12 week course of treatment with Epclusa.  I am finishing my 12th week, but he decided to prescribe another 12 weeks because I had failed 3 treatments in the past and wants to do everything he can to prevent the Hep C virus from recurring.  So, my insurance company approved another 12 weeks a few days ago so I will be taking Epclusa for another 12 weeks.

Prior to my starting Epclusa, my viral count was about 500,000 (9 weeks ago).  Virus was undetectable after 3 weeks and again after 8 weeks.  I am having another blood test done this coming Thursday, and suspect undetectable virus once again.

My point here is that Hep C eventually causing not just liver damage, but can also cause cancer, which happened to me.  I was lucky that I found a liver surgeon on the transplant team at one of the big hospitals here in Florida who resected my liver and removed 1 large malignant tumor and 2 smaller malignant tumors.  So, get treated ASAP so you won't end up like I did. 

Good luck!

[Mimi]

hi, i have had hep c geno 1b for over 23 years. my liver is good, all tests very good. viral load just before treatment 114,000. have just 5 days of a 12 week treatment left. i was given the viekira pak with ribaviri , not pleasant but very doable. i am now undetected and the relief is overwhelming  it really goes very fast and it is just a couple of weeks. good luck!

[KY]

Thanks, Mimi. I just received news today that I have been approved for 8 weeks of Harvoni. Doc thinks eight weeks should cure me since I do not have liver damage. I am so excited to begin and rid my body of this virus. Gilead will wave the co-pay of over $7,000 so I only have to pay $5.00 co-pay. Awesome.

[Mimi]

That's great news! Wish you all the best 

[KimInTheForest]

Thanks, Mimi. I just received news today that I have been approved for 8 weeks of Harvoni. Doc thinks eight weeks should cure me since I do not have liver damage. I am so excited to begin and rid my body of this virus. Gilead will wave the co-pay of over $7,000 so I only have to pay $5.00 co-pay. Awesome.

Fantastic news, KY! Good luck to you.

kim

[Gator714]

Hi KY:

Congratulations, glad to hear that the approval went so well! 

[KY]

Took my first pill today. So far, no side effects. In fact, I went to the gym and feel really good with lots of energy.