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Post Info TOPIC: New here, many questions
Kellie


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RE: New here, many questions
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hi candace, happy new year and welcome!

I've heard the "it's dormant" remark from several friends that have had the virus also. their doctor's seem to think if the alt and ast are semi normal the virus isn't doing any damage. my former dr. said this to me also over the last 12 years.

this is a seriously flawed way of thinking about this disease. the damage goes on quietly throughout the body over time from being in a constant state of inflammation.

it's not only the liver that is being affected. current science  has just begun to determine the real effects of this disease.

yeppers I see alot of denial from my hcv + friends who've been told by their drs. it's ok and not to worry.

i think this way of thinking by dr.s will eventually fade out as older drs are being replaced by the new ones.

i encourage you to be your husbands health advocate and look into getting him treated.

end stage liver disease is a particularly nasty and drawn out affair.

sorry for the seriousness of the message but theres no need to have to live with this virus anymore with the new easier treatments.

welcome again and keep posting. there's lots of great folks here who know the straight facts.



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HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!
CandaceV


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Thanks for the replies.  I'll be back on Friday when I get a copy of the tests so I can be accurate on what exactly he had and the results.

Happy New Year to you all.

Candace



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mallani


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Hi Candace,

Welcome to the Forum. As Matt said, I don't understand the 'it's dormant' remark. As the ALT is elevated, the virus is not dormant. The test you refer to is almost certainly the Viral Load test, and this number is vital. Also, it's impossible to know whether hubby has liver damage without a biopsy. An Ultrasound will not show this. Of course, he may prefer to do nothing, and that's his choice. Chronic HepC is a progressive disease, and sooner or later, it may catch up with him. If you could post his Genotype and Viral Load, we could give better advice. Good luck.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Matt Chris


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Hi Candace

Welcome to the forum for you and your hubby, with all that you have indicated and the other members input, I would say one of the most important questions I would get clarification on is, what does your doctor mean by "it's dormant" it could answer the important concerns that you are expressing. Just a thought

matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Tig


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Hi Candace,

Welcome to the forum! I'm glad you've joined us and hope you stay around! I'm impressed that you're researching and educating yourself in spite of your husband's reluctance. If we work together perhaps you can convince him that pursuing treatment is worthwhile and well worth his time. Even though he has lived with the virus for 40 years without severe problems from it, it's a documented fact that the damage from HCV has a tendency to get worse as the years increase, particularly after 20-30 of them. Some people can go their lifetime without significant liver damage but without the tests to determine that he won't know until a problem presents itself. A few tests that are readily available in the USA will provide him with that information. Liver Function tests, an HCV RNA Quantitative Viral Load and either a biopsy or Fibroscan will give him some pretty accurate indications of his real liver condition. Look here: http://hepcfriends.activeboard.com/t56092901/test-results-explained/ Since he already knows he is positive for the antibodies, it would be in his best interest to find out now if his own body eliminated the virus during the "acute" phase of the infection process. Unfortunately that doesn't happen as often as we would like and the majority of cases go on to what is called the "Chronic" phase. It can lie silent for years, decades and then start it's damaging process. Not only does it harm the liver but most other body systems and functions can be negatively impacted. So I would try to get him in for those tests, just for the sake of knowledge. That might be the thing that convinces him to move forward with treatment. The new treatments that are out and soon to be out can put an end to HCV in 12 to 24 weeks!! If insurance isn't available, their are programs offered by the pharmaceutical companies that reduce the cost or eliminate it. There are also trials that are offered by these same companies at no cost while they are in the investigative phase of development. You can check the website: http://www.clinicaltrials.gov/ , there is information posted there listing all of the current trials offered by these companies and how to apply. Check it out, it's worth a look.

Be sure to use the Search function at the top of each page. There is an abundance of good, accurate information here on the forum and also info on links around the web that will help you with your research. He sounds like he's had quite a number of health problems along the way and has proactively beaten them through persistence and desire. This is no different. There are stories upon stories of people that were quite ill and once they stopped the virus' attack on their body, they began to heal and have never felt better. So often they rid themselves of symptoms they didn't realize were even associated with the hepatitis. 

I wish you the best of luck and applaud you for your interest and effort to help you both. It's worthwhile and if we can help you, just let us know. There are a lot of very educated, friendly people here that enjoy the opportunity to help and support anyone searching for it. I'm glad you found us! Keep in touch and Happy New Year!!

Tig



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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CandaceV


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Hi Dustbear,

He had the test that shows reactive to Hep C, and the test that shows whether the virus is still in his body, which was positive.  I don't have a copy yet, so I don't know what that test was called.  He had an ultrasound and we're waiting for results.

The reason I'm here is to learn, because he has no interest whatsoever.  He says, "I've lived 40 years with it, I'm not going to worry about it or spend more money on more doctors."  He just doesn't want to participate.  Denial, I guess, since it took 5 months of pleading for him to have the second test and an ultrasound.  He prefers ignorant bliss.

Thanks for your reply.

Candace



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dustbear


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Hi Candace:

Welcome to the forum. Many friends here to help answer your questions, so you've found the right place.

Your hubby tested positive and dormant. There are a couple of tests: one is the antibody test, the other HCV PCR test.
If he was exposed to the virus that would show positive in the antibody test.
If he has HepC it would reflect in the HCV PCR test.

A biopsy of the liver will show any physical damage of the liver.






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Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"
CandaceV


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Hi,

My name is Candace and my husband has Hep C.  He's 59 and has had it for probably 40 years.  He was tested for it in July and it was positive.  It took 5 months for me to get him back to the doctor for the test to determine if it was chronic or not.  He was tested for that last week, the doctor called today and said the virus is dormant, and there's no indication of liver destruction going on.

Background - very healthy most of his life, heavy drinker in his 20's, slowed way down in his 30's and 40's, doesn't drink at all now.  His chronic conditions are pseudogout in his left knee, treated since August with colchicine.  He needs a knee replacement.

Smoked for many years, stopped about 12 years ago.  He was diagnosed with COPD 20 years ago, but has no symptoms and on no meds for that.  He smokes MJ, it helps tremendously with his severe ADHD.  Lungs, not so much.

His ALT has been slightly high for many years, normal being 40, his around 50.  Started taking milk thistle and it dropped to 41 as of last week.

He takes fish oil, weight is normal.  He was hospitalized for the first time last summer for the pseudogout, the doctors thought he was wasting away, but he's always looked like he's on his last leg - he never really developed much muscle.  In other words, he's scrawny.

He's had spider angiomas on his back, chest and upper arms since a child, way before he was exposed.

I look forward to reading and learning.  I'll see if I can find answers to my questions.



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