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Hep C Discussion Forum -> General Discussion -> Just diagnosed - what can I expect?
Post Info TOPIC: Just diagnosed - what can I expect?
5-1-18


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RE: Just diagnosed - what can I expect?
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beetree, yep, a viral load and ultra sound of your abdomin would show a lot and let you know more.

it's good to see the condition of your liver; and gallbladder since you have pain.

 

many of us did the old tx too so kudos to your mom for going thru that. the new daa's are an easy cure.

good luck, let us know how the tests come out

5



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0
Beetree


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Thanks all. Yep I've only had the antibody test so far.
It is Hep C
Mother has the same set of events, except she was treated years ago (interferon back then, not nice)
She's 90, and does get compensation. I think it's of the order of £1500 a month, and it's the max.
Frankly, it would make little difference to anything, as my wife had a decent job. Houses around here are £600,000, so moving to a single storey house/bungalow would cost an extra few hundred k.
Her neuropathy and rashes are a problem for her.

I just can't believe that none of the doctors - including my neice, who inherited the same blood condition , and is a consultant doctor looking after old people, even queried it. But on about the second page of Googling I found that HepC tests can get it wrong.

My wife reminds me that I have had various abdominal pains which nobody thought was anything much - could have been liver I suppose.

I got to the stage where I thought I must just be a hypochondriac!.

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5-1-18


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welcome beetree, 

i hope you get to take tx soon and be cured. 

5



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0
Tig


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Hi BT,

Welcome to the forum, we’re glad you’re here!

Many of your symptoms and complaints do sound like many of the complications we have experienced with HCV. It’s hard to believe after so many years of packing it around, that Hep C was responsible. That’s why testing needs to be required and routine, across the globe. People are suffering from a disease that is easily cured, finally. 

It sounds like you were only tested for the Hep C antibody. Anyone that has or has had HCV, will be antibody positive for life. Once a new antibody test shows positive, the patient is required to go through a second test, the PCR RNA. If you have an active infection, the test will show a viral load (quantification). If a person has had the disease and cleared it on their own, or was successfully treated, the viral load will be negative. You need that test to confirm it either way.

Once successfully treated, many of your symptoms and complaints can improve. It takes longer for some than others, but improvements do happen. My painful joints really improved, as did the fatigue. I’m 63, so a lot of those things are coming on their own! The amount of discomfort did improve, greatly. Of course your liver will cease to deteriorate as a result of a chronic infection, so that’s a benefit, regardless of anything else! Big plus!

 

 

 

 



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Tig

68yo 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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Observer


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welcome Beetree

I dont know if they had HCV testing available in 1982...in Canada when the blood service/ government finally decided to compensate victims of our tainted blood scandal..they put in a loophole/window that tried to only compensate people from 1986-199? with the bull sh!t excuse that there was no test before that... perhaps it was hep B they tested you for? That could explain the negative results..

The rest of us (1983 victim here) kept fighting and after many years and tears and pain and deaths...we all got a bit...not enough for a ruined life.

amyhoo....your symptoms are almost all things I suffered terribly with ...and for me...all of them are less...not gone but remarkably less

and treatment is a breeze compared to the early days treatment so I would say go for it when you can. 



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
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4 years.... successful dragon slayer 
Iris Dragonfly


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Hi! and welcome to the board. We have some amazing folks here who are understanding and helpful. (I probably don't qualify for either of those!, LoL) but seriously, Your description of symptoms took me right back disbelief Sorry to hear of the aches and pains, it really sucks.

I'm a little confused but hopefully Tig will be along to clarify, but did you get a PCR RNA test? There is one that qualifies and one that quantifies. The qualifying one might say that you have had the virus, but it had cleared the quantity one will tell if it is active and how much it has replicated in your system.

Hope this crazy virus thing chills soon, you don't need that worry on top of HCV, but until you know more hang in there, and Yeah, there is some hope I actually noticed the brain fog to be less troublesome but I'm just over one year post treatment, I'm hoping for more improvements!

Best wishes, Iris



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60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
Beetree


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HI everyone.

I'm 63, male, overweight. In the UK.

No risky behaviors.  Little alcohol

Mild blood condition (Von Willebrands) so

evidently contracted HCV in 1980 from blood products. (Cryoprecipitate)

1981, HCV test "inconclusive" (uh?)
1982. HCV test negative.
Someone new at the hospital where I had the blood products in 1980 (while I was a postgraduate) decided to chase everyone up to see if they'd had an HCV test.
I thought little of it - I'd moved away so they wouldn't have known, but I'd had my negative test. I suggested it was added to some other blood tests I was having, as an afterthought.

I've had 40 years of  symptoms which I now find can be attributable to HCV. Mostly chronic fatigue, neuropathy - pain and numbness in legs/feet and arms/hands, joint pain, muscle pain, skin problems which I gather may be from cryoglobulinaemia, leg edema, chronic depression and total sexual dysfunction (hence no kids). Extended bouts of itchy skin and headaches. "Brain fog" has lost me jobs such that I've had to drop two careers and wound up working part time, self employed. My legs are now too painful to walk more than about 100 meters. I sleep poorly because of aches and pains from the neuropathy, always waking with pain and pins & needles all over.

I've been tested for several things so I probably don't have liver damage, as it would surely have shown up on something. It's surprising that no doctor has ever queried HCV. I've presented with all the symptoms at various times, only to be old there's nothing showing on blood tests, so it can't be anything serious. When I was itching all over, I was told there was nothing which caused it.

 

I haven't had the blood test for the live virus and genotype yet.  As we're peaking for Covid 19 it will be a bit delayed. From the list above it seems likely that I'm not one of the 20% to have cleared it and it's still around.

I realise that modern drugs are likely to clear it, but my question is, which  of the above symptoms can I expect to improve for the remaining years of my life?

Thanks for reading.



-- Edited by Beetree on Monday 30th of March 2020 12:07:59 AM

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