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Author Topic: Tested positive a couple years ago, now seeking treatment. NEED ADVICE  (Read 1936 times)

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Offline Sober4Today

  • Newbie
  • Posts: 2
New here.
I tested positive for Hep C nearly 2 years ago or so. I know nothing other than my enzymes were up and that I had hep c. They were actually testing me for other things since I had just sobered up off an IV heroin/meth addiction.

I wasn't able to get any treatment bc I didn't have health insurance but I wasn't indigent anymore either. But I now have BCBS through my employer so I can go see a DR. I just don't know how to get things rolling here. I don't even have a PCP yet. There's a Hepatologist in the town where I live.
So I guess my question is is 1) how do I get things moving, 2) what measures can I be taking right now to help prevent more liver damage, 3) do the new medications really work and will I get sick on them?

I've been told that I won't experience symptoms for years but I have noticed a severe drop in energy and even in libido the past 1 1/2 years. I've read hep can even testosterone levels.

Offline Mugwump

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  • Posts: 751
  • My number of posts means nothing, piscor ergo sum!
New here.
I tested positive for Hep C nearly 2 years ago or so. I know nothing other than my enzymes were up and that I had hep c. They were actually testing me for other things since I had just sobered up off an IV heroin/meth addiction.

I wasn't able to get any treatment bc I didn't have health insurance but I wasn't indigent anymore either. But I now have BCBS through my employer so I can go see a DR. I just don't know how to get things rolling here. I don't even have a PCP yet. There's a Hepatologist in the town where I live.
So I guess my question is is 1) how do I get things moving, 2) what measures can I be taking right now to help prevent more liver damage, 3) do the new medications really work and will I get sick on them?

I've been told that I won't experience symptoms for years but I have noticed a severe drop in energy and even in libido the past 1 1/2 years. I've read hep can even testosterone levels.
Firstly, how well your liver is working currently is what any GP level doctor can and should do, no need to see a specialist quite yet. If your liver enzymes indicate that the disease is progressing slowly then take your time if not then the sooner you get to a specialist clinic the better. However many GPs are now quite capable of handling HCV because the treatment has become quite simple and the pre treatment test protocol is finally becoming standardized.

Because you have a confirmed infection a genotype and PCR by RNA test to ascertain the viral load count in the blood stream comes next. If your infection has not cleared naturally, which has been know to occur but is rare: then what follows is the treatment.

As I am sure many here will tell you try not to borrow trouble by worrying about whether or not every ache and pain is being caused by HCV. The real problems are what it is doing to the liver and how much damage has been done.

Before any treatment decisions can be made the genotype and level of liver damage done by the disease need to be a known factor.
Don't be afraid to ask questions of your doctors, especially if they do not call for a complete blood count, an abdominal ultrasound (to rule out the other problems HCV can cause like liver cancer), a genotype with viral load test and a full liver panel. These tests are absolutely necessary and if are not done then the doctor cannot be certain of which treatment option(s) are best for you.

CheersEric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,256
  • Get tested, get treated, get cured, fight Hep c!
Eric has given you some great advice but just wanted to address your specific questions

1) how do I get things moving?

As Eric said see your regular doctor they should be able to handle your case if not they may decide to refer you to an infectious disease specialist or gastroenterologist. I know my insurance requires me to have a referral from my general practice doctor before I can see a specialist. Your doctor will order tests to find out your genotype to know what is the best treatment for you. As Eric said they will also test you with HCV RNA by PCR to know your viral load. And other tests to see if you have any liver damage.

2) what measures can I be taking right now to help prevent more liver damage?

Don’t drink alcohol and use caution with Tylenol don’t take more than the recommended daily dose and know that many combo medicines have Tylenol as an ingredient making it easier to accidently take too much. If you are overweight try to get to a healthy weight as having excess body fat can accumulate in the liver and just fatty liver by itself can cause liver damage.

3) do the new medications really work and will I get sick on them?

The new meds are highly effective at about 98% or better for those who don’t have liver cirrhosis and have had no prior treatment. A little less effective for those with cirrhosis who have been treated previously. But even for someone like me I had 4 prior treatments, three with the old interferon based treatment that I had no response at all using plus having liver cirrhosis at that time for 7 years I was still able to be cured of hep c.

As far as getting sick the majority of patients have little in the way of side effects the most common being mild headaches that seem to be prevented or reduced by keeping properly hydrated by drinking  the old eight glasses of eight ounces of fluids daily that we all should be drinking anyway. I treated with Harvoni and ribavirin for 24 weeks because of my cirrhosis and prior treatment history. I worked full time and even took a short business trip. I am a 60 year old woman and missed no work. So you probably will be fine on treatment.  Although unfortunately some people did have a more difficult time with treatment that is the exception to what most people experience with treatment.

Best of luck to you let us know if you have any other questions and how you are doing.
« Last Edit: June 17, 2018, 03:19:53 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Sober4Today

  • Newbie
  • Posts: 2
Thank you both, Lynn K & Mugwump for y'all's advice and information. It is very helpful.

Sounds like I'm doing good then since I don't take Tylenol at all, don't drink anymore, and am not overweight. And I'm no longer living high risk by doing drugs. But I am an oilfield worker (mechanic) that works long hours. I'm sure that doesn't help.

Offline Salal

  • Member
  • Posts: 34

If you are overweight try to get to a healthy weight as having excess body fat can accumulate in the liver and just fatty liver by itself can cause liver damage.


On this point, Lynn, I have a question.  I used to have fatty liver not because of my weight but because of the amount of beer I was drinking at the time.  I do not have fatty liver any more but could the fatty liver I had in the past have left me with F2 fibrosis?

Offline Salal

  • Member
  • Posts: 34

The real problems are what it is doing to the liver and how much damage has been done.

CheersEric

I'm not arguing with the liver damage, but just want to add the point that there are other diseases quite apart from liver disease where HCV is believed to be the underlying cause.  Some types of autoimmune vasculitis, for instance, and they are life-threatening diseases.  They can shut certain vital organs down other than the liver.  So just because liver seems fine doesn't mean HCV isn't doing any harm.

Offline Mugwump

  • Member
  • Posts: 751
  • My number of posts means nothing, piscor ergo sum!
I'm not arguing with the liver damage, but just want to add the point that there are other diseases quite apart from liver disease where HCV is believed to be the underlying cause.  Some types of autoimmune vasculitis, for instance, and they are life-threatening diseases.  They can shut certain vital organs down other than the liver.  So just because liver seems fine doesn't mean HCV isn't doing any harm.
Yes and this is precisely why other diagnostic measures are taken and need to be done regularly for those of us who progressed to extensive permanent liver damage of any level. Some of us do experience a much more complex series of extra hepatic immune dysfunctions during infection and how we will react over time after clearing the virus is a bit of a crap shoot especially if we have cirrhosis and a know history of extra hepatic reactions to HCV infection.
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,256
  • Get tested, get treated, get cured, fight Hep c!
On this point, Lynn, I have a question.  I used to have fatty liver not because of my weight but because of the amount of beer I was drinking at the time.  I do not have fatty liver any more but could the fatty liver I had in the past have left me with F2 fibrosis?

Hard to know but I am thinking it could have contributed. Depending on how long how much and when the fatty liver resolved. Hep c alone also seems to contributate to the development of fat cells in the liver.

But just like those who have no idea how they contracted hep c really how you got to where you are now is kind of a moot point. The past is past what has done is done you can only go forwards from where you are now.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

 


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