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Author Topic: Recently diagnosed and hoping for treatment  (Read 437 times)

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Offline Shellae

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  • Posts: 17
Recently diagnosed and hoping for treatment
« on: March 14, 2019, 06:51:50 pm »
Hi everyone. I'm new to this diagnosis, and have done some research on the treatment manyret my doctors have prescribed. Hoping the insurances cover this. I have done two of the three vaccinations for Hep A and B...the third is due in August. My question around this is will they start Hep C treatment before the full vaccine run? Also I have an ultrasound on Monday to see the extent of liver scarring. Blood liver panels show I am at F3. I believe I contracted the Hep C in either the early 70's, or in 1983. Both times I had blood transfusions. It is also possible I contracted it in 1990 from a tattoo. But new needles were used. Don't know about the ink though. I am happy to find this supportive forum. I'm really scared and have high anxiety, especially thinking that I've walked around all these years oblivious to my condition.

Offline lporterrn

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Re: Recently diagnosed and hoping for treatment
« Reply #1 on: March 14, 2019, 07:20:00 pm »
Congratulations on your adventure towards freedom from hep C! No problem with getting the vaccine (or any vaccine) while on treatment.

One thing that is important for you to know is that because you have F3, there is a chance that you are at risk of liver cancer even if your hep C is cured. It is very important that you keep your follow-up appointments to see if your liver heals itself or stays at F3. Here is a link to read after you are done with treatment: https://www.hepmag.com/basics/hepatitis-c-basics/life-hepatitis-c-treatment

For now, focus on treatment and know that we are here.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Shellae

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Re: Recently diagnosed and hoping for treatment
« Reply #2 on: March 14, 2019, 10:23:53 pm »
Thanks Iporterrn

Offline Lynn K

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  • Posts: 4,219
  • Get tested, get treated, get cured, fight Hep c!
Re: Recently diagnosed and hoping for treatment
« Reply #3 on: March 15, 2019, 02:23:28 am »
Hi and welcome

I probably was infected in 1978 but had no idea until 1990.

I was diagnosed as F3 in 2003 fibrosis and F4 cirrhosis in 2008 both diagnosis were using liver biopsy.

It’s more likely you got hep c from the blood transfusion as there was no antibody testing available for hep c until 1990 so the risk was having a blood transfusion before hep c antibody testing became available.

Best of luck on treatment
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 Nina Mae

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  • Posts: 40
Re: Recently diagnosed and hoping for treatment
« Reply #4 on: April 10, 2019, 01:20:05 pm »
Hi,

I usually don't post on someone else's thread because I, too, am relatively new with all this.

I was dx'ed in Nov with HCV and cirrhosis.  I didn't find out until I met my Hep C nurse exactly how advanced my cirrhosis is (F4).  Without going into my story and sabotaging your thread, I just wanted to say that I totally understand how you feel about walking around for so many years, contaminated, asymptomatic, and then BOOM...here we are, 30+ years later finding out that you have an advanced disease that you didn't even know you had to begin with.

So creepy.  I'm taking Epclusa and Ribavirin and I started tx on Mar 1.

We are so fortunate to have all these compassionate, smart, warriors on this forum who in all their sincerity are so helpful.  I'm just sorry we all have to go through this.  I'm 66 yo, a cancer survivor, trying to live out my 'rusty years' with my beloved spouse  and then this. 

We will beat this.  I'm on Day 39 of 84 so I'm just about halfway through!  It's a tough road, but you'll be okay.  I was so scared too but the most important thing I can advise is to drink tons and tons of water.  And do exactly what they tell you to do.  And visit the forum and vent your feelings...these people are so compassionate.  I usually lay low and read others' posts that may be applicable.  You'd be surprised at how much you learn on your own on here. 

You'll do great...distract yourself with whatever you like to keep your head clear even for a few minutes w/o having HCV and cirrhosis and tx's and tests and complications, taking up head space. 

Best wishes, stay smart, chin up (always)!   ;)
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019

Offline lporterrn

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Re: Recently diagnosed and hoping for treatment
« Reply #5 on: April 10, 2019, 06:22:59 pm »
Nina Mae - so glad you posted. This sort of support is how I got through my own treatment. t is the best medicine!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Nina Mae

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  • Posts: 40
Re: Recently diagnosed and hoping for treatment
« Reply #6 on: April 10, 2019, 07:18:48 pm »
Iporterrn, you guys have been so amazingly supportive (and patient :)) with all my questions and fears and I'm confident you help all the newly dx'ed people that find this forum. 

I'll be grateful forever for so many things...this forum included.

Wishing all of us better days ahead...and to all those who have beaten their dragons and still come to the forum to support the next batch of victims, all the very best wishes for feeling good and staying free of 'you know who'...haha!    ;D
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Recently diagnosed and hoping for treatment
« Reply #7 on: April 10, 2019, 09:41:58 pm »
Awwww, you made my day!!!!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Lullabie

  • Newbie
  • Posts: 1
Re: Recently diagnosed and hoping for treatment
« Reply #8 on: April 11, 2019, 10:05:47 am »
On Monday, April 8, 2019, I was diagnosed with Hepatitis C.  My doctor referred me to a specialist.  I'm very much concerned as the specialist has not contacted me for an appointment nor have I been able to make an appointment.  As you might imagine, my anxiety level has gone through the roof.  I am 68.  Is it possible I have had this for the past 50 years without knowing?  I found out through a routine blood test.  I am scared.  I realized I added to someone's post.  I saw we had a similar situation and hope your not offended.  Please know my heart is with you.
« Last Edit: April 11, 2019, 10:15:16 am by Lullabie »

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Recently diagnosed and hoping for treatment
« Reply #9 on: April 11, 2019, 12:26:57 pm »
Did you only have the hepatitis c antibody test or have you had a second test called the HCV RNA by PCR which looks for the actual virus in your blood?

The antibody test indicates if you were exposed in the past but you may not be currently infected. About 25% of people are able to fight off hep c infection without medicine. They are not infected but will still test positive for hep c antibodies. The second HCV RNA test will let you know if you are currently infected and will need medicine to treat and cure your hep c.

It is entirely possible you could have been infected for many years and not know you are. Hep c is called a silent illness because for most people they have little to no symptoms except maybe being tired a lot. When people do begin to have symptoms is that after 20 years of infection about 20% of people will experience liver damage caused by hep c so the symptoms are those of liver damage. But most people don't develop liver damage and simple carry the virus and never know they have it which is why doctors are recommending people born in the baby boom generation get tested even if they don’t feel sick. The baby boom is the largest group who may have hep c. Many of us may have tried drugs in the past even just one time and have no idea we are infected. There are other ways other than IV drug use but that is the most common method of transmission or receiving a blood transfusion prior to 1990 when testing for hep c was developed and the blood supply secured.

So anyway unless you have had the HCV RNA test you may not currently be infected. If you have only had the hep c antibody test ask your regular doctor about having the HCV RNA  by PCR test you could have the results in a week. Not all general practitioners are fully familiar with proper hep c testing procedures. If you still need to see the specialist then call their office every day if you have to and get that appointment scheduled.

Best of luck let us know how it’s going
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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