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Author Topic: Life After Hepatitis C Treatment  (Read 4420 times)

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Offline lporterrn

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    • LucindaPorterRN
Life After Hepatitis C Treatment
« on: February 13, 2019, 09:10:48 pm »
There is a new page on Hep called, "Life After Hepatitis C Treatment" (https://www.hepmag.com/basics/hepatitis-c-basics/life-hepatitis-c-treatment)
This issue is extremely important because we are seeing that people think that once their hep C is gone, they have nothing to worry about. This is only true for people with early stage fibrosis (F0 to F2) People with F3 to F4 are at risk for liver cancer and need regular follow-up. Please read this and stay healthy!
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 Brum

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Re: Life After Hepatitis C Treatment
« Reply #1 on: February 14, 2019, 06:37:27 pm »
Life for people who had hep c and are now cured is positive. There is slowly mounting evidence that many sufferers who were f4 cirrhotic with fibroscan of 20+ are regressing to readings in the normal range within 3 or 4 years. I know because I am one of them, and know of many more in Australia. There does appear to be a point of no or slow return and the experts will be looking for this in their testing and observation of results.
On a political level Australia has basically free treatment for anybody that needs it. What Americans call ' Medicare for all' has had a wonderfully positive effect on our country and is regarded as a basic human right. Good luck to all and many,many thanks to the bloke who discovered the new treatments.     Gerry.

Offline andrew j

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Re: Life After Hepatitis C Treatment
« Reply #2 on: February 16, 2019, 04:25:19 pm »
Can a GP run the necessary tests, Lucinda?

(I live in New Zealand).

Offline Lynn K

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Re: Life After Hepatitis C Treatment
« Reply #3 on: February 16, 2019, 06:03:52 pm »
For myself at 4 years post cure I’ve little evidence of improvement. My fibroscan before treatment was 27 not 4 years later it’s 29 so basically unchanged.

My platelet count is up from before treatment. It was about 80 to 90 now it is about 125 so that’s good. Also my most recent upper endoscopy (yesterday) had no mention of portal hypertensive gastropathy as well as no varicies noted. All my upper EGD’s previously mentioned the gastropathy so that’s a good sign. But as I said my Fibroscan is unchanged.
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 lporterrn

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Re: Life After Hepatitis C Treatment
« Reply #4 on: February 17, 2019, 02:10:13 pm »
Andrew - I value the skills of a good GP, but I think people with cirrhosis need specialty care. The liver is very resilient and can go a long time without serious problems, but when serious problems happen fast. People who have established care with a specialist have the edge.
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 Julia Dee

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Re: Life After Hepatitis C Treatment
« Reply #5 on: February 22, 2019, 12:18:23 pm »
For myself at 4 years post cure I’ve little evidence of improvement. My fibroscan before treatment was 27 not 4 years later it’s 29 so basically unchanged.

My platelet count is up from before treatment. It was about 80 to 90 now it is about 125 so that’s good. Also my most recent upper endoscopy (yesterday) had no mention of portal hypertensive gastropathy as well as no varicies noted. All my upper EGD’s previously mentioned the gastropathy so that’s a good sign. But as I said my Fibroscan is unchanged.

Hi Lynn- it's been two and a half years since hep.C cure for my husband and he is doing about the same in many respects, though holding steady. His enlarged spleen has gone from 19 cm. tp 17 which is encouraging and his platelet count used to be about 43-45 but now seems to vary between 50-62- sometimes as much as up or down 7-8 points in six months, so I don't understand that. His bilirubin count varies between 1.0 and 1.6, but his diet is always basically the same. His VA care provider doesn't seem to think these "swings" are significant. His liver is always the same in ultrasounds. His other liver tests results are normal and stable, blood pressure and all else is good. What do you think about the bilirubin and platelet fluctuations?

Offline lporterrn

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  • LucindaPorterRN
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Re: Life After Hepatitis C Treatment
« Reply #6 on: February 22, 2019, 01:49:29 pm »
I know that you asked for Lynn's feedback, and hope you don't mind mine. I was a clinical nurse working in hepatology, and from a clinical standpoint, the changes you reported aren't clinical significant. However, what is significant is that he's held steady  for all this time. This is worth being optimistic over!
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 Julia Dee

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Re: Life After Hepatitis C Treatment
« Reply #7 on: February 22, 2019, 02:02:24 pm »
I know that you asked for Lynn's feedback, and hope you don't mind mine. I was a clinical nurse working in hepatology, and from a clinical standpoint, the changes you reported aren't clinical significant. However, what is significant is that he's held steady  for all this time. This is worth being optimistic over!


Oh, thank you, lporterrn! Your reply means so much to me. We are only able to get feedback from the VA provider- as there is not much money for outside 2nd opinions. Your opinion is much appreciated and makes me feel better!

Offline Lynn K

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Re: Life After Hepatitis C Treatment
« Reply #8 on: February 22, 2019, 08:00:33 pm »
Hi

Yeah that’s a pretty small change in platelets to be really significant but at least it is in the right direction. I agree likely not clinically meaningful same for the bilirubin. But stopping further decline is the goal, improvement is extra points.

Immediately after treatment mine were about to 110 up from the 80 to 90 before treatment. They stayed at 110 for a couple of years but then rose to 125 so maybe someday with time mine might get into normal range. We will see what the future holds.

Hoping your husband is able to see continuing improvement as time goes on
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 mario555

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  • Posts: 226
Re: Life After Hepatitis C Treatment
« Reply #9 on: February 24, 2019, 06:35:35 pm »
Hi everyone. It has been 4 years since I finished my treatment. although I was near cirrhotic before treatment, all my markers have gone down to a close to normal levels.  Energy wise, I have doubled my capacity and I can now sleep like a baby!  My Canadian cost to be cured was $150,000 (double treatment) but my insurance paid $100,000. I was lucky to be at the end of my carreer and I had the money to cover this cost. On the bad side, I developed a big case of tinnitus and dizziness on one side of my body.  After 4 years I think I will have to live with those impediments. Also, when I exaggerate (fatty food, drinks or other) I ''feel'' my liver. I do not think it came back as ''hardy'' as it used to be.  This is a good reason to take good care of it.  Finally I have stayed away from all doctors. I was proded and probed for too long and have only done the follow up for my liver health (cancer screening, Alt, etc...)  So have a happy life and good luck!
Lynn K. having ''known you'' for a fairly long time through this site, I consider you as one of the toughest person I know! You had some of the worst time with this disease and you came through it all.  Imagine where we would be if this new medication had not been invented? 4 more years of breaking apart. All of us are really lucky! There has been only 1 virus in the history of the world that has been cured (if I'm not mistaken) and it's Hep C! What are the odds!
60 years old. Likely infected 1975. Geno 1a
F4  8 millions VL,  AST 140  ALT 140
Generally in good health except problems are creeping up rapidly!
2 failed attempts Inf 2000 and Inf-riba 2010
Harvoni 24 weeks
Start 11/13/2014   EOT 4/27/2015
VL2 - UND
VL4 - UND (may 25)
VL12 - UND
VK24 -  UND
Hopefully cured forever!

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Life After Hepatitis C Treatment
« Reply #10 on: February 24, 2019, 10:18:10 pm »
Hey Mario great to hear from you!

I guess am one of the grizzled older dragon fighters and yeah probably very lucky to be here I tell people Harvoni saved my life and that is not an exaggeration. There were a lot of us back then with little hope of ever seeing a cure. Some of us didn’t make it to see the day.

Still living with cirrhosis officially for 11 years now but the key is still living

Thanks for checking in wishing you continued good health ;)
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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