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Author Topic: What can I expect regarding my cirrhosis after Harvoni?  (Read 8493 times)

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Offline straycat

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  • Posts: 24
What can I expect regarding my cirrhosis after Harvoni?
« on: April 16, 2017, 05:43:43 pm »
Hi guys - I haven't been here since my Harvoni treatment.  Everything is still going great in that respect, but I have some questions about the residual cirrhosis I've been left with due to the hep C infection.

I first had to be banded for esophageal varices in 2012 (2 EGD's for a total of 8 band placements).  My doc hadn't done EGD's  before that time and I don't know why he started then, but he did.  Then in 2014 I had grade 1 varices that he said didn't need to be banded so we took a 'wait and see' attitude.  Now this month I had another EGD and required 2 bands this time - he will do a follow-up EGD to see if there are any more.

I'm wondering if the repeated need for banding is an indication of worsening liver function due to the natural course of cirrhosis?  Is this to be expected?  And what other things should I expect to happen?  I see my doc in June but I'm a little discouraged and wanted some feedback from the 'pros'   ;)

PS  I do take Inderal 10mg twice a day.  I wonder if increasing the dose would help?  Another question for doc.....
GT 1b Fibrosis Stage 4
NAG Significant activity (inflammation score)
VL  2,880,000 IU/ml pre-tx
1970ish nonA-nonB hep, dx HCV 1994
IFN failed - autoimmune response
Started Harvoni (24 wks) 7/25/2015
VL 8/25/15  zero virus detected
AST/ALT 27/24
VL zero 1/2016 post-tx

Offline Lynn K

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Re: What can I expect regarding my cirrhosis after Harvoni?
« Reply #1 on: April 16, 2017, 11:39:36 pm »
Hi stray cat

I also had bandings done for esophageal varicies back in 2011 to 2012 over 4 months time. Once you were diagnosed with cirrhosis that is part of the standard protocol is to check the patient for esophageal varices which can be caused by liver cirrhosis which causes portal hypertension.

I had an initial EGD in 2008 shortly after I was Dx with cirrhosis. I had grade 1 at that time. Per protocol I was rechecked at 2 years in 2010 and had grade 2 varicies so I was rechecked again the next year last in 2011 and had grade 3 varicies so I underwent 4 EGD's over the next 4 months to band them no idea how many bandings. Then I was rechecked at 6 months then 6 months later one year after the bandings were done. Now I have an upper EGD every year since then so all in all I have at best count about 13 upper endoscopies since 2008, four of which involved banding being placed.

I was followed closely after I was diagnosed with hep c in 1990. I was having liver biopsies done every five years until my liver biopsy in 2008 when I was diagnosed with early cirrhosis. The development of grease 3 varicies that need banding is an indication of portal hypertension. Other early indications of advancing cirrhosis would be a low platelet count which is also related to portal hypertension causing the spleen to enlarge and sequester platelets. Minimun normal platelet count is 150. My platelets were about 80 to 90 before treatment now 2 years after I was cured they have risen to about 110 still low but an improvement. I also have some lower leg swelling called edema  for which I take a diuretic called spironolactone. I have been taking that since 2008.

I do not take a beta blocker as the goal of beta blocker treatment is to lower the heart rate to about 60 BPM which is how a beta blocker lowers portal hypertension. My heart rate is already lower than that so I cannot take a betablocker.

Please, absolutely DO NOT adjust your dose of Inderal on your own without explicit instructions from your doctor.

As far as our prognosis going forward a lot depends on how advanced our cirrhosis is the more advanced the mor difficult for our livers to heal. There is about a 50% chance our livers may heal with time. Of course the more damage does make it less likely. But the important thing is we should not progress.  However we will still need to be monitored possibly for the rest of our lives for the development of Hepatocellular carcinoma as we will remain at increased risk but even that risk is reduced with cure.

 I assume you were seeing hepatologist associated with a liver transplant center they are best equipped to monitor patients like us going forwards.  Your hepatologist would be best equipped to answer your question based on your own health situation.

But what we can best do to help ourselves is to keep a healthy diet, exercise as we can tolerate it and maintain proper weight. Excess bodyweight can cause fat cells to develop in the liver which alone can cause liver damage. Also avoid excess salt as that can contribute to edema and ascities. We also need to see our liver specialist regularly and have regular blood testing and abdominal ultrasounds to monitor for early indications of HCC so it can be caught early.

I have blood work and abdominal ultrasounds every 6 months and an annual upper endoscopy. I see my hepatologist once a year.

Let me know if you have any questions and I will try to help

Best of luck
« Last Edit: April 17, 2017, 01:38:16 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 straycat

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  • Posts: 24
Re: What can I expect regarding my cirrhosis after Harvoni?
« Reply #2 on: April 17, 2017, 10:10:43 am »
Hi Lynn K - thanks for responding!  I see my gastro doc every 6 mos, have lab/sono every 6 mos and colonoscopy/EGD every couple of years.  He is associated w/a transplant center just in case.  I'm being well cared for by him.

My platelets still run below 100 and my spleen is enlarged (both are long-term and ongoing problems), but I don't have any edema or ascites (I take Lasix) or any other outward symptoms.  In fact people find it hard to believe that I have cirrhosis because I keep myself in such good shape with diet and exercise even at the ripe 'old age' of 64!

I wouldn't change any of my meds without first talking to my doc; thanks for the reminder for other readers though   :)

It sounds like I'm doing everything I can to keep myself as healthy as I can, and that's what I wanted to know.  It's comforting to know that I'm not the only one having to go through all this stuff.  Hopefully over time my platelets will rebound, my spleen will shrink and my varices will stop needing intervention!

Always forward, never back.

PS I love your avatar!
GT 1b Fibrosis Stage 4
NAG Significant activity (inflammation score)
VL  2,880,000 IU/ml pre-tx
1970ish nonA-nonB hep, dx HCV 1994
IFN failed - autoimmune response
Started Harvoni (24 wks) 7/25/2015
VL 8/25/15  zero virus detected
AST/ALT 27/24
VL zero 1/2016 post-tx

Offline Lynn K

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  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: What can I expect regarding my cirrhosis after Harvoni?
« Reply #3 on: April 17, 2017, 02:25:46 pm »
Hi

Are you taking lasik for edema or another reason? But that is likely why you don't have any edema.

Anywho basically that is all we can do is watchful waiting and be as healthy as we can.

Sounds like you and I are in the same boat.

I like your motto :)

Yep my flying cat best decision ever

http://cathumor.net/wp-content/uploads/2015/09/cat-humor-i-should-become-pilot-best-decision-ever-600x445.jpg
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 straycat

  • Member
  • Posts: 24
Re: What can I expect regarding my cirrhosis after Harvoni?
« Reply #4 on: April 17, 2017, 04:59:28 pm »
Lynn K, I had a bout of severe ascites way back when in 1996 and started Lasix (and Inderal) then.  I haven't had any more problems with it since then and luckily I don't have to watch my fluid or sodium intake (but I do eat no added salt anyway). 

Off topic, I can't figure out why my avatar doesn't show up (it's a kitty w/'meow' written in the margin).  But if that's my serious problem for the day then I'm doing pretty good LOL
GT 1b Fibrosis Stage 4
NAG Significant activity (inflammation score)
VL  2,880,000 IU/ml pre-tx
1970ish nonA-nonB hep, dx HCV 1994
IFN failed - autoimmune response
Started Harvoni (24 wks) 7/25/2015
VL 8/25/15  zero virus detected
AST/ALT 27/24
VL zero 1/2016 post-tx

Offline Lynn K

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  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: What can I expect regarding my cirrhosis after Harvoni?
« Reply #5 on: April 17, 2017, 07:32:38 pm »
Not very techie myself I had step by step instructions I have since lost

Yes 1st world problems to be sure ;)
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 Pete

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  • Posts: 110
Re: What can I expect regarding my cirrhosis after Harvoni?
« Reply #6 on: April 25, 2017, 01:18:11 am »
Hello Lynn and Straycat - Funny that Lynn's avatar is the cat here.   I've been following posts regarding cirrhosis.  So I appreciate the post and Lynn's replies. 

I noticed that both of you have mentioned low platelets being at least in part due to  cirrhosis.  Is platelet count considered a benchmark of sorts for cirrhosis progression, or improvement?  I went back and looked at my labs over the past 2 years and looks like my run rate is pretty much in the middle of the range.

In your examples, if platelet counts were to increase, and get back to >150, might  that indicate improved liver function? 

Thanks,
Pete




Offline Lynn K

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  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: What can I expect regarding my cirrhosis after Harvoni?
« Reply #7 on: April 25, 2017, 03:33:31 am »
As the liver becomes more damaged is causes an increase in portal hypertension or high blood pressure in the portal vein in the liver which is caused by the scarring of cirrhosis. This in turn causes a the spleen to enlarge and sequester platelets. Increased portal hypertention also can cause enlarged veins in the esophagus called esophageal varices which I ask was found to have on my 3rd upper endoscopy 4 years after I was diagnosed with cirrhosis.

Getting back to the platelet counts yes lowered platelet counts are associated with worsening liver cirrhosis. Patients platelet counts can get to 50 and even lower. I believe below 50 they will do transfusion of platelets to increase platelet levels as bleeding becomes a serious risk. However this only helps temporarily as the effects of cirrhosis will work to lower those new platelets as well. This situation would be in very advanced cirrhosis with the patient likely having a very high MELD score and being in the transplant list.

For me I believe that improvements in my platelet count would be the best indication in the physical condition in my liver a reduction in scarring and portal hypertension.

If you have a normal platelet count I am assuming your cirrhosis is not that advanced yet.

Have you had an upper endoscopy yet? That was one of the tests my doctor had me get shortly after my diagnosis with cirrhosis in 2008. Did you have any varicies?
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 Lynn K

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  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: What can I expect regarding my cirrhosis after Harvoni?
« Reply #8 on: April 25, 2017, 03:38:23 am »
Some additional information:

https://www.niddk.nih.gov/health-information/liver-disease/cirrhosis

Splenomegaly. Portal hypertension may cause the spleen to enlarge and retain white blood cells and platelets, reducing the numbers of these cells and platelets in the blood. A low platelet count may be the first evidence that a person has developed cirrhosis.
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 Pete

  • Member
  • Posts: 110
Re: What can I expect regarding my cirrhosis after Harvoni?
« Reply #9 on: April 26, 2017, 10:38:17 pm »
Thanks for the detail Lynn.  I've not yet made the appt for the endo. 

 


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