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Author Topic: What next  (Read 2792 times)

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Offline Docroccin

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  • Posts: 9
What next
« on: May 14, 2019, 07:14:41 pm »
I am happy to read of those who have lived well for many years following diagnosis of  cirrhosis and mild-moderate varices.  Could I ask, were your liver function, platelets, albumin and bilirubin (and other related tests) normal during this time?
HCV probably late 1970s, early 80s
IFN 1990s, 9 out of 12 months
Genotype 1a 2019
6 months daclat/sofos
Fibroscan 39
HCV pcr neg May 19

Offline Lynn K

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Re: What next
« Reply #1 on: May 15, 2019, 12:33:30 am »
Hi and welcome

I was diagnosed with cirrhosis in Jan 2008 with liver biopsy. While I was infected with hep c my liver enzymes were always slightly elevated. Now, since my hep c was cured since I finished treatment with Harvoni in May 2015 my liver enzymes have been in normal range since I don’t have hep c irritating my liver anymore.

Before I treated my platelets were around 85. After my hep c was cured my platelets rise to about 110 and now at 4 years post my platelets are about 125. Still slightly below normal of 150 but improved. Maybe someday they will make it back to low normal.

My albumin and bilirubin have always been in normal range.

My MELD score is 7 because my INR is 1.1 if it was 1.0 my MELD would be 6 the lowest possible score.

How are you doing? Have you looked into treating your hep c? I understand treating hep c is more complicated if you have hep b
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 Docroccin

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Re: What next
« Reply #2 on: May 15, 2019, 03:29:02 am »
Thank you Lyn.  Pleased to meet you.  I have had HCV treatment. Six months sofosbuvir and daclatasvir. Just waiting for RNA result. LFTs, bili remains up largely unchanged since starting. Plt 69, alb 24 also unchanged. Don’t drink at all. Interestingly,  HBVsAb is pos and cAb is neg - yet I don’t ever remember being vaccinated. I’ve had an episode of what might have been liver failure last year - itch and acute leg edema. I guess I’m trying to figure where I’m at. Having scope soon. Things will become clearer.
HCV probably late 1970s, early 80s
IFN 1990s, 9 out of 12 months
Genotype 1a 2019
6 months daclat/sofos
Fibroscan 39
HCV pcr neg May 19

Offline Lynn K

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Re: What next
« Reply #3 on: May 15, 2019, 02:04:39 pm »
Hi nice to meet you too,

I’m not really up to speed on how hep b testing results work. Could you have been vaccinated as a child? I don’t know about recommended childhood vaccination schedules either.

Has your doctor said you have hep B?

Having elevated liver enzymes means something is injuring your liver now. That is why my liver enzymes returned to normal when my hep c was cured. No virus, no ongoing liver injury. But I still have liver cirrhosis for over 22 years now.

Thee are multiple causes of liver inflammation (hepatitis) not all are viral caused. There is fatty liver disease and you don’t need to be super overweight for this condition to develop although the risk is higher for those whose BMI say they overweight or more so if they are obese.

There is also autoimmune hepatitis a disease in which your immune system attacks liver cells. Vascular diseases, like Budd-Chiari syndrome, can cause blockages in the veins of the liver and lead to acute liver failure.

Are you seeing a hepatologist associated with a liver transplant center? This type of doctor is best equipped to follow a patient with advanced liver disease. Do you know your MELD score? The MELD is a composite score of a few blood tests. It is used to stage patients on the liver transplant list and also to estimate I think it is three month life expectancy. My MELD has been stable at 7 for many years. It is not the lowest possible score of 6 only because my INR is 1.1 if my INR was 1.0 I would have a score of 6.

You have to have a MELD of 15 at most transplant centers to be eligible to be on the transplant list as well as other factors like having a support network someone to care for you post transplant at home while you recover. Most transplants occur at a MELD of around 30 depending on the wait times in the region you are associated with. The MELD goes up to a max of 40.

Has your doctor said anything about the cause of your continued elevated liver enzymes?

Did they test you for HCV RNA at 12 weeks post? Most are calling not detected at 12 weeks means cured. Six months is insurance. Although we recently have two people here who were late relapsed this is rare.

Keep in touch let us know what you learn :)
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 Docroccin

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  • Posts: 9
Re: What next
« Reply #4 on: May 19, 2019, 09:08:41 am »
Thank you.

Turns out the jury is out on the hep b question. Serology result has gone missing so will have it again. Core ab result was definitely negative (can find that one).  I would say the serology will be negative, as I haven’t been vaccinated. I’m too old to have had childhood hep b vax. 

Yes, my hepatologist is wondering why the LFTs are still up.  Mentioned liver biopsy.  Not keen. There is still time for them to improve. I don’t drink. CAP score (fat score on Fibroscan) is normal, though I could, and will, lose weight.

I am still waiting for the EOT result. I had 24 weeks treatment due to cirrhosis.  Hepatologist went through the choices for retreatment, if required. “Salvage treatment”- now there’s another term that could be updated.

He said my MELD is 10, but I can’t get it below 15. (bili 61, INR 1.4, Na 141, creat 76)  Plt 69, alb 23. Not ideal.

He gave me preventive rifaximin.

Ah well, I’ll be waiting a bit longer then. And expect improvement.

HCV probably late 1970s, early 80s
IFN 1990s, 9 out of 12 months
Genotype 1a 2019
6 months daclat/sofos
Fibroscan 39
HCV pcr neg May 19

Offline Lynn K

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Re: What next
« Reply #5 on: May 20, 2019, 12:22:47 am »
I failed 3 interferon based treatments and also relapsed after treating with Sovaldi and Olysio 12 weeks treatment.

I was finally cured with 24 weeks of Harvoni and ribavirin.  I was diagnosed with cirrhosis in January 2008 on my 4th liver biopsy. I was having them every five years after I was diagnosed with hep c in 1990. So even though I had failed 4 previous treatments and was diagnosed 7 years prior with liver cirrhosis I was still able to be cured of hep c.

Did they test you for your viral load at 12 weeks post treatment? While later testing isn’t a bad idea if you were not detected at 12 weeks post most doctors are calling that cured. The odds of being cured at that point is about 99.8% and odds of relapse after that time are about 0.2%

While we did have two people recently here let us know they had a late relapse it is very uncommon. I was tested this year after the folks who had a late relapse posted and fortunstely I remain hep c free at 4 years post 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 Docroccin

  • Member
  • Posts: 9
Re: What next
« Reply #6 on: May 28, 2019, 05:32:41 pm »
So, got some results back. I am hcv pcr negative (after 6/12 sofos/daclat).  Also confirmed I haven’t been vaccinated, or ever had, hep b. Very pleased about that!  Next step is the endoscopy. 

Been doing some reading.  Waiting for decompensation.  Bit grim.  Good title for a book.

Just called my dog by the name of my childhood dog. 

I have utmost respect for those who stay smiling through this.
HCV probably late 1970s, early 80s
IFN 1990s, 9 out of 12 months
Genotype 1a 2019
6 months daclat/sofos
Fibroscan 39
HCV pcr neg May 19

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: What next
« Reply #7 on: May 28, 2019, 10:50:14 pm »
The good news is that with cure we can stop further progression of liver disease in its tracks. With time we may even begin to see some improvements in liver function even to lowering fibrosis scores. Of course the more damaged your liver already is, will be a factor in the possibility of regression. But as long as there is nothing else causing liver damage like alcohol or fatty liver we shouldn’t get any worse and may improve with time. My pretreatment platelet count was about 85 and rose to about 110 right after I finished treatment. Now at 4 years post my platelet count is about 125 still low but much improved.

Best of luck with the rest of your 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 Docroccin

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  • Posts: 9
Re: What next
« Reply #8 on: March 08, 2020, 03:46:39 am »
Update.   Hello all.

Been having my six-monthly ultrasounds. At the most recent one, I have developed a cyst. Yay!  Only small, at this stage.  Spleen at upper limit of normal.  Platelets have been around 50 for a fair while. Fibrinogen now low. B12 over 1500 now - has been high all the way through. AST remains twice my ALT. I still don’t drink. (Beginning to wonder if the AST is cardiac).

If anyone is reading this who has had liver cancer diagnosed, what size was yours at diagnosis and what investigations and management did you have? How did it go?
HCV probably late 1970s, early 80s
IFN 1990s, 9 out of 12 months
Genotype 1a 2019
6 months daclat/sofos
Fibroscan 39
HCV pcr neg May 19

Offline Nina Mae

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  • Posts: 71
Re: What next
« Reply #9 on: March 10, 2020, 03:39:20 am »
Hi,

I haven't posted in a long time (Hi lynn!) but I'm in a similar situation too.  I have cirrhosis (F4) due to HCV and some chemo drug from 2013 that added to this.  Anyway, I'm cleared from HCV...SVR24 was negative along with prior SVR12 and EOT.
My platelets weren't a problem for me but my ALT, AST, INR and my ALP have consistently been elevated even since HCV tx and clearance.  My initial MELD score was 12; went down to 9 after tx.

During a routine US, a gallbladder polyp showed.  A 2nd US was done the following month to confirm if it is a polyp or stone...it's a polyp and because it's 14mm, and I'm well over 60, my gallbladder has to be removed.  Short version:  Consulted with a heptobiliary, pancreatic, liver transplant surgeon last month who will be doing the surgery. 

Surgeon ordered lab work for pre-surgery and now my INR is 1.4 (it was 1.3); my bili is elevated by just 1 point, and strangely, my platelets are 119 (Feb 13) but they were 186 on Dec 7.  My MELD score is now 11. :[

I don't drink...haven't had any alcoholic beverages since Oct 2018.  I don't take OTC meds at all.  I think I eat well. 

I can't speak with dr's about it yet because I don't see any of them until either surgery or in June. 

Any thoughts?

Do you guys know if LFT, platelets, and INR can be affected by gallbladder disease?
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  EOT HCV RNA:  Undetected
Aug 15:  SVR 12:  Undetected
Nov 19:  SVR 24:  UNDETECTED!!!

Hep C Free!!!!

Offline Lynn K

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  • Posts: 4,500
  • Get tested, get treated, get cured, fight Hep c!
Re: What next
« Reply #10 on: March 11, 2020, 01:28:48 am »
Hi Nina!

Had my gall bladder out in 2008. Have you been getting blood testing and ultrasounds every six months?

I get liver enzymes CBC and AFP blood tests and abdominal ultrasounds every six months and see my hepatologist once a year.

Found a little about blood tests and gallbladder problems

A complete blood count, or CBC, can help confirm an infection if there is a high white blood cell count. Other specific blood tests can also reveal high bilirubin levels (the cause of jaundice, a complication of gallbladder problems) or elevated enzymes suggesting an obstruction in the gallbladder.

So sounds like elevated bilirubin and elevated liver enzyme tests are likely

Didn’t see anything about low platelets yet.
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 Docroccin

  • Member
  • Posts: 9
Re: What next
« Reply #11 on: March 11, 2020, 12:56:03 pm »
Hey Nina and hello there. Have you had your CT yet? 
HCV probably late 1970s, early 80s
IFN 1990s, 9 out of 12 months
Genotype 1a 2019
6 months daclat/sofos
Fibroscan 39
HCV pcr neg May 19

Offline Docroccin

  • Member
  • Posts: 9
Re: What next
« Reply #12 on: June 26, 2020, 07:31:12 pm »
Hey there. Hope you all are faring as well as can be expected.

Firstly - Nina how did it go?

I am much the same. Bloods continue deranged. Hepatologist says unclear what is still irritating the liver,  “must be fatty liver”, [CAP score was apparently normal 2 years ago], so having MRI in September which will look at the thing in the liver as well as  fat. Makes sense that ultrasound/elastography may not differentiate fat and fibrosis that well. Also having bloods for other causes of hepatitis, as outlined above by Lynne some time ago. AFP normal but B12 continues up, now >1500.

Anyone else get pain?  I get a dull ache RUQ - have had this intermittently many years. Also get severe pain, like I might die pain, lasts a few hours then eases to low grade for a week.  Triggered by pressure on abdo eg lots of bending (which made me dismiss pain as gord).  Hepatologist suggested gallbladder problem but it’s not consistent with that in a few ways and I’m not keen for surgery with inr up.  Meh, probably completely unrelated to liver.  One tends to think it’s all about the liver!

Also increasingly short of breath. 

Still taking the rifaximin to prevent me going bonkers.

Best regards.
HCV probably late 1970s, early 80s
IFN 1990s, 9 out of 12 months
Genotype 1a 2019
6 months daclat/sofos
Fibroscan 39
HCV pcr neg May 19

Offline Lynn K

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  • Posts: 4,500
  • Get tested, get treated, get cured, fight Hep c!
Re: What next
« Reply #13 on: June 29, 2020, 02:20:23 am »
I had some gall bladder attacks starting about 4 years after I was diagnosed with cirrhosis. They were pretty terrible I will say. I had gall stones showing on ultrasound several years before the attacks started. Seemed to have been associated with a fatty food intake. Just about doubled me over.

I figured better to have the gall bladder out while I was still healthy enough. My INR has been steady at 1.1 though. If it turns out it is a gall bladder issue and it is ok with your medical team I would get it removed before it becomes more serious. But that’s just my opinion.
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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