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Author Topic: 30 days post Harvoni treatment  (Read 7820 times)

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Offline Ntwobad

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  • Posts: 6
30 days post Harvoni treatment
« on: January 01, 2018, 06:53:40 am »
I was diagnosed with hepatitis c back in July and what a shock. It was. The only way that I think I could have contracted it was from blood transfusions I had as a kid back in the late 70's. I started loosing weight a few years ago and my doctor thought I should be tested and bingo. My normal weight was around 240 and I got down to 206. Now I'm back up to 10 pounds. I started 12 weeks of harvoni back in September with a vl of 3.7  million AST 125, ALT 170 after 2 weeks VL 330  AST 28 ALT 17 after 4 weeks VL 20 AST 50 ALT 41 After 12 weeks VL undetected AST 32 ALT  24. I just recently had my 4 week post treatment blood work done and waiting for the results are driving me crazy.
I'm curious to what kind of physical symptoms most of you had before treatment?

Offline gnatcatcher

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  • Posts: 1,372
Re: 30 days post Harvoni treatment
« Reply #1 on: January 01, 2018, 08:54:15 am »
Welcome, Ntwobad. Yes, the waiting is tough, but your end-of-treatment numbers are great, so everything is looking good. Did you have a fibroscan or fibrosure or other test of your liver's fibrosis level? Whatever F number you are, that may go down (get better) now, too.

Like you, my hep C had to have been from blood transfusions. My weight went in the other direction :(  My main physical symptoms were great fatigue; random migrating joint and muscle pains; kidney damage. It took decades for my AST and ALT to rise. Hep C can cause so many things that mimic other diseases that there's even a term for it: extrahepatic manifestations (EHMs).

Happy New Year and New Life!

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Ntwobad

  • Member
  • Posts: 6
Re: 30 days post Harvoni treatment
« Reply #2 on: January 01, 2018, 11:47:23 am »
Gnatcatcher my doctor says I'm between F3-F4. My blood work shows F3 and scan shows F4. I also had a ultrasound and she says everything looks normal if that's possible. What do you think is the most accurate test for fibrosis levels?

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: 30 days post Harvoni treatment
« Reply #3 on: January 01, 2018, 02:19:54 pm »
Pre-treatment, the fibrosure blood test put me at F2 and the fibroscan at F4. My hepatologist trusts the fibroscan more. I've had two more fibroscans after being cured, and my F score keeps going down (further proof that my liver keeps getting better). I'll have a final fibroscan in mid-February.

FWIW, my pre-treatment ultrasounds always looked normal, too.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: 30 days post Harvoni treatment
« Reply #4 on: January 01, 2018, 08:52:14 pm »
Hi

I had hep c for 37 years and was diagnosed with liver cirrhosis by liver biopsy in Jan 2008 after being infected for 30 years.

I really never had any symptoms of hep c and only a few from cirrhosis just lower leg swelling. Most people only have have symptoms with tiredness being a common complaint which is why hep c is called a silent illness with most only learning when either their doctor has them test because they are in the boomer generation or if they donate blood.

As far as the best test for fibrosis that would be a liver biopsy which is called the “gold standard”. But it is invasive and not really needed. For you as borderline F3 to F4 there really isn’t much difference if how you should be treated or how you should be followed after cure.

My ultrasounds say corse echotexture consistent with diagnosis of cirrhosis.

One test you might want to look at is your platelet count. As cirrhosis advances that is one lab test that begins to change. My pre treatment platelet count was about 80 to 90 with min normal at 150. Now post treatment it has risen to 110. Still low but improving. Low platelet happens because having cirrosis also effects the spleen causing it to enlarge and begin to sequester platelets.

Best of luck with treatment
« Last Edit: January 01, 2018, 08:56:52 pm 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 Ntwobad

  • Member
  • Posts: 6
Re: 30 days post Harvoni treatment
« Reply #5 on: January 02, 2018, 04:56:22 pm »
I just spoke with my Doctor and good news, I'm still undetected 4 weeks post treatment and normal liver enzymes. Now the waiting begins again

Offline Ntwobad

  • Member
  • Posts: 6
Re: 30 days post Harvoni treatment
« Reply #6 on: January 02, 2018, 05:10:17 pm »
Hi Lynn,  my platelet count is 230. My platelets have been normal the since I first tested positive. Thanks for bringing it up, I'll do some reading about it

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: 30 days post Harvoni treatment
« Reply #7 on: January 02, 2018, 05:51:59 pm »
Congrats on your 4 weeks post treatment result I believe the odds against relapse are about 95% at this point.

If your platelet count is that high you are probably in good shape there too. I took a couple of years after I was diagnosed with cirrhosis before my platelet count went below normal.

This month is my 10 year anniversary of being diagnosed with cirrhosis. May is my 3 year anniversary of completing my last treatment for hep c and being cured.
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 Ntwobad

  • Member
  • Posts: 6
Re: 30 days post Harvoni treatment
« Reply #8 on: January 02, 2018, 06:26:06 pm »
Congratulations on your upcoming anniversary. I'm sure it feels great to be cured.
I'm curious to how you felt when you were diagnosed with cirrhosis. I'm terrified, mentally this has taken a huge toll on me. I think about my illness 24 hours a day, it's totally stressing me out. I have developed really bed insomnia. I'm all messed up I have to get it together

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: 30 days post Harvoni treatment
« Reply #9 on: January 02, 2018, 07:56:35 pm »
Ntwobad, since you are undetected with normal liver enzymes, how about thinking of hep C in the past tense: you had hep C. That was then; this is now -- a new year, a new chapter in your life. As Lynn said, the chance of a relapse is small, so you may as well turn your attention to things you want to do now that the unexpected nightmare is over. The busier you stay doing things you like, the less time you'll have to worry, and the more tired you'll be at bedtime, making falling asleep easier.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: 30 days post Harvoni treatment
« Reply #10 on: January 02, 2018, 08:22:15 pm »
Hi Ntwobad
To be honest when my doctor told me that my the result of my 4th liver biopsy (I had one done every 5 years after I was diagnosed with hep c) that I had F4 which means I have cirrhosis I got choked up and cried a little in his office. But as you can see I am still alive and kicking 10 years later.

Since you are being cured of hep c your liver damage from hep c stops here and now. There is data to suggest that at least 50% of people with liver damage can improve post cure. Several people have had their fibrosis scores decrease post treatment. I guess it depends how badly damaged your liver is. For me with having been diagnosed so long ago and having some symptoms like edema and having esophageal varicies along with a low platelet count so far I haven’t seen any improvement in my fibrosis score but I guess it takes a while to reverse so much damage.

You are not as far down the road as I am. I am willing to bet you see improvement in your fibrosis score but even so as long as you take good care of the liver you have left you should not continue to progress. So this is all good news.

Try not to focus your energy on this diagnosis. If you can try to take it as a gift to remind you that life is not forever and get busy living life. We can change yesterday or predict what will come tomorrow, we only have today so live it!

https://youtu.be/_9TShlMkQnc

Good luck
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

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: 30 days post Harvoni treatment
« Reply #11 on: January 02, 2018, 08:28:58 pm »
Just wanted to add like the song in the link “Live like you were dying”

after I dried my tears I did go skydiving in fact many times. I went on a week long back pack trip in the mountains which I hadn’t done since I was in my teens. Not exactly Rocky Mountain climbing more like Goat Rocks wilderness hiking but I guess you get the idea :)
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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