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Author Topic: New here and Harvoni Day 21  (Read 10636 times)

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Offline MEG

  • Member
  • Posts: 304
New here and Harvoni Day 21
« on: February 16, 2015, 02:34:41 pm »
Hi all,

Thanks so Lucinda and all who created this board and for all who share so generously of themselves. I have been lurking on and off for a while and wanted to share the journey with you.

I began Harvoni on Jan 24th.  I'm a pedi nurse and  treatment-naive.  The major symptoms pre-treatment were fatigue(I've not been able to work since diagnosis 21 years ago), low grade fevers, depression, brain fog.

Over the years I worked hard with my nutrition, my spirituality, pursuing creative outlets(writing poetry and photography)activity levels(I love cycling),  to create a decent quality of life even though I was unable to work in a profession that I loved with all my heart.

This autumn was different. I caught a cold in October and have not been able to clear it. Feeling better by resting/soups/Vit C, then doing no more than errands and then immediate relapse.

Re: Harvoni I frankly can't tell the difference regards my fatigue.

During the first week I experienced the dull headaches and nausea----thanks for all the advice to stay hydrated.  My brain felt foggier and also would get these momentary periods of what felt like an electrical "something" was circulating around my head. Again, it's the only way I know how to describe it.  These resolved into week 2 and 3. Although in week 3 I began getting more bouts of epigastric pain and bloating than preHarvoni---when this happened from time to time and not often enough to medicate.



2 week labs last week:
AST/ALT: down to 33/42. Down from 69/81 respectively.

Creatinine:  0.80. This has slowly inched up over the years. Initial liver biopsy showed mild inflammation. Fibroscan last November showed no fibrosis.

Pretreatment viral load 1.8 million. Will be measured at 4 weeks.

I look forward to getting to know everyone.  It's been quite the   isolating illness on and off over the years. And I'm in one of "isolated years" right now due to a move out west last year.  Because I was considered too healthy for a clinical trial and initially too healthy to be approved for Harvoni, I went about my life as before H was approved. In hope, carrying out my other life plans while the unknown re: treatment hovered in the background.

Thanks for reading! Longer post than I expected. I look forward to sharing the joy of a cure!!
MEG.
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline MEG

  • Member
  • Posts: 304
Re: New here and Harvoni Day 21
« Reply #1 on: February 16, 2015, 02:36:41 pm »
Can someone tell me how to create a "signature" that I see on many of the posts where people tell the essential stats re: genotype, past treatment, etc...Thanks in advance.
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Tpropane

  • Member
  • Posts: 65
  • Heal the past by living in the present.
Re: New here and Harvoni Day 21
« Reply #2 on: February 16, 2015, 02:56:32 pm »
Dear Meg. You go to profile and I think there is a space for a note and a signature line.

The fatigue has its up and downs. I have good days and bad. Today I'm dragging butt. 2 cups of coffee, oatmeal. It's noon and I'm still in my PJ's. I am giving myself permission to listen to my body. I have been doing easy does it work outs at the gym every other day. It helps. But sometimes I take it one day, one hour, one minute at a time.
Tpropane
Hep C 1A / TT diagnosed 2009
Non Responder Boceprevir/riba/peg 2011
F-4 Cirrhosis
TX Harvoni 24 weeks started 1/20/15
2 week labs VL 174!
4 week labs UNDETECTED !
8 week labs UNDETECTED !

Offline MEG

  • Member
  • Posts: 304
Re: New here and Harvoni Day 21
« Reply #3 on: February 16, 2015, 03:28:43 pm »
Thanks so much, Tpropane.

I just added a sig. We'll see with this post if it worked ;-)

Ya, the fatigue is vexing. I'd figured out(more or less) what levels of activity I can handle from day to day and be quite productive, even if in measured amounts. Was able to make plans in advance and there would be a good chance I'd be able to fulfill them because I'd learned to not over-do it pre-commitment.   But in October when I caught that first cold virus, I feel like I've slid back to the early days of the HCV. In bed, if I do anything, I relapse.  Just this past w/e I babysat for a friend so she could celebrate her anniversary and I am wiped today.  She didn't tell me that her kids were sick.

I know that this too shall pass..spring will come. Flowers will bloom. And fingers crossed, HCV will be something of my past.
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: New here and Harvoni Day 21
« Reply #4 on: February 17, 2015, 04:00:42 am »
Yes about the fatigue I have sometimes my crash and burn weekends and sleep way too much but I guess my body needed it.
 
Then I feel fine for several weeks till I need to sleep alot again.

I work full time and also have a part time job 4 hours a week and work the occasional weekend of overtime but that doesn't leave much energy to go to the gym. So pretty much eat, work, sleep.

Good 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 MEG

  • Member
  • Posts: 304
Re: New here and Harvoni Day 21
« Reply #5 on: February 17, 2015, 04:17:31 pm »
Lynn,

The fatigue and its pattern is vexing, isn't it. Caffeine does more harm than good for me because it rev's me up, I over-do it and then crash and burn.

As you know, it's only natural that we become tired because our immune system is working overtime, all the time, but I wonder why different people have different levels of fatigue. My doctor has not been able to explain it. 

Wishing you a speedy undetectable too. I'm so glad I found you all.
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: New here and Harvoni Day 21
« Reply #6 on: February 17, 2015, 04:29:06 pm »
I tend to attribute my tiredness to my liver cirrhosis plus the primary symptom reported by people with hep c is tiredness. Since I am always tired for years I do not have a reference point to what is normal. Especially as I have had hep c since 1978 and known since 1990.

What is normal tiredness for a 56 year old woman? I surely would not know.
« Last Edit: February 17, 2015, 04:30:42 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 MEG

  • Member
  • Posts: 304
Re: New here and Harvoni Day 21
« Reply #7 on: February 17, 2015, 04:32:49 pm »
I also don't know what normal tiredness is for a 54 yo and I can't wait to find out ;-)

It's the spectrum of tiredness that makes me scratch my head. Why can some work(and you have cirrhosis) yet, I who have no liver disease have enough fatigue such that I can't work...

Here's to Harvoni obliterating our long time tiredness.
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: New here and Harvoni Day 21
« Reply #8 on: February 17, 2015, 05:35:24 pm »
Hear hear may we all feel better soon.

I can't imagine not working I have been working since I was 18 when I joined the Army. And since I am the bread winner and I don't qualify for social security disability I have no choice but to work
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 MEG

  • Member
  • Posts: 304
Re: New here and Harvoni Day 21
« Reply #9 on: February 17, 2015, 08:14:33 pm »
Ya, Lynn, not working was a huge adjustment---although during the first couple of years I was pretty bed-bound. It was once I began feeling better that the ache to work began---I loved my job.
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: New here and Harvoni Day 21
« Reply #10 on: February 17, 2015, 08:20:11 pm »
Sorry to hear how hard this has been on you. I am guessing they have looked for other reasons why you are having such a difficult time.

I was reminded that just because we have hep c doesn't mean we are don't have to do all the other health checks appropriate for our lives that should be done by everyone. Sometime it is too easy to focus on the known and forget about other possibilities.

I sure hope your doctor can find a way to help you feel better so you can lead a more active life.

Good luck to you
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 Bituman

  • Member
  • Posts: 157
Re: New here and Harvoni Day 21
« Reply #11 on: February 17, 2015, 08:44:12 pm »
I sure hope your doctor can find a way to help you feel better so you can lead a more active life.

Good luck to you

What Lynn said...

Bob
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline MEG

  • Member
  • Posts: 304
Re: New here and Harvoni Day 21
« Reply #12 on: February 17, 2015, 09:29:05 pm »
Thanks Lynn and Bitumen,

We've done extensive workups. They put me on thyroid medicine and even though my free t3 is high normal, it didn't change how I feel.

 I have felt better, slowly, over the years. But, not enough to do any kind of work consistently. It's this past Fall since my first cold that things went badly. And I've been unable to fully recover to get back to my baseline.

I'm hoping that the Harvoni takes care of this and at the same time worried that it won't.....

Yet, I look "fine." It's a blessing to not be obviously sick in public but at the same time people have a hard time believing me when I tell them I went out for a bike ride. I'm always upbeat when out and about.  I've lost some really dear friends over the years or disconnected from some for extended periods because of my not being able to be the friend they needed---consistently. 

My hope never falters no matter how depressing it can be at times. And I truly do believe that once the cold season is over and I've finished the H that as summer approaches I will be feeling better.

Thanks again for your support. 

Right
« Last Edit: February 17, 2015, 09:31:08 pm by MEG »
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

 


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