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Author Topic: Started Epclusa today 2/1/2019  (Read 7178 times)

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Offline ODAAT

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  • Posts: 12
  • Going for the CURE
Started Epclusa today 2/1/2019
« on: February 01, 2019, 06:58:55 am »
Hello All... This is day one, 2/1/2019 of my Hep C 12 week treatment with Epclusa.  83 more days to go for the cure.   :D  I scheduled myself to take the Epclusa pill at 6am every morning. I'm going to try and keep track of any side effects and overall feelings in general.  I did get a metallic taste in my mouth when drinking my first cup of coffee.  I can deal with that... haha...   Thanks for this forum.  Maybe my journey can help others... I have two friends that have Hep C and want to be treated and go for the cure ... they are watching my journey closely.  I have faith and hope all will be well. Thanks again.
HCV - contracted 1980's diagnosed 1/2019
Genome 2b
VL 5,790,000 
Fibrosis score .36
Fibrosis stage F1 - F2
ALT 161 AST 64

4 Week report.
VL "<15 IU/mL, Detected”
ALT 24 AST 22

Treatment 12 weeks Epclusa started on 2/1/2019
#thecure #slaythedragon #onedayatatime

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Started Epclusa today 2/1/2019
« Reply #1 on: February 01, 2019, 12:07:24 pm »
Hope you breeze through to the finish line. Welcome to the beginning of freedom!
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 ODAAT

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  • Posts: 12
  • Going for the CURE
Re: Started Epclusa today 2/1/2019
« Reply #2 on: February 02, 2019, 06:57:11 am »
Thanks lporterrn... I appreciate the support.  Yesterday, the first day side effects were mild. I had a headache and little bit of an upset stomach but not too bad.  I slept ok, tossed and turned in the early hours.  All in all, I had a good day. So, day 2 has begun.  We shall see how it unfolds.  ;D
HCV - contracted 1980's diagnosed 1/2019
Genome 2b
VL 5,790,000 
Fibrosis score .36
Fibrosis stage F1 - F2
ALT 161 AST 64

4 Week report.
VL "<15 IU/mL, Detected”
ALT 24 AST 22

Treatment 12 weeks Epclusa started on 2/1/2019
#thecure #slaythedragon #onedayatatime

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Started Epclusa today 2/1/2019
« Reply #3 on: February 02, 2019, 12:44:25 pm »
Hi and welcome

Fortunately the majority of people who undergo hep c treatment with these relatively new DAA meds report little in the way of side effects. The most often reported side is having some mild headaches. Most have found if they try to keep properly hydrated the old eight glasses containing eight ounces of fluids seems to ward off headaches. So if your not already see if being hydrated helps with that.

Best of luck and wishing you smooth sailing 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 ODAAT

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  • Going for the CURE
Re: Started Epclusa today 2/1/2019
« Reply #4 on: February 03, 2019, 10:22:53 am »
Thank you Lynn K., I really appreciate the support.  This is Day 3 of 84.  Yes, hopefully my side effects stay tolerable.  I've been drinking lots of water and the headache is mild.  I have some nausea, some nervous jitters, and I'm a little bit irritable. I still have a long way to go.... one day at a time.  My taste buds have changed.  I have a metallic taste to almost everything... weird.   Yesterday seemed real long and slow moving... maybe it was just me.  I guess like anything else, I have to stay busy doing other things while I recover and go for the cure.  Today has started out alright.  Its raining and warm here on the southeast coast.  Thanks for the forum.
HCV - contracted 1980's diagnosed 1/2019
Genome 2b
VL 5,790,000 
Fibrosis score .36
Fibrosis stage F1 - F2
ALT 161 AST 64

4 Week report.
VL "<15 IU/mL, Detected”
ALT 24 AST 22

Treatment 12 weeks Epclusa started on 2/1/2019
#thecure #slaythedragon #onedayatatime

Offline Mugwump

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  • Posts: 752
  • My number of posts means nothing, piscor ergo sum!
Re: Started Epclusa today 2/1/2019
« Reply #5 on: February 04, 2019, 12:40:29 am »
Seems that Epclusa works about the same as Harvoni as far as what happens during treatment. You can find yourself having a sudden boost starting at about week 2, we called it the "harvoni high".

I did a little checking and it seems that most of the members here who experienced a boost during treatment had higher alt and ast readings at the beginning of treatment and as the liver function normalized down into the normal range, the sudden jolt of normal liver function can really seem like a happy pill! The specialist and clinic that treated me confirmed that others here who were in a similar boat with high liver enzyme counts at the beginning of treatment also experienced something very similar.

Would be interesting to confirm that this is the case. This would explain a great deal.

Personally I found that getting some exercise was almost as important during treatment as keeping well nourished and hydrated. I was not in very good condition at the beginning of treatment so the sudden change to my metabolism was astonishing to say the least.

The bummer for me was catching a really terrible case of the flu right at eot! It sent me for a hell of a loop and I almost wound up in hospital. I had the flu shot in late 2014 but the shot missed that year and the flu season was hell on earth. But the changes that having normal liver functions for the first time in many years made were truly amazing.
All the best in an easy and happy treatment and a 2019 free from HCV
Cheers

Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline ODAAT

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  • Going for the CURE
Re: Started Epclusa today 2/1/2019
« Reply #6 on: February 04, 2019, 08:41:13 am »
Hi Eric, thanks for your support.  Its good to know a fellow fisherman has gone for the cure and made it.  Hook to the head and all...  8)  Congratulations.  My Day 3 was spent close to the toilet.... yikes.  I had an upset stomach most of the day and cleared out a lot of stuff.  I'm drinking lots of water as suggested by others.  I feel better today on Day 4.  I suppose its all part of the process.  I'm going to take your suggestion and start exercising on a daily basis.   Beginning slowly of course.  Several months ago, I was real active and this thing hit me all of a sudden, like a freight train, knocked my for a loop.  I was tired all the time.  That's when I went to the doctor to get blood work and was diagnosed with HVC.  It seems I've had since the mid 80's.  My diabetes (type 2) went wacky and my blood sugar shot up to 360 and would not come down with pills... my internal medicine doctor has me on a sliding scale with insulin as a backup plan.  Surprisingly, in the last month, I've gained some weight back (10 pounds) and my blood glucose has been more manageable.  So, that's it for now.  My daily day by day online journal may seem boring, but hopefully it may help others to make a decision to get treatment for this virus.  Thanks again, Joe
HCV - contracted 1980's diagnosed 1/2019
Genome 2b
VL 5,790,000 
Fibrosis score .36
Fibrosis stage F1 - F2
ALT 161 AST 64

4 Week report.
VL "<15 IU/mL, Detected”
ALT 24 AST 22

Treatment 12 weeks Epclusa started on 2/1/2019
#thecure #slaythedragon #onedayatatime

Offline ODAAT

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  • Posts: 12
  • Going for the CURE
Re: Started Epclusa today 2/1/2019
« Reply #7 on: February 05, 2019, 08:59:04 am »
Hello All, Day 5 has started.  Yesterday was two days in a row with nausea, mild headache, and diarrhea.... yikes.  Today, so far, is much better.  Just say NO to loose stools...haha.  Just kidding of course, the treatment is no joking matter but maintaining a positive attitude is going to be my thrust for the cure.  I took a number of short walks yesterday and it seemed to improve my energy level.  The weather here is real nice and that helps.  It was sunny and 72 yesterday and today is predicted to be the same.  Sunshine and fresh air for today too.  Ok, thats it from my neck of the woods.  Thanks for the forum.
HCV - contracted 1980's diagnosed 1/2019
Genome 2b
VL 5,790,000 
Fibrosis score .36
Fibrosis stage F1 - F2
ALT 161 AST 64

4 Week report.
VL "<15 IU/mL, Detected”
ALT 24 AST 22

Treatment 12 weeks Epclusa started on 2/1/2019
#thecure #slaythedragon #onedayatatime

Offline dandyindeed

  • Member
  • Posts: 14
  • Retired in Colorado *hits blunt
Re: Started Epclusa today 2/1/2019
« Reply #8 on: February 06, 2019, 01:52:44 pm »
I"m starting my Epclusa rx today 2/6/2019 in about 39 minutes.... i'm scheduling 12:30.    Then I have to take my Prilosec 4hrs later.   

It's nice to meet you. 
Type 1
Dx'd 1995

No liver damage
Started Epclusa 2/6/19

Offline dandyindeed

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  • Posts: 14
  • Retired in Colorado *hits blunt
Re: Started Epclusa today 2/1/2019
« Reply #9 on: February 06, 2019, 02:02:33 pm »
I had a metallic taste before on a med but I just opted for a diff med.    The smell of microwave popcorn  gave me a metallic taste.   Cheap chocolate bars and processed foods were notorious  for tasting like metal.    I couldn't stand hydrogenated oils.   

Hmmm... I wonder if that will happen to me again.   
Type 1
Dx'd 1995

No liver damage
Started Epclusa 2/6/19

Offline ODAAT

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  • Posts: 12
  • Going for the CURE
Re: Started Epclusa today 2/1/2019
« Reply #10 on: February 06, 2019, 02:43:46 pm »
Day 6 

Hi dandyindeed, thanks and welcome.  I hope your Epclusa treatment goes well.  Mine so far has had minimal side effects. Headache, nausea, and two days of diarrhea. I drink lots and lots of water every day.  No heartburn yet.  I did have trouble sleeping last night... slept for 3 hours and woke up.. tossed and turned the rest of the night. I hope it passes..  We shall see.  I noticed in the morning when I take the pill at 6am, I get the jitters soon after for about 4 to 5 hours.  Just nervous energy.  I really try to stay  busy and get things done. I started taking walks (2 miles today) and I get outside as much as possible to clear my head.  Also, I've gotten used to the metallic taste, its not so bad. Best of luck, Joe
« Last Edit: February 06, 2019, 02:48:58 pm by ODAAT »
HCV - contracted 1980's diagnosed 1/2019
Genome 2b
VL 5,790,000 
Fibrosis score .36
Fibrosis stage F1 - F2
ALT 161 AST 64

4 Week report.
VL "<15 IU/mL, Detected”
ALT 24 AST 22

Treatment 12 weeks Epclusa started on 2/1/2019
#thecure #slaythedragon #onedayatatime

Offline dandyindeed

  • Member
  • Posts: 14
  • Retired in Colorado *hits blunt
Re: Started Epclusa today 2/1/2019
« Reply #11 on: February 06, 2019, 03:22:34 pm »
Since i'm 5 days behind you, we'll just have to be  new best friends!  hahaha.    It really is nice to meet you.    I was gona make an OP saying the same thing you said … so I figured no need for a duplicate.    Don't mean to derail your thread. 
« Last Edit: February 07, 2019, 10:26:42 am by dandyindeed »
Type 1
Dx'd 1995

No liver damage
Started Epclusa 2/6/19

Offline ODAAT

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  • Going for the CURE
Re: Started Epclusa today 2/1/2019
« Reply #12 on: February 07, 2019, 08:21:16 am »
Day 7 (1 week of 12 weeks)   Good Morning.  So far so good... typical hyper morning after taking the pill. It makes me edgy to say the least but I'm not complaining for real. I'm still having an upset stomach and slight headache.  So far, these are the typical daily side effects unless others show up along the way.  I slept fairly well last night.  I took a benadryl for seasonal allergies and it makes me sleepy.  I'm drinking lots of water with 2 cups of coffee, toast, and scrambled eggs for breakfast.   On another note, my gastro doctor has scheduled me for a 4 week followup visit.  I imagine he will want to take blood-work.  So, I'm scheduled for March 4th, 2019.  That's it from me for today.  Morning walk up next... later. Its a beautiful day in the low country of SC.
 
Dandyindeed, I hope your first day went well.
HCV - contracted 1980's diagnosed 1/2019
Genome 2b
VL 5,790,000 
Fibrosis score .36
Fibrosis stage F1 - F2
ALT 161 AST 64

4 Week report.
VL "<15 IU/mL, Detected”
ALT 24 AST 22

Treatment 12 weeks Epclusa started on 2/1/2019
#thecure #slaythedragon #onedayatatime

Offline dandyindeed

  • Member
  • Posts: 14
  • Retired in Colorado *hits blunt
Re: Started Epclusa today 2/1/2019
« Reply #13 on: February 07, 2019, 10:24:36 am »
Good morning indeed!   I was edgy yesterday but I woke up that way.    I'm quitting smoking and on a med that will helps w/ sleeping.      I"m drinking  diluted grape juice which is really enhancing my compliance with water.     


Not one issue so far.    Next pill due in 8hrs.   I'm so excited!   This has taken me since last august to get going. 
:

I already have my 4 week visit scheduled with md and two lab visits : one in march and one in may.   
« Last Edit: February 07, 2019, 10:28:21 am by dandyindeed »
Type 1
Dx'd 1995

No liver damage
Started Epclusa 2/6/19

Offline ODAAT

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  • Posts: 12
  • Going for the CURE
Re: Started Epclusa today 2/1/2019
« Reply #14 on: February 08, 2019, 06:45:55 am »
Day 8.... Good Morning.  Yesterday was a little bit rough.  Same morning jitters and mild headache but in the afternoon around 3pm nausea (puked) had a pounding headache, irritable, and slight depression most of the day... I took Tylenol, drank diet ginger ale (diabetic) and lots of water.  It seemed to help.  Did not sleep very well.  So, hopefully, today will be better.  Self care is everything it seems.  One day at a time.  This too shall pass. 

“Starbucks says they are going to start putting religious quotes on cups. The very first one will say, ‘Jesus! This cup is expensive!'”
« Last Edit: February 08, 2019, 08:03:29 am by ODAAT »
HCV - contracted 1980's diagnosed 1/2019
Genome 2b
VL 5,790,000 
Fibrosis score .36
Fibrosis stage F1 - F2
ALT 161 AST 64

4 Week report.
VL "<15 IU/mL, Detected”
ALT 24 AST 22

Treatment 12 weeks Epclusa started on 2/1/2019
#thecure #slaythedragon #onedayatatime

Offline Sierraglee

  • Newbie
  • Posts: 2
Re: Started Epclusa today 2/1/2019
« Reply #15 on: February 09, 2019, 01:51:28 pm »
Good morning all, so happy to have found this website.  I started taking Epclusa on 1.31.19. Going on day 10 of the 12 weeks regimen.  The first few days experienced a headache and slight dizziness.  What is the recommended time to take medication? Currently, I am taking the med in the evening between 7 and 8pm.  My concern is that in the last couple of days, I am having shortness of breath.  I spoke with the pharmacist and he indicated this is not a common side effect.  What are your thoughts?  Thanks

Offline andrew j

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Re: Started Epclusa today 2/1/2019
« Reply #16 on: February 09, 2019, 05:34:48 pm »
Hi Sierraglee,

Drinking plenty of water can help with that dizziness, and those [hopefully mild and transient] headaches.
I had some shortness of breath during Tx (Harvoni) - and I've heard of it happening to others.
... It's part of that slightly high feeling that can come after taking your pill (='Harvoni High').
If it's a more pronounced thing - get it checked out - as shortness of breath can indicate some serious medical conditions.

I took my pill at about 9 p.m. with dinner - and sort-of wished I'd taken it in the morning, in order to benefit from the above surge in energy - but it worked out fine
anyway.
You can [slowly] shift the time you take your pill if you want to.
I was too scared to do that.

Hoping that you're doing OK today.

A.


Offline Sierraglee

  • Newbie
  • Posts: 2
Re: Started Epclusa today 2/1/2019
« Reply #17 on: February 09, 2019, 06:22:32 pm »
Hi A,
Thanks for your feedback and being mindful in drinking more water on a daily basis.  As far as the shortness of breath.  I was recovering from bronchitis that might not have fully cleared up.  I had an appt with a dermatologist about my skin rash prior to being dx w/ hep c that has been ongoing for the last 4 years.  I asked the doctor if this was related to the inflammation from contracting hep C.  She did not think so and prescribed Prednisone for the itching.  Funny, how the universe works and actually Prednisone is prescribed for breathing problems.  I went ahead and scheduled an appt to see my primary this coming Mon.  By the way, I looked at other hep C support websites and came across the skin condition; Pruritus which is a common symptom of hep C.  I was beginning to think I was a nut case knowing I am not imaging my symptoms.  I further researched herbal supplement; liver support and detox on Amazon and had good reviews.  Thanks so much for your support.  Glenda 

Offline ODAAT

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  • Posts: 12
  • Going for the CURE
Re: Started Epclusa today 2/1/2019
« Reply #18 on: February 10, 2019, 07:35:24 am »
Good Morning All, Day 10 Epclusa diamond pill .... Not much to report, side effects seem to be more tolerable.  Drinking lots of water, ginger ale, hot green tea, walking and light stretching daily.  Eating small meals. Hopefully, my body and mind is adjusting, and my liver is healing.  I've had some emotional bouts lately.... ups and downs... hope they level out.  Deep slow breathing meditations helps to center.  One day at a time. :D  All in all, may the universe of love heal us.
« Last Edit: February 10, 2019, 07:37:20 am by ODAAT »
HCV - contracted 1980's diagnosed 1/2019
Genome 2b
VL 5,790,000 
Fibrosis score .36
Fibrosis stage F1 - F2
ALT 161 AST 64

4 Week report.
VL "<15 IU/mL, Detected”
ALT 24 AST 22

Treatment 12 weeks Epclusa started on 2/1/2019
#thecure #slaythedragon #onedayatatime

Offline dandyindeed

  • Member
  • Posts: 14
  • Retired in Colorado *hits blunt
Re: Started Epclusa today 2/1/2019
« Reply #19 on: February 10, 2019, 04:17:21 pm »
Took  " day number 5 pill " and so far I've got nothing in terms of side effects.    Every day so far has been just a normal day .   




« Last Edit: February 10, 2019, 04:20:05 pm by dandyindeed »
Type 1
Dx'd 1995

No liver damage
Started Epclusa 2/6/19

Offline ODAAT

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  • Posts: 12
  • Going for the CURE
Re: Started Epclusa today 2/1/2019
« Reply #20 on: February 13, 2019, 11:44:04 am »
Good Morning All, Day 13... so far so good.  Steady as she goes.  Side effects has eased off.  One day at a time. 
HCV - contracted 1980's diagnosed 1/2019
Genome 2b
VL 5,790,000 
Fibrosis score .36
Fibrosis stage F1 - F2
ALT 161 AST 64

4 Week report.
VL "<15 IU/mL, Detected”
ALT 24 AST 22

Treatment 12 weeks Epclusa started on 2/1/2019
#thecure #slaythedragon #onedayatatime

Offline dandyindeed

  • Member
  • Posts: 14
  • Retired in Colorado *hits blunt
Re: Started Epclusa today 2/1/2019
« Reply #21 on: February 14, 2019, 09:36:48 am »
Today I will take my 9th pill.     There's really nothing to say about it.   It's all completely and wonderfully boring.    I have zero need for emotional support and have no need to share.

I no longer wonder why these forums aren't hopping 24/7 with activity.     I"m out. 
Type 1
Dx'd 1995

No liver damage
Started Epclusa 2/6/19

Offline KimInTheForest

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  • Believe in yourself
Re: Started Epclusa today 2/1/2019
« Reply #22 on: February 14, 2019, 10:34:12 am »
Good Morning All, Day 13... so far so good.  Steady as she goes.  Side effects has eased off.  One day at a time.

That's great, ODAAT. May the rest of your treatment journey be smooth sailing for you. Wishing you the best. :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Lynn K

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  • Member
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  • Get tested, get treated, get cured, fight Hep c!
Re: Started Epclusa today 2/1/2019
« Reply #23 on: February 14, 2019, 05:06:42 pm »
Hey dandy glad to hear all is going well with you best of 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 ODAAT

  • Member
  • Posts: 12
  • Going for the CURE
Re: Started Epclusa today 2/1/2019
« Reply #24 on: February 15, 2019, 08:28:40 am »
Good Morning All, Day 15...  one day at a time.  I found an informative article about taking Epclusa.  Here it is if you're interested.

https://www.generichepatitiscdrugs.com/tips-for-taking-epclusa/

Give yourself a wonderful day.  Thanks for the forum.
HCV - contracted 1980's diagnosed 1/2019
Genome 2b
VL 5,790,000 
Fibrosis score .36
Fibrosis stage F1 - F2
ALT 161 AST 64

4 Week report.
VL "<15 IU/mL, Detected”
ALT 24 AST 22

Treatment 12 weeks Epclusa started on 2/1/2019
#thecure #slaythedragon #onedayatatime

Offline dandyindeed

  • Member
  • Posts: 14
  • Retired in Colorado *hits blunt
Re: Started Epclusa today 2/1/2019
« Reply #25 on: February 19, 2019, 02:33:26 pm »
Today is pill # 14 and I gotta say I feel SO  much better already.    Seems like I'm not so worn out for the day by 2pm .    If anything, i'm tired from being more active.   


a couple of times I had shades of a headache but that just reminded me to drink fluids and nothing ever came of the headache.   


Life is good.     
Type 1
Dx'd 1995

No liver damage
Started Epclusa 2/6/19

Offline andrew j

  • Member
  • Posts: 475
Re: Started Epclusa today 2/1/2019
« Reply #26 on: February 23, 2019, 06:15:17 pm »
G-R-E-A-T!!!

Offline Nina Mae

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  • Posts: 50
Re: Started Epclusa today 2/1/2019
« Reply #27 on: March 05, 2019, 04:30:04 am »
Hello!

I, too, started Epclusa on March 1, 2019 but I take Ribavirin too.  I was trying to find out about the side effects and whether they start immediately or do they work on an accumulative effect?  I'm not being cavalier by any means but I've had very minor side effects...they're so minor, I'm not even sure I'd say it was from the HCV drugs or the damn Hep C itself.

Not sure how to post this in a signature but stats of my HVC are as follows:

Dx'ed:  Nov 2019 Hep C and Cirrhosis
Genotype: 1a
F4-TN-44

One report said I have a decompensated liver; Nurse Practitioner said it's Compensated.

I was asymptomatic up until Sept 2018.  Had no clue until I swelled up like a blowfish from edema...thought I had a bad case of the flu; vomiting with such force, I threw my hip out; diarrhea for days. 

I'm a breast cancer survivor:  stage 3 inoperable breast cancer in 2003 and I'm still here telling you all about it.  We are warriors; we will beat this.

You're spot on about positive thinking...it's what helped me beat cancer!

We're gonna nuke this Hep C.  We have one of the best DAA's available as Epclusa can treat most (if not, all) genotypes with or without cirrhosis.

I'm also tired but I'm anemic from Hep C anyway (or cirrhosis, not sure) but I take walks throughout the day.  I still manage to get over 10k per day and I'm very grateful for that.  I won't push it too hard; that would be counter-productive.

I've lost way too much weight.  Before this started, I weighed 133 lbs (5'2.5"); now I weigh 117.6 and it appears I'm dropping weight almost daily.  I eat every 2 hrs because I get painfully hungry (or am I nauseous?  Not sure what is normal anymore).But I try to stay below 2000 mg sodium because of the edema and fattening things have loads of sodium.

Sorry about rambling...glad I found this forum.  It's so devastating and so many people know nothing about this...
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  HCV RNA:  Undetected

Offline Lynn K

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Re: Started Epclusa today 2/1/2019
« Reply #28 on: March 05, 2019, 04:59:29 am »
Decompensated cirrhosis is when you are having symptoms like ascities, esophageal varicies and hepatic encephalopathy. So if you are not having those just lower leg swelling called edema sounds like you are still compensated.

Ribavirin is the ie with more side effects. Many people have lowered HGB (hemoglobin) from ribavirin some will develop a bad rash we used to call riba rash wherefor dime it was sever enough they had to stop taking it but thankfully that was only a small percentage that had that side effect. Also some people became a little easier to get angry from Riba so be on the look out for those sides.

As far as the weight thing at 5’ 2.5” and 133 that is in normal range for BMI but a little on the high side of normal BMI 23.9 with 25.0 the beginning of the overweight range. A weight at 117 puts you at a BMI of 21.1 about exactly in mid range normal. Normal BMI range is 18.5 to 24.9 you would have to weigh less than 103 to be on the beginning of underweight range BMI
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 Nina Mae

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Re: Started Epclusa today 2/1/2019
« Reply #29 on: March 05, 2019, 05:21:01 am »
Well, I have one minor esophagael varix which was not banded because it's not bleeding...instead, I'm o Naldolol for BP (beta blocker); I have an umbillical hernia, and ascites, and a tendency for edema but I take diuretics which is controlling it beautifully. but I am not jaundice nor have hepatic encephalopathy.  My hepatologist seems to think the esophagael varix will repair itself after curing HCV.

I have noticed that my fuse is short but I thought it was because of stress starting a new drug regime for another serious illness.  I was never a good sleeper but I do think I may have a bit of insomnia...it's 2:20 am and it might as well be 2:20 PM...I have no sleep in me.
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  HCV RNA:  Undetected

Offline Lynn K

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Re: Started Epclusa today 2/1/2019
« Reply #30 on: March 05, 2019, 12:20:01 pm »
On my first upper EGD I had grade 1 varicies, two years later they were grade 2. The next year they were further enlarged to grade 3 no bleeding signs and my doctor initially wanted to use a bata blocker but the  goal of beta blocker is to reduce the heart rate below 60 bpm and thus reducing pressure however my heart rate is already below 60 bpm normally so we could not use a beta blocker for me. This is why we went with the banding.

Jaundice is more so associated with an acute hepatitis infection or other acute liver injury occurring or in very late stage cirrhosis. In compensated and early decompensated cirrhosis normally jaundice is not a consideration which is why I didn’t mention it as a symptom of decompensation.

We called that short fuse at some of us experienced Riba rage.
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 Nina Mae

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Re: Started Epclusa today 2/1/2019
« Reply #31 on: March 05, 2019, 02:30:00 pm »
Lynn, you are a wealth of information!  Thank you so much for holding my hand through this time.

Compensated, decompensated...it really doesn't make a difference as I know my liver is in poor shape.  But like you said, curing the HCV may mitigate progression and possibly reverse some of the issues.

I'm just gonna keep doing what they instruct me to do and not do and let the chips fall where they will; we can control our knowledge, attitude, and choices.  Our best defence is being our own advocates.

I know this is chronic...it sucks but I'm not going to allow Hep C or Cirrhosis occupy my mind for the rest of my life or worry about the future and what will happen.

While I'm here on this earth, and providing I feel well enough after treatment, I'm going to be free and be able to prioritize everything because right now, it's all about this Hep C, cirrhosis, and meds and side effects and what the hell these tests really mean?

I'm grateful to have 'Riba Rage' for now...it's only 12 weeks and recovery.  I'll be fine.
We'll all be fine providing we do exactly what the dr's tell us to do.  I'm lucky as I can take the beta blockers; acclimating to that was beating me up...it slowed my heart rate down so quickly, that I was getting dizzy (resting BPM=43; corpse-like, lol).
« Last Edit: March 05, 2019, 02:31:36 pm by Nina Mae »
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  HCV RNA:  Undetected

Offline Lynn K

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Re: Started Epclusa today 2/1/2019
« Reply #32 on: March 05, 2019, 08:38:00 pm »
Yeah I’m kind of glad my hr was low I feel better about having had the varicies banded vs beta blockers
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 ODAAT

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  • Going for the CURE
Re: Started Epclusa today 2/1/2019
« Reply #33 on: March 09, 2019, 08:11:00 am »
Day 37 Epclusa. *Update* I got my 4 week printed results today. HVC RNA detected but below <15 IU/ML. Viral load was 5,790,000 on day 1.

Liver enzymes AST 22 / ALT 24 was AST 64 / ALT 161 on day 1.

It all looks very promising to me. So, my research came up with the following...

Quote
"The result “<15 IU/mL, Detected” means that HCV RNA is detected, although at a level (<15 IU/mL) that is too low to be quantified. ... If the viral load is just at or above this LOD, but less than 15 IU/mL, the assay can determine that HCV RNA is present but cannot provide a reliable quantitative result"

The doctor was very positive and said to complete the treatment and we will test again in 47 days.  By the way, my side effects have slowly subsided and my body has adjusted to the medication.  My mind seems a lot clearer and my depression is lifting every day. 
« Last Edit: March 09, 2019, 08:34:31 am by ODAAT »
HCV - contracted 1980's diagnosed 1/2019
Genome 2b
VL 5,790,000 
Fibrosis score .36
Fibrosis stage F1 - F2
ALT 161 AST 64

4 Week report.
VL "<15 IU/mL, Detected”
ALT 24 AST 22

Treatment 12 weeks Epclusa started on 2/1/2019
#thecure #slaythedragon #onedayatatime

Offline Lynn K

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Re: Started Epclusa today 2/1/2019
« Reply #34 on: March 09, 2019, 11:16:28 am »
That is a common result at 4 weeks on treatment. On treatment viral load testing is mostly to confirm patient compliance with treatment.

The only test that matters is the 12 weeks after treatment has ended. We had a couple of people here who were weakly detected at EOT and 4 weeks post but were able to achieve SVR 12 and remain cured today.

You’re doing fine, 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 Nina Mae

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Re: Started Epclusa today 2/1/2019
« Reply #35 on: March 11, 2019, 03:03:28 am »
I just finished day 10 of Epclusa/Ribavirin combo.  i am so happy to share that I had two marvellous days where I actually felt pretty awesome!

I kinda expect things to get more challenging as I get further into treatment but wanted to share this with anyone who will read this!  Brief, it likely is, it still gives me the sense of how things will be again...soon.

Quick question:  My two week blood work is coming up on Friday.  Doe the HCV coordinator go over your lab results with you?  How do we get access to these and who can interpret them for us?  I'm up here in Vancouver, BC.

Congrats to dandyindeed and ODAAT for their accomplishments!

Inquiring minds :)
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  HCV RNA:  Undetected

Offline Lynn K

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Re: Started Epclusa today 2/1/2019
« Reply #36 on: March 11, 2019, 03:32:37 am »
As far as do they go over your results I assume it will vary from one practitioners office to another.

How do you normally access your results and revive interpretation of your results? I assume it would be the same. Does your provider have an online system to access your labs?

We can also probably help you to understand your results. What you will likely see are your liver enzymes in normal range and you may see your HCV RNA by PCR result reported as “NOT DETECTED” this test may also be referred to as your viral load. You may be weakly detected bit your viral load will be greatly reduced to possibly not detected.

Best of uck
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 Nina Mae

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  • Posts: 50
Re: Started Epclusa today 2/1/2019
« Reply #37 on: March 11, 2019, 03:43:28 am »
Thanks, Lynn.  I'm kind of sure that the Hep C Coordinator/Nurse who orders the tests would get the results, I suppose.

This is unchartered waters because here, once you are approved to the program, your dr isn't involved until after treatment unless there are complications with meds  so I'd report it to nurse then she'd go to dr for medicine adjustments (I guess).

So I think I just answered my own question:  the nurse would likely gather the results and go over with them with me (I hope).

Thanks for your generous offer to help me understand the results.  The ALT (?) and AST (?) are the cancer markers? 

As always, thanks for your help!   :)
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  HCV RNA:  Undetected

Offline Lynn K

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Re: Started Epclusa today 2/1/2019
« Reply #38 on: March 11, 2019, 04:40:03 am »
ALT and AST are liver enzymes they slightly are elevated in most people with hep c

Elevated liver enzymes simple indicates something is bothering your liver be it taking too much Tylenol, drinking too much alcohol, having a fatty liver or having hepatitis A or B or hepatitis C those can all cause an elevation of ALT AST liver enzymes above normal range as well as some other causes

The possible liver cancer marker is AFP alphafeto protine. It is not a perfect diagnostic tool and is used along with abdominal ultrasound to monitor for possible early signs of liver cancer aka HCC or heptocellular carcinoma.
« Last Edit: March 11, 2019, 04:42:34 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 Nina Mae

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Re: Started Epclusa today 2/1/2019
« Reply #39 on: March 11, 2019, 03:57:16 pm »
Again, thank you for explaining those liver enzymes!

A few quick questions:

1)  Other than a liver biopsy, is/are there a test(s) that are not subjective to screen for HCC?  I worry about my weight loss.

2)  I see that you and others post their platelet count in their signature.  What significance do the platelets play in this? 

3)  What test results would I, personally, want to monitor closely?

Thank you!   :)

Day 11:  Epclusa/Ribavirin
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  HCV RNA:  Undetected

Offline Mugwump

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Re: Started Epclusa today 2/1/2019
« Reply #40 on: March 11, 2019, 05:28:17 pm »
Again, thank you for explaining those liver enzymes!

A few quick questions:

1)  Other than a liver biopsy, is/are there a test(s) that are not subjective to screen for HCC?  I worry about my weight loss.

2)  I see that you and others post their platelet count in their signature.  What significance do the platelets play in this? 

3)  What test results would I, personally, want to monitor closely?

Thank you!   :)

Day 11:  Epclusa/Ribavirin
Your doctor should be carefully monitoring your red blood cell counts because you are on Ribavirin. I had to have my level of Ribavirin halved during my first treatment in 2003-4 because my red blood cell counts became dangerously low.
However a drop in platelets (not) red cells which can lead to thrombocytopenia (a dangerously low level of platelets) can also be associated with the old interferon treatment but not the new DAA treatments including the ones that are in combination with Ribavirin. 

Primarily the damage done by HCV can lead to problems with lower platelet levels and if you have a count that is over 150 you are within the normal range. It took a year as my liver healed for my platelets to return back over 150 as they were below 120 while I was on treatment and fell below that when I contracted a bad case of the flu close to end of treatment. Any number of problems can cause a drop in platelets and should be closely monitored especially for those of us who were past F3 or in a "pre-cirrhotic" state for any reason. 
AFP testing (link is to pubmed article about alphafetaprotein). AFP testing is routinely done to help rule out HCC if there are changes in CBC for those of us who have HCV or are undergoing treatment. Along with regular ultrasounds AFP, CBC (complete blood count) ALT, AST and Bilirubin are a standard set of tests for the treatment of chronic HCV both before and during treatment.

Sounds like you are in good hands and I am sure the doctor will gladly tell you the reasons for the tests and what they mean. Doctors that don't and have a pretentious bedside manor should be avoided because they can scare the crap out of patients. I was very fortunate and was never treated that way by either my GP or the specialists that I have dealt with to rid myself of HCV.
All my best
Eric
« Last Edit: March 11, 2019, 05:37:56 pm by Mugwump »
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Nina Mae

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Re: Started Epclusa today 2/1/2019
« Reply #41 on: March 11, 2019, 05:54:42 pm »
Hi Eric!

Thank you for sharing your knowledge.  I have a standing order for blood work every two weeks for the next year.  Tests ordered are:  "prn-CBC, diff, platelets, ALT, AST, T bili, INR, PTT, alk phos, D Bili, albumin, Na, K, creatinine".  Then "q 6 monthly AFP".

So I think they're on it...I know I was anemic at the time of dx so I'm hoping that one of these tests check for that.

I understand that I have the bloodwork done and they contact me re: changes.

I'm sorry that we all had/have to go through this but I'm so grateful for the treatments and this forum! 

All the best...
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  HCV RNA:  Undetected

Offline Lynn K

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Re: Started Epclusa today 2/1/2019
« Reply #42 on: March 11, 2019, 09:50:53 pm »
Again, thank you for explaining those liver enzymes!

A few quick questions:

1)  Other than a liver biopsy, is/are there a test(s) that are not subjective to screen for HCC?  I worry about my weight loss.

2)  I see that you and others post their platelet count in their signature.  What significance do the platelets play in this? 

3)  What test results would I, personally, want to monitor closely?

Thank you!   :)

Day 11:  Epclusa/Ribavirin

1)  Other than a liver biopsy, is/are there a test(s) that are not subjective to screen for HCC?  I worry about my weight loss.

For those of us with cirrhosis we are monitored for early indictations of HCC with the AFP blood test which would likely climb to the several hundreds in liver cancer and abdominal ultrasounds looking for tumors. If something is seen they would probably then use MRI to investigate further. They really wouldn’t want to do a liver biopsy as this could seed any cancerous cells two other areas of the liver and perhaps in the bloodstream.

2)  I see that you and others post their platelet count in their signature.  What significance do the platelets play in this? 

Thrombocytopenia simply means low platelet count so if your platelet count is below normal of 150 you have thrombocytopenia. A low platelet count is associated with worsening liver disease. If you have cirrhosis and cannot treat the underlying cause the liver will become more scarred over time. This scarring will eventually cause higher blood pressures to develop in the main liver vein the portal vein because of increasing difficulty for blood to travel through the liver because of this increasing fibrosis. This inturn causes the spleen to enlarge and begin to  sequester aka hold onto platelets thus removing them from the blood stream so you will see lowering of platelet counts. If a patient becomes severely platelet deficient as low as 50 or even 30
the treatment would be a transfusion of platelets or even removal of the spleen.

Another consequence of increasing portal hypertension is the development of esophageal varicies Which are enlarged blood vessels in the swallowing tube. If they become enlarged enough this can result in a possibly life-threatening bleeding event. Esophageal varices are diagnosed with upper endoscopy.

3)  What test results would I, personally, want to monitor closely?

As Mugwump said since you are taking ribavirin you will want to monitor your hemoglobin level which is one of the results on your CBC (complete blood count) test. Becoming anemic (low hemoglobin or HGB) while taking ribavirin is a common side effect. If your HGB falls too low your doctor will need to reduce your dose of ribavirin.

But really if you see any test that is newly out of normal range especially if significantly out of normal range you should ask your care team about it.

Really like I said your liver enzymes will probably be normal on your first blood tests and likely your only concern on treatment t likely would be the HGB because of ribavirin. If you do experience low HGB you will probably feel a lack of energy and easily winded on exertion like climbing stairs etc.
« Last Edit: March 11, 2019, 09:54:02 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 Nina Mae

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  • Posts: 50
Re: Started Epclusa today 2/1/2019
« Reply #43 on: March 15, 2019, 01:22:53 am »
Once again today, I thank the internet gods for this forum.  I'm so sorry that we all have these wretched diseases altogether.

So if I have it straight, I would likely be most interested in monitoring the liver enzymes and HGB and CBC.  Platelets should be at least 150 but not surprising if they're low initially but continue to increase during/after treatment.

They did schedule me for an ultrasound for March 30 because of my concerns re: HCC being a cancer survivor (2003).  And they scheduled this to be done at the hospital because those techs will know exactly what we're looking for.  I'm sure an AFP test was done during initial dx testing.

Nurse said she'd email my results to me and I have an appointment with my GP on March 21 who is cc'ed with everything so I plan on picking her brain too.

Thank you, everyone, for helping me out again!

My very best wishes for all of us to at least feel good.

Nina
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  HCV RNA:  Undetected

Offline Lynn K

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Re: Started Epclusa today 2/1/2019
« Reply #44 on: March 15, 2019, 02:01:15 am »
My platelets were low several years before I treated because of my portal hypertension as a consequence of having liver cirrhosis for maybe 5 years when I learned my platelet count was low. Since my hep c is now cured I take my improving platelet count to be a possible indication of some small improvements in my liver fibrosis. Maybe not enough to show on a Fibroscan but maybe some small restructuring of my liver scarring.

A low platelet count is not associated with treatment it is caused by advanced liver disease

Your HGB (hemoglobin) may be affected by ribavirin it is one of the test results found on a CBC (complete blood count) test. There are many test results found on a CBC white blood cell count, red blood cell count, hemoglobin, hematocrit, mean corpuscle volume, platelet count and a few other results will be found on a CBC test report.

Do you know your current platelet count? Does your doctor have a web based application where you can see your labs results? Many of us either have online access to our test data or get hard copies of our labs. You could go to your doctors office and request your labs test results. They are your tests you are entitled to your data.
« Last Edit: March 15, 2019, 02:11:21 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!

 


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