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Author Topic: Starting Epclusa on Tuesday  (Read 150206 times)

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Offline andrew j

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  • Posts: 477
Re: Starting Epclusa on Tuesday
« Reply #100 on: October 23, 2016, 09:21:46 pm »
I was full-blown symptomatic for years, Elias - incl. anxiety (of course).
Sleep was shallow, fitful and patchy for all of those years.
Vulnerability.

As treatment progressed, my sleeping got better, and now, 5 months post-treatment,
I'm sleeping like a baby - albeit, an aging and slightly wrecked baby!
Hopefully the same might happen for you?

P.S. I lost touch with you a bit there.
I had hoped your approval would be reasonably straight-forward?!

Offline elias

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  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #101 on: October 23, 2016, 09:33:56 pm »
Andrew:

The approval in my own appeal case was straightforward. Took only~ 3 days!!

My point was that they might not have gone along with the appeal so readily had there not been an overall climate of courts ruling in favor of patients in such cases. And for that I thank the advocacy movement.

I dont think my chronic insomnia is due to Hep C. I can think of many early life events that had brought it on , but dont know for sure. Since I've had the virus most of my life
« Last Edit: October 23, 2016, 09:40:36 pm by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline andrew j

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  • Posts: 477
Re: Starting Epclusa on Tuesday
« Reply #102 on: October 23, 2016, 10:07:02 pm »
Yes - I got that.

... Well then - just hoping that your sleeping gets better.
Insomnia: It's a bad business.

Thinking of you,
A.



Offline elias

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Re: Starting Epclusa on Tuesday
« Reply #103 on: October 23, 2016, 10:18:32 pm »
It's not just insomnia, Andrew. Its a lopsided circadian rhythm whereby my natural tendency is to be up all night and im always tired in the morning.

If it should turn out this might be some obscure symptom of HCV and it resolves as liver heals some, this would be quite an added boon.
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline andrew j

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  • Posts: 477
Re: Starting Epclusa on Tuesday
« Reply #104 on: October 23, 2016, 11:28:25 pm »
Yes ...

Is your condition understood in the medical world?

Offline elias

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Re: Starting Epclusa on Tuesday
« Reply #105 on: October 24, 2016, 12:08:58 am »
well, it does have some medical name: "Delayed Sleep Phase Disorder", but that doesnt mean they really understand it. many treat it with melatonin and/or special type lamps. i simply find ways to work around it
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline andrew j

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  • Posts: 477
Re: Starting Epclusa on Tuesday
« Reply #106 on: October 24, 2016, 12:16:17 am »
Yeah ...

Offline bluebird

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Sos, forgot to take epclus at noon
« Reply #107 on: October 24, 2016, 07:58:24 pm »
What should I do?  Scared!!!! Does anyone know?
« Last Edit: October 24, 2016, 08:00:27 pm by bluebird »
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline andrew j

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Re: Starting Epclusa on Tuesday
« Reply #108 on: October 24, 2016, 09:21:46 pm »
Don't know what time it is in the U.S.
I'm in New Zealand.

The liner notes that come with the meds will tell you.

Harvoni: I think it was take if you are within 18 hrs of yr. normal dose, otherwise wait, and take at your regular time [tomorrow].
Epclusa - I'm not so sure.

If you haven't got time to ring Gilead (or it's outside of hours) and you're say 8 hrs or so late, I'd be inclined to just take it now, and resume normally tomorrow.

Not gospel - but a reas. good guess, I think.

Offline elias

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Re: Starting Epclusa on Tuesday
« Reply #109 on: October 24, 2016, 09:30:03 pm »
Bluebird:

From Gilead Onward Program:

"Make sure to talk to your Hep C Specialist if you have any questions about treatment. You can also talk to a live nurse 24/7 at 1‑844‑4‑EPCLUSA (1‑844‑437‑2587). "

So, it seems their nurse counseling is 24/7. They will ask you for lots of information, but well worth it in questions such as "missed dose
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline andrew j

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Re: Starting Epclusa on Tuesday
« Reply #110 on: October 24, 2016, 09:38:06 pm »
That's good advise, Elias.

(If you can't get through):

Bluebird - I've just checked two sources.

It's the same as for Harvoni (again - your liner notes will confirm this)

i.e. take if you are within 18 hrs. of yr. normal dose, otherwise wait until tomorrow's regular dose.

If my calculations are correct, you are now 9 1/2 - 10 or so hours late?

Offline Pepperann

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Re: Starting Epclusa on Tuesday
« Reply #111 on: October 24, 2016, 09:51:26 pm »
Just received my epclusa in mail today! Now what? Do I take at night? Or another time of the day? How do you drink water all night?
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Pepperann

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  • Posts: 48
Re: Starting Epclusa today
« Reply #112 on: October 24, 2016, 09:58:58 pm »
Trying to figure out how to post in this forum!
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline andrew j

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  • Posts: 477
Re: Starting Epclusa on Tuesday
« Reply #113 on: October 24, 2016, 11:12:55 pm »
Pepperann,

There is an initial or first page for this forum. It lists all the main subject headings (e.g. 'I just tested positive for Hep C ...', 'Considering Hep C Treatment', etc. ...).

Click on one of these subject headings, and another page will open up, with all the posts for that subject
(you will of course have seen one of these pages already) ...

At the top of the page is a paragraph headed 'Welcome'.
At the bottom of this para there are a few small boxes you can click on.
One of these is highlighted in blue, I think it is: 'New Topic'.
Click on that!

(Hope this makes sense?!) ...

Offline bluebird

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Re: Starting Epclusa on Tuesday
« Reply #114 on: October 24, 2016, 11:45:18 pm »
Thank you, guys, for advises. I posted it while on the phone with Gillead and briova( special pharmacy). I think I had a panic attack. Right after I finished my dinner suddenly I realized that I forgot to take a pill around lunch time, at work. It was so not like me, because I organize my day before the" magic" pill and after. I provide enough water last me till noon, and literally wait the time I will take this pill, then I go to lunch. Well, the weirdest part is not that I forgot to take it at 12, but I haven't thought about it after 12 at all. Normally, when I take epclusa I am trying to focus on my Condition and I notice if any changes or side effects occurs, but somehow not today.  Maybe it was what you call "brain fog"? Anyway, first thing I did called to Gillead and got a nurse, who was reading me an instruction on epclusa and it's side effects. I tried to stop her several times saying that I know all about it, but I need to know should I take it now( 6 hours delay) or wait till tomorrow noon? She said " I understand" and continued reading general info about epclusa. At the end she said she can't answer my question and I need to contact my doc or a pharmacist.i called briova rx and pharmacist told me to take it immediately ( 6.5 hours)delay. He also said an interesting thing that for the first 30 days delays like mine don't really matter, but try to avoid it in the future, after the first month of taking it. I am going to set an alarm in my iPhone, I feel like can't rely on my memory anymore...
« Last Edit: October 24, 2016, 11:53:21 pm by bluebird »
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline andrew j

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Re: Starting Epclusa on Tuesday
« Reply #115 on: October 24, 2016, 11:56:56 pm »
Phew!!

... Now I can relax!!


Offline rk

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Re: Starting Epclusa on Tuesday
« Reply #116 on: October 25, 2016, 02:44:40 am »
bluebird, I'm glad you got that handled. I would suggest to start a ritual of sort to make sure it does not happen again. Have something that leads up to taking the pill then check off that you took the pill. What ever you like. Personally have a small amount of yogurt or a banana then take the pill. Immediately after taking the pill I put a check mark on my calendar. Sometimes I may forget if I took a med but the check mark proves I did. Most med's I rely on memory but not epclusa. I prefer to think there is no room for error. I do not want to redo a course.

One may get answers using onward, may, however listening to their disclaimers is a test of patience. Good luck with that
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline bluebird

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Re: Starting Epclusa on Tuesday
« Reply #117 on: October 25, 2016, 09:40:55 am »
Thank you, RK!  I definetely will change something for not to repeat my mistake :D
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline Mw2324

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Re: Starting Epclusa on Tuesday
« Reply #118 on: October 25, 2016, 04:41:03 pm »
Bluebird,
    I agree with rk. I take mine immediately after or before dinner, whichever comes first at 530pm. But sometimes I go over and over in my mind, "did I take my pill?" Lol. Or another idea could be to get a weekly pill container for everyday of the week and set it out where you can see it. That way you can be sure you took it everyday and if you forget you'll see it and remember. You could put it near your toothbrush or something. Or set your phone alarm like you said.
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline andrew j

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  • Posts: 477
Re: Starting Epclusa on Tuesday
« Reply #119 on: October 25, 2016, 07:54:58 pm »
Pepperann,

I haven't noticed any posts from you.
... Maybe my instructions weren't that good?

Again - It's Go to the 'Subject Heading' board; click on the subject you want to post to (in your case it might be 'On Hepatitis C Treatment'.
... When that page / screen opens up, you'll [of course] see all the posts for that subject.
(You must have done this already in order to get in here!).
About 1/3 of the way down the page (at the bottom of the blue 'Welcome' paragraph at  the top of the page (and above the list of posts for that subject), are some small icons.
One is highlighted in blue: 'New Topic'.

... Don't know if that's any better than my first attempt?!

Anyway - in answer to your question:

It doesn't seem to matter when you take your Epclusa, AS LONG AS YOU TAKE IT AT THE SAME TIME EACH DAY.
... 'With or without food' ...

Some people seem to prefer taking these meds with food (It seems to dampen down any slight queasy feelings that may come up).
So it's up to you: Breakfast-time, with lunch, or dinner.
It used to be recommended to take DAAs (this class of meds) first-thing, with breakfast - but lots of people prefer lunch, or dinner time.
I used to take my meds (Harvoni) at night, with dinner (9 p.m.)

Without food is also OK  ...

Expect to feel thirsty - and drink however much water you want to (within reason, of course!) ...

(Everything you need to know is in the liner notes that come with the meds) ...

Hoping this helps.
Post again if you need to.

Best wishes,
A.

Offline bluebird

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Re: Starting Epclusa on Tuesday
« Reply #120 on: October 25, 2016, 08:31:12 pm »
Hello to everyone! You know what is funny? First thing I do after work( while cooking dinner ) is checking this site, on how are you doing and some new posts. We really became a family here, because we learn from each other. I noticed a lot of moderators here are more knowelegable than some Drs., because of personal experience they have gone through and constant updates with new research. But here is what  I was wondering about-Have you been told to be on special diet or have restricted foods since you were diagnosed with hep c and fibrosis/cirrhosis.? My doc told me I can eat anything I want, And no alcohol ( which I don't drink anyway), but I did my own research and found that diet is very important. For example, if you have damaged liver you should be avoiding salty foods, snacks, butter, sweets, cakes,red meat, fries, bacon, white bread and etc. I have a list on the fridge, if someone is interested I can post it here. I followed it for last month and lost ten lb. ( I weight now 108). I would like to hear your opinion about foods! Have a great eve!
« Last Edit: October 25, 2016, 10:16:04 pm by bluebird »
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline rk

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Re: Starting Epclusa on Tuesday
« Reply #121 on: October 25, 2016, 10:25:33 pm »
I did my own research and found that diet is very important. For example, if you have damaged liver you should be avoiding salty foods, snacks, butter, sweets, cakes,red meat, fries, bacon, white bread and etc. I have a list on the fridge, if someone is interested I can post it here. I followed it for last month and lost ten lb. ( I weight now 108). I would like to hear your opinion about foods! Have a great eve!

Bluebird

We should be avoiding them anyway but saying & doing can be two different things. Diet effects more than the liver but I get your drift. For the most part I do fairly well although I tend to overeat. Loosing 10 lbs in a month though is dedication especially for your size. I walk & exercise a fair amount and I am still working on the first ten lbs. :(  I am doing better) Glad to hear it is working for you.
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline elias

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Re: Starting Epclusa on Tuesday
« Reply #122 on: October 25, 2016, 10:27:18 pm »
Quote
My doc told me I can eat anything I want, And no alcohol ( which I don't drink anyway), but I did my own research and found that diet is very important. For example, if you have damaged liver you should be avoiding salty foods, snacks, butter, sweets, cakes,red meat, fries, bacon, white bread and etc. I have a list on the fridge, if someone is interested I can post it here. I followed it for last month and lost ten lb. ( I weight now 108). I would like to hear your opinion about foods!

Hi there, Bluebird:

I too am very interested in this. More broadly, in the larger issue of changes we can make even now to help our livers recover from fibrosis/cirrhosis after treatment .

Seems this often does happen anyhow, once the HCV is cleared. But to varying degrees. and unfortunately not all improve. So are there things we can be doing to optimize this healing? Intuitively, I think so.

Diet, exercise, stress reduction. Hopefully. We won't find as much scientific studies on this as on  more quantifiable epidemiology. Lifestyle changes are a bit harder to quantify and study than e.g. success rates in clearing the virus are. So it would be good to have a section on this within this forum. Hopefully, both those knowledgeable in this as well as those who  have had personal success in healing their liver to lower fibrosis/cirrhosis levels would offer advice on this?

By the way, the dietary changes you mention are some of the ones I'm  undertaking now. Those are part of the approach to insulin resistance.  I have mild case of that. So maybe diet for liver healing is along those lines? But there's probably much more to it . And exercise is leading component as well.

I'd rather focus on healing the liver after HCV  than on viral loads. Though I'm afraid obsessing on the latter is somewhat inevitable now. I'd love to learn more about these issues.
« Last Edit: October 25, 2016, 10:31:50 pm by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline bluebird

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Re: Starting Epclusa on Tuesday
« Reply #123 on: October 25, 2016, 11:57:51 pm »
Listed below are the cure rates for genotypes 1, 2, 3, 4, 5 and 6.

The results below included patients who were treatment naive and treatment experienced

Epclusa for 12 weeks – no ribavirin in patients without cirrhosis or with compensated cirrhosis

Genotype and cure rates:

Genotype 1:  98% -(323/328 pts*);  Genotype 2: 99.5% (237/238 pts); Genotype 3: 95% (528/553 pts); Genotype 4: 100%  (116/116 pts); Genotype 5: 97%-(34/35 pts); Genotype 6: 100% (41/41 pts)

*Genotype 1a cure rate = 98% (206 of 210 patients); Genotype 1b cure rate = 99% (117 of 118 patients)

Epclusa plus ribavirin for 12 weeks in patients with decompensated cirrhosis:

Genotype        Cure Rate

1a        94% (51/54 pts)

1b        100% (14/14 pts)

2          100% (4/4 pts)

3          85% (11/13 pts)

4          100% (2/2 pts)

Note:  no genotype 5 or 6 patients were included in the above study of decompensated cirrhosis patients.
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline Pepperann

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Re: Starting Epclusa on Tuesday
« Reply #124 on: October 27, 2016, 12:44:09 am »
Thank you Andrew & Bluebird,
For the help & the welcome! I was on my cell phone and now on my 1pad. The desk top is easier. It is nice that there are other people with gen 3a. I went to see my Dr. To get a liver check up in August 2016 and he said that the drug we have been waiting for is here. It is time! I was denied  treatment twice and appealed, it was over turned pretty quickly. So fast I was on the phone last week and it was on my front door step on Mon Oct 24th. I thought I might have to get legal council as I have heard some people have gone that route and that is why it is making it easier to be approved and not makings all of us wait until treatment is critical. My cognitive has been effected for about 8 years. It was like I smoked a dube and everything was on the tip of my tongue. So frustrating and embarrassing. Everything was a thingy ma jig! I thinking about taking my dose at 7pm. Enough time to snack and drink
Lots of water. Thinking of taking 1st dose November 1st. I feel like I have been waiting so long that I need to mentally prepare myself. Anyone else go through this? I pretty much felt like a zombie on Monday when I received epclusa. Stressed me out sooooo but I on the other hand feel very grateful. I wonder what life after hep c is like. I work like a crazy person and then have to rest. I have good energy then hit a wall. My Dr. Says I will feel better after treatment. I have heard very few comments on this. Anyone have any story's To share?
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline andrew j

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Re: Starting Epclusa on Tuesday
« Reply #125 on: October 27, 2016, 01:56:38 am »
I have lots, Pepperann, but for now -

Yes - I was all adrenally when I got my meds, and had to take a couple of days to sort-of reorient myself and prepare for the fact that I'd be starting treatment ...


Offline bluebird

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Re: Starting Epclusa on Tuesday
« Reply #126 on: October 27, 2016, 07:25:03 am »
You are welcome, Pepperann! I took my first pill right on the next day I received it after a long battle with an insurance co and a specialty pharmacy. I felt like I couldn't wait any longer, because my liver is in trouble! I was mentally prepared to any side effects! But I have no side effects, and 13 days passed with no symptoms which makes me happy. I noticed that I have more energy now than before I started treatment, but still trying to not to overwork myself. You need good rest, healthy diet and positive attitude. Now, when we have it- what are we going to loose? Fight for now! What would be life after? I was told by my Dr that they will be monitoring my health 2 years after the treatment of hep c even if virus will go undetected. To be sure it is completely gone. I assume I will be staying on diet to the rest of my life, since I already have beginning of cirrhosis and want to live longer. Say Goodbye to French fries!
« Last Edit: October 27, 2016, 09:32:36 am by bluebird »
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline Rosie13

  • Member
  • Posts: 297
Re: Starting Epclusa on Tuesday
« Reply #127 on: October 27, 2016, 01:39:38 pm »
Hi Pepperann, can I relate! I worked so hard last year to try to get Harvoni...when it arrived I was scared to take my 1st. dose. You read about all the sides & dread getting on with it. Every day you wait HepC is duplicating their evil cells. Everyday you wait to calm down is ok too. I sat on my bed & cried .I was so afraid because they gave me anti nausea meds too & I was dreading throwing up. It all was part of my journey & yours will unfold in the way it is going to go. I had no nausea & never took those meds. I had brain fog but HepC gave me the brain fog not Harvoni. I have been following the new meds & they are running very close to what my group last fall was experiencing. Head aches if not hydrated & tiredness followed by lots of energy as the disease was getting killed. I had terrible rashes before all over my face & now my skin is flawless. I cannot believe that HepC did that too! I trust that you will start in your time & do fabulous because we are all proof that this does not define us...it's just a small chapter. Stay strong...you got this!
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #128 on: October 27, 2016, 08:36:13 pm »
Thank you for being there ,
and responding to My post Bluebird & Rosie!
I am really looking forward to hopefully loosing the brain fog and fatigue!
I quit eating gluten, dairy, and red meat 5 years ago. Funny though I still eat French fries, little bit of sugar and a lot of coffee. I drink apple cider vinegar in my water.
Take a multi, probiotic, & silymarin (milk thistle) at bed time. This kept my numbers in check until this last vist my viral load doubled. So glad to finally have another way out of this devastating virus. I will keep you posted on how I'm feeling on the first couple
Of days!
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #129 on: October 27, 2016, 08:43:34 pm »
Hi Mw,
I am going to take your advice with 7 bottles for everyday of the week. I will dole out once a week! Great idea. Otherwise I can see me counting the whole bottle out when I'm not sure whether I took the pill or not!
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Rosie13

  • Member
  • Posts: 297
Re: Starting Epclusa on Tuesday
« Reply #130 on: October 28, 2016, 12:57:55 am »
I also kept a log of how I felt every day & when I took my pill . It's neat to see how coping & sides seem to  get better as you go along. I put a slash on the calender too every time I took my pill. Sounds like I was thinking I may forget! It worked out fine though as I had found a kitten that was run over the same day I started Harvoni. She was living but not thriving so we kind of went through this together. The noon hour worked for me so I could get things done in the mornings. I didn't stress on the water too much. I just sipped throughout the day.
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #131 on: October 28, 2016, 01:28:10 am »
A calendar,
X the days down. That is a great idea!
Thanks Rosie!
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline rk

  • Member
  • Posts: 99
Re: Starting Epclusa on Tuesday
« Reply #132 on: October 28, 2016, 02:59:42 am »
That's what I do. Take a pill then immediately put a check mark in the upper right corner, just for epclusa. For another med I take mid day I store it in small aluminum capsule. They are small and hold several pills. I got them on amazon if interested  https://smile.amazon.com/gp/product/B00SFIRJK8/ref=oh_aui_detailp
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline bluebird

  • Member
  • Posts: 44
  • Life is beautiful! No matter what...
    • https://goo.gl/images/HVZk8m
Re: Starting Epclusa on Tuesday
« Reply #133 on: October 28, 2016, 08:14:08 am »
I do it to! The special pharmacy sent me a pocket book with a calendar where I record the time of taking pill, a note and side effects in case if they occur. It is very handy! I just finished my 2 week! Happy ;)
« Last Edit: October 28, 2016, 08:18:31 am by bluebird »
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #134 on: October 28, 2016, 10:13:34 pm »
Hi Epclusa family:

Finished first week of Epclusa.

Only difficulty so far was with sleep, as feared. Nothing new, but  somewhat more severe than usual. I often just lay there trying and sleep doesn't come. Holding off on taking the diazepam just yet. I've had some worsening of sleep even before starting Epclusa, during the havoc of the insurance dispute. So much was riding on that, and it threw me off.

Other than sleep, which is pre-existing issue, side effects are even less than taking an antibiotic!!

======================

Question about refills and specialty pharmacies:


Is the four week refill from time it was filled by pharmacy, or from time you actually started taking it? There was one week gap in my case. So much hoping its from time it was first filled. That's one week sooner, and so less risk of missing a dose in case the process takes time. Anyone know?
« Last Edit: October 28, 2016, 10:16:07 pm by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Rosie13

  • Member
  • Posts: 297
Re: Starting Epclusa on Tuesday
« Reply #135 on: October 28, 2016, 11:27:39 pm »
My specialty pharmacy was awesome about all the details. While you still have plenty of pills you should call to confirm you need the week ahead. Mine were sent from about 100 miles away so they overnighted them each time. There are some nice sleep teas @ the health food store. I tend to be a night owl & when I am trying to get back to a regular sleep cycle I drink a cup of camomille tea or blend. Works every time!
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #136 on: October 29, 2016, 12:27:28 am »
Hiya Rosie:

The secretary in dr's office who works with insurance and pharmacy did say to call ~7 days before needing new bottle. But it wasn't clear if she meant 7 days before the 4 week mark of the prescription having being  filled or seven days before I actually run out. The former option gives me more leeway. And less anxiety.

It's sent to dr's office where I come to pick it up

Also: not clear if they need that 4 week viral load test before issuing new bottle. Because that would cut it way too close.  So I sure hope one isn't conditional on the other. Wasn't told that it was. Just anticipating ...

====

Thanks for suggestion about herbal tea. I'm afraid my sleep is too disordered for chamomile to do much. Its great that works for you
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Rosie13

  • Member
  • Posts: 297
Re: Starting Epclusa on Tuesday
« Reply #137 on: October 29, 2016, 12:38:09 am »
The specialty pharmacy just deals with you & the medication. Your Dr. will be the one doing the labs & you will be already into your next bottle before you know results.... for me that was about 4-5 days I think. They will send it to you ahead if you let them know of your concerns. I was so forgetful I was glad they were on top of it.
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #138 on: October 29, 2016, 01:42:32 am »
Thanks much, Rosie..That would greatly simplify the logistics

PS: I notice you went from F2-F3 to F0

I'm very interested if people who achieve this had done anything special to facilitate this such as dietary changes, exercises, etc --aside from having the HCV cleared. I'm hoping there are things we can do to improve the odds and its not just up to chance.

(I'd like post this topic on more general section of this forum. But cant find one here on  post-tx healing in general)

Thanks again:

-elias
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline rk

  • Member
  • Posts: 99
Re: Starting Epclusa on Tuesday
« Reply #139 on: October 29, 2016, 02:08:34 am »
Hi Elias,

I am reasonably sure the pharmacy goes by date issued. I started two days after issue. Then I called to give them 10 day lead time. They placed a reorder two days prior to my call so they went by the issue date. Its in your best interest to call on date issued. I posted this earlier but I guess it did not complete.

Rod 
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #140 on: October 29, 2016, 02:35:08 am »
Thanks Rod

I'll call them a few days in advance of date issued and alert them I guess the "few days in advance" the secretary meant refers to that earlier date.

Was more than a week's gap with me between date they filled it and date I actually began the medicine, which is why I fret. But this way, makes it less risky in terms of missing dose(s)
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Rosie13

  • Member
  • Posts: 297
Re: Starting Epclusa on Tuesday
« Reply #141 on: October 29, 2016, 11:56:54 am »
Hey Elias, yes the Fibroscan from my final checkup @ Mayo Clinic was a total shock to my Drs. & me too. They had told me from the beginning that it takes a very long time for the liver to slowly heal from this disease I had for so many years. I was ready to just see the result not getting worse that F3. They could not find anything & we were high fiving for sure. I think as far as taking things during my tx. I kind of slowed down on supplements because of my fears about getting the heaves but always did  a standard daily vitamin with all the essentials including Vit.D. I tried to abstain from all the whites...like sugar flour & starches . There is a great liver diet on the forum that you could check out. If I locate it I will come back with where it is on here. Have a great day!
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #142 on: October 29, 2016, 06:48:01 pm »
Thanks, Rosie. Remarkable story. I've seen from the signatures of a few others here that they've had similar recoveries after HCV was cleared. I do wonder if there might be things one can do to help that along?

Haven't really found section on forum this fits into yet. Or maybe it ought to be created?
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Phoenix17

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #143 on: October 29, 2016, 08:44:20 pm »
Welcome Pepperann! Congratulations on getting Epclusa. I noticed that you are taking quite a few supplements. Be sure to talk to your specialty pharmacy to make sure that you can take those with the meds. There are a lot of over the counter medications and supplements that interact with Epclusa. I just called and asked them about what I was taking. You can also ask them when to call and order a new bottle. Mine has been 7 days before I need a new one.

I am on week 7 and doing great. No sides except for a few headaches during the first couple of weeks, and if I don't drink enough water. I took my first dose the same day I got it. Too excited not to!!

I started t a VL of over 22 million and at week 4 it was down to just 36.

I am sure you will do well! 

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #144 on: October 29, 2016, 09:36:19 pm »
Thanks Phoenix,
Yes my Dr. Said the same thing. I was taking those before to try and stay healthy. Now I'm barely taking a multi-vitamin.thanks for the info on re-order I will make a mental note on that! I was going to start last night and came down with the respitory flu. Husband is real sick and going to walk in clinic. I just have a dry cough. Anyone else have experience with being sick while on treatment?
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Phoenix17

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #145 on: October 29, 2016, 10:52:33 pm »
Hi Pepperann - I have not been sick since starting treatment, which is amazing since my daughter had a bad cold and sore throat just last week. I work with young kids, and they have been sick as well, so I'm not sure why I haven't gotten anything, Knock on wood.  : )  You could always check in with the pharmacy and let them know what's going on. They will be able to tell you what you can take for anything while on treatment. They could tell you weather to start while you are sick or not. There is usually a 24 hour number to talk to someone. I have talked to them twice and were very helpful. I hope you fell better and get started on treatment soon!!!

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #146 on: October 30, 2016, 12:25:15 am »
Thank you Phoenix,
I was going to start Nov 1st but it seems after reading everyone's comments the side effects cannot be any worse than the episodes of fatigue I'm feeling now! I appreciate being able to read everyone's comments and it is nice to know that others are going through the same thing. I'm thinking I want to start tomorrow if I'm feeling better and I will take your advice and call the pharmacy. Feeling grateful today!
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Rosie13

  • Member
  • Posts: 297
Re: Starting Epclusa on Tuesday
« Reply #147 on: October 30, 2016, 01:14:38 pm »
Grateful is the theme through out all this. Amazing new drugs, Doctors that are with us not against us, all the brave people who participated in the trials, our families . I had to leave off insurance companies even though they have learned we are a pretty tough & persistent bunch! Have a great Sunday!
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #148 on: October 30, 2016, 04:28:13 pm »
Thank you Rosie,
I have decided to start today at 7 instead of waiting till Nov 1st. Cold and all!
I will report any side effects for anyone who is just staring or is interested. I noticed a lot of people who were previously posting have waned a bit.  I hope because they are feeling good and living their life! ! Would love ❤️ to hear an update on how you guys are doing as I notice a lot of people read but do not post and some of us are behind you so we are curious!
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Mw2324

  • Member
  • Posts: 138
Re: Starting Epclusa on Tuesday
« Reply #149 on: October 30, 2016, 05:29:50 pm »
Hey Pepperann,
  I think it's a good idea to start now. I am on week 8. Sorry if I haven't posted as much, I'll be more proactive! I love reading everyone else's thoughts and feelings. I'm in week 8 and feeling pretty good. Last week was my first good straight week so I think I'm finally in the light at the end of the tunnel! Although my labs were undetected at 4 weeks, I was still feeling crappy some days. Mainly tired and worn down. I am still thirsty as ever though! I will not miss that when this is over! I hope everyone is well and wish you the best of luck!
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #150 on: October 30, 2016, 05:40:43 pm »
That is great news Mw!
Thanks for sharing. I'm on the countdown.
4 hrs to go!
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Mw2324

  • Member
  • Posts: 138
Re: Starting Epclusa on Tuesday
« Reply #151 on: October 30, 2016, 05:43:11 pm »
It'll go smoothly. I've done alot of research and reading and I have not found anyone who couldn't manage. You may get a few sides but nothing too crazy. I feel a lot better now than before. My energy is better. Keep us posted!
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #152 on: October 30, 2016, 05:46:56 pm »
Thank you Mw!
 I will! Glad to hear you are feeling better!!!Do you feel different
Kind of better? More energy in a different way or does it just feel normal?
 
« Last Edit: October 30, 2016, 05:51:29 pm by Pepperann »
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Mw2324

  • Member
  • Posts: 138
Re: Starting Epclusa on Tuesday
« Reply #153 on: October 30, 2016, 06:32:25 pm »
I think it's probably a normal amount of energy. Before treatment my main side effect from hep c was extreme fatigue 24/7.  I also work 60 hour weeks so that contributes as well. I had pretty bad anxiety from being exhausted all the time. I was dizzy a lot and had insomnia as well. I just wanted to lay in bed all the time, I even seriously contemplated leaving my job bc I couldn't handle it with my energy level. Now that I feel my energy level increasing, I feel like I'm finally getting my life back and I'm overcome with gratitude. I have little to no anxiety and haven't taken a sleeping pill in 5 weeks. I feel good at work and feel better in my relationships with family and my fiancee. I was too tired for anything before, even a simple conversation. I actually feel normal! And it is awesome!
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #154 on: October 30, 2016, 08:14:29 pm »
Mw that is the greatest thing I've heard yet!!! My best friend did the old treatment and she never reported anything that positive. Did you have brain fog?
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Phoenix17

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #155 on: October 30, 2016, 10:26:50 pm »
Hi All - Peppeann,  I am glad to see that you have started!! Keep us posted on how you are doing. I am at the end of week 7 and doing great. I still feel tired, but not as much as I was prior. I do have brain fog as well. It was pretty bad, but I do feel like it's a tad better. Having this for about 36 years, I thought how I was feeling was normal. It's great to be able to be on this treatment and start feeling better. Its going to be my "new normal" and it's awesome! I am very grateful. Some of us have had this for a long time. We are taking powerful medications and it will take some time for our bodies to heal. But heal we will!!!

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #156 on: October 30, 2016, 11:38:09 pm »
Thank you Phoenix for your support and everyone else. A lot of great information!
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Mw2324

  • Member
  • Posts: 138
Re: Starting Epclusa on Tuesday
« Reply #157 on: October 31, 2016, 07:50:17 am »
Pepperann,
   I wouldn't say I had significant brain fog before treatment.  I had days where I would do silly things or wouldn't be able to convey my thoughts effectively but I think that was caused by extreme exhaustion.  During treatment,  yes I did.  The first 2 or 3 weeks I felt like I drank a bottle of nyquil before work. It was terrible. But I haven't had a day like that in about a month. I think my body had a hard time adjusting.
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #158 on: November 01, 2016, 02:16:35 am »
Thanks Mw,
Wow, I am shocked how great I feel 2nd day of taking Epclusa
Cold and all. I decided to take dose at 7pm. Could not fall asleep until 2am
Usually asleep by 11-11:30. Not sure why maybe because of cold. I thought I would feel crummy. I'm thinking the epclusa might be better taken earlier In the day. Mid morning. I'll have to see how I sleep tonight. It seems to give me energy. To soon to tell.
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Mw2324

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  • Posts: 138
Re: Starting Epclusa on Tuesday
« Reply #159 on: November 01, 2016, 04:46:49 am »
Pepper and,
   Congratulations on starting! I hope everything goes great for you!
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Starting Epclusa on Tuesday
« Reply #160 on: November 01, 2016, 06:52:50 am »
For some people it takes a little period of experimenting to find the ideal time to take their meds. If you find they keep you awake, you can gradually move the time you take them to the morning and vice versa.

It's all about working out what works for you.

I used to put my tabs into a little old lady pill dispenser so I could see at a glance if I had taken them. I also set an alarm on my phone. Never missed a dose in 6 months because of those checks.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Strike5223

  • Member
  • Posts: 30
Re: Starting Epclusa on Tuesday
« Reply #161 on: November 01, 2016, 12:13:19 pm »
On my 5th week of Epclusa, GT-3. Don't even know I'm taking anything! - no side effects(maybe a few more naps ::)
Just got 4 week lab tests and the Hep C Virus is UNDETECTABLE already :o
Female Age 50
Hep C diagnosed 11/2007
GT 3a
Viral Load 40K+
Source unknown
AST 47
ALT 31
Epclusa start 9/28/2016

after 4 wks:                       after 12 wks:
HCV: NOT DETECTED            HCV: NOT DETECTED
ALT: 19                              ALT: 23
AST: 30                             AST: 30
Platelets 94                        Platelets 89
Serum Glucose: 279           Serum Glucose: 395

Pretreatment Serum Glucose: 105

Offline Mw2324

  • Member
  • Posts: 138
Re: Starting Epclusa on Tuesday
« Reply #162 on: November 01, 2016, 05:13:20 pm »
Awesome news Strike5223! Congratulations!
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #163 on: November 01, 2016, 06:40:46 pm »
Hi folks

Been having really rough 3 days. Couldnt sleep. Then pain in different places. Seems I have a  bad cold, though I rarely get those. Hard to sort out what are side effects from what's my own insomnia and pain here

 Was hoping not to take any Aleve while on Epclusa, but called Dr's office and was told it wont affect the treatment. I really ought to take the Valium prescribed for anxiety/insomnia.  Was holding back on that too. But same dr prescribed it. Gilead said there's no known counterindication, and if same dr prescribed it, I cold go ahead and use it. If sleepless tonight, I will take some. No sense just suffering
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Mw2324

  • Member
  • Posts: 138
Re: Starting Epclusa on Tuesday
« Reply #164 on: November 01, 2016, 06:47:29 pm »
Elias,
  Sorry to hear you are having a tough time. I also suffer from insomnia. Not sleeping is so horrible, especially when your body really needs it. If you feel comfortable taking the pills, take them. You need your rest. Your immune system needs it as well. Sleeping heals the body. Hope you feel better.
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #165 on: November 01, 2016, 07:36:12 pm »
Thanks strike for sharing! That is great news!
So far so good. Elias I have cold to! I was told by the epclusa hotline to take
Ibuprofen. I'm with Mw, if your in pain take the pain med unless your afraid it is a slippery slope. Try the ibuprofen first. Sorry your in pain! Makes a cold that
Much worse! Hope you feel better fast!!
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #166 on: November 01, 2016, 08:02:38 pm »
I just wanted to share something I noticed after 2 days of takin epclusa. I have had this cold or flu that is isolated to my throat area. Dry cough and horse voice. I don't really feel feverish but took my tempature. I could not believe my eyes my temp was 98.6! My temp for the last 5 or 6 yrs has been 97.2-97.8! I was obsessed at the time to find out why my tem was 97.2 most of the time and finally gave up and attributed it to hpv and low thyroid. Also notice today that my second frozen shoulder is 98% thawed!!
« Last Edit: November 01, 2016, 08:07:33 pm by Pepperann »
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #167 on: November 01, 2016, 08:25:17 pm »
yeah. i took the aleve. still hurts some but better.

id have thought id have a high fever given how i feel but temp is normal. also have bad cough. ill assume cough medicine is ok to take.

 several things hurting at once and not enough sleep makes it worse. very hard to tell whats from epclusa and whats stuff i  had a while back thats being activated.

PS:
Aleve (Naproxen) is same family as Ibuprofen. so both are NSAIDs. I  only use it for very bad pain. I never needed anything stronger
« Last Edit: November 01, 2016, 08:29:19 pm by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Phoenix17

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #168 on: November 01, 2016, 08:56:32 pm »
I am glad to see you started Pepperann! It will take a few weeks for you body to get used to the meds. Everyone is different, so go with what is best for you. These meds are amazing aren't they? Nice to hear your shoulder is feeling better!
Elias - Be careful on taking over the counter medication. There are a lot of drug interactions with Epclusa. I haven't needed to take anything for a cold or other virus' that are going around, but I am sure the pharmacy can tell you what is Ok to take. Hope you are feeling better!
Congratulations Strike! Awesome news.
How is it going Mw? Week 8 starts for me tonight and feeling pretty good! Still tired and brain foggy though. It is getting better week by week. Onward we go!

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #169 on: November 01, 2016, 09:00:13 pm »
Hi Elias sorry your not feeling well. Right there with you! (Bad cold) My husband had been sick for 2 weeks went to clinic for the cold/flu on Sun
With dry cough and hoarse voice. After 1 day of med prescribed by Dr he was back to feeling normal. No antibiotics. My friend told me it doesn't go away for ever! So here I am at the walk in clinic.My cold just getting worse day by day. Acted like I just had touch of it and literally now my voice horse, raspy, and gone!Elias you should go get looked at to.
« Last Edit: November 01, 2016, 09:05:32 pm by Pepperann »
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #170 on: November 01, 2016, 09:02:07 pm »
Nice to hear from you Phoenix!
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #171 on: November 01, 2016, 09:18:17 pm »
I had called Gilead about Aleve. They said there is no known adverse interaction between that and Epclusa. But they cannot say whats ok to take or whats not, because that would be giving medical advice. And they cannot do that. So I called my drs office and receptionist asked dr . Was told its not problem in terms of Epclusa.

NSAIDs are not the best thing for your liver, but seems thats not an Epclusa issue, but broader question of liver health. It does worry me in terms of the larger scheme, because the stronger prescription pain meds  would be overkill for me and there's issue of developing a tolerance
« Last Edit: November 01, 2016, 09:19:51 pm by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Phoenix17

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #172 on: November 01, 2016, 10:05:23 pm »
You are right about Gilead Elias. I am talking about calling your pharmacy, specialty pharmacy's usually have a 24 hour line that you can call and talk to a pharmacist. They can give medical advice an what interacts with Epclusa.  I have done that with a few medications I am on just to be sure.
I hope you guys are feeling better! It's getting to be that time of year for colds and flu. Take it extra easy if you can!

Offline elias

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  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #173 on: November 01, 2016, 10:16:35 pm »
Thanks much Phoenix:

I dont think my  specialty pharmacy has that 24/7 service.

Thing is that their information on this would most likely have its source in Gilead's data. So I called them

I cant imagine pharmacies have independent information about drugs so newly released, other than Gileads database
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #174 on: November 01, 2016, 11:41:39 pm »
Hi Elias,
Just got back from the Doctors. Viral bronchitis! Who knew? On z pack for 5 days.i don't even have a runny nose, just dry cough and hoarse voice. Just sharing in case you have same symptoms.
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #175 on: November 02, 2016, 02:08:27 am »
Hope you feel better soon, Pepperann.I once had that. The zithromax is in case of bacterial complications , i think.My symptoms are a bit different, but who knows.

The aleve helped me a lot.  But still going on very little sleep
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline rk

  • Member
  • Posts: 99
Re: Starting Epclusa on Tuesday
« Reply #176 on: November 02, 2016, 06:18:40 am »
Hi all,

I see most of you are having some health issues. May I join in? I have a sharp pain in my right ear. Thought it was infected, went to specialist and was told no infection it may be a pinched nerve in my neck. I can not take NASIDs it lowers plates and last check mine are at 88,000. Have to live with it or find another way to possibly reduce inflammation. Like some sleep is an issue especially tonight. To hell with it i took a Valium. Starting to feel more relaxed will finish this and hope sleep comes. I have another problem to but I forgot time being what it was, oh well. Other than that I feel fine and doing fairly well as I am near the end of my 4th week. I remembered what it was, diarrhea symptoms I'll need more plugs. ha
Ok enough of my rant, have a good week all. Elias and Pepperann, don't fret most issues are short lived. I just happen to have more than one and the ear pain is not hep c related. My luck tends to run that way.  Night all - Rod
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline Phoenix17

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #177 on: November 02, 2016, 07:56:44 am »
I am not sure how they get their info Elias,but it's their job to know everything they can about the drugs they supply. I just feel better getting their advice!
Glad you went to the dr Pepperann! Feel better soon.
Whatever it takes to get sleep rk. I had a few short bouts with diarrhea too. Haven't had any in a few weeks though. It will pass!

Offline elias

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  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #178 on: November 02, 2016, 09:15:38 am »
Youre correct, Phoenix. They should know bout this the best.  I did call the specialty pharmacy about it. Both the Aleve (Naproxen) and Diazepam are ok with Epclusa. No interference at all. Thanks for the suggestion. It did put my mind at ease about it.

I'd very much prefer not taking the Aleve unless I really need to. Seems a whole bunch of things came on together: insomnia, TMJ, pelvic pain, and a horrid cold. Might be the stress of it all driving this. So stress reduction techniques, once this all lets up some...Hope that happens soon. I also need to look into mild painkillers easier on the liver than Aleve. Sad because it works so well for me and no side effects.

I do think the dramatic intensification of the insomnia may well be a side effect of the Epclusa. But being stressed out is likely playing a role, for myself and a few others here having symptoms
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #179 on: November 02, 2016, 10:20:43 am »
Rk wrote:
Quote
Thought it was infected, went to specialist and was told no infection it may be a pinched nerve in my neck. I can not take NASIDs it lowers plates and last check mine are at 88,000. Have to live with it or find another way to possibly reduce inflammation

Hi Rod:  Is platelet reduction via NSAIDs transient for during time one is taking it , or does it remain low? I read that Acetomenphen (Tylenol) has similar effect.

 NSAIDs also messes with liver enzymes some. Not sure of degree to which Also not clear is that's transient for while taking it. I  was taking Aleve (Naproxen) during kidney stone pain and it caused spike in liver enzymes, prompting the GP to look into HepC

Please keep us posted if you learn of pain relief tx which can be taken prn and is non-addictive (as Aleve is). Or PM me on it if you prefer. I don't think Tylenol works for me unless to I go to high dosages, which causes problems
*************

I'm thinking that Epclusa might intensify issues or symptoms we already have more often than it creates new ones. So if one already has insomnia , it will make it more pronounced. If one has some tendency to muscle pain, it might intensify it. This might account for the clusters you and me are finding as well as others. Might be worth considering. Hope you feel better and r deeply sedated by now
« Last Edit: November 02, 2016, 11:33:40 am by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline rk

  • Member
  • Posts: 99
Re: Starting Epclusa on Tuesday
« Reply #180 on: November 02, 2016, 01:41:10 pm »
Hi Elias

I am not sure of all the risks using NASIDs. Also we deal with compromised compared to normal functions. My nurse said Tylenol in moderate doses is fine. I do not remember how much but I never approach that amount. Aleve however was not ok in any amount. Lynn K on the forum may have better incite, as I recall her platelets was low as well. I think Epclusa and similar med's probably play a role in this as well. I questioned my nurse about essential oils. For the most part they are considered safe. That is my next avenue since I have several on hand. I made up a small amount of oils with ant-inflammatory properties. That plus additional range of motion neck exercises. Just started but have no ear pain yet. Will see, yes I think Epclusa may share some of the effects. I don't dwell on things not in my control. I try to find ways to work around my issues. I slept little but it was sleep and it will get better. In general I get sleep but wake early and feel unrested. That can go a day or three, then I may get a good nights sleep. I've read a lot on the subject and practice good habits related to sleep. Its trying but I either deal with it or seek help from a specialist. Just more to pile on, glad I do not have to work and deal with these issues.   
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline elias

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  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #181 on: November 02, 2016, 06:45:59 pm »
Hiya rk:

Yes. I have read that tylenol is preferable. There's aricle by Lucinda Porter on this:

https://www.hepmag.com/blog/harvoni-and-headache-1.

Up to 1,000mg/dose and a max of 4,000 mg/day.Unfortunately, tylenol helps me little if pain is intense such as with TMJ

Something may be not good for the liver, yet have no known interference with the actions of Epclusa. Such is the case with NSAIDs. Conversely, something may be completely harmless to the liver , yet interfere with Epclusa. For example your everyday antacids , such as Tums. So I'm glad i got that straightened out. I dont take Aleve too often, but when I really need it , I do. My platelets are a bit lower than average, but not terrible. They range between 149 and 190. (I do wonder if that lower number was on account of Aleve at the time)

Thanks for the idea about essential oils!!! They are expensive if taken as supplements.. Wondering if increasing the daily intake via diet might help though. Was going to do that anyhow as part of health program, but the severe insomnia threw me for a loop. So my "health program" was put on back burner.

I finally got some restful sleep. Thanks to our little yellow friend diazepam. Still it took me hours to fall out. Might try shifting that time I take the Epclusa and see. Or as some here say, that side effect may just be transient. its amazing what a difference one night sleep can have. And i only got 5 hours-if that much. I take diazepam only as acutely needed. As with Aleve. I might ask GP for a med specifically for sleep if this continues

For non-severe  "aches n pains", daily stretching exercises are of course the best. I rarely take anything for those.

Thanks for referencing essential oils. I should look into those
« Last Edit: November 02, 2016, 06:50:20 pm by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline DS

  • Newbie
  • Posts: 2
Re: Starting Epclusa on Tuesday
« Reply #182 on: November 03, 2016, 09:00:07 am »
Hi there,

I have good news about Epclusa.

I'm 25 and I was diagnosed with genotype 2 in May 2016and started treatment in the U.K. in August as I managed to get treatment approved by my workplace health insurance (still amazed by that)

Anyone starting Epclusa should understand this is a miracle drug. In two weeks I was undetected, I've lived a normal life even been able to have the odd drink here and there once or twice a week (no binge drinking whatsoever). I've had to change nothing about my life whilst on treatment. I had the occasional headache and a bit of fatigue which I noticed whilst exercising at the start but thats it! I believe the mind is a powerful thing and having been diagnosed out of the blue with such a serious illness puts you in a very strange state of mind where you are convinced 80% of the time that you are ill and any pill you take has an impact on you. I honestly believe (and so does my doctor who is a professor of hepatitis at a very renowned university in the U.K.), unless you are at a very late stage of liver disease Epclusa should have no real side effects if you stay away from ribavirin.

Believe in the drug's amazing curing ability and you will get through it without a problem. I have 6 days left of treatment, with another 3 months to wait for confirmation of SVR12. I would be surprised if it's a bad result though, it would make me the first person in history with genotype 2 to not have been cured on Epclusa treatment!

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #183 on: November 03, 2016, 11:22:24 am »
Thanks for encouragement, DS

It is indeed a possibility that some of the side effects are driven in parrt by  sense of vulnerability. Especially among those recently diagnosed. Suddenly, i had learned I had some potentially fatal disease, which i likely had all my adult life. At same time, i learn theres this magic bullet recently approved, only several months before i was diagnosed. just as precipitously, i learn that my insurance refuses to cover it. Then unexpectedly I learn that I won on appeal. So my entire system was geared to cataclysmic thinking. This may very well amplify mild symptoms. So far all my sides effects are intensifications of symptoms of issues I've had in the past and have
overcome. or issues I experience only very mildly.

Nonetheless, sleep deprivation is sleep deprivation and harmful to health . and the pain is very real and needs to be addressed regardless .

===============

PS: Im curious what your starting viral load was? Since you managed to clear it to undetected at only two weeks..

elias

Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline DS

  • Newbie
  • Posts: 2
Re: Starting Epclusa on Tuesday
« Reply #184 on: November 03, 2016, 11:41:11 am »
Sorry to hear about your troubles. Sleep deprivation is no laughing matter and it is highly likely that it is not caused by Epclusa. Whatever it is caused by it should be resolved so you can rest and relax. At the end of the day, your body is being cured and fights off the virus over a period of 3 months so rest and relaxation should be looked forward to and enjoyed! The professor said that mild side effects like headache and fatigue in the first few weeks are due to your body releasing low levels of interferon (like you do when you have a cold) as it fights the virus which is prevented from replicating by the drugs. So headache and fatigue in the beginning shows you that the drugs are working!  But in general if you look at studies done without ribavirin the side effects are very mild and anything more serious is probably due to something else. 

My viral load in May was 9.5 million, no fibrosis whatsoever and an ALT of 56. Ultrasound totally normal. With the new drugs your viral load has no impact on the effectiveness of the treatment. Back in the day of interferon injections there was some evidence that higher viral loads were more difficult to treat. Not anymore! Your body either responds or it doesn't...

Offline rk

  • Member
  • Posts: 99
Re: Starting Epclusa on Tuesday
« Reply #185 on: November 03, 2016, 12:50:06 pm »
Hi DS

For those of us that waited for a milder cure Epclusa is the answer. I went into this hoping for mild side effects and that's what happened. Today is 28 days, I finished my first bottle. After a 12 day blood test I to was cleared of the virus. It was an early two week test.

I am genotype 2 and have lived with this for several years. As an older male my doctor suggested I wait for a milder cure. As I went thru final testing Epclusa come out in June. I have a great doctor and he promised me Epclusa. With me at F3 he eased my mind with the cure rate.

At 25 and your best years ahead I wish you a long and prosperous life. Hopefully in your life time Hep c may become a simple immunization.
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline Pepperann

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Re: Starting Epclusa on Tuesday
« Reply #186 on: November 03, 2016, 03:50:28 pm »
Thank you DS
Great news. Cannot believe how good I feel! So glad you are feeling great to!!!
Thanks for sharing!
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline wsv3424

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Re: Starting Epclusa on Tuesday
« Reply #187 on: November 03, 2016, 06:57:33 pm »
so glad you guys are here to talk to and encourage others . Such a blessing for all.
Fixing to take my 1st dose epclusa and will advise as going thru process. Looking so fwd. to being well again.
Muscle cramps ,leg and arms back muscles are real demons ,perhaps epclusa helps w/this.
If I can help anyone w/encouragement I'm available mostly 24-7 .
thank the man above for a wonder drug we can use to correct our mistakes or faults or just being irresponsible far too long.

Offline Mw2324

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Re: Starting Epclusa on Tuesday
« Reply #188 on: November 03, 2016, 07:01:59 pm »
Welcome wsv. Keep us updated on your progress and remember to drink lots of water! I start my 3rd and last bottle tomorrow. I can try to help with any questions. Congratulations!
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline wsv3424

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  • Posts: 7
Re: Starting Epclusa on Tuesday
« Reply #189 on: November 04, 2016, 01:53:24 pm »
1st dose,uneventful , but today headache minimally annoying but I can deal w/anything if it will cure me .
I'm so thankful just for this gifted opportunity dont know how to accept it really.
NEVER  been given anything in my 65 yrs.
congrats to all and God bless!
look fwd. to 2nd dose at 7 this pm.

Offline wsv3424

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Re: Starting Epclusa on Tuesday
« Reply #190 on: November 04, 2016, 01:55:12 pm »
Pepperann, so glad hearing how epclusa has you feeling !!
how long have you been taking ?

Offline Pepperann

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Re: Starting Epclusa on Tuesday
« Reply #191 on: November 04, 2016, 06:18:33 pm »
Hi Wsv,
I started not to long before you! Not sure what happened to the rest of my post
Nov 30th Sunday . I feel great. Web if you are getting headache could be an indicator that you need to drink more fluids.  If your not a big fan of water try and get anything healthy for you. Plain tea even!
« Last Edit: November 04, 2016, 06:24:19 pm by Pepperann »
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Phoenix17

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Re: Starting Epclusa on Tuesday
« Reply #192 on: November 04, 2016, 07:18:17 pm »
Welcome Wsv! Glad to hear that you started Epclusa! I am on my 8th week and feeling pretty good. I did have headaches during the first couple of weeks. Didn't bother me though. They would come and go really fast. Very weird! The only time I get them now is if I don't drink enough water.
3rd bottle Mw! Awesome. I start mine on Tuesday. Yay!
Blessings everyone!

Offline Mw2324

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  • Posts: 138
Re: Starting Epclusa on Tuesday
« Reply #193 on: November 04, 2016, 07:20:53 pm »
Hey Phoenix,
  How are you doing? I am well, still a little tired. We are almost at the finish line! It's almost over. Good to hear from you.
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline Pepperann

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  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #194 on: November 04, 2016, 09:18:38 pm »
Hi Wsv,
I was writing a post to you earlier and it disappeared when it I went to post it. Did something wrong not sure what, then had to go. It looks like Phoenix had headaches to. I guess common.  I think I read that some people thought drinking more water helped. If you are like me and don't like drinking water, try a squeeze of lemon.
I think epclusa helps with ligament and joint pain to what degree I have no idea but I had 2 frozen shoulders with one fully thawed out when I started treatment, and the left one still painful to where I could not lift arm high enough to shave without propping arm up the wall and stretching it barely enough to access and very painful. I noticed 2nd day of taking Epclusa that my arm is almost able to fully extend and I can definitely hold my arm up by itself to shave!! I made a comment on here earlier that my Doctor said I would feel better after treatment. I may get more tired as the treatment progresses but for now I feel great bronchitis and all. I probably should of waited till my cold was over. Doctor felt the eplcusa may have lowered my immune system. There is a nasty bronchial flu cold going around Seattle and everyone has it. Stay away from sick peole,wash your hands, and no touching the face!
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Phoenix17

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Re: Starting Epclusa on Tuesday
« Reply #195 on: November 04, 2016, 09:34:35 pm »
Doing well Mw! I am still tired too. In fact took a nap today. ;D  2 down, 1 to go!!
Yes Pepperan water helps A LOT! You should be drinking as much as you can. It does help with the side effects, as well as keeping things moving. I think in the end, Epclusa will help with joint pain. I have had pain in different areas. Knee, shoulder, now ankle. The ankle swelling went down during the first week of treatment, but the pain is still there. I also had lower stomach pain, which has just about gone away. Fatigue and brain fog still hanging around, although it does feel a bit better. Glad to hear your shoulder is better!!

Offline bluebird

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  • Posts: 44
  • Life is beautiful! No matter what...
    • https://goo.gl/images/HVZk8m
Re: Starting Epclusa on Tuesday
« Reply #196 on: November 05, 2016, 06:15:03 pm »
Happy Saturday to Epclusa Family!

  I didn't post for a while, because there was not much going on since I started taking Epclusa. No side effects! Noticed that I am not tired anymore as I used to be for last several months before I was diagnosed. Increased level of energy. Next Thursday I am starting my second bottle  which I already received( my specialty pharmacy is on the top of things, they call me ones in a while to check how I am doing, and they initiated the refill without me calling them).  I noticed that most of you posted blood test results during the treatment ( 4,8,12 weeks), but here is a thing - my doc never told me that I should have it done too. Yesterday, I called to a clinic and left a message wondering if they can give me a referral for blood test  to track my viral load and the rest, because I am concern, and only after that medical assistant contacted me, apologies that she forgot(?!) to call me earlier ( 2 weeks ago)...It just another situation which makes me think we have to keep our eyes open and take care of ourselves.

About the positive side effects. When I was walking/running down the stairs I always felt a little pain on my knees. I had it for last year or two. Week after I started taking Epclusa I noticed that pain was gone. I asked myself if it could be from the drug I am taking, but now I am sure IT IS since you all have noticed it too. P.S. Gilead probably will take it to consideration and perform new research. It reminds me a history of development of Viagra when originally it was targeting to treat high blood pressure and angina pectoris, but side effect completely turned it to different direction:):):) ) It also could be from increased water intake and limiting (almost excluding) salt from my diet.  I changed my diet completely despite I was always eating healthy, I eliminated a lot of goodies I was enjoying a lot.

I wish you all to have a nice weekend and enjoy life as we supposed to.. no matter what!

« Last Edit: November 05, 2016, 06:20:44 pm by bluebird »
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline Phoenix17

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  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #197 on: November 05, 2016, 07:09:29 pm »
Glad you are doing so well bluebird! Yes you do have to be a advocate for yourself. Not just with an illness, but with everything. Especially now though, as it is so important!!

Offline wsv3424

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  • Posts: 7
Re: Starting Epclusa on Tuesday
« Reply #198 on: November 05, 2016, 08:05:07 pm »
well all, I'm taking 3rd does now and must say all is exceptional so far , yipee!
so darn good seeing the positives here from all of you folks, gives me a warm feeling [or is that just the warm urine running down my left leg] I'm 65 after all and the past couple years felt every bit my age. NEVER  did I ever even think of age ,felt ageless and blessed to have each days sunshine on my face . My mom made 99 and would be here today if not for incompetence at the hosp . Another glaring need we face today where you go to the hosp to die, wth right?
Never having a cold or flu my entire life to be struck w/hep c and this super-fatigue syndrome accompanying it slapped me around real tuff that I did blood work complete and about fell out watching the dr. say hep c.
Now ,once again I've been blessed w/meds that from all I see w/you great folks is positive outlook is in my future hopefully and I will get to play w/grankids etc that I crave and miss bigtime.
Thanks for all and thanks for yall :)

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #199 on: November 06, 2016, 09:51:34 pm »
Hi Wav
I feel very grateful that is for sure. Congratulations on getting on epclusa! My best friend was so sick for a year while on treatment that I cannot believe I am on my 8th day with so far no side effects! I hope the same for you!
I have a question does anyone know when to take medication on daylight savings? I suspect the same time but hour difference?
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

 


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