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Hep C Discussion Forum -> On Treatment -> Newbie waiting for Epclusa approval
Post Info TOPIC: Newbie waiting for Epclusa approval
Ruby Red


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RE: Newbie waiting for Epclusa approval
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Hi Sophia

Fatigue prior to treatment was an issue for me and was getting worse for the past couple of years. I'm still feeling fatigued but I must tell you I have had periods of time where I felt normal. I have been calling those times my "euphoric times". For me it's like...hey I'm not tired nor do I have any leg pain nor do I have any foggy brain....it's simply a wonderful feeling! All other sides seem to come in waves and I must say I've had a few bad days but again I had bad days before.  Staying hydrated is the key, you've read that over and over again,  hands down it's the key to helping our warrior (Epclusa) fight the battle. For me it's not something I forget because I have developed an unquenchable thirst, definitely dehydration is a side.  

You'll read your own body and with the helpful information you can acquire here you will have no problem!

flowerpot.gif RR



__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 
JimmyK


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Sophia wrote:

thanks Ruby Red, i am so tired all the time. When I finally start treatment will that start to go away? Congrats to you!

 Greetings.

First of all congratulations. You are at the starting point of a very effective treatment plan.

I would like to point out that yes fatigue is one of the common symptoms of Hep C, but on top of that, the concern and worry since diagnosed, and then waiting for approval, and then the final green light also takes a major toll on most folks just due to the anxiety of the unknown. Some of that may now subside as you settle into treatment and at least putting that concern behind you.

You have already seen the importance The Family here stresses with regard to proper Hydration during treatment. Not to sound in any way crude but keep things flowing. As you take the treatment, it stops the production of new virus cells. The old ones die off quickly but the replication process has ceased. You want to flush all of the bad out of your system quickly and completely and proper hydration will do just that. It will also keep any side effects at bay as nothing is given time to build up that should be "disposed of".

Treatment tends to be an emotional ride. For one thing it is hard to believe that little pill can do so much, so fast. Generally speaking, within the fist four weeks, folks on treatment clear the virus. This happens that fast due to how it works. Like most viruses, Hep C is very short lived and relies on the replication process to continue its ravaging effects. These drugs specifically go after that process and block it's ability. Having successfully done that the Virus die off takes it's normal course with nothing coming in behind it. This is exactly why the quick results are generally shown.

The remainder of the treatment period can be likened to and Army that has taken over an enemies city and stands guard protecting against any potential survival of a strangler. That is most often an 8 week period post destruction of the enemy. The short life of the virus coupled with the inability to replicate is how Final Victory is gained.

During all of this it is important to Hydrate to allow for what I like to say is a washing of the body in the ridding of the beast.

We will be with you every step of this journey. You will have questions and someone here surely will have the answers.

Very soon it will be YOU helping some new person down the path to FREEDOM and your experience will provide them with the needed helping hand each of us have sought at one point or another.

Again, a heart felt congratulations and let the journey begin! wink

JimmyK

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
Phoenix17


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Wonderful news Sophia! Those little buggers will be gone in no time!!! 

P.s - Naps are good. yawn



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Ruby Red


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Hi Sophia

I'm joining the many in saying YEAH epclusa approved!!  Wecome to the Epclusa gangsmile



__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 
Cheddy


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Sophia,

I hear that Epclusa is relatively tolerable, at least compared to older protocols.  Still, there is so much mental and emotional aggravation that comes from the moment you find out that you have HCV. There's all the wondering about how you got it. Then there's waiting for treatment approval and insurance approval.  Then there is deciding who to tell, if anyone.  Then there is sorting out side effects, moods, and the anxiety of waiting for test results.  Of course you need someone to talk to!!!

I got more benefit from this group than anywhere.  There are loads of educational links here that put so many questions to rest.  Take a look around the site. There are also many supportive and experienced people to sort out feelings and whatever challenges pop up for you (if any).  You've done well to seek out people with first hand experience.

So we are here for you.  We can't wait for you get to be cleared.  It's quite the cyber happy dance.  Celebrate everything you can.

Wishing you a rewarding journey. You're going to learn so much.

 

Cheddy

 



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 
Canuck


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Yep, I know (or rather "knew") the feelin' ... a 2 second jig followed by a 4 hour catch-up cat-nap! It will get better, something to look forward to. I wondered if things would EVER improve for me, but they have slowly and still are. It will work, there will be a lessening of this profound fatigue for you, sooner or later (I hope sooner). Go fer it, do the jig, AND then take the nap, you deserve a little celebration today! C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Sophia


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a roller coaster of emotions! If I had the energy I would dance a little jig 



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g2 diagnosis 07-16

fibroscan 8.9, F-2
Canuck


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Ya, feels an eternity to get the waiting for the script done, doesn't it, but I started feeling VERY relieved as soon as I knew "for sure" that I WAS going to get my drugs, and then even more relief as soon as I got that first pill past my lips, and then at every stage and milestone following!! It will still be a slog to get to the end, but a good end it will be. I am so glad for you to get epclusa! smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Tig


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WOOHOO! Congratulations on the approval. We'll be here to cheer you on smile




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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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EricChuckFar1


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Sophia wrote:

I got the approval! I'm going to start the Epclusa in the next couple of days. Thank you for your kind words.

Congratulations! Very happy for you, and best of luck with the treatment. I know you'll do great!

As far as your other question, I have not decided whether to share with my family yet. For the most part, I am tempted to because my mother is a nurse and she has done all sorts of medical procedures on me and I am concerned she may need to get checked just to be safe. However, I'd hate to worry them, so I am waiting until after I have all my questions answered and begin treatment.



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Diagnosed on Oct 06, 2016. Initial VL: 3 million, ALT: 20, AST: 26. Elevated Bilirubin. Genotype: 2

Started Epclusa Nov 20, 2016.

UND at 4 weeks. Und at 12 weeks.
Sophia


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Yay! relieved and ready to get this devil out of me!



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g2 diagnosis 07-16

fibroscan 8.9, F-2
Canuck


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Hey! 

Yippie Sophia! Good going! So glad you got it. Really good. You'll soon be on your way. biggrin C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Sophia


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I got the approval! I'm going to start the Epclusa in the next couple of days. Thank you for your kind words.



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g2 diagnosis 07-16

fibroscan 8.9, F-2
Shadowfax


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Hi Sophia,

We are glad you found us. Great news that you will start treatment and be rid of HCV. Honestly, I would not worry about whom to tell or not to as it is a very personal choice. In my case, there were only a few people who knew because for me, I did not care to discuss it with anybody or them to worry about me if in fact they would have.

The people here were my savior and stayed with me before, during and after my treatment. The information and things you can safely talk about here with so many people will help you through this as it did myself and so many others. 

Please keep us posted as you move forward and there is no question you cannot ask here.

Be well

 

SF



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
Canuck


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Hi again Sophia,

How are things going? Any more appointments or word from your doc, or insurance, about getting epclusa - did your doc say how long it might take for you to get approved??

Do you have a partner/significant other around you, or are you on your own? It can be such a dilemma to figure out who to share with, friends/family, whether you need to or want to, and how, especially when you are not sure if you have a choice to tell or with hold private info. 

It does help, to get through times like this, when you have one good confidant - I was so lucky that way, but my one chosen confidant was "a given" and an easy, absolutely necessary one and was a perfect natural fit. So I am very lucky that way. My medical team/docs too were VERY important to me!! I am sure I just about wore them all out!, (as I do the folk here)!!

You have us and your doc. Everyone here will try to help where we can.

About fatigue - I hear ya! I had profound fatigue (and weakness), it built for years, and spiraled a lot, exponentially worsening for quite some time prior to treatment, and even worse during treatment too, but slowly, slowly I am so relieved I have lost quite a bit of the fatigue already and I am still loosing fatigue and starting to rebuild my strength again. You will too! 

There will be SO many rewards for you to come. 

Let us know how things are going. Tell us your story, or fire away for questions. Might help a bit, while you are in the "waiting" mode. smile C.

 



-- Edited by Canuck on Friday 14th of October 2016 07:22:15 AM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Allison


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Hi Sophia, This can be a stressful time. I have chosen not to tell my family, only my fiancee knows. I am in my 5th week of Epclusa. My bloodwork shows I am undetected, so have hope! Best wishes to you. I am always here to talk if you need someone.

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sungoddess


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HI Sophia, you asked if anyone told their families? In my case, no. My husband and I are the only ones who know about my HCV. I chose not too because I never want to worry them and I was never really " sick" with anything. The folks on this message board helped me through my last round of treatment and I have turned to them again this time. I hope your treatment goes well.



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Geno 1a, VL 289,000 at start of Tx Nov 2/11. Und after 4 wks on Interferon, Ribavirin, and Victrelis, Finished Tx June 25/12. Still und. Virus back Sept 2012 VL over 1 million.

Started Harvoni Sept 22/16. VL 2 million. F score 2.

10/24/16:HCV UNDETECTABLE. Alt 21, Ast 21.

EOT: Dec 14/16  

SVR: May 2017
Sophia


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Thanks so much for that info. I can relate so much to the house cleaning because I do the same things. Best wishes to you,



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g2 diagnosis 07-16

fibroscan 8.9, F-2
Ruby Red


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Thank you Tig & Observer  for the info.  I have ginger here and had planned on making tea in case the nausea got to me but I must say it's not like a flu like nausea and it comes in waves and doesn't last long...for me.  

I have saved that recipe though just in case...

Thanks again!



-- Edited by Ruby Red on Thursday 29th of September 2016 07:25:11 PM

__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 
Tig


Admin

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Ruby,

When I saw Alison mention using ginger for nausea, I wanted to direct you to a recipe I shared here for making homemade ginger ale. It's a good one. Read the entire thread, there are some good ideas accompanying the recipe. Linuxter poured the mixture into ice cube trays, making it easy to make and store.

Homemade Ginger Ale



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
Observer


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Hey Sophia,

Fatigue is usually the one of the first symptom listed in the lists of HCV symptoms.

I used to say I had a short shelf life...I would only be able to vacuum for ten minutes then need to rest for at least 20 and often couldn't do more. The vacuum would often sit in whatever room I was 'cleaning' for days until I could muster the energy to finish or someone else got sick of stepping over it and finished it  

I had to lie down and rest partway through cooking dinner for my family for years. 

I actually got a breed of dog that didn't need as much exersize as my beloved black labs always needed because I didn't have the stamina to do real walks( which I have treasured all my life)

I did a different treatment from what you're going to do but I conquered and destroyed my evil virus a year ago and I can actually finish vacuuming and cooking without rests. 

I can walk my dog at the beach for an hour or more and still have energy to do stuff, it's great.

i hope you get on your treatment soon,

Alison 

 

Ruby Red, 

Have you tried ginger?

Ginger tea, or maybe make a ginger syrup and add cold bubbly water.

Thats supposed to help nausea.

xox 

 

 



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
Sophia


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thats good to know. I hope your headaches and nausea will subside. :)

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g2 diagnosis 07-16

fibroscan 8.9, F-2
Ruby Red


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For me, and everyone is very different, the fatigue I was experiencing prior to Epclusa which I have only completed 2 weeks, has not been as severe.  I have actually felt absolutely wonderful for long periods of each day.  It seems for me, that headaches come in waves and nausea the same.  BUT let me also say "nausea" is a severe word for what I am experiencing.

:)  I hope that info helped  :)

 

 



__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 
Sophia


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Posts: 13
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thanks Ruby Red, i am so tired all the time. When I finally start treatment will that start to go away? Congrats to you!



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g2 diagnosis 07-16

fibroscan 8.9, F-2
Ruby Red


Senior Member

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Posts: 126
Date:
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Hi

Welcome smile  You will not regret finding this group I can guarantee that.  There are so many people who can and will answer questions that you may have along the way, so please do not hesitate to ask any question.

I also am on Epclusa, there a few of us that have started treatment within days of each other and I can tell you for me it is wonderful to be able to check in and see how others are doing.

The wait for treatment approval can be frustrating but be sure that when you are approved, frustration will be simply part of the journey.

Hang in, you'll be taking your first pill before you know it!!  



__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 
Sophia


Member

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Posts: 13
Date:
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Thanks pheonix17. The waiting is hard, the unknown is hard. I'm interested in knowing if people on this forum have told their families etc. 



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g2 diagnosis 07-16

fibroscan 8.9, F-2
Phoenix17


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Hi Sophia - You have come to the right place! There are so many people here to talk to that know what you are going through. They will stop by and say hi too. I am a year older than you are. I went to my doctor because my ankle hurt and both ankles were swollen. She did quite a few tests and was diagnosed with hep c. I couldn't think straight at first. I saw your other post. I am a GT2 as well. I was diagnosed in July 20th of this year. I just started week 3 of Epclusa. Besides a few headaches, I am feeling great! I know how you feel, but being on this forum will make you feel a lot better! Since you are waiting for Epclusa approval, go to the Epcluser's corner in the on treatment section. There are quite a few of us that have just started treatment. Plus lot's of great people that have been cured and have been through it all! smile Welcome!



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Sophia


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Hi, I need someone to talk to, waiting on Epclusa And I need someone to talk to. 



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g2 diagnosis 07-16

fibroscan 8.9, F-2
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