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Hep C Discussion Forum -> On Treatment -> Johns Epclusa treatment
Post Info TOPIC: Johns Epclusa treatment
Canuck


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RE: Johns Epclusa treatment
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Ivery wrote:

Just got the call, I test negative for hep c !!!!! yessssss !!!! I just did my labs last Friday. Should of been sooner but life happens. Super stoked!

Hey Ivery,

"The call" and "life happens", is exactly right, when the stars converge in your favour!  This was meant to be, you worked hard to get that magic star dust epclusa, and you were so right to do so!

I couldn't be happier for you. You beat 2 bugs this last month! Whatever that flu-buggy thing was a few weeks ago, and, now that you have your EOT VL (even if it was a little late, after the fact of your EOT), now you know you beat the biggest bug of them all. You are real virus-less now!

Congrats Ivery. I'm really stoked for you too.

My only lament for you was that short horrid test-run on riba for a bit, until you went and got yourself the good stuff! And, that they did not give you more VL tests throughout your treatment - those are always reassuring if you can get them as you go along.

So, being that your EOT UND VL was a wee bit late, I assume your EOT+12 week VL will be a little early and next to happen? Do you also have a EOT+24 week VL planned?

I wonder how your liver function panel tests are now (ALT/AST/BILI). I think the only one you recorded here was your high pre-treatment ALT. Do share, if you know any of your other blood tests going forward, and if your doc reassesses your liver condition (Fscore) etc. in the future.

I am SO glad you ended up getting the epclusa and are now und. Good job man! biggrin 

 

 



-- Edited by Ivery on Tuesday 6th of December 2016 07:27:43 PM



-- Edited by Ivery on Tuesday 6th of December 2016 08:10:54 PM

 



__________________

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)
Phoenix17


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Great news Eric!



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Ruby Red


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EricChuckFar

Don't you worry about a thing!!  You will breeze through!!!!teamwork.gif

Rubysmile



__________________

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)

 
EricChuckFar1


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Ivery wrote:

Just got the call, I test negative for hep c !!!!! yessssss !!!! I just did my labs last Friday. Should of been sooner but life happens. Super stoked!



-- Edited by Ivery on Tuesday 6th of December 2016 07:27:43 PM



-- Edited by Ivery on Tuesday 6th of December 2016 08:10:54 PM

 Congratulations!! I'm still working through the first month of treatment myself, so not entirely familiar with what comes next. I believe it's SVR12? 3 months will pass in no time ;)



__________________

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.
JimmyK


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The reason we are all here.

 

HOPE

 

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."
Tig


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Ivery wrote:

Thanks tight! Is the forum different? I got a new phone so maybe that's it. I can't find edit , history, profile or anything.

 Hi John,

If you are using a smartphone to view the forum, you probably have the "mobile" version of the forum selected. Go to the homepage and drop to the bottom of the page. Should be a way to change it to the webpage version. It'll be at the bottom of something!! Let me know if you have trouble finding it.



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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!

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Phoenix17


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Great news John! How sweet it is!   cake.gif



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Ruby Red


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Congrats John!!  I'm so pleased for yousmile   Like Tig said  "an official Dragon Slayer" that's what you are.  Stay stoked enjoy this wonderful moment!!

Ruby



__________________

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)

 
Ivery


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Thanks tight! Is the forum different? I got a new phone so maybe that's it. I can't find edit , history, profile or anything.

__________________

Genotype 3  f2     vl 18,216,000. Hcv 7.260.  Alt 232. Fibrosis score 0.56. Necroinfl score 0.89    necroinfl grade a-3   sot 8-17-16 epclusa
Tig


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Hey John,

Congratulations Brother! An OFFICIAL Dragonslayer, yeah baby!!! Enjoy that new Hep C free life smile

Let us know how things are going. It's always nice to keep in touch, good luck...   



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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!

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Ivery


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Just got the call, I test negative for hep c !!!!! yessssss !!!! I just did my labs last Friday. Should of been sooner but life happens. Super stoked!



-- Edited by Ivery on Tuesday 6th of December 2016 07:27:43 PM



-- Edited by Ivery on Tuesday 6th of December 2016 08:10:54 PM

__________________

Genotype 3  f2     vl 18,216,000. Hcv 7.260.  Alt 232. Fibrosis score 0.56. Necroinfl score 0.89    necroinfl grade a-3   sot 8-17-16 epclusa
Observer


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Glad your bug was short lived. I hope you are feeling better and better now.

You could look at the flu as your body getting a kickstart to flush the meds out now that you don't need them anymore.  

@Canuck- you do have an amazing gift with words.

A



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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 
Ivery


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You are awesome with words Canuck!  And totally right, thank you.



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Genotype 3  f2     vl 18,216,000. Hcv 7.260.  Alt 232. Fibrosis score 0.56. Necroinfl score 0.89    necroinfl grade a-3   sot 8-17-16 epclusa
Canuck


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Ivery,

I think you're right ... "a little bug".  Too bad you had to catch that, but glad it was short-lived.

Unfortunately, it was perfectly timed to happen right when you have just finished your pills! Just to unnerve you, undermine your confidence, raise doubt as to - what's that! We all do it to some degree, vacillate between hope, doubt, objective logic and worry. The feedback of ALT, AST's and UNDS helps to combat doubt bigtime. 

Singsong had a good analogy, she felt her pills (while she was on them) were like her "security blanket" - feeling safe, comforted, knowing she was wrapped up under the warmth of their protection. Somebody else felt their pills were like "buddy in a bottle", their "big brother", standing up for them. It' s kind of a "savior syndrome", how endeared we become to the pills that we know are helping us. Many feel surprisingly ... alone, "funny", mixed feelings, taking that last lonely pill and then ... no more pills! A weird naked "nothingness", after so many weeks of dutifully practicing what we know is helping us. Suddenly our "buddy" pills are gone, we are alone, nuttin to do, no job to perform, with time on our hands waiting for feedback, we spin our wheels, we have time to reflect, wonder, worry, fantasize (or dream!).

You will always carry fond memories of your epclusa buddy, and shall be reminded of him as soon as you get that und results of your blood draw.  

I loved (I think it was Observer's) thought, about fear and trepidation - the ques. was ... "But what if I fall??!!", the answer was "Ah, my dear, but what if you fly??!!

Also, for some reason, being through this "state of flux"with treatment, sometimes our bodies are still subject to catching colds, flu, and "sorting" things - I know I went through a period of this, during, AND, after treatment, of "getting/catching" things, extra tidbits just to plague and torment me it seemed! Your flu thingy is a one-off, you'll feel ever so much better with that und result! Guaranteed. 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)
Ivery


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Guys, maybe it was a coincidence and a little bug. but since I ran out of meds. I had stomach cramps, bad sweats one night, headaches,  and body aches. mild flu like symptoms but passed after a few days. 



-- Edited by Ivery on Thursday 10th of November 2016 07:25:59 PM

__________________

Genotype 3  f2     vl 18,216,000. Hcv 7.260.  Alt 232. Fibrosis score 0.56. Necroinfl score 0.89    necroinfl grade a-3   sot 8-17-16 epclusa
Ruby Red


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Congrats Ivery!!   Bravo!!!



__________________

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)

 
Ivery


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Thank you guys! Canuck, it's 4 weeks from eot to check viral load. yes that ribs was awful!!!!  sweet tooth is still here.haha but I try to keep it off in the gym.



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Genotype 3  f2     vl 18,216,000. Hcv 7.260.  Alt 232. Fibrosis score 0.56. Necroinfl score 0.89    necroinfl grade a-3   sot 8-17-16 epclusa
Cheddy


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Hey John,

So good to hear from you.  Congratulations on reaching EOT.  You have accomplished a lot in the last five years!  Keep up the good work.

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

 
Phoenix17


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Congratulations on your last pill Ivery!! SVR is next!



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Canuck


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Hey Ivery!

CON-GRATS!!, Happy last pill day!

Now THAT is a nice sound ... (the silence) when that last pill no longer rattles in your bottle!

12 weeks of epclusa done! Nice. Well, actually, it was a wee bit longer for you than 12 weeks, wasn't it ... as that first doc wanted to try to make you do that cruel riba, thank goodness that only lasted 27 days (I think those 27 days must have felt like 100 for you)!, but ... we will choose to try to blur that unhappy event from your memory. I am just ever so pleased you had the get up and go, the gumption, to go out there and find a new doc, and get yourself changed over to epclusa! Good going - that was very commendable work.

I think I recall you saying the new doc (who ultimately gave you the epclusa) would not be doing any viral load bloodwork again, until after you had finished, so, does that mean your next viral load draw will be now, for EOT, or at EOT+12 weeks?

How's that sweet tooth thing goin? 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)
Phyllis


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Ribavirin is a horrible drug. And I think the docs need to tell us what we might experience eot, so we can make a more informed decision about being treated or not. 

I had no idea it would be like this. But I must say I'm slowly getting better. 



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PZ

genotype 3

sot. 12/11/14

eot. 5/15

Sovaldi and Ribavirin for 24 weeks

clear of virus as af 4 /16

 
Ivery


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Thank you tig!  nothing new to report yet. my Doctor said we didn't meet until 4 weeks after eot. so I'll see him on the 17th.  the best piece of advice for a new member. get a pill box with the days on it! saved me more than once.



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Genotype 3  f2     vl 18,216,000. Hcv 7.260.  Alt 232. Fibrosis score 0.56. Necroinfl score 0.89    necroinfl grade a-3   sot 8-17-16 epclusa
Tig


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Hey John,

What's going on? It's good to hear from you. Sounds like congratulations are in order! You made it to EOT, good job!!

So fill us in... Any new tests you haven't shared? We're all excited to hear the news when you get it. Epclusa is the ticket for every genotype and is so much easier. The people coming up behind you like reading this kind of message. Very positive!

You made it to



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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!

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Ivery


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Hey guys, well I took my last pill today!! doctor said he will see me in 4 weeks.  I couldn't imagine still being on ribva. what a horrible drug. this was as easy as breathing.



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Genotype 3  f2     vl 18,216,000. Hcv 7.260.  Alt 232. Fibrosis score 0.56. Necroinfl score 0.89    necroinfl grade a-3   sot 8-17-16 epclusa
Sydhanrahan


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Hi John.

so happy to hear you're feeling as though you're returning to your old self so soon. There's still a whiff of RIBA left for quite a while but the bad head messing stops pretty quickly doesnt it? 

Cheers,

Syd

 



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.
Shadowfax


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Tig56 wrote:

Hey John,

Watch out for that sweet tooth, lol! We've got a *forum discount with DQ, for those days when it gets bad. Glad to know you're doing so well smile

*jk   ( working on it though)

 

 Sweet tooth, someone called my name! smile   * I had one before TX, during and still after. It's my guilty pleasure he said looking at a home made peanut butter cookie that is about to disappear.

I am glad you started the new protocol and should be feeling better soon when that Riba wears off.

Keep us posted.

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 *
Cheddy


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John,

This is excellent news.  That riba messed with my mood big time.

I am so glad you are getting some sleep! Talk about messing with your mood - lack of sleep will do it. 

Consider not taking the Benedryl all of the time if you don't have to.  My understanding is that it stops working anyway if you use it continuously or for more than a couple of weeks. - worth looking into.  Perhaps you have adjusted anyway?

The best news is that you feel like a champ!  That riba stopped me dead in my tracks, but that wore off surprisingly soon after treatmentbiggrin as far as I know.

Thanks for the update. This forum has been providing so much good new (well, with the profound exception of losing Dave).

Watch out for the sweet tooth. The results of that could put you in a foul mood!

Now where is your turtle going to sit? lol

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

 
Tig


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Hey John,

Watch out for that sweet tooth, lol! We've got a *forum discount with DQ, for those days when it gets bad. Glad to know you're doing so well smile

*jk   ( working on it though)

 



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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!

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Ivery


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Hey guys, well I'm feeling like a champ again and sleeping like a baby! Still taking benadryl also just in case. But man I've gotten a sweet tooth!!! Like real bad! Haha 



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Genotype 3  f2     vl 18,216,000. Hcv 7.260.  Alt 232. Fibrosis score 0.56. Necroinfl score 0.89    necroinfl grade a-3   sot 8-17-16 epclusa
Loopy Lisa


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Hey John,

Don't worry about the riba, it wears off soon. I was on Riba for my first treatment and as soon as I stopped I felt tons better. I do know it stays in the system for 6 months, so no making babies in that period - not that you intended too. Fantastic that you are now on the Epclusa medication, being a 3 you are on an excellent combination. I am on my last month of Dak/sof (I'm a 3b) and my liver panels went down to 15 for ALTS and ASAT after 4 weeks. After Riba and Interferon my viral count went up from 1 million to 15 and I began to get all kinds of problems. I am glad you found a better doctor and switched. Now I expect you will sail through this. I do think as the virus leaves the body the fatigue part lifts so it is probably also a factor in not needing so much sleep. I suddenly wake up every morning early, and don't need more than 7-8 hrs sleep waking up refreshed, A novel experience and rather strange after years of fatigue. The most beautiful part is the lack of brain fog. Keep us updated on how it goes...I was suprised how easy this is and I had no side effects at all after about 11 days - adjustment period.

Good luck and looking forward to your UND. :D



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Ivery


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I took riba/ sof for 27 days . I actually have a la few pills left.   



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Genotype 3  f2     vl 18,216,000. Hcv 7.260.  Alt 232. Fibrosis score 0.56. Necroinfl score 0.89    necroinfl grade a-3   sot 8-17-16 epclusa
robertsamx


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Hi Jonn, glad to see you skipped right over daclatisver and right into the good stuff (EPCLUSA)..  How long were you on Sof-RIBA? And how long is your treatment with EPCLUSA?   Your fortunate to have been switched to EPCLUSA. The trial results are very very good on that R/X.  People on that treatment reports slight to no Side effects.    RC

 



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 M-64) 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
JimmyK


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Riba takes some time to wear off but it does. Mine took almost six months but I was on it for 3 so you should begin feeling better soon. Going straight into another treatment may slow the process down some as you are not clear of drugs but it will work out.

No blood work during treatment is new to me. Monitoring of CBC's and Liver Panels at least are a good idea in particular with a new drug.

Best of luck to you and yes this is exciting!

 

JimmyK

 



__________________

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."
Ivery


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OK guys, I'm starting my epclusa treatment page here. I did my second dose today. I'll be glad when the side effects to riba were off. Had insomnia again last night. The nurse from the pharmacy called me earlier. She said I was the 3rd patient they had on epclusa. So there learning still about it also.  They'll call me once a month for followups. And my doctor said no blood work will be needed during treatment.  That's another small relief. 



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Genotype 3  f2     vl 18,216,000. Hcv 7.260.  Alt 232. Fibrosis score 0.56. Necroinfl score 0.89    necroinfl grade a-3   sot 8-17-16 epclusa
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