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Post Info TOPIC: Annie and Epclusa May 10/19 SOT


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RE: Annie and Epclusa May 10/19 SOT
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Well... (Annie and all) - over in the UK they are still! (or maybe more accurate to say) they are "again" talking about their blood scandals, or "continuing" to talk about them (in a renewed fashion) - but talk is talk, wonder where it will lead as far a tangible help for anyone.  confuse  C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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that is so sad that they used blood with elevated LFT's . wow cry



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Actually Annie, we fought very hard for and finally won a second class action lawsuit for compensation for people infected outside of the arbitrarily chosen window of 86-90...

(that was just to try to cover their behinds about when they knew the blood was compromised with HCV despite years of knowing elevated LFTs were showing up in some the blood) 

however the hoops to jump through and criteria expectations were pretty strict and frustrating. I had the actual batch numbers of my tainted blood on a letter from the Red Cross informing me that I had been given tainted blood, was at stage 3 fibrosis and still had to provide 25 years of all medical records, get biopsies again and fill in thick application forms , get my Drs to document my whole history and on other forms etc etc etc... 

I think unfortunately there was a time limit to apply..but you could check the Klein Lyons site and see if hopefully I am incorrect.

 



__________________

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

3 years...post tx... successful dragon slayer 



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Canuck, I am very grateful to be in Canada with our health care system.  I know in Ontario, when the government first took it over, it was very good and we had lots of doctors here and we were admitted to hospital when we needed to be.  Over time, the costs grew and the cutbacks came and now we don't have enough doctors and not enough hospital rooms.  People spend days sleeping in the ER because they don't have an available bed for them or they get sent home only to get worse and end up back at ER.  It's definitely not the panacea the rest of the world thinks it is but, it is much better than most.

The class action for tainted blood is only from 1986 to 1990.

 



-- Edited by Annie on Sunday 19th of May 2019 03:27:15 PM

__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



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Hey Annie,

You touch on the good and bad of our Canadian "system" - so many from other countries envy us, but it is always best to live in a country and experience what health care here is really like, for yourself - the Canadian system(s), is not always as stellar as it appears to others. Now, given - some poor people, in some poor countries would see this place as unheard-of dream-care. But the reality is that for some of us here, we still just can't get what we need, for some of us here, we can't afford what we need, for some of us the outlets and options just don't exist, to enable us to get what we need. 

That is why I thank my lucky stars (every day) that i was successful in getting into my Vosevi trial - never in a million years would i have got those good drugs or the primo care I received otherwise, at the time I needed to be treated. in 2015/2016 I had very limited choices if I had not been successful in winning a seat in my trial. As well, I got into a "follow-up study" post-treatment. Both of these trials provided me very good care, good and frequent labs and testings, and close following - I was/am very lucky - it would have been such a different story for my health care, had it not been for these trials.

Things are improving in Canada (when we speak about standard HCV treatment), altho slow as usual, it is better than even a few years ago. Every Province is like a world of it's own! when it comes to health care, some provinces doing things a bit better than others. 

I am glad you did not have to wait too long to get to treatment, that they did not keep you waiting longer, and, that you were diagnosed and treated in an era when it was likely you would be able to get primo drugs such as epclusa - you are lucky you got the good drugs of today like epclusa. Had you been diagnosed prior to 2015, you too might have been facing some less savory treatment choices back then.

You and I should be very grateful for what we have received. : )  C.

Oh, BTW - have you ever received any advice or council on possible assistance or compensation regarding transfusion-acquired HCV from the 70's - just wondering? We have had a number of folk from this continent and from abroad who acquired their HCV via blood products and some who I think gained some forms of assistance/compensation.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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I know there are problems with the medical system everywhere but where I am we're having big cutbacks right now and it's close to impossible to get any extra tests run if they're not absolutely necessary and, if you don't like your doctor, well, good luck in finding another one.  Wait times can be way too long and every government that gets elected runs on cutting down wait times but it never seems to happen.  Health care spending has been crazy.  I'm thankful to be able to not worry about having to pay every time I see a doctor but the downside to having it run by the government as "free" means too many people are at their doctor or local ER for every cut or runny nose.

All that to say I think my family doctor and Hepatologist are both running all the tests they can and I've been able to be treated a lot faster than I thought.  No matter what, this dragon is going down!!



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



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I agree Lam, PCR's best show relapse, BUT none of us are relapsing much at ALL these days!  : ) I am not interesting in following my ALT and AST so much, because it might hint a relapse is occurring, my ALT and AST might also show me other things, more general info and perhaps even things going awry aside from liver per say, so having good thorough labs done (enzymes and much more), all along, and continued, as part and parcel of our long term following is a good thing in my book. 

Your SVR24 is a lovely thing Lam. Annie will be there too one day. : ) C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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During my 20+ year history of living with Hep C, once discovered back in 1990 my liver enzymes were never elevated, even when I was feeling worst just before I started Epclusa last year. IMO I don't think you can rely on just monitoring liver enzymes to chart the course of Hep C or monitor for relapse. You need the viral load. Of course I might just be an edge case at the tail of the bell curve. I'll insist on yearly viral load tests even though I reached SVR24.



__________________

Male, 66, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. Week 10 VL not detected, ALT 12, AST 18. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24.



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I like it when they spend money on frequent labs - constant feedback is good (in my book), but that's just me. I am still a big advocate of 4 week LFT's and PCRs. I also like both LFT's and PCR's done at EOT and then of course again at EOT+12. I am also big on them doing lots of careful pre-treatment assessment labs, routine bloods/kidney function tests and having a some of these repeated if required at least once during treatment, like at the 4 week mark, just to make sure all our systems are being cooperative in the programme.

That's good (for whatever particular liking or reasoning your doc has) that he will do PCR at EOT+4 weeks and then do a PCR again at EOT+12 weeks - it's just a little different than what others do, likely just his preference - other have a preference to do the PCR at EOT and then again at EOT+12 weeks (your doc choosing EOT+4weeks is just a little dif) -  doesn't matter much either way, at least you are getting 2 PCR's done after EOT.

You could always just ask your doc nicely if he would "please" (to provide you with some possibly comforting feedback) let you have your LFT's and PCR done at week 4 (as well as at EOT+4 week and your SVR12), and see if he doesn't just give you that extra one.

I am glad you're not feeling too bad!  : )  C. 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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i got tested at 4 weeks, then not again till 3 months after tx. 

they are that confident in these new daa's 

if the other liver tests come out better that is good news



-- Edited by 5-1-18 on Friday 17th of May 2019 07:13:54 PM

__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO

Tig


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Your doctor is correct, testing after the first four weeks is unnecessary, but has been practiced by many over the years. When I was on treatment, (back when most of today’s  Dragons were still infants), complete testing and I mean everything was done, including the PCR on a 2 week interval. Of course the rates of success were very low across most treatment protocols. Nowadays, it’s rare that success isn’t achieved, so the doctors aren’t as aggressive with testing. We had what was known as “Response Guided Treatment”. If we didn't meet a specific testing criteria, treatment was often stopped for response failures.

Your doctor’s PCR testing protocol is sound. Many refuse to even do an EOT PCR and wait until the EOT+12 timeframe. My thought finds that difficult to accept, because it leaves the patient wondering anxiously for results. We have enough anxiety! One thing of note and it’s a good one, if you are undetected at EOT+4, the odds you will achieve SVR12 are nearly identical. While SVR12 is the goal, knowing you’re undetected at EOT+4 provides you with a huge morale boost and the knowledge that things are golden! 



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Tig

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

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I'm already on number 8 tonight!  It is going fast.  The last few days have been really good.  If I didn't know I was taking anything, I wouldn't know I was taking anything.  If that makes sense :)

I talked to the nurse at my doctor's office about the bloodwork and she said that checking the VL 4 weeks into treatment doesn't really mean anything because almost everyone shows UND while they're on treatment.  Apparently the guidelines in Ontario, Canada are to wait for EOT + 12 but Dr. Marotta likes to check EOT + 4 and EOT + 12 so that, in the unlikely event it doesn't show UND at 4, he can start planning other treatment options.  I have a lot of confidence is this doctor and in Epclusa so I have no problems with his methods.  On Aug. 29, I will show UND and SVR12 in October/November.

 



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



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I agree with the others...treatment isnt a one size fits all situation..silly pharmacist...

She must not have known any people with hepC ...fatigue and insomnia together are kinda symptoms of HCV

If you like drinking coffee and miss being able to..make sure to only drink organic coffee and maybe have it in the a.m...... the chemicals used in growing coffee can be hard on your nervous system. 

Its great that you have some energy and channeling it with a workout is brilliant .

youre doing great Annie Dragon Slayer

 

 



__________________

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

3 years...post tx... successful dragon slayer 



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Your pharmacist might have/should have qualified her comment a bit better, as yes, quite a few people can (and do) experience "fatigue" as a so-called "side" of being on a DAA, but fatigue is not necessarily "a given" as a side. 5 is quite right in saying it is a different ride for each and everyone of us - your pharmacist should know that - but she is probably limiting her comment to being a little too short by saying what she most "commonly" sees or hears about. We have had others here on DAA's, mostly I seem to recall on Harvoni, who had "vivid" dreams, and also Harvoni folk (mostly) but as well Zep and Mav who experienced some "high energy" - some called it the Harvoni high. Some people have experienced both (fatigue and energy periods) while on their DAA's. Others, hardly experience much of anything at all - it seems to vary a fair bit. I am glad you are riding the waves that come, using good common sense in how to cope, take comfort in knowing that every day that passes and every pill down the hatch you are getting the very best help there is to knock this virus out of your body forever. Yay for epclusa and for your cure that is happening as we speak! : )  C. 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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I'm keeping a journal, just jotting things down.  Today was much better than yesterday, maybe because I worked out and/or because I didn't have a big coffee in the afternoon.

I appreciate you all!!



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



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i agree with the others, it's a roller coaster ride of ups and downs and feelings and everything while on tx; and not everyone has the same ride.

keep noting how you are feeling and when; i couldn't have made it without our forum friends here



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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This is good news, Annie.  I'm so glad you are getting your treatment. There are a lot of weird steps in this journey and taking that first pill is one of them.  It will be over in no time, well, it  looks that way when it's over.  For now it's one day at a time and one glass of water at a time.  

Silly pharmacist.  I agree that it is helpful to communicate with people who have this experience in common.  I always said that nobody else get's it, but then, I wouldn't want them to have to.  I very glad you have support.  Chances are with Epclusa you will make it through with minimal side effects.  All that energy could come in handy though.

All the best to you, Annie.

 



__________________

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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Hi Annie,

You describe many of the same symptoms as others on these new DAA’s. Doctors and pharmacists don’t know the finer elements of these treatments. I don’t think they listen to their patients during the 5 minute checkup they bless us with. The increased energy and insomnia are well known side effects. You’re right though, they will settle down after 2-3 weeks. There are a lot of metabolic changes going on right now and what you’re feeling is your body adjusting to these awesome medications. 

 



__________________

Tig

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

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Just checking in.  5 pills down and things are going well overall.  I'm drinking lots of water so no headaches.  I'm sleeping well but not as long as I would like.  I have a lot of energy that I need to learn to put to good use.  I'm going to workout this morning to see if that helps.  I'm keeping down on the caffeine but yesterday bought a coffee while I was out and thought I was going to climb walls.  Lesson learned :)

I asked my Pharmacist what she would suggest if I have insomnia and she laughed and said "Oh no.  Epclusa will cause fatigue, if anything.  You don't have to worry about insomnia."  Haha  I had to start taking half of a gravol before bed to settle down.  Very vivid dreams too.  All in all, it really is going better than I expected and I'm sure these side effects will work themselves out.



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



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You go Girl!

Kudos and best wishes on your journey!

Bb, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)

Tig


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Well done, Annie! Congratulations on finally getting started and a successful gulping down of your first “Magic Bean”. The anxiety can be heavy at first, but gets much easier as you learn how they make you feel. It all levels out fairly quickly and you’ll barely know you’re taking something. 

Keep the water flowing (both ends). That tends to get much easier, too. Anytime you feel sluggish, drink a glass of water, mix in some electrolytes and chances are high you will feel better. Water is golden! smile



__________________

Tig

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

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Thank you to everyone for all the support.  It feels kind of lonely when nobody in my friends and family circle really understands.  They are all supportive though and I'm thankful for that.



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



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Canuck, I was so scared when I took that first pill.  My hands were shaking.  Felt kind of silly when I thought about it and the fact that the pills will save my life :)

I found out I made a mistake by taking it after a large meal and with lots of water.  Apparently it's much more effective to take it with a little food and water and then drink lots of water the rest of the day.

I went to bed about 1 1/2 hours after taking it and slept really well with the exception of having to use the washroom a couple of times.  That's new for me but I'll get used to it.  Woke up at 5 and feeling really good but might have a nap later.  It's going to be a cool(ish) but sunny day here, about 13C but good enough for me and my cat(Spot) to sit on the porch.  He needs a good brushing anyway.

 



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



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Annie wrote:

Pill #1 is down, along with a big glass of water.  Will keep you all updated.  

 

,

  so awesome annie , thanks for letting us share your journey with you



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Yay Annie

so glad you have started...that dragon of yours is in for a shock.  

Its pretty darn exciting and believe it or not, treatment will feel quick (specially compared to years of packing the virus)



__________________

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

3 years...post tx... successful dragon slayer 



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Big congrats Annie! : ) 

I left you a word on the other thread (where we were last posting), but SO nice to see us writing on your new, long-awaited "on treatment" thread. :)  C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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Pill #1 is down, along with a big glass of water.  Will keep you all updated.  

 



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment

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