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Post Info TOPIC: Mavyret.1


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thanks tig for your positive vibes!!!!



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62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.



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RLS, 

Those 2 year-ish old labs (the Harvoni era labs I think) are not too shabby, for someone who has been packing HCV for as long as you have (about 25 years?). Those results are good, considering, and to your favour. I am guessing though, that they might have done some kinds of repeat fibrosis assessments on you, just prior to your start of the Mav, no? 

I have not really studied up much on the "FibroSpect" test (prior to now) - your mention of it spurred me to research it a bit ... I put that info here - About FibroSpect - another fibrosis test

So, you have been keeping your eye on your bili's for while - because? ... I note your mild GB wall thickening in the ultrasound note - were you concerned about your GB, or, were your bili's very much higher in the past? The only other note of interest from the U/S was the mild fatty liver. 

Good you have that old ultrasound record to draw on for future comparisons. Valuable data those records are, when the same and similar blood tests are done, and further U/S's, are repeated in future, in the following your health.

Has anyone ever suggested having "fibroscans" done as well, in addition to bloods, and ultrasounds to follow you with?

So far so good for that BP "blocker" they just put you on - early days yet, only a month, so it will have to be a wait and see kind of thing for a bit yet eh?

As far as exercise, how much would fatigue (perhaps you have had some?) play into exercise tolerance now? Slow and steady as she goes bro, but exercise IS our friend, as is water, and good diet, but all in the careful right amounts. Best of all you can do everything now while being unfettered from that hitchhiking creep virus! biggrin 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)

Tig


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Ah Ha! You couldn’t stand the suspense, could you? That’s okay and obviously you now know things are working exactly as planned! You definitely should be undetected at week 4, but I’ve seen people that aren’t. I would be surprised if you aren’t though. Remember, this is a marathon, not a sprint. Takes time to kill all of those evil viral particles, but kill them you will!

Sorry to hear about the aches and pains. Hopefully (most likely) you’ll see most of those nagging things improve following SVR. If you feel better working out, do it nice and easy. Treatment doesn’t last that long and easy is good right now. That and WATER!

Congratulations on the excellent results. I’m excited for week 4! Good luck! 



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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I decided to buy a viral load test through link2labs and i just got my results for 16 days. Just over two weeks.... i was detected at 40.... i was the same way with harvoni... my dr made a mistake and i had my viral load at 2 weeks and i was detected at 27....  so looks like things are going well and i should be undetected in the next few days but the next test will be at 4 weeks... just A relief!!

No i am not measuring my water intake,  i am not quite that ocd.... i am always going somewhere, it would be to difficult, i have to much other stuff going on but i feel sure i am getting the water intake i need1

I had a couple bad nights this week... one night i slept 2 hours and felt like all my bones were aching, that happened again the next night but i got some sleep.  I finally decided to go to my doctor to get some pain meds in case that happens again!!!

Its not the first time i have had the aching bone syndrome. Any kind of that over the counter sleep medicine does that to me but not to the extent i had this week.

I feel the best when I exercise .. I always feel wonderful after hot yoga... so i havent slowed down to much, I think it will be ok.  It is a very time of the year for me, i just have things i have to do.... such is life!!

peace, connie aka angelseven



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62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.



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WOW - So many undetected @ 4 , 8 and 16 weeks! Congratulations to you all! You give me hope!! I have 12 days to go. Still feeling really good, no real side effects to talk about. I just can't wait for my appointment on February 28! It's killing me. So, I am GT 1b and RLS you are the 1st person I've seen on these forums to be GT 1b. I know Mavyret is for all GT's, but it's good to know another 1B.  I have not seen or read anywhere of any Mavyret takers who have not cleared the virus. It seems everyone on it so far has been undetected. Has anyone heard of anyone who is not undetected?  I know it may be too soon to know since Mavyret is not that old.  Anyway wouldn't it be wonderful if this is the drug that cures us all.  I too have a tiny bit of doubt that it won't kill it for good, but who wouldn't think that way after waiting so many years for a cure.  I will keep you posted on my lab results at EOT. Best wishes to all of you and thanks for the posts! 



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62 y.o female HCV since 1977, (40 years). Genotype 1B, Dec 2017: ALT 53, AST 48, PCR 70,500. Fibroscan, very little scaring. Treatment naive. Mavyret: 8 weeks SOT 12/27/17, EOT 2/20/2018. EOT PCR Undetected!!! June 20, 2018 SVR 17 weeks Not Detected. 

RLS


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Canuck, the last FIBROSpect test was done two years ago. Results below. I had a few biopsy's in the '90's that showed mild scarring.  I plan to have thorough testing one year after SVR.

Results of recent laboratory evaluation and liver ultrasound reviewed. No anemia. Kidney function normal. Mild transaminitis consistent with known diagnosis of Hepatitis C infection. Hepatitis C genotype 1B; viral load 5,220,000. HIV testing negative. INR normal. Fibrospect notable for Metavir score F0-F1, consistent with minimal or no liver fibrosis. Liver ultrsound notes mild fatty infiltration of the liver but no discrete liver lesions and mild gallbladder wall thickening without gallstones.

I've been on 150 MG of irbesartan for a month to reduce my BP. It has been working but still not quite to normal levels. Now that I'm off Mavyret I plan to do more exercise so hope that helps as well.

Angel, hang in there. Hopefully the side effects will subside. It is so worth it to eradicate this nasty virus!

rls



__________________

Male 54, DX 1992, GT 1B

2005 - Rib/Peg Relapse

2016 - 12 Week Harvoni Relapse

Mavyret (16 weeks), BOT 10/16/17, EOT 2/2/18. SVR 12 5/3/18



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Wow RLS! Pretty impressive LFT's. ALT 122 to 27, and AST from 88 to 34! Nice crashes. A nice boring bili too. Spells success! biggrin C.

Did you have any other out of wack bloods/conditions you are waiting/watching to normalize? I can't seem to recall if you ever said what kind of condition your liver was in - Fscores/fibroscans/ultrasounds, etc.

How's the BP thing going, what did they put you on and how does it seem to be working so far? Good and better I hope.



__________________

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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Angel,

Did you end up deciding to go have an early VL/LFT's at 2 weeks? Or are you going to wait until the 4 week mark? 

Good you are keeping up on the water intake. So, are you actually measuring how much you are drinking? How much water is it per day? 

I hope you have already cut back on your prior levels of stenuous exercise, tennis commitments/hot yoga etc., especially that you are feeling stressed, headache-y, grouchy.

You are new to these drugs, be very (extra) kind and restful to your body, and drink, drink, drink. Maybe spend some more quiet time at home, near a convenient bathroom. I know you said the physical exercise is important to you and generally makes you feel beter, but while on treatment, treatment has to dictate and have priority over everything you should or should not be doing. Coddle, comfort, soothe the temple. smile C.



-- Edited by Canuck on Thursday 8th of February 2018 05:18:51 AM

__________________

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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excellent news RLS!!!

Just put your attention of something else when you are wondering about SVR (easier said than done). Lol

I am about 16 days out now and starting to feel a little stressed out, headaches and  a little groucy in the evenings.... gosh, gotta long time to go... I think i am gonna have to try to stay away from people (LOL) i think i am just gonna keep my mouth shut and listen..

best of luck to you rls

connie



__________________

62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.

RLS


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Thanks Canuck. Prior to treatment my AST/ALT's were 88/122 and now 34/27. Viral load ranged from 3.2M to 2.2M but had been over 5.2M pre-Harvoni. I also watch my total bilirubin which was 1.7 pre treatment and now is 0.70.



__________________

Male 54, DX 1992, GT 1B

2005 - Rib/Peg Relapse

2016 - 12 Week Harvoni Relapse

Mavyret (16 weeks), BOT 10/16/17, EOT 2/2/18. SVR 12 5/3/18



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Wonderful RLS! Just what you (and we, all) want to hear! You are right on target! 16 weeks of the right, potent, drug combo this time. I know you have been here before and will remain brave and confident for your inevitable UND at EOT+12 week draw. The past was trying and very unfortunate to go through, but these drugs ARE dif, with this potent 3/4A combo, you have annihilated it. Get ready for more good news, because it IS coming. Hope you enjoying that no more pills feeling, and feelings of relief. biggrin C.

PS- was wondering what some of your before and after ALTs/AST's and VL's were?



__________________

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)

RLS


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EOT test results are in and still undetected. I will do my best to remain positive during the next 12 weeks of waiting.

rls



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Male 54, DX 1992, GT 1B

2005 - Rib/Peg Relapse

2016 - 12 Week Harvoni Relapse

Mavyret (16 weeks), BOT 10/16/17, EOT 2/2/18. SVR 12 5/3/18



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Big High 5 Waffle!! I'm UND at 4 weeks of Mavyret too. You did good!! I'm loving it. 

June



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F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.



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HEY! Waffle ...YAAAAAAAAAAAAAAAAAAAAAAAY! Beau-ti-ful. No longer can you say you are a 3a. You are now 3a-less. How wonderful! - a great big "zero"! So great you got an "early" UND!!

And get a load of those LFT's! From ALT 106 to 12, and, AST from 55 to 17. Yippee ki yay my friend. 5.8 million to zero in 4 weeks? - it's safe to say you are in full killing mode.  

I know you said before that you were trying to see/do something positive every day while you were on treatment, today very much qualifies!

Eat, drink (water), sleep and make merry today - today is a very nice milestone. Good for you. Very happy for ya. C. biggrin

 

PS - tried to send you this late late night, but we had a power outage, big storm/wind - but lucky the text was still sitting here for me to send now! smile



__________________

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)

Tig


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HOORAY!! This has been a stellar week for Dragon decimation. Mavyret is presenting itself as the real deal! 

WOOT!!



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Great news Waffle!!!!!!!  I know that is a relief!!!  My other friend is also undetected at 4 weeks!! 

have a great day,  connie



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62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.



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Results:   As of four weeks  ...  Not detected

 

 



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 30 yo, f, geno 3a, diagnosed 2007, AST 55, ALT 106, 5.8 million, PLT 224 

Started MAVRET for 8 wks on 12 /19/ 17. @4weeks Mavyret Not detected AST 17 ALT 12

6/1/18 final "undetected"

Tig


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Connie,

I would like to read the supporting information those people were referencing. The newest DAA treatments are relatively new, so the real world data pertaining to efficacy and long term effects are just now being compiled. They are still studying the effects Interferon and Ribavirin had on patients. I expect there will be a number of opinions and recommendations from the various medical professionals for years. We have to operate on the verified information, but there will continue to be use of off label treatment protocols. 

My Hep C Super Computer says:  

 



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges

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I am going to make a concerted effort to get to the bottom of this!!!  I wonder what Dr. Feld would say?

thanks,  connie



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62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.



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Please re-read the post I sent to you Dec 12 over in 

 

Mavyret, trying to start treatment!!

 

And some of the subsequent posts there.

 

Over there we had previously been discussing this at length, deciphering Dr. Feld's comments, and I had been giving some thought on how to interpret what the AASLD recommendations are for re-treatment.

Until a professional enlightens me otherwise, I am still of the opinion, that despite being NS5A/NS3/4A/NS5B experienced (as long as that is your only status, ie considering cirrhosis/compensation), Vosevi can be used as a re-treatment.

(My thinking is the opposite to what you wrote ... you said ... "you have no option for retreatment unless you took Vosevi in second treatment and then you could take  mavyret" ...). This is backward to what I am thinking - if you are already BOTH NS5A/NS3/4A experienced then Vosevi is the choice, over Mav.

The way I see the recommendations, if you are prior experienced with BOTH 5A/3/4A then Mav has a no-go for use for re-treatment, Vosevi does not restrict you from it's use even if you are experienced to BOTH 5A/3/4A.

I would like to see some better clarification on this matter as well! 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 have been told by several professionals that if you have taken 2 DAA's then you have no option for retreatment unless you took Vosevi in second treatment and then you could take  mavyret....I sure would like to know if this information I have obtained is accurate!! 

What do you think Canuck?

Peace,  connie



__________________

62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.



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Thank you Canuck!!!

hugs,  connie



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62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.



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Angel,

In regard to the old Mav trial particpants ... you asked ... "Canuck, were those trial folks relapsers???" ...

Yes. (One of them was for sure).

In my post about them, I mentioned ... "china cat (who was on 12 weeks for re-treatment) was UND at 4 weeks" ...

Angel and RLS - brush those doubts off your strong shoulders, this 5A/3/4A combo is waaay more effective than your last 5A/5B, and worlds away from those cruel old-world drugs. 

Some trial data analysis from the early MAV trials: 

... Overall, the DAA-experienced population in the MAGELLAN-1 study had broad representation of baseline NS3 and NS5A polymorphisms, including polymorphisms at key NS5A positions M28, Q30, L31, H58, and Y93 that confer resistance to earlier-generation NS5A inhibitors. Additionally, all 8 patients previously treated with ledipasvir/sofosbuvir achieved SVR12 despite the presence of the NS5A resistance-associated Y93H/N polymorphism in 5 patients and multiple NS5A polymorphisms in 4 patients. This confirms in vitro data that variants at the Y93 position are susceptible to PIB[22] and suggests GLE plus PIB is an effective treatment for those with a baseline polymorphism or treatment-emergent substitution at this position. Furthermore, 14 of 15 (93%) patients who failed a prior dual (NS3/4A PI plus NS5A inhibitor) or triple (NS3/4A PI plus NS5A inhibitor plus NS5B polymerase inhibitor) DAA regimen achieved SVR12 ...

RLS, Happy EOT day tomorrow! Yay for the bloodletting on Friday! IMO, your last 8 week UND holds MUCH more virological significance (this time around), versus your UND of the last regime. 

biggrin 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)

RLS


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Connie, let's hope the mav works for both of us but if for some reason it doesn't, please don't give up trying. Never give up. Each medicine attacks the virus in a different way and if mav doesn't work I'll try something else and if that doesn't work I'll try another. At least I'll know that for a period of time my body experienced life without a viral load.



__________________

Male 54, DX 1992, GT 1B

2005 - Rib/Peg Relapse

2016 - 12 Week Harvoni Relapse

Mavyret (16 weeks), BOT 10/16/17, EOT 2/2/18. SVR 12 5/3/18



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RLS, Wow, you have been working at kicking this virus in the butt for quite a while... Haronin was my first attempt..... I know you are going to clear this time... I was barely detected at two weeks after starting harvoni and undetected at 4 weeks.... then i relapsed 1 month after EOT, i was really shocked... if i relapse again, that is it for me!

best of luck!!  Connie



__________________

62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.

RLS


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Connie, I became undetected at week 8 on Mavret. Test results after week 4 were good but still detected virus. My doc confirmed what your pharmacist said that it can take time. I was on Harvoni two years ago which took 4 weeks to get undetected only to relapse. I participated in a trial in 2005 with ribavirin and interferon with similar results. That treatment was way more difficult than today's pills.

I really didn't have much fatigue from mavyret. Had some nasty headaches at week 10 but that was resolved with more water.

 



__________________

Male 54, DX 1992, GT 1B

2005 - Rib/Peg Relapse

2016 - 12 Week Harvoni Relapse

Mavyret (16 weeks), BOT 10/16/17, EOT 2/2/18. SVR 12 5/3/18



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Thanks tig,  i am drinking tons of water for sure.  

In talking with the pharmacist today he indicated that becoming undetected with mavyret is a relatively slow process, and now reading this below i am not going to freak out if i dont have the same results at 2 weeks that i had with harvoni at two weeks.

RLS, congrats!!  What was your past treatment and how quickly did you become undetected with mavyret?  Did you have some fatigue?  So glad the treatment was easy for you.... Yep, i know what you mean about worrying about a few viral particles replicating.... just change your thought when that comes to your mind..... that is going to be my goal.

So glad you are done!!!!!

Canuck, were those trial folks relapsers???

 

connie



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62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.

Tig


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Congrats on the coming EOT!! Don’t listen to that voice, you are DONE and so is that Dragon!



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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RLS


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112 days and 336 pills. Tomorrow is EOT! While I'm happy my 16 weeks of treatment is over, I can't help but worry that without the Mav there's a minuscule amount of the virus that will be able to go viral again (as happened in my two previous attempts to eradicate this thing). It is now out of my control and I'll remain positive about the outcome. All in all, mavyret was not difficult for me to take.

Hang in there Angel, it will be over soon!

Have VL and liver function tests on Friday and will report the results next week.

 



__________________

Male 54, DX 1992, GT 1B

2005 - Rib/Peg Relapse

2016 - 12 Week Harvoni Relapse

Mavyret (16 weeks), BOT 10/16/17, EOT 2/2/18. SVR 12 5/3/18

Tig


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Canuck wrote:

 In some of our "old" Mav trial people - Skimily did 8 weeks treatment and did not get her UND until the halfway point, NRA4ever on 12 weeks slowly dropped his VL too, (I missed telling mpls about chinacat and freesoul) but freesoul on 8 weeks treatment was dropping but still detected halfway through, and china cat (who was on 12 weeks for re-treatment) was UND at 4 weeks. Regardless, they were all successful. We all become UND in our own time.


 I knew you had a photographic memory....  



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Ya, me too, I can hardly wait to hear of everyone's upcoming VL's and blood results! This is all just TOO exciting! A perfect storm of MAV bloods wafting through the virtual air around here, all about to rain down some refreshing good news on us. We are waiting on Waffles 4 week results, and Dandelions 4 week, and now Angels early 2 week one! And as mpls is just speeding right along, it's not too many more weeks before she will get her 8 week EOT VL too! And RLS, he must be finished his 16 weeks about now, and he being UND at 8 weeks, I am hoping we will soon see what his EOT VL result is too.

I was lucky (in many ways!) to be in a trial. For one thing, like you all, I also got the new powerful DAA's, and, I got frequent bloods simply because it was required for the trial. I know other people (by trial or by choice) who also had frequent VL's done. Nice in the U.S. that you can direct/order and buy your own labs if need be. I would not be able to do that easily in Canada! During my trial I was able to get VL's at day 1, week 1, week 2 and week 4 (and of course at my 8 week EOT, then 12 week SVR, 24 week SVR) and due to a continuing trial I still get VL's and bloods done every 6 months. I "crashed" my VL early (was UND at 4 weeks). Technically I was not UND then, until the halfway mark through treatment (being on an 8 week treatment).

Everyone's VL's and bloods will decrease differently, it's the downward bit that is key, and it will happen sooner or later. Some go UND early, like me, and like many others on these new DAA's. Some go UND more slowly. Both Angel and Dandelion and RLS will know how to be patient as they have gone through watching their VL's drop before.

Be happy when you see ANY downward direction, in VL's or LFT's. All of it is rewarding.

In some of our "old" Mav trial people - Skimily did 8 weeks treatment and did not get her UND until the halfway point, NRA4ever on 12 weeks slowly dropped his VL too, (I missed telling mpls about chinacat and freesoul) but freesoul on 8 weeks treatment was dropping but still detected halfway through, and china cat (who was on 12 weeks for re-treatment) was UND at 4 weeks. Regardless, they were all successful. We all become UND in our own time.

You can just just never tell what "day" you are going to go UND! But it is a good day. All the days are good, really, right from the very first lucky day you popped that first powerful miracle pill down your gullet!

Onward! I kin hardly wait to hear more of this good news to start trickling in. biggrin C.  



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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.

 

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Tig


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I’m curious what your two week results will be. The viral load should be noticeably decreased, if not gone. Hard to say, you’ll be the first! If you were having your liver enzymes checked, you’d see improvements there, too. 

All of the bathroom breaks tells me you are hydrating properly and adequately! Keep it up!



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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I am glad to know I am not the only one starving all the time!!  mpls, are you not working out because you are tired?  I play pretty competitive doubles tennis and it just wipes me out now.  I also do Bikram Yoga, that,  I can tolerate as I can just sit down if I get tired.... I am going to try to take off of exercise two days a week. I mentally feel so much better when I work out, but my body is struggling with it.

I ordered myself a viral load test for 2 weeks through link2labs for 70.00.  Doctor did not order it but I just want to see what is going on....then I have viral load at 4 weeks after start of treatment as ordered by my doctor.

Its hard for me to travel around Houston with all this water consumption... it never fails I stop to go to the bathroom somewhere and the restrooms are locked or broken.  That water goes right through me!!!

Peace,  connie



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62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.



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Great news Waffel and Connie, it's good to see your positive posts.  I'm in week 5 and feeling pretty good too. I have not exercised much on treatment, and i use to work out 3x per week. I've been really hungry and am eating larger amounts than I use to. I'm ok with that for now, and will hit the gym and get back on track after treatment. I'm in this forum under Mavyret.2 and will post my results after 8 weeks. Hang in there, I'm so glad we're all doing well!!



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62 y.o female HCV since 1977, (40 years). Genotype 1B, Dec 2017: ALT 53, AST 48, PCR 70,500. Fibroscan, very little scaring. Treatment naive. Mavyret: 8 weeks SOT 12/27/17, EOT 2/20/2018. EOT PCR Undetected!!! June 20, 2018 SVR 17 weeks Not Detected. 



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I just overdid it yesterday, I am going to have to slow down on my exercise program for sure.... I crashed at 7 pm.... LOL sleep is definitely affected though, I crashed for an hour and then am usually up and down all night waking between 4 and 5.... such is life

have a great day,  connie



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62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.



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So wonderfully amazing to hear you're doing so well Connie!!! 

June



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F, 67, HCV since1980, GT 1b, Semiannual LFTs, Ultrasounds. First treatment Harvoni, SOT 1/2/2015, relapsed June 2015. Fibroscan F0-F1, LFTs only slightly elevated. Second treatment Mavyret 16 wks, SOT 1/2/2018, EOT 4/24/2018.



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Thank you,  Fortunately this medicine is pretty well tolerated after 6 days.  No real headaches, a little fatigue , no big deal!!!

Have a nice day,  connie



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62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.

Tig


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The information on fatigue comes from several areas. Most of the written reference is found in the trial data, as well as the manufacturers monographs. The real information comes from individual patients that experience it firsthand. Keep in mind the actual number of cases related to Maviret/Mavyret are still to be determined since it's so new to the market. Here's one statement with some figures. YMMV

“Glecaprevir/pibrentasvir was generally safe and well tolerated, with no drug-related serious adverse events and three treatment discontinuations due to adverse events. The most common events reported by at least 10% of individuals were headache (19-24%), fatigue (10-19%) and nausea (10-13%).”

There is additional study data listed on the Endurance 1 & 3 trial pages. You’ll see the incidence of fatigue is one of the most often discussed adverse effects from Mav. The incidence of treatment withdrawal secondary to adverse effects is almost nil. The side effects appear to be very few, tolerable and easily managed. 

Endurance 1

Endurance 3

 



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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thanks,  I did read this on the other thread... I just post wherever... bottom line, I am guzzling it down, believe me!!!!!!

thanks for reposting, I am reading again!!!

Hugs,  connie



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62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.



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Hey! Great you got started Angel!! biggrin

I'll post here (on Norwegians thread), but about a week ago we were talking "water intake" over on the thread that you originally  started called "Mavyret, trying to start treatment" ... I can only repeat/paste over here, what we were previously discussing over there ...

... Of course you can/could! Not impossible, although you will feel you don't "need to", are not thirsty, and it is difficult to force yourself to drink more water than you want to or are used to doing, and of course it is not that fun (inconvenient in fact) having to go to the loo all the time. But when you are on these powerful anti-virals, water is your best friend (in so many ways). 

This topic comes up time and time again, why, how much water, etc - aim for dilute colored urine, very pale yellow, let that be your guide, not thirst or inconvenience - strive for that gal of water per day and judge by how you feel and dilute color of urine.

I can tell you, I could make myself feel better and could cure a headache on treatment, just with my water intake alone. (Of course, you have to be doing everything else correctly as well, keeping sufficient electrolytes going into you along with the increased water, treating yourself with TLC, good diet, enough sleep, less stressful demands of yourself). But these drugs need to be transported, and their aftermath needs to be excreted, in a non-dehydrated body. Especially so in the SOF based regimes in which the kidneys do a lions share of the work. But all the DAA's need your body to be in a non-dehydrated state.

We have found (anecdotally) many people do far better (as far as how they feel) if they are extremely well hydrated while on anti-virals. Strive to reach that gal per day when on meds, a gal a day spreadout/drawn out over a 24 hour period. I actually found I needed to keep on with the water for weeks after I had finished my meds. 

I was never a water drinker (prior to treatment), I was one of those blindly chroniclly dehydrated people, but the lesson of being on anti-virals finally helped me to learn how important water is to a body, for all of it's functions (on anti-virals, or not)! It made me practise what i already knew, but never did very well before.

To this day I can cure, improve or minimize a headache merely by increasing my water intake. 

You will find about a million dif opinions on-line about how much water a body should drink in a day, on a normal day - but these are not normal days when we are on anti-viral drugs. There are algorithms based on wgt/sex/etc., etc. Here is yet another one! ... a 120 lb. person is the example here (low intake would be .5 ounces per lb.) higher intake would be 1 ounce per lb. ... 120 lbs. X 1 ounce per lb. = 120 ounces per day. That is only 1 cup shy of (8 ounces less than) a full gal (128 ounces).

It is very hard to induce "water intoxication" or hurt yourself from simply and safely increasing your water intake - unless your doc had, for some odd "rare" good reason, expressly forbade you to drink lots of water while on these meds - otherwise I would definitely drink a lot of water! Just make sure you are well nourished and get sufficient electrolytes.

Image result for water by the gallon photos

 

 

Tig is quite right about taking every care while on treatment, about strenuous activity and pushing yourself.

Stretching your increased water out evenly over a whole day, and getting sufficient rest are very good things. smile 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 am honestly going to try to cut down the tennis... we have two leagues starting, since I am captain of one I can sit myself out and chill...

well my weight is 135 so 70 ounces would be good, I am getting more than that..

thanks for the info about the meds and metabolism.... do you happen to have any links so I can get more information on this... I had trouble finding anything,

thanks loads,

connie



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62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.

Tig


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The fatigue is related to the demands being placed on your metabolism (body in general) as a result of treatment. You may need to back off the extra physical demands, like tennis. It’s good to stay active, but if your body is telling you it’s tired, listen to it for the short amount of time treatment requires. These are powerful drugs and they affect every system in one manner or another. 

The recommendation is one gallon per day or half your body weight in ounces. I have found that people that follow the gallon rule tend to have better outcomes. If you’re feeling poorly and don’t know why, try to increase the water intake. It has helped most people here. Switch up water with healthy juices and smoothies. That helps break up the water monotony!



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hey all, I am on my fourth day now.... had a couple little problems... first night felt like I could not swallow... drank water and that went away... Monday I got rash on inside of my arms while playing tennis.... and that went away in about 1 hour.... I am starting to feel pretty wiped out in the afternoons.... I am going to have to try to take it a little easier which is  a joke, to much to do!!!

I am drinking so much water... maybe 3/4 of a gallon a day, and I absolutely feel that is all I need... I have heard varying things about the water consumption... so who is right, that is the question... I gotta go with my body...... I drank to much when I got up and got stomach cramping for a short period of time... we gotta be careful.

Glad you are doing ok Waffle, that is something to look forward to!!

Wondering what causes the fatigue.... is it virus die of??

Peace,  connie/angelseven



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62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.

Tig


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No kidding! That sounds pretty darn good to me, too! Glad that you’re staying hydrated and active. Keep it up!

One month down, GO-GO-GO!!!



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hey Waffle,

Had been wondering how all was going for you.

What do you mean "not much to update on"! - that was an ex-cell-ent report! biggrin

Great you are feeling as good as you are - you are lucky (in many ways), no sides to speak of, got yourself one of the worlds best DAA's that exist, and sport a very good attitude! smile

Funny, what you say about that cleaner feeling/the after-rain feeling, we had had a few here who said/felt/experienced almost the exact same sort of thing - they just "knew it" (a sense of feeling cleansed, inside/a "lessening")! Nice.

Great you have box number 2 in hand. Bet your ALT and VL has already been falling. We will soon see what good news your 4 week results show, and you will find out if you will be on for 8 weeks or 12.

I am really enjoying the sound of all the things you have been doing, very positive stuff. Don't be tempted to do toooo much though, just make sure you're not pushing yourself too hard, self-TLC and some rest are important components of treatment too.

Wonderful you feel the weight and fatigue lifting. Smart you are still drinking.

I am so happy for you that it is going well! biggrin 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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There isn't much to update on right now, which is a good thing!

I can confirm I will get blood results in next week... I really think it will be good news, If it makes sense, I just feel it. It feels cleaner. Like after a nice rain. :)  ...

 

 

I picked up another box of meds because I'll be starting the next four weeks in just a few days. At this point I don't feel like I am taking meds at all. I do believe there was some kind of transition point around week 3 (for me). It seems the weight and fatigue is lifting. I really believe the Hep c severely effects the body/mind. I think because I was so young I just tried to power through it at times (which probably made fatigue set in quicker), plus, I had no choice but to deal.

I had always been super active, always played hard with the boys, great photographic memory, creative, etc.  so it just seemed super natural when I signed up at a local community based gym. It's gone well and I also have started walking more and have made a lot of new contacts and acquaintances in the community. I even found a small part time job, with some things lined up for something I have always wanted to do since I was a kid.  

 

 

I'm really excited for other people to get access to this. The next generation might not understand a full appreciation or the struggle that came before for these meds (I can't say that I do) but that is a really good (long-awaited) place to be at! 

Hopefully the next set of tests come back good... until then I will continue to successfully piece the other parts of my life back together!...

 

P.S. Still hydrating. 



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 30 yo, f, geno 3a, diagnosed 2007, AST 55, ALT 106, 5.8 million, PLT 224 

Started MAVRET for 8 wks on 12 /19/ 17. @4weeks Mavyret Not detected AST 17 ALT 12

6/1/18 final "undetected"

Tig


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I agree with Wendy completely! I’m very impressed with the ease of treatment you are all expressing. These are the newest of the new DAA’s and we have to be excited with not only their effectiveness, but their low side effect profile. So much better than the days of old standards of care. It’s just a night and day difference. Yeah!

WOOT!

PS: Hydrate



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Nice to see how you all are doing on this new med. Very encouraging



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Hi Waffle: I'm glad you're feeling good. That's fantastic.  I am just amazed how good i feel too, sometimes i feel great. I feel lazy in the morning, but that's okay. I take my Mav at 11 am with food. I haven't experienced any headaches or tiredness. I'm taking everyone's advice on drinking lots of H20. When will you get your 1st labs done? I have to wait until i am done with tx (8 weeks). It's going to be very difficult waiting that long. 



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62 y.o female HCV since 1977, (40 years). Genotype 1B, Dec 2017: ALT 53, AST 48, PCR 70,500. Fibroscan, very little scaring. Treatment naive. Mavyret: 8 weeks SOT 12/27/17, EOT 2/20/2018. EOT PCR Undetected!!! June 20, 2018 SVR 17 weeks Not Detected. 



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Thats great news about the meds knocking you out!!!  My friend is on her second day and feels great!!!  I should be getting the meds very soon!!!



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62 year old female      1a, f1-2, had virus 40 years   STARTED HARVONI for 8 weeks 11/19/14, relapsed one month after tx  ended in 1/15.  Fibrosis level was only .5 after fibroscan 12/15. Began treatment with Mavyret on January 20, 2018 for 16 weeks!  Ending May 12.

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