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Post Info TOPIC: Mavyret.1


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I am not sure my video attached or not... this program doesnt work on my iphone very well at all.. now i am on my ipad... I was fresh off the tennis court and not in my best attire...LOL



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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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Canuck, thank you so much!!  I am so happy that tonight I don't have to take any meds at exactly 6 pm with food!!  I have to tell you I was pretty OCD about that, I only had one slip up this last week when I was 8 minutes late.  It will be interesting to see how I feel tonight as the medicine usually makes me so tired and my joints ache.... I am having lab work on Monday and I have still not decided if I am going to have a viral load at 1 month after EOT or wait for the 3 months.. I will just ask my dr to order it and decide later... I do have a 1% chance of relapsing.  I am very paranoid after the harvoni relapse.. I made a little video if I can figure out how to use this program on my iphone, I will send it out... yep, my alarm just went off to take my meds!!!  Just deleted that alarm!!

I really appreciate all your support especially when I was on the fence about adding sofo... so glad I did!!!!  Praying for the best!!!

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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Happy EOT and Happy Birthday wishes are in order. Congrats on all counts. Great you will have the EOT VL done, so you will have that good news to carry with you and celebrate with, until your next VL at EOT+12 weeks (or unless you decide to have another VL done earlier, at EOT+ 4weeks, at which time you can just continue to party!). I think your nice celebratory party and gift actually started coming way earier, say about the time of week 5 and 6!  Like you say, you crashed very early and profoundly at week 2 and 4 on this triple, and were probably UND by week 5 and were UND at week 6. Add 10 more weeks of ammo to the war? ... this virus is dead and gone fer sure girl! For potency the NS3/4A GLEC you did in your triple is very potent compared to the double Harvoni you did - you've done it this time! 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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Hey Tig, thanks for checking on me..... yes i have one more dose of meds for tomorrow thank goodness!!!! It has had some strange effects on me... some days i am ok and other days i have been completely wiped out, like yesterday!!  I was in bed at 7:30 pm, slept 9 hours off and on.... very unusual for me...!!  I am feeling hopeful i will clear as Dr. James Frreman calls my treatment with the sofosbuvir added a super vosevi!  Well all our relapsers on facebook are SVR with vosevi!!! So thats a good sign!!! i will do a viral load on Monday and other blood tests.... i dont know yet if i am going to do a viral load one month after EOT or just wait for the three month only... no reason to ruin my summer if i relapse... arghhhh. Turned 64 today... hopefully i will have a nice gift down the road!!!

Hugs,   Connie

ps.  I usally only sleep 5 to 6 hours a night for YEARS without meds!!!



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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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What’s the good word, Connie? You’re a couple of days away from EOT and tomorrow is your birthday! This week is going to be one of great celebration!

I wish you a wonderful birthday tomorrow and a special day this weekend, 5/12/18, the last day you’ll ever have to worry about that pesky lizard. 

Are you having an EOT viral load done? Check in when you can, good luck!

HAPPY BIRTHDAY!!



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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 1-4 years!

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I wasnt undected until week 5 probably... haha and week 4 my viral load was 18 and >15 is undetected!!  And week six i was officially undetected.  I dunno i was undetected at week 4 with harvoni and relapsed but these drugs are better!  Still worried of course!!

big 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.

Tig


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Hi Connie,

A lot of people wait until week 12 following EOT to have their final testing done. I can tell you though, if you’re undetected at EOT and week +4, the odds of relapse are almost nil. Studies have shown a determination of SVR4 almost assures SVR12, but they haven’t set that in stone.

I understand the anxiety of these tests! I had my 5 year viral load checked this week and even now those butterflies were having a heyday in my belly. All for nothing, the results were undetected. Woohoo on that one! I recommend doing what your doctor recommends and go from there. Good luck, you’re on the home stretch!



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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 1-4 years!

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I am debating about when to do my blood tests after EOT, i may wait for the 3 months rather than ruining my summer vacations if i test 1 month after EOT and relapse...... argh

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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Canuck wrote:

Hail waffle, dandy, angel and all Mavs! (And shortstack and Ziggy too, soon to join the Mav fold!)

Just copied this (from Mav.2) to be over here in Mav.1 as well (to cover where ALL our lovely and important and gettin' better "Mavs" might be congregating)! 



Calling all Mavs! biggrin We need some feedback 'round here. How ya all doing? Akemi, RLS, mpls, N.W. and ALL. How ya'll doin' and making out? Hope all is going swimmingly. Got any new news, or even any old news?

New Mavers are still arriving here, it always so nice to keep them up to date on how one is feeling (from those who may be further along in the Mav process than they may be). Nice to keep them and all of us posted on every little thing, sharing and comparing notes always helps, everyone!

If ya don't post regular we'll have to call ya Mavericks, hee hee. wink C. Hey, I mean that only in the nicest way! If you go by the definition for Maverick, it says "free" spirited, which i think appropo, for it is the miraculous Mav which has (will) free you! smile C.

 

 

Hey C ! I'm into my 14th week of 16 wks now. it's been rough the last month or so with extreme fatigue, seriously coma like sometimes, some headaches, and a little more forgetfulness than usual. Doing the water. Sleeping alot. Can't complain, no nausea. UND at 4 and 8wks. Labs again at end of TX on April 24th. Then I'm waiting a month to do PCR quant viral load, as I was UND when I finished 12wks of Harvoni 3 years ago. The 4 week post EOT is pretty predictive. I got this this time. 

Dandy


 



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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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Hail waffle, dandy, angel and all Mavs! (And shortstack and Ziggy too, soon to join the Mav fold!)

Just copied this (from Mav.2) to be over here in Mav.1 as well (to cover where ALL our lovely and important and gettin' better "Mavs" might be congregating)! 



Calling all Mavs! biggrin We need some feedback 'round here. How ya all doing? Akemi, RLS, mpls, N.W. and ALL. How ya'll doin' and making out? Hope all is going swimmingly. Got any new news, or even any old news?

New Mavers are still arriving here, it always so nice to keep them up to date on how one is feeling (from those who may be further along in the Mav process than they may be). Nice to keep them and all of us posted on every little thing, sharing and comparing notes always helps, everyone!

If ya don't post regular we'll have to call ya Mavericks, hee hee. wink C. Hey, I mean that only in the nicest way! If you go by the definition for Maverick, it says "free" spirited, which i think appropo, for it is the miraculous Mav which has (will) free you! 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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angelseven wrote:

Hey waffle, you cant get your blood test results on line???  I hope my hair doesnt start falling out... looks pretty thick right now... I did have hair loss with harvoni....when are you finished with treatment??

angelseven


 Nope. They don't have an online system.  I wouldn't worry about your hair falling, I might just have poor hair genes. My genes are catching up to me :(

 I was done on Feb. 26th and now I'm just waiting to see if I'm still undetected. I do agree with Canuck though It does seem like a long time to wait.  I did a 4 week and an '8 week' blood draw (The 8 week draw was just 2 days shy of 8 weeks ) and then I will do the last week of May draw (a 22 week?). 



-- Edited by NorwegianWaffle on Monday 19th of March 2018 08:04:38 PM

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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"



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In response to Canuck :

Thank you. Whenever someone tells me that I visually recall when I was younger and my grandma had remarked how patient I was. I don't think she really knew (neither did I) how patient of a person I was or how patient I would eventually become.... Unfortunately, sometimes, I think that 'patience' is to my own and possibly even others detriment. However, in this scenario the state of my car, poor L.A. drivers, and my 'thriftiness' beat out any curiosity I had for the 8 week blood results. biggrin  

I just double check, I was prescribed 2 boxes, or 8 weeks, of treatment and I ended on Feb. 26th -and yes the next blood draw is at the end of May. I should have called it the "follow up" blood draw. I believe they are trying to give enough time in-between to see if I will remain undetected.  I would have been up for doing 12 weeks of treatment just to be safe but they decided that I would not need it. I'm hoping that is still the case.



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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"



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Hey waffle, you cant get your blood test results on line???  I hope my hair doesnt start falling out... looks pretty thick right now... I did have hair loss with harvoni....when are you finished with treatment??

angelseven



__________________

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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oops I got mixed up on the threads:  

 

Hey guys. I took a blood test @ 8 weeks but I never got the results because I didn't want to drive back just to get them. I was scheduled for mid May for the final blood draw but I'll be going late May instead (scheduling error).

Side note. I noticed my face skin has been oilier than usual and I've had some hair fall. I've had to do a lot more maintenance than usual to not feel gross. I'm not going to say one way or another if Mavyret is the cause of it but thats that. *drinks water* :)



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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"



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Hey Norwegian Waffle,

How are you doing?

If your SOT was Dec 29, and being that your 4 week blood draw (about Jan 26) was UND, then does this mean you ARE only going to be doing 8 weeks of MAV? (You had clarified prior that if you were NOT UND at week 4 they might extend your Mav to be 12 weeks).

So, if you are on the 8 week duration, then gee, your EOT is close! biggrin - about Feb 23?? 

Let us know how all has been going - good, I hope and expect. 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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Angel,

In trying to assist, in answer to your questions, about being able to take Vosevi after MAV? - here is some of the info I have been going by - the slides do not copy and paste here, so I have just re-typed the info here: (you were asking what Dr. Feld would say? - note - the review with this slideset IS by Dr. Feld, in part, with Reau and Zeuzem)

 

From CCO, Clinical Care Options - Hepatitis. (CCO downloadable slideset) "Hep Alerts 2" - Slide # 26 (of 27) - "Hepatitis Alerts:  The Impact of New Options for Treatment-Experienced Patients with HCV" - Alert  2 - Treating DAA-Experienced Patients with HCV.

In this downloadable slideset, Jordan J. Feld, MD, MPH, Nancy Reau, MD, FAASLD, AGAF, and Stefan Zeuzem, MD, review how recently-approved DAA regimens fit into the current therapeutic landscape for treatment-experienced patients with HCV.

Format: Microsoft PowerPoint (.ppt). File size: 476 KB. Date posted: 1/2/2017

 

Excerpt: Slide #26

Take Home-Points:

GLEC/PIB approved for GT1 with NS5A OR NS3 inhibitor experience only, NOT BOTH, as well as GT1-6 with SOF experience [1].

- AASLD/ IDSA also recommends for GT1, 2, 4, 5, 6 with SOF experience without NS5A experience [2].

 

* SOF/VEL/VOX approved for GT1-6 with NS5A experience and GT1a or GT3 with SOF experience without NS5A inhibitor experience (all         regardless of NS3 experience) [3].

- AASLD/IDSA also recommends for GT1, 3, 4, 5, 6 with NS5A inhibitor experience with or without NS3 inhibitor experience (ie, any inhibitor      experience) [2].

 

[1] GLEC/PIB Package insert 2017. [2] ASSLD/IDSA HCV Guidance Sept 2017. [3] SOF/VEL/VOX Package insert 2017.



__________________

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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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

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 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



__________________

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! 



__________________

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, SVR 24 8/8/18



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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, SVR 24 8/8/18



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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



__________________

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, SVR 24 8/8/18



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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

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 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

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 1-4 years!

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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, SVR 24 8/8/18



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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, SVR 24 8/8/18



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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



__________________

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

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 1-4 years!

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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, SVR 24 8/8/18

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

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 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.  



__________________

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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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

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 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



__________________

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!!



__________________

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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