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Post Info TOPIC: Mavyret.1


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Hey Waffle,

Thanks for the update, glad to hear how you are doing. Sounds pretty good to me!

I love, love. love the idea you are doing (trying to see/do/experience something nice/new/positive every day)!

You are already doing something very positive, every day, with every one of those Mav pills you are swallowing down, along with lovely gulps of lots of water, knowing you are ridding yourself of that hitchhiker virus forever! Now that is a positive thought!

But glad to hear you are treating all of you with good care in all ways.

Eat well, sleep well, drink tons of water, treat yourself special - that's the ticket. 

Interesting "beddie-by effects" you have experienced thus far (were you having some fatigue before you started treatment as well?) Not a bad side (if it is a med "side"),  but ya, I could see how that might be a double-edged sword - sleep oh lovely sleep can do a body good, but timing is everything!, as well as convenient proximity of bed! hee hee

So, are you taking a night time dose? What time? And, you are taking the med at the same time every day, aren't you? If it is a evening dose (not a  suppertime dose) then, still, try to take the med with some foody/snack. A little late night snack would be called for if you also happen to be taking your dose late at night. Same time-of-day dosing, with food, and LOTS of water all the gall-durned day ... and poof you are going to be cured up in no time! 

Very glad your nasty cold is easing off. Never a good time for those!

Keep doing what your doing, sounds as you are doing well, and will do very well. Onward! biggrin C.

 

Related image

 



__________________

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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All is well so far. I have about one hour after taking the pills before the meds knock me out. I get very sleepy!! Great for bed time but not if i'm not near a bed or I want to hang out somewhere...the fact I can handle the day is great though. I thought it would be much worse. Also, My cold is mostly gone so that is a relief. 

I've incorporated tying to do or see something new every day so that I can look back at this time as a great experience. Today was also a great day.   

 

 



-- Edited by NorwegianWaffle on Wednesday 3rd of January 2018 01:21:52 AM

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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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I found information about that article regarding the hep B Vaccine

I will try to find it for you. I ready the original article in Vanity Fair and was searching for it a few years ago, it took me a while, I will try again

I may have saved it somewhere on my computer... LOL

Peace, 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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Waffle,

Do check in, when you can, and let us know how it is going. I hope you are feeling that great relief that comes with finally taking the drugs which will cure you. Best friend EV-ER in a bottle. Thank goodness for the likes of Abbvie.

Has your cold finshed, run it's course? I am betting your first days on Mav will be uneventful.

Keep drinking water!

The info I have shared on Hep A/B is simply informational.

I am a great believer in reading, I try to keep an open mind and learn different things.

Angel mentioned an intriguing article, i can't find it anywhere, but i would love to read it! 

Hope you are feeling good. 

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)

Tig


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Hi Angel,

Not a problem, that‘s your choice. I personally believe vaccinations are a good idea, but it’s up to each patient and their doctor. All we do is keep the lines of communication open and current. Knowledgeable opinions and friendly debate keep forums like this current. Thanks for the update.

Happy-Happy smile



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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 to have always refused the A and B vaccines.... I won't get going on the vaccine stories ,... just search for the article in Vanity fair about 1999 ( I think) where they were working on the Heb B vaccine at Baylor...

OK, please don't respond to this, for me this subject is not open for discussion!!

Have a Miracle New Year,  angelseven/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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Waffle,

I just wanted to add to what Tig was saying about Hep A/B.

Just every time I go for my regular follow-up blood letting episodes amongst the sick masses in the big wicked city (at my doc's big very, VERY busy, packed to bulging hep clinic and lab), where i have to hang for hours, along with all the other hep carrying folk before i can leave ... everytime i go for procedures or attend interactions at any medical facility/lab/clinic/hospital, it can be a tiny potential risk for me.

I don't have to go to San Diego to increase my exposure risk to accidentally pick up another hepatitis.

Never, ever do you want to pick up any other kind of liver infection, when you already have, or when you have already had a case of Hep C. A double insult can be deadly.

Here's that Hep A link - the news stories (details within them) are a good read. Up-surge of Hep A in California

 



__________________

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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Hey Waffle,

Hope you’re continuing to feel well, just don’t forget to develop a good hydration routine and stick to it. We can’t emphasize the importance of that enough!

Like Canuck, I noticed your choice to avoid the Hep B vaccination. While I think you would be better protected by that, it’s a personal choice we all have to make. I didn’t see any mention of you taking the Hep A vaccination though. What’s your status with that? California, especially Southern California, is currently in a state of crisis with it. The risk of contracting HAV is very real and you need to seriously consider getting that done now if you haven’t. 

Sorry to hear about the friend that is stuck on the stigma. You can only try to inform and educate those you choose to discuss it with and if they refuse to listen, you can’t open their mind to the truth. We have several discussions here on the forum on handling the stigma. Use our search function to find them. Eventually they’ll figure it out, hopefully before they lose anymore friends. You can only do what you can do...



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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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Hi Waffle,

It is a sorry shallow ignorant place to be mired in, for that guy! No matter what effect is has on us, you have to forgive ignorance - they are not capable of operating any differently. One day, perhaps, he will change.

Long after I was cured, I was disturbed by an unthinking doc (a new to me fill-in hep doc) rushing through an exam, me blabbing and not really paying full attention to what he was doing, me more focused on using my precious 4.5 mins of potential communication-time expressing things I wanted covered, I only paid half attention to HIS all important agenda - completing the ticking of HIS boxes for this exam, he did a very brief (wierd to me) neuro exam (except ... I am familiar with brief neuro exams and thought his rather odd after the fact) - wasn't til after I left the office that (duh) the light bulb lit, it was no abbreviated part of any neuro exam - he had me extending my arms, rotating my wrists, hands outstretched first prone then supine, spreading fingers, he was checking for injection track marks! Brother. All he had to do was ask? Due diligence (as well as ignorance) can be on "automatic" and traumatic! Some know not what they do.

 

Hey thanks for trying to answer my prior questions:  re Fscore, tests, etc ...

Q: ... BTW - did you get any further "new" blood test results back? - like your newest "blood" fibrosis test (Fibrotest, or similar) or your newest VL,         ALT,  AST, etc.? ... Did you ever say whether you had had abdominal U/S's before or a "FibroScan" before? Just wondering ...

Q: ... I guess we will all find out from your 4 week blood draw whether you end up being on Mav for 8 weeks or 12 eh? Did you ever answer about where your liver fibrosis is at? Whether you ever had an abd. ultrasound, what your most recent blood "fibrotest" result was, or if you ever had a "fibroSCAN" to indicate your degree of fibrosis? Do you know your Fscore? ...

A: ... The blood test for the fibrosis level came back good. I was surprised because I have had sharp stabbing pains over the years and I always thought THAT can't be good.  I don't remember what the result was off hand but I remember he said it was really good, which was both bad and good.... I filed away the paper work and don't have access at the moment but I'll be getting new test results on Tuesday anyways so I will update with both old and new numbers soon ...  

A: ... I had an ultrasound...i want to say they said it was a 3....or really good which was another reason they were not keen on epclusa. I just threw all my papers away (life changes) but they should be calling me to make sure all is well and I will jot the info. down and put it in my bio ... 


Only when you are able (when you do have access to some "for sure" current lab results), we, of course would be interested in seeing those results.

DATES are good to help put things in perspective - I do not know, but assume it was a very recent blood test? - (this "blood test for fibrosis" you said you had done that came back "good"?

And in regard to your abd. ultrasound (U/S), it is really good to know you have had one (or more?) done, but DATES here too would be good to know, I assume this U/S was just recent

I am still not sure what "3" really means (yet) in relation to my questions about your Fscore (your fibrosis score) - an Fscore is NOT really derived from an abd. ultrasound - abd. ultrasounds (U/S) generally provide really valuable info via "images".

A blood test such as a "fibrotest" or similar fibrosis assessment blood tests can provide you an Fscore, as can a "fibro-SCAN" machine provide you with a Fscore number. A fibro-SCAN provides no "image" per say, but rather, is a completely dif animal than an abd. U/S image. A fibro-Scan machine most often simply provides you with a Fscore number.

Let us know, when you find out some of your baseline/assessment labs!

Onward, forward to day 2, day 3 of Mav!!  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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Waffle, that is horrific, i am so sorry about your situation... he is a small person for sure!!

Just let it go.. people can be so strange... i say those three words at least daily... LEt it go..

I finally told a lot of my tennis friends i had hep c a few years ago... i kept it quiet for about 15 years, no one seems to care.. I basically say, i have Liver Disease sometimes i say I have hep c, and if they want  specifics, i relate them...

glad your first night went fine....

peace, angelseven/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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Hi Waffle, Hes probably still in the closet with his hcv. RC



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 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18



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I just wanted to put this out there..maybe someone else has had this problem...i had a 'friend' i was to work on music with...he dropped me the day i picked up my meds....apparently he has a problem with people with hep c. I have handled uninformed, mean people my whole life and Ive waited 10 years for this. He didnt ruin my day or hurt my feelings...but there are other people that will believe his kind of b.s. and walk around feeling bad or even think there is no cure.....i blocked his butt and said, very tactfully, goodbye!  His loss. Producers are the most lame, evil people to walk the earth...how about that for a stigma?...

I know treatment has just started but its bittersweet and I feel like its also reopening and visiting alot of doors ....its been a looong road. 



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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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robertsamx wrote:

Waffle, You went through the wringer to get your treatment drugs, all that confusion at the clinics. It feels good to have the drugs in you hands doesnt it.The trials looked good for 8 weeks . I will be pulling for you, I want you to go und at the end of week one. I am assuming you are treatment naive,and hopefully  f0-F1.  Sorry to hear about the chaos in your life the last few weeks, stay strong and get that first pill down the hatch! Join the Dragon Slayers.  RC


 I think it worked out though. I ended up on the fence and ended up landing in a very nice patch of grass.  With this genotype too!...i read its 95% successful for 3, otherwise its 98%.   

And so far so good. I took the first dose before bed. I went to sleep a bit earlier..there was no playing games or surfing the web on the phone before bed...i got 8 or so hours of sleep. I have a bit of a cold lingering so at night the cough and the seriously stuffy nose come back...hopefully This wont be an issue going forward and it will completely go away soon.

I really like the clinic and i see really awesome things to come from them, especially now that things are sorted. Skies the limit. I know i'm super lucky to get this opportunity. 

 

 



__________________

 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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Waffle, You went through the wringer to get your treatment drugs, all that confusion at the clinics. It feels good to have the drugs in you hands doesnt it.The trials looked good for 8 weeks . I will be pulling for you, I want you to go und at the end of week one. I am assuming you are treatment naive,and hopefully  f0-F1.  Sorry to hear about the chaos in your life the last few weeks, stay strong and get that first pill down the hatch! Join the Dragon Slayers.  RC



__________________

 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18



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Hey Waffle!!   I am planning to take mavyret at night also... please let me know how things go... I will probably be starting in 2-4 weeks whenever all the insurance stuff is worked out... I was told to take no supplements and only allowed to have one cup of coffee in the am.  Well, I don't drink coffee, it makes me sick... I have been taking guarana for 25 years which is plant based caffeine so I am tapering off that.... I skipped one day and had a horrific headache so I am slowly tapering.. the pharmacist said I can't have my dandelion and green tea in the morning... I have got to get more recommendations about that... I will check with 3 more pharmacist and the doctor....

I was told that if I get headaches that Ultram/tramadol for that... so that is good ...

I found this on drugs.com....https://www.drugs.com/drug-interactions/glecaprevir-pibrentasvir,mavyret.html

To many possible interactions with so many things so it is best to not take anything....

I wonder what I can do for nausea?  I know no pepto bismal... unless it is 4 hours after or before taking mavyret again...

It is really gonna throw off my supplement routine but I did it before with harvoni... I took nothing and made it through... 

I also hear men have less side effects than women.... so there you go

Are you on any meds??

 

Best of luck,  angelseven/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 getting this rodeo started! Time to bust a bronco (Dragon)! Let us know how it goes. Let me remind you, you should be drinking at least one gallon of water everyday! Without fail!! Doing so will reduce and/or eliminate side effects, particularly the headaches that result from not drinking enough. Water is your best friend, trust me on that one! Good luck, Warrior... smile

 



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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 just wanted to report in and say I picked up the first months of Mavyret today!!!!!!  I'm Super excited.  

I do have a little bit of a cold left but the plan is to start the first dose tonight before bed. winksmile



__________________

 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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Yes, I had trouble with sof, I am pretty sure... the headaches and kidney stuff... although maybe is was the led part, who knows...

I have got to get further verification on my ability to do vosevi if I fail this treatment,  the pharmacist says that's it, nothing would work after two failed treatments with DAA's  ... you are thinking it will be ok, I will check with the doctor when I go in in a month.. I hope I have that option because then I won't be so worried.  I guess once you relapse you are fearful about the next go around!!!

I am thankful you are helping me to understand all this... I need to make a little chart of all this... I haven't spent a lot of time studying it!!

It has been like a big black could hanging over my life for years!!!

No snow here but it has been cold for us!!!  Merry Christmas!!

 

angelseven/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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Hi angel,

RAV testing is not all that useful of info to know "immediately" after a failure, there is often a wait before second treatment anyway, and being that "over time" some RAV's may not persist, RAV testing may be more informative/useful to know prior to treatment or re-treatment.

NS5B (like sof) RAVs may not persist very long after failure, NS3/4A's (like glec or vox) perhaps being the next less persistent, and NS5A (like ledi) RAVs perhaps being "fitter" or having longer persistence. (That's my perhaps too simplified understanding of it anyway.)

Regardless of RAV's, with how effective we see Mav and Vosevi performing, they are less inclined to spend money on RAV testing (as seen in the recs). The deciding factor on whether they do or don't do RAV testing nowadays seems to boil down to whether it would make ANY difference in the end as to your chance of success, you only have two good (recommended) treatment options in the U.S., one of which you are already lined up for! So, with the high cure rates of both regimes, it will likely make no dif if you had been RAV tested as to the outcome. Chances are Mav will cure you. Chances are vosevi will cure you.

Had your first failure NOT been "just" Harvoni (a NS5A/5B), say (pretend) you had done contained both a NS5A/3/4A instead, then Vosevi could have  been a recommended choice for you, over Mav, because your prior treatment was containing both a 5A and a 3/4A (and with perhaps post-tretament RAVs to both). But, because you are NOT 3/4A experienced now, only 5A/B experienced with your Harvoni, then Mav can be for you now, and, so can vosevi be for you now. RAV testing would be useful prior to second treatment IF it showed you had both 5A and 3/4A RAVs, in which case vosevi would be recommended over Mav. (This is how I am interpreting the recs and what Feld's comments implied).

If Mav did not cure you, then (the way I read the recs) it IS possible for you to be treated again (for a third time) with Vosevi, for all the reasons I spelled out (here and in prior posts). Vosevi has no restriction to a pt being experienced with 5A/3/4As, where Mav does.

I'll change to a dif topic here ...  you mentioned ... "I'd be happy to stay away from it" .... (vosevi), I'm just curious, vosevi is a 5A/5B/3/4A, and Mav is a 5A/3/4A, so ... is it the "5B" (sof) part of vosevi that you are reluctant about? 

So, I bet the snow down there didn't last for a white Xmas for you folk. heehee If yer missin' it I could send you lots! 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 had a pharmacist and read somewhere else that you cannot retreat with daas if you have failed two treatments... i have not had a chance to discuss this with the doctor.  He really did not push the vosevi honestly and with my previous problems with harvoni... i will be happy to stay away from it!!!  I do know the other gastro guy had most of his patients on vosevi



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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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I actually was not in a harvoni trial....i was prescribed 8 weeks as my viral load was way below 6 million at 1.5 million... as a matter of fact after i failed harvoni i took the two resistance tests i found on quest to the drs office and they just poo pooed them... that dr did check for 80k before treatment which i had but now they say that does not matter with these new treatments....i dont think my new lab quy offers any resistance testing at all.  I am just not going to worry about it.... i was very worried after harvoni relapse but the doctor would not order it.... actually , that experience was not very good between the lab and the dr.s office... there were so many stupid problems.  They had an in between person for the pharmacy, it was very confusing... anyway, i will never go back there again and the doctor has a wonderful reputation.  My new doctor says i have a 98% chance of clearing with mavyret and i had problems with harvoni such as kidney pain on occasion and the harvoni headaches... mavyret is much easier on the kidneys... i will patiently be waiting for the mavyret!!  I dont expect anything quickly!!

Have a miracle Christmas and thanks for all your input



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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, 

On this thread, and on your other one, you repeat about how RAV testing is not done, period.

Yes, RAV testing is hard to come by these days (we all already know it!, as it is all spelled out, right there, for anyone to see, in the recs!). U.S. and Aus (basically) follow suit on this. There ARE very few exceptions to being "routinely" RAV tested nowadays (or at all!), but there ARE a few ways it DOES happen and cases where it certainly would not hurt to have it done, given the importance of a successful second treatment and gleaning which treatment would be best as a second one.

 The only reason I was asking you, previously, (on the other thread) about past or current RAV testing was NOT because we do not know RAV testing is hard to come by, or that it might be expensive, but rather, only because RAV info can be important in the choice of second treatment, and, I was also trying to get clarification on an old post you made, your reference (made long ago) to "80K"?, and, just because you were IN a Harvoni trial, I hoped that some data may lay there, in your old files, even if it was only to know whether you were a Il28B "CC", or not. Just knowing you are CC can be a tad more reassuring. 

Being that you were (formerly) in a trial I just thought you may have had some past trial RAV testing done that exists there (your mention of 80K).

We can all just "assume" you do have some 5A RAVs, but nothing else may be known except guessing, many docs (if they have no specific reason/wish to do RAV testing on you), will just "go" on the  assumption that you need the wisest treatment they can get for you (based simply on being a relapsed 1a with some "probable" 5A RAVs). Some docs, looking at re-treatment "might" do RAV testing, only if they felt/thought it wise or "justifiable", and if testing did happen, then it might only be done on the basis of their "own volition", OR, for a very specific reason(s), ie, one easy justifiable reason for RAV testing (that still happens, quite routinely), is in considering the use of Zep, and that RAV testing for Zep use happens for good reason. There are still various reasons why some docs can and would do RAV testing. Should a doc be wanting you to have Vosevi, then it  might be even more unlikely RAV testing would be considered useful, as the likelihood of failing Vosevi is small.

For a NS5A relapsed 1a there are "some", reasons when a doc "may" decide to do RAV testing (even if it is of his own volition and not by the recs, or, sometimes pts get their own RAV testing done). I tend to take Feld's comment to heart, and re-interpret "some" of his words ...  that the pt should be considered carefully and positioned for success for re-treatment.

Now that you have a nice helpful lab guy in your back pocket, just out of interest, he would be able to tell you how much RAV testing actually costs nowadays. You may never need to know what your RAVs were anyway, as Mav may be the best Xmas present you ever got! 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,

Tell me, the newest doc - did you and he discuss Vosevi at all? Just wondering.

The way I read the recs - in the unlikely event of you failing Mav as a second treatment? ... then I just repeat myself (I'll  just paste this here from the our prior discussion we were having on the other thread about Vosevi) ...

 

 The beauty of doing Mav (as your second treatment) is that not only is it effective for you as a 5A relapser, but Vosevi would still be available to you for a third treatment as there is no restriction with Vosevi as to being prior 5A/5B/3/4A experienced. 

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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They are getting away from resistance testing in some instances, but it's still a valuable tool for determining retreatment options.

Resistance Testing



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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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Waffle, please let me know how You are doing on the meds when you start... my friend had zero side effects in a clinical trial.... i am planning to take mine at night with dinner... i see it is recommended to take with food

best of luck and i hope things calm down for you!!

angelseven/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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The doctors dont do resistance testing anymore... bottom line, the pharmacist said if i relapse thats it for me.... that is why i was so wanting to add sofo as James freeman recommended to the treatment but the last Gastro guy i went to and the new hapatologist both said no.... with the sofo i would have 100% chance of clearing the virus... with mavyret alone i have a 98% chance..... of well, i will hope for the best!!!



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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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Nice to see Angel finally getting the go ahead. Great way to kick off the new year on the M train! 



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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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Well! Angel and Waffle - things are progressing now! biggrin

Waffle - I noted your comment about Hep B vacs. Have you and your doc thoroughly investigated where you are "curently at", as far as evidence to prior (unknown) exposure to Hep B, AND if your body "owns" any evidence of any "natural" immunity to Hep B, OR if you show any "Hep B surface antigens"? I assume you have never been vaccinated for B all of your life, not ever as a child or through life at all? If so, (by now) your docs should have drawn bloods to check on just where you stand as far as any unknown prior B exposure, any immunity you may or may not own to B, or if you harbour evidence of B surface antigens, BEFORE you start your Hep C treatment. This is standard practice, and important testing to have done, before you start Hep C therapy. I assume you have NO immunity against B (or own too little), or they would not have been asking you to be immunized, so I am assuming they have also tested you to determine you have no B surface antigens.

I could argue about the risks and benefits about owning, or not owning, a sufficient amount of immunity against Hep B, especially the whole time I was already in a Hep C positive pre-treatment state, but regardless, just make sure your docs have already looked and found you have no Hep B surface antigens.  

You and I agree on this though, we want to protect our livers from any further harm whatsoever.

I very much welcomed making sure my immunity against Hep B was increased via immunization just before and through my Hep C treatment. I would never, ever want to acquire the added insult of another Hep infection, on top of the insult my liver had already been going through in dealing with the Hep C infection alone! Another liver infection, of any kind, (Hep A,B,C.D.E.F.G, auto-immune), or, any other kind of liver "injury" (insult) such as toxins, alcohol, drugs, etc., should be avoided.  

Good you are young, likely low Fscore, and treatment-naive, all to your favour. Great that your treatment start is now imminent! I am very glad to hear they will extend your 8 week course of treatment to 12 weeks if not UND at 4 weeks.

BTW - did you get any further "new" blood test results back? - like your newest "blood" fibrosis test (Fibrotest, or similar) or your newest VL, ALT, AST, etc.?

Did you ever say whether you had had abdominal U/S's before or a "FibroScan" before? Just wondering.

I am confused about the part you mentioned where you are "being paid" for appointments? Is this a trial (of some sort)? Often trials do pay a small stipend - just wondering.

Great news you two - keep pulling, your starts are aallll-most there! 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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Connie, if you were to relapse after another round of treatment, you would likely have developed mutations that are resistant to another NS5a. It would be determined by additional viral resistance testing. You can find out what you may have resistance to pretreatment and your doc can determine the appropriate length of administration. That may have already been done. I think it’s exciting though (as exciting as pretreatment gets)! This has really come as a surprise. You’ve been wanting to do this and when it looked like you would have to wait, boom! Here it is! Good stuff!



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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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That’s great! Both of you will be starting close together, that’s a big benefit. Having a treatment “buddy” that is dealing with the same thing at the same time, allows you to bounce all kinds of questions and answers off each other. It’s a big plus!

The same guidelines apply that have always been recommended, No Supplements during treatment. Some doctors recommend staying away from them until 12 weeks post tx. They don’t harm, but they can alter your test results. Sometimes in a big way. Afterwards you’ll be able to resume them. I know once you are clear of the virus, you’ll notice improvements. You’ll see! 

I like your doctor, Connie. She seems very interested in your success and is providing you with good advice. It’s so comforting to have a doc you can trust and talk to. Makes a big difference.

Merry Christmas!



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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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Mr waffle guy... are you waiting to start after the holidays?? 

I finally found the perfect hepatologist that did not require thousands of dollars of unnecessary testing as my basic labs are good!!  He called the specialty pharmacy girl while I was there... I have already spoken to her so I should have meds in 3-4 weeks or sooner....

The pharmacist  advised NO supplements at all while I am on treatment as I am a relapser... not even my green tea with dandelion... I guess I will have to suck it up for 4 months.... she did approve ultram and one cup of coffee a day (but coffe gives me a headache)... that's it... probably a good idea to be so cautious!!

She also said since this will be my second treatment with a NSA5a that I cannot treat again with another one.... I am still confused about that..... I have a 98% chance of not relapsing....

Canuck, wherever you are, remember that article... this is the same thing that dr felt or feld said... we are looking for more info on that just in case we relapse again.

Have a merry Christmas...  I am feeling very relieved finally make some progress!!!



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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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angelseven wrote:

I hope to be taking mavyret in the next few months,  I am waiting for free meds from the manufacturer.. My yoga friend with genotype 3 took mavyret with no side effects for 8 weeks and is svr!!  Please let me know how you do... best of luck!!  Mavyret has about a 96% success rates for relapsers,  so it is sure to knock the virus out!!


 

I'm looking forward to it. Meds have been sitting there for 2 weeks.   I will either update on the thread or in the bio. 



-- Edited by NorwegianWaffle on Friday 22nd of December 2017 06:05:26 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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I just wanted to update. I was supposed to start on Tuesday but had a slight setback due to family issues. I feel like i'm banging my head against the wall. However, I go in Thursday morning to pick the medication up from the pharmacist (at different location) who will go over everything with me before starting. Sounds like a great Holiday gift.....I'm off to make some waffles.

__________________

 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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I hope to be taking mavyret in the next few months,  I am waiting for free meds from the manufacturer.. My yoga friend with genotype 3 took mavyret with no side effects for 8 weeks and is svr!!  Please let me know how you do... best of luck!!  Mavyret has about a 96% success rates for relapsers,  so it is sure to knock the virus out!!



__________________

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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Welcome to the forum, NW! Glad you found us smile

Mavyret/Maviret is a very effective treatment drug. The results have been very impressive. You should do well. Those pains are likely secondary to the liver inflammation you’ve dealt with over the years. Once you get started, that inflammation will diminish and you’ll notice that discomfort and pain improve. There will be lots of positive changes! 

Get ready to rumble!!!



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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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Canuck wrote:

Hi waffle,

Welcome here. Glad to meet you (a fellow 3a). Very glad to hear you are going to soon start your maviret! We will all very much be looking forward to your update next week. Feel free to fire away if you have any questions, or if you just want to talk. Good job on the sig line and bio BTW - very helpful. Hope you are feeling good about your soon start. How have you been feeling with your HCV? Do you happen to know what your fibrosis level is  (your F score) perhaps assessed by a fibroscan, or perhaps estimated via blood tests (like a "Fibro-Test")? Nice to see you here. smile C. 

 


 

The blood test for the fibrosis level came back good. I was surprised because I have had sharp stabbing pains over the years and I always thought THAT can't be good.  I don't remember what the result was off hand but I remember he said it was really good, which was both bad and good.... I filed away the paper work and don't have access at the moment but I'll be getting new test results on Tuesday anyways so I will update with both old and new numbers soon.  

I feel like I could be stronger but I have a week to prepare myself.

 

Observer wrote:

Welcome Norwegian Waffle  (you look delicious)

 

Good to hear you are getting treatment.

Looking forward to hearing about your journey.

 

Alison


 

That reminds me, I just got a new heart shaped waffle maker - and I can't wait to try it out!

 



-- Edited by NorwegianWaffle on Saturday 2nd of December 2017 06:15:45 AM

__________________

 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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Welcome Norwegian Waffle  (you look delicious)

 

Good to hear you are getting treatment.

Looking forward to hearing about your journey.

 

Alison



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60y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

2.5years...post tx... successful dragon slayer 



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Hi waffle,

Welcome here. Glad to meet you (a fellow 3a). Very glad to hear you are going to soon start your maviret! We will all very much be looking forward to your update next week. Feel free to fire away if you have any questions, or if you just want to talk. Good job on the sig line and bio BTW - very helpful. Hope you are feeling good about your soon start. How have you been feeling with your HCV? Do you happen to know what your fibrosis level is  (your F score) perhaps assessed by a fibroscan, or perhaps estimated via blood tests (like a "Fibro-Test")? Nice to see you here. 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 guess I'll be starting Mavyret next week!  A complete surprise after being denied Epclusa. Long Story.  I'll update next week. 



__________________

 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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