Hep C Discussion Forum

angelseven · Senior Member

RE: Mavyret.1

Dandelion22 · Veteran Member

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

June

angelseven · Senior Member

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

Have a nice day, connie

Tig · Admin

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

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

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

Endurance 1

Endurance 3

angelseven · Senior Member

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

thanks for reposting, I am reading again!!!

Hugs, connie

Canuck · Guru

Hey! Great you got started Angel!! biggrin

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

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

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

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

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

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

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

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

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

Image result for water by the gallon photos

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

Stretching your increased water out evenly over a whole day, and getting sufficient rest are very good things. smile C.

angelseven · Senior Member

i am honestly going to try to cut down the tennis... we have two leagues starting, since I am captain of one I can sit myself out and chill...

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

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

thanks loads,

connie

Tig · Admin

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

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

angelseven · Senior Member

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

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

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

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

Peace, connie/angelseven

Tig · Admin

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

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

Canuck · Guru

Hey Waffle,

Had been wondering how all was going for you.

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

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

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

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

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

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

I am so happy for you that it is going well! biggrin C.

NorwegianWaffle · Member

There isn't much to update on right now, which is a good thing!

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

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

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

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

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

P.S. Still hydrating.

Tig · Admin

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

WOOT!

PS: Hydrate

wendyo · Guru

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

mpls · Member

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

angelseven · Senior Member

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

Canuck · Guru

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

NorwegianWaffle · Member

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

angelseven · Senior Member

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

Canuck · Guru

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.

Tig · Admin

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

angelseven · Senior Member

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

Canuck · Guru

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

Tig · Admin

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...

Canuck · Guru

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.

angelseven · Senior Member

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

robertsamx · Guru

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

NorwegianWaffle · Member

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.

NorwegianWaffle · Member

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.

robertsamx · Guru

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

angelseven · Senior Member

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

Tig · Admin

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

NorwegianWaffle · Member

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. wink smile

angelseven · Senior Member

RE: Mavyret

Canuck · Guru

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.

angelseven · Senior Member

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

angelseven · Senior Member

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

Canuck · Guru

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.

Canuck · Guru

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.

Tig · Admin

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

Resistance Testing

angelseven · Senior Member

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

angelseven · Senior Member

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!!!

wendyo · Guru

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

Canuck · Guru

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.

Tig · Admin

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!

Tig · Admin

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!

angelseven · Senior Member

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!!!

NorwegianWaffle · Member

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

NorwegianWaffle · Member

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.

angelseven · Senior Member

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!!

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