Hep C Discussion Forum

Sheesh Nanuck,

Now I'm freaking out.  DOES THE MED MAV MAKE US SLEEPY???????

If so, then maybe it's better I take it at night with supper.  But, I only have 20 minutes to decided.

I don't eat the same time everyday except in the morn at 9:30 when I'm going to work so I figured that would be my best time for consistency.  But if it makes me sleepy, I don't want to be sleepy at work.  Dang... Now, I don't know what to do. 

If it DOES make us sleepy then perhaps I should take it at night and make myself eat a dinner the same time everyday for 2 months, because I am having issues sleeping as it is.  My Dr didn't say the med made me sleepy.

Oh shoot, now I am all stressed and only have 15 minuets to make a decision I need to have in place for the next 2 months.  aaahhhhhh

Yay for Apr 11! Happy "day one" tomorrow. Hey, that was nice your doc phoned you. How (in what ways) did she help set your mind to ease? So, the plan is to take the Mav with breakfast everyday? Or, you could choose lunch or supper, up to you, makes no never mind really except perhaps preference/convenience and the all important "same time everyday" with food. With a moderate fat content meal is ideal. I think we had (only one?) gal here lately who preferred to take her Mav with supper, as she got sleepy in the evening (I'm not sure, if she was sure, if it was an effect of the Mav, or not) but it worked out convenient for her to dose at supper as it was easier sleep or nap in evenings versus during busy days. 

BTW - do you happen to be, or have you in the past, been supplementing with regular or frequent dosings of Vit C supplements and/or iron, or both, or multi-vits? Just wondering. If you have not had this discussion with your doc, ask her about dropping all of them for now (if you were taking them). It is to avoid accumulating any more iron than is necessary until your iron load decreases. You can also try to limit your own intake of bloody red meat/organ meats (if you normally consume large amounts of these) for a while and substitute more, with other lessor iron-content meats/proteins, and, you could also try separating your high content VitC foods away from a meal that also happens to contain high iron content - that will help you absorb/accumulate less iron - but discuss that with your doc.

Has there been a discussion/decision yet, as to whether you might be on 8 weeks of treatment or if you will be on 12 weeks, or did your doc say/suggest she will still be determine that?

It's the irrefutable stellar success rates we see with these "super" new DAA's, which instills the confidence, the facts and stats don't lie. Get ready to celebrate, you are about to dump this HCV forever!  C.  

Ah! "TAR"! Thought it might have been sumpin like that. Thanks lamassu. I should have realized the similar "sticky-ness", to what we have up here, we call it "SAR", same kind of gunk, just different Canadian alphabet.  Heehee (NOT funny, really.) SAR, up here, comes with pages and pages of stuff stuck to it, simply complete forms A-Z and voila, you "might" get what ya need (maybe), often not.  ... I was facing a exercise in futility when I researched how i could possibly ask for dac please (versus sof/riba) early on pre-treatment, ya rght - never!, (you can't get there from here) was going to be the answer, even though it was "technically" a drug acceptable to be on our formulary at the time of my pining for it! Have to read the pages of fine-print! Oh, the provincial bean-counting powers that be.

Up here (on the "public" system), the biggest obstacle can be geting the docs themselves to submit the too often self-defeating, go no-where, get denied SAR's. The influence of penny pinching via our public system has reached (domino effect) from government right down to the bottom lines of GP's and specialists, I can't speak to those who are lucky enough to have experienced private (2-tier) coverage added to their public coverage.

Alas, I rant, and digress on Ziggy's thread tho - suffice to say ...  I bet, one way or tother, Ziggy IS going to get her MRI, and/or other imaging/U/S's, or other good ways to observe and follow her to the best of her health care providers ability!   C.

What's "TAR" again?? 

Don't sweat the hemochromatosis thing too much, let them explore it - it's good if they are exploring it further - that pleases me (if that instills any confidence in you about their attention to your welfare) if nothing else they will follow it and your saturation levels now, and now that you know your iron load, you will follow it too. My pre-treatment iron load was about 540ish (not sky high) - this weirdness can just happen for kinda mysterious complicated reasons, just because - can happen in chronic hep and/or assocociated with many other conditons/situs that have an effect on the liver and how one's body is dealing with iron, that's good if they end up doing genetic testing on you re: your iron load - it's due diligence to rule things out. Mine was certainly NOT genetically caused, they did do some genetic testing on me, my HCV cure simply began the decline in my ferritin levels. Normalized, just like many of my prior altered bloods normalized.

You ARE on an assembly-line!, that is one way to look at it - you would not have enjoyed the place I utilized for my drug trial either - too many folk filing through needing treatment, not enough staff (and sometimes not enough personable/kind/attentive staff to instill calm or confidence) - it's a "process" alright, BUT they ARE (although it does NOT always feel like it) on your side, they try to get all the right boxes ticked (with or without you) and push you through to cure, their main focus.

If your first drug allotment arrives tomorrow, place it on a shelf shrine tenderly to honour and admire it. Very good to have the drugs in hand, ready like!  C.

Hi Z,

Great you got that posted, I probably would have never been able to do that! I'm not good with those ways of using computers! Hardly good at using ANY parts of  computers, truth be known! Why delete your lab image?, you can if you want to of course, but if you put the elevated bits into your sig line for future ref, most of the data will be there anyway.

I like lots of info! My sig. line would be about 10 pages long!, but alas, there is only so much space allotted to a sig. line, so, I always just stash and store up all my ongoing labs in my bio page.

I am now second guessing the accuracy of some our first attempts to draft ALT/AST/ALP numbers for your sig. line (perhaps there was some transposing of numbers happening when you first reported some of them to us?). I am now (instead) just going by the labs you post today as they can be verified by the lab paper. Still a few blanks to fill in, but you have lots of your lab info now, so that is good - no bili, no AFP, nor an alkaline phosphatase (ALP) on this lab though. You will see I "struck out" the original numbers that I now question.

  ... 52 yr old, female, Dx 2007, GT1b, Pre-treatment VL 9,400,000, F2 (by fibro-meter?), ALT 64? 136 to 128, AST 360? 64 to 66 , ALP 136?, GGT 64, alpha2mac 502, + ANA titre 1:80. Elevated eosinophil, iron, hgb, hct, rbc, ferritin 360, iron sat 60%, U/S perhaps shows some fatty liver, AFP ___, bilirubin ___. Tx 12 weeks Mavyret SOT Apr 11, EOT Jul 4 ...

I am only making a suggestion of what to include in your sig. line, you only need put what you are comfortable with. You would be able to alter/add/delete anything as you go along through treatment, to highlight the progress/improvements! 

Do not be overly alarmed at the abnormals you see on your labs right now - we see a lot of abnormal/elevated (or slightly out of wack labs), often just like these, when one has chronic hep.

In quite short order, once the miracle of Mav is in you, you are going to see them start magically normalizing! I too had many similarities to you, hct, hgb, iron, ferritins, and on, many things, just like you, all a bit out of wack, mine are all nicely normalized again with cure and since cure. Your U/S report is short and sweet, possible indication of some fatty liver (but you and your doc already went over that didn't you).

Funny, your lab report, in that (most often, the "normal reference range" is also written on the same page, right beside your result) so it is easier for you to know what "normal" is, compared to your result. Here's a link to some "normal reference ranges" BUT every lab can have their own ranges that they go by AND sometimes they also use dif units of measure (so, you do  have to go by the ranges your lab/doc considers "normal"):  http://www.ccpe-cfpc.com/en/pdf_files/drug_lists/normal_values.pdf

So, did they say they were going to book you for your MRI, or is that still up in the air? Later, C. 

We have some existing Mavyret threads in the On Treatment section. If you want to start a new one, please title it something besides ”Mavyret” we’re overloaded with similar titles! They tend to get discombobulated when there are so many similar threads. Lots of posts get lost in the shuffle that way. It’s up to you! 

It’s not too late to start the Wellbutrin, ask your doctor. It can still help reduce those cravings. if you can get down 100+ ounces of water, and you’re not having any of the issues I mentioned, play it by ear. The one gallon rule has worked for years with these newest DAA’s. So do what works!

Canuck brings up a good point, there are other medications that work very well for smoking cessation. My wife used Wellbutrin and had absolutely zero problems quitting her long term smoking habit. When I was on treatment the last time, Interferon, Ribavirin and Victrelis, one of the most awful side effects I feared was the profound depression. The first time I attempted treatment in 96 with Interferon injections 3x/week, the depression was horrific. I talked to my doctor ahead of my second go at it and we decided to start Wellbutrin a week before I started the Hep drugs. It worked very well and is a super easy drug to discontinue when you no longer need it. It’s an excellent drug for smoking cessation and treatment associated depression/anxiety. That’s something you can ask your doctor if that sounds like an option.

Hey Zig,

Chantix isn’t contraindicated with Mav, so I wouldn’t let that stop me from starting treatment. You don’t need the additional stress. If your doctor approves you taking it, do it. I never tell someone to keep smoking (ex smoker here), but last I heard, smoking isn’t contraindicated on Mav either. It’s more important in my opinion to stop the Hep C now, you can work on stopping cigarettes thereafter. You do what will assure success with your HCV treatment. 

Hi there Ziggy,

I also want to welcome you (better late than never).  Quitting ciggies with Chantix is a good thing, if it takes. Here are two silly Chantix stories.

My mother, 95,  was prescribed Chantix by her surgeon because he refused to do her hip revision surgery if she was still smoking.  A week after starting nicotine withdrawal she kindly posed for Tig's new avatar. My sweet little mother was breathing fire!

And another friend (big blond surly Russian hacker)started Chantix and then lost track of the pills he was taking.  He just kinda slept through the whole nicotine withdrawal thing.

Anyway, I was on Harvoni for 12 weeks, and it worked out very well.  I have been SVR for three years and still cannot believe that these drugs have come along to save us.

Take good care,

Joann

I agree - that IS GREAT news - help is on the way! (Yours drugs are soon to arrive, the stuff which WILL cure you - and put an end to this nasty hepc once and for all)! You ARE doing the very best possbile thing for yourself and your future health, by ridding your precious body of this very harmful hepc you are packing.

You are doing another wonderful thing too, quitting smoking, by whatever means works.

My only other thought on what might possibly assist you in the "I HAVE quit smoking", is to further enlist the aid of a "smoking cessation hypnotherapist" - they are out there - search for one and try one visit - they usually offer a "one-time smoking-cessation visit" for a fee, to make a suggestion or two to you, directly to the "non-analytical" side of your consciousness. There are hypnotists out there who specialize in smoking-cessation.

Perhaps accupressure as well?, I see people in the process of quitting, walking around with thingies on their ears that they can tweek, when they find themselves thinking about cigarettes.

How long were you on the Champix and how did you find it? Was it helpful on the time you were on it? Was it your doc who suggested you go off the Champix before your Mavyret start, perhaps she would not find Champix contra-indicated for you whilst on Mav? There have been others here, who have been on various meds. (anti-depressants) and/or otherwise, drugs which were not contraindicated for them whilst on DAA's - check with your doc.

As far as timing for starting your Mavyret, perhaps your doc (if she feels ALL your labs and assessments have been done and are in good order for a start) will expect you start the Mav when you see her on Apr 5? Like many of the others we have heard from here, and the good feedback they have provided, I doubt the Mav is going to interfere with your plans, work, or otherwise. If your SOT is Apr 5, then your end of week 4 will be on May 3, and your 12 week EOT would be on June 28. The main consideration is to be available for lab blood draws on time if your doc orders them for just at the end of week 4, and then again at EOT.  

Your start, your "day one" is going to be a very good day!  C.

Great you got some results! and info to share. Good to know you are a GT1b. Good neg for HIV.

F2 for your fibrosis score - do you know how your doc came up with that, was that from a blood test or a fibroscan?

The indication of the "start" of some fatty liver, maybe came from your U/S results?

If you have the actual reports (labs results or test reports), you can always copy/paste/post them here, in their entirety, if you choose to (names re-dacted for privacy) and we can help you decipher anything you wish.

Not to worry too much about her noting the "start" of some fatty liver in you, many people do have fatty livers, even folk without HCV. Though there is a more direct co-relation between HCV and tendency for fatty livers, but this association is seen more in GT3's.

In your labs, look for things like, hbg, hematocrit, ferritin, if she is investigating further your "high" iron, perhaps as well things to do with "iron saturation", "TIBC's" and such. Or, you can always just post your labs and we will help you look for what tests she has done. She will be doing more checking on your "high" iron if it concerns her. Ask her what your "high iron" result is, if you don't have the actual lab results.

Same for kidney function, if you have the actual lab results at home, you may see she has done a kidney function "panel" or just a creatinine/albumin, maybe look for GFR.

The ALP, ALT,and AST you posted, yes they are all elevated, as we see with HCV. If you are looking at the actual lab result papers (for the ALP, ALT,and AST you posted), you will be able to see what your lab considers a normal level ("normal" reference ranges should be right on the paper, right beside your result).

Do you have a billirubin result?

Did your U/S report shown any kind of abnormality (except maybe for "start" of fatty liver)?

Any AFP blood test result?

Good your doc seems to be "on" your Hep A/B immunity protection levels. Let her continue advising you on what you need to do next on those 2 HepA/B immunity matters, or flu shots for that matter. Good she will look into your high iron. Let her do her due diligence. Did she ask you to get some further blood tests?

Aside from HCV, do you currently have any kind of chronic ongoing health things, diabetes, kidney disease or histories of issues like high BP's, etc.? 

Don't let the stop-smoking-thing overly stress you, no matter where you are at with the quitting while on HCV treatment. Don't be afraid, to the point of post-poning your HCV treatment, due to where you are at with your smoking cessation. Everything will happen in it's time. Your HCV may turn out more easy to cure than the smoking!

Thanks for the good report, let us know if we can try to help interpret anything.  C.

Hey Ziggy,

According to the Drugs.com interaction checker, there are no problems noted. Have you spoken to your doctor about this? While I can look it up, you should always seek your doctor’s advice.

Hope this helps! Good luck with stopping smoking, it’s a good thing!

Have you had it confirmed yet, whether you are a GT1a or a GT1b?, and what your levels of fibrosis are?

When you go through the many very good and recommended choices of drugs listed and available for you today (that will work very well), you can see slight nuances in what may guide a docs preference in choosing one particular regimen for you over another - GT (type and sub-type), level of cirrhosis, your kidney function, your VL (to a degree), RAV testing (if any had ever been done on you for some reason). 

You can see the regimes for GT1a's and GT1b's here, for treatment-naive, and with compensated cirrhosis: 

Recommendations for specific GT1b's - https://www.hcvguidelines.org/treatment-naive/gt1b/compensated-cirrhosis

Recommendations for specific GT1a's - https://www.hcvguidelines.org/treatment-naive/gt1a/compensated-cirrhosis 

Virtually identical for a's or b's with compensated cirrhosis.

There are further nuances in drug choices/treatment lengths, if you are non-cirrhotic, have a low VL, etc. 

Don't forget to ensure your Hep A/B immunization has been checked on (dealt with), prior to your HCV treatment start. 

Good you had the U/S done. Did you say you had a "Fibroscan" done, to help with determining your Fscore? Or was your Fscore determined by way of a blood test, in the the blood test results you are waiting for? C.

Hey guys...I just got a phone call from a specialty pharmacy 3000 miles away from me saying they want to start me on Mavyret.

I am a bit upset for I have not heard from my DR re: my ultrasound and bloodwork yet.  I just called and DEMANDED an appointment with her.  I still have major questions.  I'm not going to run down to the pharmacy and start taking this just because they say so, without going over all my bloodwork and ultrasound results.  What is that all about?

I will post again later after I have seen her and update all my test results, etc...

Question:  Why do you think they want me to do Mavyret instead if Harvoni?  (I have been studying about Harvoni all month).  What a waist of time.  Could it be cause I'm poor?  Could it be cause my liver isn't that damaged yet?  These will need to be answered when I see my DR next week among other questions.

Just had to get this off my chest with you guys.  Cant wait to post my test results with you.

Be back soon.

Ziggy

-- Edited by Ziggy65 on Wednesday 14th of March 2018 10:16:48 PM

-- Edited by Ziggy65 on Wednesday 14th of March 2018 10:17:18 PM

I am of the mind that we could wait another 5, or 10 or 20 years for the retropsective studies to show little risk posed by the current newest DAA treatments, as opposed the already long studied and documented harms and havoc that continuing untreated HCV can cause us. It will take more years for further, anecdotal info and studies to materialize. I am thinking it will likely be found, in time frames like that (years), that the harms of carrying the HCV (which has already been documented so well, for many years) will far outweigh any risks to be found from HCV treatment drugs. HCV will also wait 5, 10, 20 years, all the while doing it's damage, for the newest anecdotal info to come out about any long term bad effects from HCV drugs. They have already been pretty quick on the draw about bringing to our attention the necessity of being safe than sorry and checking our Hep B status's prior to starting Hep C treatment, just to further minimize that very small known risk. I have a feeling, that in these 5, 10, 20 year time frames, we are more likely to see a Hep C vaccine materialize which would be great to help wipe this Hep C scourge off the face of the earth, where no one needs to be "treated" for HCV, but until that day, modern HCV treatments are state of the art, the best that science is now able to offer us, mind boggling effective, and are necessary to prevent the harm HCV can cause us. Just thinking out loud.  C.

Hey Ziggy,

Very good, great actually! You are on it! That will help you no end. You are your own best friend in all health matters, and your own best advocate, that is one thing I have tried to keep learning over the years. 

I am sure the breast cancer experience was hard education.

Good you have access to your labs and know the system, and that you keep files, question and research.

Whether is be the best Ca treatment you can find or the best Hep C treatment you can find, you will always find the "unknowns" that niggle you in wondering if you are jumping off into the deep end of the pool, over your head. This "taking on" of possibly unforseen risks is a daunting task for many. But the accepting is made easier knowing the irrefutable documented facts and outcomes surrounding "non-treatment" of things as serious as Ca or Hep C.

Stick with what you see, read, learn, know, and what facts ARE in front of you, and the path will be clear.

You could not have picked a better time to be treated for your Hep C! 

If you don't mind me probing, did you have to have surgery as well as chemo/rad for your breast Ca?? How much drugs and radiation did you have to put up with?

With your experience, I would emphatically agree with you that you will "handle" this Hep C treatment, just fine (understatement!).  C.

Hi Ziggy,

ah, so, down a quart eh? Know the feeling. Hope it was an "easy" draw session. Good (that you are getting the works)!

Have they already assessed where you are at (as far as immunity levels) and perhaps some required immunizations/or re-immunzations to Hep A, B, influenza?? 

In the interim, next time you able, ascertain if ALL of that HAS been completed - your Hep B status (your B immunity and/or B immunization start) has to be ascertained prior to Hep C treatment start. 

Likely some of the blood tests you had today will be back sooner than 3-4 weeks, specialized ones can take some time, but the more routine ones can often return quite quickly.

Do you have any means of receiving your own copies of lab reports, or will you be dependent on the docs office only to find out anything?

Some people know how to get their own labs "on-line", I'm not so savvy, I have to get them mostly via my doc's office, the slowest way!

Fire away if you have any burning questions.  C.

.

Welcome from me too Ziggy and congrats on being a survivor. The new treatments will not ruin your summer and I suggest starting as soon as your doc and insurance says GO. Like the others have said about the new meds and drinking plenty o water, you will be fine. You have found a new support system and family here. 

Welcome,

your Dr is right...dont wait

you may not feel like the Hep is affecting you but I bet youll feel even better once you get rid of it.

Tigs right, these new treatments are a walk in the park compared to the old school treatments. The most vital thing to avoid side effects is to drink a LOT of water.

(and then drink some more ) 

Cant wait till you get started Ziggy,

Alison

Hey Ziggy,

Welcome to the forum. You found a great place and nice people. I’m glad you introduced yourself. RC cleaned up your edits. That stuff happens and we have a magic wand to make it go away, ha!

Once you get your results back we will have more information and our famous opinion forecasting, lol! Please feel free to share anything or everything. Set up your results (pre treatment baseline) and a brief bio in your signature section. Then your don’t have repeat it as you progress. We rely/refer to that a lot when you’re on treatment. Fibrosis stage is useful as well. I see you got yours started, thanks.

Aside from that, if you have any questions or concerns, please ask. We will respond as soon as we can. This is a great time to treat Hep C. Never before has treatment been so easy and so effective. The side effects profile is negligible. Most can be controlled by simplyion hydrating well. We recommend a gallon per day. Easy peasy. If your doctor says go, GO! It’s light years ahead of just 5 years ago and no comparison to when I was diagnosed in 96. Those were the dark ages, you didn’t miss a thing!

Take care