Hep C Discussion Forum

Yay, congrats on your start Eric!!

Observer offers very good advice, about choosing a time of day dosing, and tips. Consistency IS important. And cinnamon buns sounds pretty good to me right now.

Instructions "say" you can take sof/vel WITH or WITHOUT food, when in doubt, I would always default to taking them WITH food. And, of course, with TONS of water all day long. Do review the printed instructions.

I always took mine at lunch - a substantial meal - (but I had no choice but to take it with a meal) as I had the "added VOX" in my trial which stipulated I HAD to take it with food. You have some choice and leeway (being on sof/vel only), but it should be the same time everyday. Taking mine with "lunch" also helped to prevent me from "forgetting" what time it was, and forgetting to take my pill on time. My stomache usually is like another pre-programmed alarm clock for me, growls right on time for lunch. Some of our other epclusians are taking them at supper I believe.

Good you will be double checking on your gals labs.

So glad it is going well and going your way! Happy day tomorrow with the first pill down the hatch. C.

And I'm back in one piece from my short vacation in south east Asia 

Ready to tackle the beast: I start treatment tomorrow! Are there any recommendations on what time to take the pill? My only issue is I am very jet lagged at the moment  I'll probably opt for some time around 8PM.

Should I start a new thread in the treatment forum? Or just continue in this thread?

Also, a bit more interesting news: my girlfriend went to urgent care and asked to be tested for hep C. They tested her and called informing her she's clean! However, she showed me the list of tests they ordered and it's just a bunch of blood panels, no actual hep C AB test. I asked her to get me a copy of the actual results, we'll see. Regardless, her bloodwork came back all within normal range. I'm staying positive she's not infected!

Thanks all! Thanks for the continued words of encouragement.

Cinnamon Girl: no worries! It will still come in handy when it is time for me to have the talk with my parents. Good luck with the move. I know how much fun that is! :D

Also, a tad bit more of good news: the Gilead coupon worked, and my co-pay is only $5 per month now!

Hi Eric, great news that the conversation went so well with your girlfriend, I know how much it must have been weighing on your mind!  I`m sure the fact that you were prepared with all the facts and information you`ve gathered so far must have helped a lot, rather than telling her sooner before you`d looked into it as much. 

I agree with Wendy, so often things work out being a lot easier and more straightforward than we`d imagined!  I know my mind has a tendency to over think things at times, especially around 4 in the morning!  Lol

Sorry I didn`t get the Disclosure fact sheet to you sooner, I`m getting ready for a house move and things at home are just a bit frantic right now!  Glad you found it helpful anyway. 

Best of luck with getting your treatment organised!

One down one to go! Glad it went well Eric. We usually think the worst (my mind can be a dangerous place) and often times the outcome is far better. Good luck with the coupon!

Hi Eric - I have a coupon from Gilead the makers of Epclusa, They took care of the co-pay, I only pay $5.00 for each bottle. So it's just a total of $15.00 for the whole treatment. I just signed up online and received to thru my e-mail. I then let my specialty pharmacy know and they took down all the info. I didn't have to go thru any application process. I am almost positive that anyone can sign up. Go to the Gilead website. Very easy! 

Eric,

Good luck tonight! Just be factual and reassuring. It's very rare to infect a partner. The primary vehicle of infection is blood to blood contact. Be prepared to provide all the information she needs. If she wants to join the forum for reassurance, please invite her. We would be glad to do anything we can.

That is GREAT news and thanks for sharing it with us. Nice to see how quickly the doc and pharmacy are moving on this. From my experience (different Rx) they ask about finances as there are programs, coupons, etc that can help with the co-pay. You may want to look into that as I had a coupon and the specialty pharmacy accepted it and I only had to pay $5 a month for my meds. If you are able to get something like that, I would start the meds as soon as you return from vacation as the money, new calendar year should not be an issue. 

Maybe in time you will come to tell family and or close friends. But yes, telling your girl is important and I wish you luck. Thankfully the stigma is not what it once was and she will hopefully love and support you through your treatment. 

all best,

wendy

Hi Erik,

i am/ was type 2 as well. I think 2b. It is he easiest of the types to treat.

also agree with Cinnamon Girl, no alcohol at all is a good place to start - especially until you have a better idea of how damaged your liver is and while on treatment. 

Good luck with it all

Syd

Eric,

Ah! ... so that's it! ... (the 1.5 you spoke of) ... something in the link, and not something I said!! ... duh, I didn't even think of that! I just kept looking in my comments for what it was I said about 1.5!! 

Take the different methods of gauging your liver (when observing "a" test, in the singular) with a grain of salt. The whole of ALL your assessments (from labs to imaging, from biopsy to fibroscan) paint a better (fuller) picture, as well as having a good experienced guesser at the helm - like an experienced doc. Your doc may have already done an Apri score on you. I was a little disappointed the first doc had not already got your gentotyping/subtyping rolling.

I'm impressed you went to the trouble to do the math to add up your own Apri score. I didn't bother to check your math. (I've never been good at math, so avoid it, but lately I have really learned to love certain numbers  <15 and ZERO especially, hee hee).  One day, I was fretting at my docs office about my increasing fibroscan score of 12.6 Kpa (F4), and in an attempt to make me feel better, he reminded me, that it "could be possible" that I might be some closer to F3 than F4, because the F4 I was focused on was based on the fibroscan kPa number, and ALL has to be taken into consideration, my Apri score was not terribly high, so, together along with all other indicators they point to a direction (an approximation) not necessarily a "rigid" fact. (Pun unintentional).

You are young, perhaps you have not had HCV for a really long time, your indicators thus far look not too bad, so a fibroscan might show you a low fibrosis score. No way to say what it might show, unless you had one. You should find out whether you can be denied immediate treatment, if you have a low fibrosis score - I would google up who has fibroscan machines in your area, to be prepared - if your doc says you will NOT be denied immediate treatment regardless of your Fscore, then ask your doc if he couldn't arrange one for you from the place(s) you have found. I think it is always better to know what your F score is. In the past, depending on your F score, that had a bearing on what drugs you got and well as the duration. Good you had the U/S tho.

Tig! An excellent reason for not drinking, indeed! GB trouble! Perfect. 

JimmyK is quite right - a person successfully treated for HCV, can be UND in short order, and can then sustain this forever, but .... given the right circumstances ... i.e. say ... I later receive a transfusion of blood tainted with HCV ... then I could contract another (new) bout of HCV, even tho my first bout was successfully treated. I may be cured of my GT3a, but I am not immune to later contracting a brand new infection of HCV, of any gentotype - I could even contract a new case and be a GT3a again! I am a cured GT3a, should I suddenly decide to become an IV drug user and share needles with a GT1, I could easily get a new case of HCV, and if I did, then I may well show up as a GT1. 

On preliminary testing (when I showed antibodies), all that meant was that i had been exposed to HCV, at some time, it is the subsequent PCR VL that confirmed whether I currently had a HCV load or not. I could have shown antibodies, and been one of the lucky few, who managed to fight off a HCV infection all by myself with no treatment, and who subsequently showed no load. 

Even if a person was lucky enough to have fought off a bout of HCV all on their own, once, it does not mean they can do so, again, the next time around.

That's how I understand it anyway. C.

Hey Eric,

If you need another explanation to provide your peers about abstaining from alcohol, tell them you're having problems with your gall bladder and can't drink until further notice. Doctor said to take a few months off while tests are being done. You don't have to explain any further. Shrug shoulders and tell them you're just following orders.... 

Just don't drink! A doctor telling anyone with Hep C that it's okay to drink, needs to do a little review on alcohol's effect on a sick liver. Good luck!

Glad you got some answers but not sure I agree with the no biopsy no fibroscan. I say this because many insurance companies will not pay for treatment without one of those to show the exact shape your liver is in. 

It is best to cut out alcohol as it taxes the liver. Anyone with HCV should be mindful of this. Who wants to make matters worse (rhetorical). 

Good luck talking to your girlfriend and I hope she is supportive. Please keep us posted. 

Finally met with a GE today!! To be honest, I came out a little confused. He definitely knew a lot more than my previous doctor. He looked at my test results and the ultra scan and decided against a need for a fibroscan. He said he sees no evidence of cirrhosis based on the test results and there is no need to biopsy the liver. The ultrasound showed everything being normal except for the gallbladder (if I recall correctly), which he said he is not worried about. Nor is he worried about the raised bilirubin.

I am still tempted to request a fibroscan. Do you think that's a good idea? Are these expensive?

We had a long 40 minute chat (mostly questions and answers). He went over my risk-factors and believes that it is possible I got infected from my girlfriend (due to my lack of risk factors). He wants her to get tested and if she is infected, then they need to go over her risk factors. I'm not a big fan of this (to suggest that my girlfriend infected me), but regardless I will talk to her next weekend and break the news. I am still crossing my fingers that she hasn't been infected.

Another interesting thing he said was that it is in fact okay to have a beer or glass of wine (or two) once a week (he advised against overdrinking though until cured). 

Next steps as outlined by him are to do additional blood work to find out the genotype and pick out which treatment is suitable. Hopefully I'll be on my way working towards being cured soon!

Eric

-- Edited by EricChuckFar1 on Wednesday 19th of October 2016 12:26:37 AM

EricChuckFar1 wrote:

---

Canuck, thanks so much for analyzing the data for me! I looked over the test results again and do not see any reference to the genotype. Is it typically part of the test? (It might have already been ordered/done). I've sent a message to the Doc who ordered the tests to see if the genotype is available. (Good). I'm afraid I may have to do another set of bloodwork, which will further delay things!! (Having bloodtests should not delay ANYTHING. And, don't be surprized when you get to the GE - as no doubt, there will likely BE more bloodwork coming up for you! In the unlikely event that they have not already done a GT and subtype for you, then any bloods, or assessment tests of any kind, that can be done as soon as it is ordered will not delay you, rather it will only help you complete all the preliminaries and speed things along, a GT is very basic info, needed for your treatment plan, I am sure the GE will still see you even without you knowing your GT, even without having your U/S in hand. Better you have as many items completed as soon as you are able, but it IS a process, and there will be some hurdles, testing, appointments, or requirements you will probably NOT be able to anticipate until you see your GE anyway. He will order what you need done, and get the results, if it hasn't been done. Your GE will gather all the test data, as it comes in, and often it starts with the basic info included along with the referral letter from doc #1 to doc#2.)

For now, I'd like to go see the GE armed with at least the Ultrasound and labwork results. I think that's a good start. (Yes, an excellent start!) I will ask the GE about Fibroscan. (Good.) Sounds like he will most likely order one for me anyway. (And, inquire if there is going to be any other kind of imaging he may want, aside from the U/S, like a cat scan.) 

As far as immunizations, I am already immunized for HepA and B (at young age and again before college) and I believe those are for life. (Generally yes). Is there anything else I should be concerned about? (hee hee - "young age" - age IS all relative, isn't it, the old lady said! ho-ho. He should go over your immunization with you, he may draw bloods to test how good your immunity levels are - immunity titres, to assure immunity memory looks good. Some docs will re-innoculate for A and B, depending, but that may not be necessary at all for you. It is a debate, one can have sufficient "immunity memory" from  immunization many decades prior, even if current titres show up lowish. He may want to review your girlfriends immunization too. He might recommend flu/pneumococcal immunizations - no idea! what he will recommend, but he will no doubt assess your immunity to other things.) 

RC, thanks for the advice. I finally scheduled the ultrasound for this coming Friday. It will be an ultrasound of the abdomen and I believe the gallbladder, pancreas and liver are all right next to each other so I am sure they'll capture it, but I will mention it to them regardless. (Yup, they get a peek at everything they can, spleen/kidneys too.) My appointment with the GE is on Tuesday next week.

I do have one more question. Do you think it is a good idea to wait until next year before proceeding with the treatment? If for whatever reason the treatment spans December and January then I would have to pay the out of pocket max twice (once for 2016 and a second time for 2017). (It is a valid concern for you - it's a thing you should discuss with your doc, if he will. He will be assessing how urgent your treatment is. As well, it is a concern for you, telling your girlfriend, so I hope you will discuss this with him too - hopefully he will be "the kind of doc" to help you address concerns.)

-- Edited by EricChuckFar1 on Tuesday 11th of October 2016 04:21:56 AM

---

Canuck, thanks so much for analyzing the data for me! I looked over the test results again and do not see any reference to the genotype. Is it typically part of the test? I've sent a message to the Doc who ordered the tests to see if the genotype is available. I'm afraid I may have to do another set of bloodwork, which will further delay things!!

For now, I'd like to go see the GE armed with at least the Ultrasound and labwork results. I think that's a good start. I will ask the GE about Fibroscan. Sounds like he will most likely order one for me anyway.

As far as immunizations, I am already immunized for HepA and B (at young age and again before college) and I believe those are for life. Is there anything else I should be concerned about?

RC, thanks for the advice. I finally scheduled the ultrasound for this coming Friday. It will be an ultrasound of the abdomen and I believe the gallbladder, pancreas and liver are all right next to each other so I am sure they'll capture it, but I will mention it to them regardless. My appointment with the GE is on Tuesday next week.

I do have one more question. Do you think it is a good idea to wait until next year before proceeding with the treatment? If for whatever reason the treatment spans December and January then I would have to pay the out of pocket max twice (once for 2016 and a second time for 2017).

Hey RC,

Yup, i concur. But no doubt his doc(s) will check out everything through all the assessments.

Eric,

As I mentioned, it will not hurt to point out to the U/S technician, that aside from your VL, your only known elevated LFT is a bili. But I am sure they always strive to get good visualizations of ALL your abd. organs via U/S, and, no doubt your docs will be taking ALL your labs, and imaging, in together to consider.

My mind always drifts to GB as well, when a bili stands out. But we often see bili fluctuations in HCV. 

Usually, a lot can be seen/told by even a simple U/S. It's a good test to have. They will get you assessed well Eric, one step at a time.  C.  

Oh Eric,

Just about choked when I saw how LOVELY your lab work is!! Nice. Lucky you, the only thing up was your bili and even that is not too scary!! Can't say I've seen too many of us with a "within normal range" ALT with untreated HCV!! Never mind an Alt of only 20!! Nice for you, not much "signs" of inflammation going on at the time of this draw (at least according to the bristling "normals" shown on the labs alone) - this does not minimize how ill you are or that you do not have an infection - your doc, ALL your assessments, and ALL your other tests (combined) truly paints a better picture of where you are at with any liver damage. Many of us start off treatment with elevated ALT's (one indicator of liver inflammation), and many of us would kill to achieve a nice normal ALT like yours! So, at first superficial (unofficial) glance, things look pretty good to me on your lab front. The nature of the HCV beast tho is that ALT's and loads can flare and wane as we do our own battle to fight HCV, so labs may fluctuate when untreated. It took me a bit to git that, that VL and Alts can drop all on their own from time to time. Your current labs do not necessarily mean your load or your ALT's have not fluctuated in the past (up or down). 

Re: the HCV PCR VL results, if you cannot see any "numbers/letters" on the page (at all), like 1, 1a, 1b, 2, 2a, 2b, and so on, 3, 4, etc., then indeed your genotype/sub-type may not be included on this paper you have. It probably HAS been done, and may be available in their records now, or, is still to come, but ASK for clarification/confirmation on Gentotype and Subtype. Inquire of the lab, or the doc you saw, if they already know the GT or subtype, or, whether this bit of data is still to arrive. When I received my first PCR VL copy, I of course could easily see my 10 million+VL and the conversion to log 7.01 equivalent number, but totally missed seeing the tiny non-descript untitled numbers at the top right hand side, which only said "3a'' in small unassuming print!! I had to scour the page again a wee bit later before I even could see it and figured out, oh drat!, that IS my GT!! The letters "GT" or the word "subtype" was not even on the page beside the "3a". It meant I was GT3, subtype a.

Baseline assessment data usually includes some kind of abd. imaging. The ultrasound (U/S) is valuable and can reveal quite a bit of info. When you present yourself for your U/S they will already likely know this is for HCV assessment, and you can mention to the U/S technician doing the scan that your only obvious out-of-norm recent lab results, seems to be the confirmed VL, and an elevated bilirubin. You might also ask (either of your docs) if a CAT scan or MRI is planned. If so, get it booked in case there is a waitlist.  I would also want a fibroscan, in addition to the ultrasound (but that is MY preference). I give fibroscans a fair bit of credit as good added data (than others do). Fibroscan is a fairly inexpensive test (say, compared to CAT scan which boasts a host of data). Fibroscans provide only limited info, but it is an easy (but somewhat debatable) indication of your kPa measurement of liver hardness/fibrosis and is one way (another way) to give you a guess at what your F score is (i.e from F0 thru 4). U/S is a good test and will tell you much, but it is only part of the assessment(s), it "alone" does generally provide you with an F score.

That sounds promising (if you nearly had an appointment sewn up with a GE already), it would seem then, that he does not have a great backlog/waiting list for appointments, and you may get relatively quick and easy access to him.

Make sure your immunization and immunity levels are assessed with the doc, and are brought up to snuff as necessary.

The sooner you know, and complete, the good and necessary preliminaries, the sooner you can get treatment going, and get rid of this virus. Your doc "might" even provide to you a lab req., for you to give to your girlfriend, so she can have her antibody test done, without even seeing her. They did so for me, for my partner, just for convenience and to expedite things. Although my partner did end up sitting in with me on some of my prelim. appointments anyway, just for my moral support, so he could hear things I might have missed, and/or, for him to have an opportunity to ask any question too. Both our immunizations were assessed and we had them brought up to date over the following months.  C.

Hi Eric

What I meant is that the more liver damage one has the better one feels, in relative terms, after SVR.   People who have little liver damage tend to have few HCV symptoms and, therefore, don't feel massively different after SVR.  But, obviously, have less fibrosis to begin with is a better thing.

Juliet - you were super-unlucky.  I've been in 2 longterm relationships since contracting HCV and neither lady got HCV from me.  

Pablo

Hi Eric,

Welcome from me too. I am glad you found this place.

ALL of this IS just a TON of info for you to process, especially being new to the game - don't worry about figuring out everything and every detail immediately, even though you really want to (I was the same) - rather, focus on the most immediate needs - which you DO seem to be doing.

You said ... "I was diagnosed two days ago ...A physician, at the lab where I had gone for labwork, had called me in to discuss the results ...I am just under 30. My viral load is around 7 million and the doctor guestimated that I've had the virus for many years ...for now I have followed up with the lab for some more bloodwork (I guess to figure out the genotype?) and am going to schedule an ultra sound next week. I will hopefully see a GE a week after the ultrasound ...I will probably share with my girlfriend and have her tested ...I will most definitely tell her within a few week ...learn as much as I can and get an appointment with a GE or hepatologist. Will cross the insurance bridge once I get there ...

Just GETTING diagnosed is a huge leap forward, it is VERY good (that at your young age) you have found out you have HCV, and have a very good path to fix it nowadays. Many people have not been so lucky to get diagnosed at a young age and have unknowningly been packing HCV for many, many decades. Over time, more and more damage can occur and accrue to your liver from HCV. Generally, the earlier you are diagnosed and treated, the better - less time for the HCV to continue doing damage to your liver (eg. causing fibrosis or cirrhosis of your liver). That is what Pablito was getting at I think- after the HCV treatment, liver inflammation decreases, with the inflammation process stopped, your liver then has a chance to rest, so as to be able to recover and perhaps regenerate/undo some damage. Often, no further increases in fibrosis/cirrhosis are seen after treatment (which is a very good thing) After treatment, the scarring or hardness (the fibrosis) or the "fattiness" of your liver (what ever the case may be), may regress over time. All good. I think Pablito was referring to possibly "the amount" of damage your liver may have sustained - it stands to reason, the less damage the better, and perhaps the quicker and easier the liver might be able to recuperate/regenerate.

You may never figure out (for sure) how you got HCV, when, why - (maybe one day you might end up with a good guess), but for now, the only really important consideration (as far as when you got it) would maybe only be for the purposes of "second guessing" the possible length of time inflammation has been going on, the resultant level of fibrosis, and the condition of your liver.

You will find out soon enough (indications of liver damage) - your doc will soon be able to gauge things a little more accurately for you with the assessments - lab tests, such as liver function tests (LFT's)/ imaging - the ultrasound you mentioned, or other imaging, and likely a fibroscan - a kPa measurement of your liver hardness).

So, do concentrate on the preliminary work at hand, the appointments and the testing (all the items you mentioned above that you are going to do) - they are the most important for now.

This one doc you spoke of (the one who told you of the HCV) - is he your regular physician?? Did he not already refer you to a hep doc?? Will you be seeing both him AND a hep doc for your treatment? If so, I hope you do not get delayed waiting for a hep doc appointment.

Your testing thus far ... (you must have already had a HCV RNA PCR test completed, which shows your viral load count) - as you said you were told your VL was showing a count of a 7 million?, so, it is likely your genotype (and sub-type) may already be shown on that same test.Ask. You might start requesting copies of all your tests.

Good to know your genotype and sub-type, and fibroscan results (or any other tests/assessment results indicating your liver fibrosis - like your fibrocan F-score, i.e F1, F2, F3, or F4) as these things can give you heads up as to what drugs or treatment duration you may end up being offered. Good things to know, and to discuss thoroughly with your doc(s) early on, in case there are choices in treatment drugs for you. Insurance also may dictate certain tests be done, conditions that must be met, or have a say in what drugs they will cover, so insurance is a consideration too.

Arm yourself with the reassuring data about how hard it actually is to give HCV to your girlfriend and then tell her. Then get her tested, then you will both be reassured.

You and her are the only important people in this equation for the moment - well, excepting for the docs and labs of course. Expend your energy there first.

It will be OK, you'll see.  C.