As a former member of the US Navy, I can attest to that! 

Saw this today at the lab while having a blood draw.  Appreciated the message!

Sorry LM,

I can't advise on the PPI thing, that was one item we said should be on your list to discuss with them, at both your appointments, whether to be off or on certain kinds of PPI's, to modify how and when they are taken, to substitute your particular PPI with another, or something else, and/or instructions for any kind of antacid use period - other than what we already saw and read in the leaflets, it IS something your Doc/NP and Gilead know what to do about and how to handle.

I am sure you will get it all sorted tomorrow - they ARE good at this stuff.  ; ) C.

Hi C-  Love the celebratory photo!  Thanks!

I do hear what you're saying and have my (huge) binder and list of questions for both doctors.  And I especially love your analogy that the worst part is over and the remainder of time is devoted to just getting this cured!  I pray it's going to be smooth sailing from here.

My husband is able to go with me to the specialist but unfortunately can not go with me when I pick up my Epclusa.  I wish he could but I intend to take as many notes as I can so I don't forget too much!  

I'm pretty sure my NP said I will be coming in for blood draws at week 4, 8 and 12 and then, I assume 3 and or 6 months post treatment.  I think I set up those appointments with her tomorrow as well.

I think one of my main concerns now is how I do getting off of my PPI and dealing with my GERD.  Tha's why I'm thinking of taking the Epclusa at night which is when I have the most trouble with it.  That way I can take Tums earlier in the day (I know it's at least 4 hours before) to ward off the night time reflux.  Any advice on that topic?

Thank you again to all the people here who I now feel are my friends and the only ones who truly understand what this journey is all about.  There are really no words to say how grateful I am.

Congrats on the Epclusa start!

Whopee

Thursday will be a happy day!

Glad you are getting both appointments tomorrow.

This "keep calm/slay dragons" stuff, it's true, but for now, because you are soooo looking forward to getting started, it should be "stay calm/ask questions"!

Prioritize, concentrate on your 2 appointments tommorrow, "get" as much as possoble out of these appointments and "glean" as much as you can out of these visits, and especially out of the visit with the specialist.

Review your "questions" list (I hope your partner can go to both appointments with you - that might help). He may hear answers your excited mind does not take in, and/or he may be able to recall a subject you wished to cover that does not seem to be surfacing. If hubby is going, he too, should review your wanted Q&A's list.

I know I found it difficult to get all my burning questions "out" (or answered) during these appointments with docs and staff (they have their own time-consuming agenda's too), and some things always seems to get forfieted/slides off to the wayside, but try to get your most burning things mentioned from your lists.

I know sometimes, what seemed important last week, suddenly becomes less important, when you can almost see that bottle of long-awaited epclusa so near to your hand. Ask for an U/S and a fibroscan. Confirm (hopefully) frequent blood draws that include PCR's (VL's).

You only have a handful of appointments, and few opportunities for "talking" to these people, so try to make the best use out of these limited meetings, what you DO (easily) have, is a whole 84 days of the comfort and relief that you will get being on epclusa.

Congrats on arriving at your big day tomorrow! Welcome to Epclusland. But ... the exciting part of this ride is already over I am afraid. It's just  a smooth tame ride coasting into the cure now. C.

Thanks PS.  Soon we'll be traveling this path together!

Thanks as always for the encouragement, Tig!  I'm doing my best to keep the anxiety at bay, but not sure who's winning that battle!  Now that I finally have a date to start, I'm more nervous than I thought I would be.  I thought I'd get to this day and feel relief, but instead feel more scared than ever.  I know it will be a huge relief when I pop that first pill in my mouth.  Can't wait to graduate to the next On Treatment section!

I've been trying to acclimate my body to all that water, but am having a hard time drinking 100 ozs a day-so far, I think I've made it to 64!  But will continue to try and reach my goal of 100!  I've certainly become convinced that it's the golden ticket to warding off those pesky side effects!

Thanks to all of you for getting me this far.  Please don't leave me now!

WTG LM!!!! Hooray!! I am so happy that you will be joining us in slaying the dragon from Tig's Club Car...right on!!

When you get started, you can start a new thread in the On Treatment section. That's what we call graduating to the next level! That gives you 24 hours to come up with a clever new title for your thread, be creative now!

I know the anxiety you're feeling right now. Just do your best to relax and know that you're going to cruise through treatment without a hitch. The days leading up to starting can be some of the most stressing, but once you start, that will level out. I'm happy that you're able to begin treatment with these fabulously effective new drugs. The success rates are phenomenal and side effects are minimal.

My best piece of advice today is to sit up straight, take a deep breath and show the world that confidence rules. Banish anxiety from your Castle! Start by ruling this Dragon to an early demise! Make it so....

One other piece of advice that I must also share..........HYDRATE, HYDRATE, HYDRATE!!!! Start now, 3-4 liters of water everyday. You've seen us telling everyone to do the same thing, now it's your turn. It's the simplest way to avoid the most common side effects. 

I am finally going to my GI tomorrow to pick up my Epclusa!  So ready to get this train started!!

I have a 10:00 AM appointment tomorrow with the specialist before my 2:30 PM appt. to get the Epclusa.  Going to be a heavy duty Hep C day of information!  Hope I can remain somewhat clear headed through it all!

-- Edited by Lindsmatt52 on Wednesday 30th of August 2017 11:16:28 AM

There is a lot of good information here on the forum. I want to remind everyone of our Search function at the top of each page. If you enter a keyword or two, you'll be presented a list of discussions we've had here. You never know what good stuff you'll find!

Thanks C.  Just read it.  Very informative.

LM, 

So, for some more "killin' time", did you go back to read this one? I thought Mallani's view was informative.  C. 

C-I read your post on "waiting" and laughed until coffee came out my nose! Humor is often our only solace!  You have such a way with words.  If you're not a writer you should consider a new career!

Hey LM,

So near! Won't be much longer now. Just around the corner!, and you will soon be able to start. 

Time to trounce this virus, AND the price is right too! Nice.

Lucky, lucky, lucky we are to get epclusa.

You are not "over"-analyzing things, some people DO need to know as much as they can (like me! for example!), "leave no stone unturned", others seem to be able to concentrate on their priorities only. Everyone is dif, therefore our aproaches to treatment of course are dif., neither way is wrong.

I had months to spin my wheels waiting to start treatment, and being that I tend to be a "no stone unturned" type, I did quite a bit of learning (or tried to, during that time), so the "time" ended up being a good thing (kinda). I have always found the mysteries of human function immensely interesting, so explains my focus - that's just me.

Good you tried to ring the specialists bell again - these things are always worth a try (in my book).

I felt a special relief (once I had definitive confirmation) that I WAS going to get the tretament i sought. I hope your news of the impending arrival of your drugs, is tiding you over too. Just to keep you busy (while you are waiting to get that first pill past your lips) - I'll share one of my "Rants" when i was unhappily "waiting". Waiting, waiting, waiting

Hang in there, you are CLOSE! We can aallmost taste it!  C.

Whoop, whoop!! Congratulations!!

Thanks Polosilver.  Just got a call back and am only going to have to pay $5.00 each month.  I'm amazed and am have a new appreciation for the assistance and kindness I've been offered.

Hi Lindsay -- yes, as others are saying, hang in there. I was supposed to have a larger copay as well for harvoni and was able to get the coupon for the $5.00 copay. I thought to let you as well, that when I received my Harvoni from specialty pharmacy, the invoice with packing slip had the large amount copay and I gasped since they had told me it would be $5.00. However, when I registered and checked my account billing online,,it said to only pay 5.00.

Hi Lindsay,

If they can't get you copay assistance, use that Epclusa manufacturers link I provided in a previous thread. Don't worry, you'll get your coupon! The wait is always difficult, but you'll be on the way soon! 

I haven't actually received my Epclusa yet, but we're getting closer!  I called Walgreen's Speciality Pharmacy today to find out what my co-pay was and was told it was $4812 per month!  I had a minor stroke but after putting me on hold, the extremely nice woman informed me that Walgreen's financial assistance department would help with it and I may end up paying only $5.00 per month!  That made my day  I'm going to try to stay on this positive ride for as long as I can!

Hi Polosilver,

Thanks for sharing your story with me.  I realize it's a waste of time trying to figure out how I contracted HepC, but it still continues to baffle me.  My meds are going through a specialty pharmacy as well (Walgreens) so I am just waiting for a call from my doctor's office when they arrive.  The first month goes through them and the second two will be mailed to me. The anxiety of waiting is the worse and it's at times like this that I miss that glass of wine!  Good luck to you and I hope you continue to feel better!

C,

Thank you for such a concise and detailed explanation.  The band of Gurus on this board are not only knowledgeable but have a way of putting all of this into perspective for those of us who are struggling to understand the ins and outs of HepC.  I can't imagine going through this without your help and guidance as well as the shared stories of others going through the same thing.  I think this could be such a lonely disease for so many without the folks here to lean on.  Thank you all for being such compassionate listeners and donating so much of your time and efforts.  Oh, and the humor thrown in along the way is invaluable!

Hi Lindsmatt52 - I suspect I've had HCV since the 70's. When I was a teenager I was sick and put into the hospital. I recall the doctor saying I was 'jaundiced'. I remember being tired and not feeling well, and was put on a few weeks of bed rest and then told everything was fine and I never thought about it anymore. Anyone who I could have asked about it now are deceased and the hospital I was in even closed several years ago...so I decided to focus on healing since not much I can do about it now other than stay on the treatment train. 

My insurance had me go through a specialty pharmacy for home delivery. From the time they received the prescription, until the meds arrived took a week. I think its normal to take some time to get everything arranged.  I understand the anxiety, I'm with you sister. My anxiety continued to edge a bit higher every few days for about 6 weeks, while going through the process of tests and all to then finally get the pills. Hang in there!!

LM,

Regarding these blood tests - it's quite possible to have a high (or high-ish) "fibrosis" (scarring) "rating" score, and, also a low (or low-er) "inflammation" score, at a given pinpoint of time - inflammation does not necessarily have to be in sync with or equate exactly to how much fibrosis may be indicated at one moment in time by a test. The inflammation process can spike and occur in an off and on fashion, the fibrosis tends to build/show itself more progressively (that is kinda my lame explanation and synoptic understanding of it anyway!).

The nature of HCV, being a "chronic" infection, does mean that inflammation and the building fibrosis process do go hand in hand, but it is not necessarily perfectly aligned, as might be shown by one single blood test taken at one given point of time. Whether it be your viral load, an Acti-test, or an ALT (alone) - 2 weeks from now, 6 months from now, years from now ... theoretically, in chronic hep c, it would be possible for your same tests (repeated over time) to show elevations in some areas and remain the same in others. Many different kinds of blood tests can show fluctuations, from one point of time to another, thus the reason for repeated following.

Note the definitions of the Acti-test AO-A3 scoring. It is trying to measure "activity", how hot or rather how active your level of inflammation is at this one given moment. It includes your ALT info - another rough indicator of inflammation.

Together many indicators show best where you and you liver health may be at - from signs and symptoms, to  biopsies, blood tests, and imagings - together they form a better overall picture. Each test has it's own particular features/boast certain benefits, and each can have drawbacks when compared against each other in isolation. In the hands of a skilled interpreter, in totality, ALL of your tests (bloods/biopsy/imagings) offer some important snippets and indicators of where you and your liver are at. Fibroscans are good info and offer a dif way of looking at fibrosis.

There is a valid argument for having many differing tests done, repeatedly - generally, the more info, the better the guessing.

Here are further excerpts from and found in this link: Fibro-sure (also called Fibro-test), the Acti-test, and the Apri-test

ActiTest, another non-invasive test, measuring liver inflammation in chronic viral hepatitis C (or B),  resulting in scores which correspond to the 0-3 point METAVIR Activity (inflammation/necrosis) scale

___________________________________________________________________________________________________________________

WARNING:  Do NOT use APRI alone as its accuracy rate is not sufficient to do so; experts recommend using a combination of two or  all three of the non-invasive liver tests (APRI, FibroSure/FibroTest, or FibroScan).

Using the results of APRI, a non-invasive test, one can very roughly determine whether one has a high risk of having advanced liver damage. It is not particularly useful in telling the exact Metavir stage; it simply provides 'one piece of the puzzle'.

The reduction or lessening of pain or discomfort can be attributed to several things and it's hard to put your finger on what that might be for you. Many begin to notice it right away, many don't, but you'll certainly notice improvements. The other day, Saluda was having RUQ pain and I attributed some of that to bloating, which is common with these drugs. Well, he ended up having emergency gallbladder surgery, so you never know sometimes. But, it's very common for people to notice improvements in their discomfort when they've been on treatment and thereafter once the liver inflammation HCV causes decreases. You're right, the liver has no pain receptors, but the supporting tissues and the capsule it's enclosed in do. When the inflammation reduces, those tissues are less apt to cause the discomfort we associate with it.

Don't expect miracles overnight, sometimes people have had this disease for so long there are other issues that still must be dealt with. Just know that stopping the virus and allowing the healing to begin brings improvements and positive hope for a healthier future Hep C free!

Thanks Polo.  Always nice to talk to another newbie!  I saw on your biography that your HepC was found during routine blood work for baby boomers as well.  I must say, I was really shocked at the diagnosis but have come to accept it now.  Do you have any idea how long you may have had it?  I'm just anxious to start treatment as soon as I can.  You may be right about the tiredness and brain fog.  I've had that for a while as well and just attributed it to getting older.  I would be thrilled if that changes for me once I start treatment or when I'm finished.  Thanks for sharing your thoughts with me!

Hi Tig,

Yes, I applied for the coupon a while ago but am just waiting to see if I'll need it.  Just have no idea how much or little the co pay will end up being.  Thanks!

Hey Lindsay,

Did you apply for your copay coupon? You need to check this manufacturers website and see if you are eligible. It could save you a bundle!

Epclusa Copay Coupon

Hi, I'm new too. Day 18 on Harvoni. It seems we are all the same, (have or had HCV) but different. I was diagnosed in June and had low VL, but AST and ALT numbers a little high, with F2 mod fibrosis. I've had what I consider symptoms for years though, fatigue, itching, upper right abdomen pains, and then considerable brain fog set in the last 5-6  years. I just accepted that it was who I am and some of it related to aging process. I too am feeling better in general after these 18 days and hope the trend continues. You may be surprised that once the treatment gets underway that you may discover you could have been feeling better. I understand over analyzing, I did that and really worked myself into a frenzy before I started treatment. I started thinking I was going to take the pill and immediately 'feel something happen'. Its more subtle for me.

Thanks C.  You and all the others here are such a Godsend to all of us just beginning this new phase of our lives, as well as those currently going through it and past it.  

I did call the specialist office today to remind them once again of my desire to get in ASAP and to make sure I was still on the cancellation list.  So far, no change in the appointment and I kind of think it'll stay that way.  I did get a call from my NP's office saying that the Walgreen Speciality Pharmacy will be handling my Epclusa and I called them to try and find out what my co-pay will be but they hadn't processed my order yet.  Said they would let me know when they do.

I do have another question that has been nagging me.  I've read a lot of posts on here where people are saying they feel so much better once they start treatment and/or after they've finished treatment.  I do consider myself very fortunate that I really don't have any symptoms to date and am curious as to why that would be.  I do have a high VL of 7 million, although my other labs are fairly normal.  Does the discomfort people are experiencing come from a liver with a greater amount of damage?  I have had an occasional pain just under my rib cage on the right side but assumed it was due to my colitis, IBS or gastritis.  I've also read that the liver itself doesn't really give off pain (I may be wording that incorrectly).  I guess I'm hoping that lack of pain may indicate less scarring or fibrosis.  Am I interpreting any of this correctly?  I also probably have WAY too much time to think about all this and analyze everything I read!  I am somewhat tired but attribute some of that to depression and anxiety.  Just curious about the different reactions people experience.

Thanks!

Hi LM,

You may be right in your memory of not having a hep A/B immunization before. It seems this event is not always a memorable occasion for many people, and over time, even records of immunizations you might have had can disappear or cannot be found. There are many people out there who have never been immunized to A/B. Nowadays, immunizations have generally become more prevelant and trackable as far as records of them. But still, some people do not know, cannot know, or recall if they were immunized for stuff from when they were babies or children, or even in adulthood! Nowadays, the powers that be are certainly trying to be more vigilant in getting people immunized for stuff, all over the world, from 3rd world higher-risk areas to 1st world countries where people are often globe-trotting to and fro. Preventing A/B in the world is an ongoing effort which public health work will never cease, unless of course we actually end up eradicating it some day!

Lucky 1st world vacationers sometimes do recall getting hepa/b innoculations, just because they were going on a nice vacation somewhere and remember having it done to minimize their risks.

Seems they DID look at your A/B immunity in a standard way as part and parcel of your work-up prior to starting your C therapy. Good. Whether you had no immunity or had inadequate immunity, the end result is that they DID ensure you now have some immunity to help you protect yourself from A/B.

This side of the ocean it is pretty standard to do these routine B screenings, prior to C treatment. Other places, it has happened that people who HAD actually recieved A/B immunization before (and did not know they had, or were not tested to show that they already had immunity) have been given the immunziation again (even though it was not really required) and apparently there is no ill-effect from this over-immunization.

So, in your case, I am assurred now they have assessed you appropriately and you are good to go! That was a clearer description of your 3 shot series BTW, it almost sounded like you were missing a dose the first time you mentioned your shots, so thanks for the further clarity.

So, back to the gruelling waiting bit. I would try calling the specialist again, the pleasant, but persistantly desperate pt, appealing to the reception/booking person might work - especially if you can explain your plight/angst and get them to acknowledge your timeline, your imminent looming start, and personal urgency. You never know! You might tactfully remind them that they have cancelled on you, twice already! It is a slim chance you could get in earlier, but still, worth repeated tries. Maybe you will just get lucky, or, maybe some nice person there will go... "oh ya, that nice lady who keeps phoning here", and think of you first if a cancellation does open up. 

If your drugs do arrive before your specialist appointment happens, and if you and you partner cannot stand waiting to start, and your NP feels very confident you are ready to proceed, then that will be a decision you will all have to make. If you do end up starting prior to the specialist appointment, then just be sure, again, to discuss all the meds you are currently on with your NP for her advice before commencing. Your dispensing pharmacy is also another resource for asking questions about meds you are currently on. Regardless of your start date (before or after seeing your specialist), if it were me, I would still keep my specialist appoint. 

You are close, it will happen! C.

Hi Lindsay,

We've had lots of discussion on this topic and you'll find a lot more by using the search function above. Just put HBV Vaccine or similar into the box and you'll get a list of threads. Your test results indicate you are not infected with A or B. If you had the vaccinations you would be immune to them and the test results would indicate that. It's common practice now for all patients beginning treatment and those that were previously diagnosed as HCV positive, to have the vaccinations completed. You don't want to risk contracting another form of Hepatitis. You should definitely ask your doctor for those vaccinations. Not having them doesn't present you any problems at all, they are strictly precautionary and provide you with much desired protection. 

Here's some light reading for you! There will be a test at 2...    (Wait til Canuck get's started on this!)

Forum Discussion

HAV/HBV Vaccinations

Hep A Antibody

Hep B Core Antibody

Hep B Surface Antigen

Hi C-

I don't think I've ever had the HEP A/B immunization before.  Is that a routine vaccination and is it done more than once?  My results said "Hep A Ab Total NEGATIVE" and" HEP B Surface Antigen Interp Non Reactive" as well as HIV Interpretation Non Reactive.  Does that answer your question regarding immunity?  Yes, I have had the Hep A vaccine in June, two Hep B vaccines in June and July and the third and final Hep B vaccine due in Dec.

I do not have an appointment yet with the NP but am supposed to get a call when the Epclusa arrives at their office and then go in to discuss and make future appointments.

I've asked to be on a cancellation list for the specialist but have yet to get a call, although I have had two previous calls cancelling my previous appointments because the doctors were going to be out of town  Summer is the wrong time to see physicians around here!  Too many vacations!

Thanks!

Thank you, Jen.  Happy to be a passenger with you on the Victory Train!  Good luck to you as well!

Lindsay

Hi LM, 

Thanks for the details about your immunization and imaging.

I can rest easier knowing you likely have no dangling basics not looked at, like immunization.The immunization is important only in that you, (in your HCV compromised state), should have all the protection you can muster against contracting any other kind of hepatitis, on top of what you already have. Same for the flu - no one needs to deal with the flu. It's all about minimizing risks.

It sounds as though they have looked into determining what your hep B status is - ruling out if you have chronic B, if they have already readied you by starting a series of A/B immunizations. Chronic B status is important to know prior to starting C therapy. If your A/B immunity was determined to be deficient, then it is acceptable to start the A/B immunization series (or re-immunization as the case may be) as soon as they are aware of this, or at least started, before you start your C therapy. The A/B series can be started (as per it's schedule), just before you start your C therapy. All immunization can be completed (flu when available) and the last finishing shots of your A/B series (at their pre-determined times), anytime through your C treatment with no interference. The important bits are to rule out having chronic B before starting C therapy, and the rest is to bring any deficient immunity up, as best as possible, to protect you.

Had you ever been immunized for hepA/B before? Do you happen to know if you had no A/B immunity or deficient immunity?

Up here, the common A/B series are 3 shots over a 6 month period, at specific times. Is that what you are doing? Just be sure to finish getting all of the shots.

Good your abd. contrast CT also gave you feedback on your liver, etc. (aside from the colitis which seemed to be the impetus in prompting the imaging). Imaging is valuable info. Your CT is over a year old now. So, I would still inquire about having an abd. ultrasound done (if you have not had one in the last year and if your only imaging was that CT of over a year ago) - if you have never had an abd. ultrasound before they are far easier than what your contrast CT entailed. I would still ask your specialist for an abd. U/S and a fibroscan - they are both valuable bits of comparative info going forward, what's to loose, all they can do is say no, or they may agree they are prudent justifiable tests to do.

That's great your data went to the specialist. Helpful for this visit and if you and he end up deciding you would additionally benefit from his services in any kind of ongoing fashion (as well as having your NP and GI). Good if all you glean from him are Q&A's, PPI advice, and maybe a requisition for an abd. U/S and a fibroscan.  

Do you have a pre-booked appointment to see the NP again? Has she indicated a possible start date for you (when the drugs would actually be available to you)?

I hear ya, about spinning your wheels - the getting to treatment, the waiting to start treatment, feeling confident you have done everything earthly possible to pave the way, are hard parts of this whole thing. There is a special relief as soon as you get that first pill past your lips. But, there is more waiting along the way too.

You can phone the specialists office and offer to take any cancellation appointment that comes up? Just a thought. C.

Welcome Lindsay

So Glad you've been approved for treatment, So sad to hear about the insurance company - I hope you have put the wind up 'em by now - an issue we don't have in Aus as the government is paying for my treatment.

Together we will ride this train to Victory Station.

I have 12 weeks and 3 days left on my treatment of Zepatier and so far all good - This site has saved me from doing treatment hard - physically, mentally and more importantly emotionally.

Good Luck Lindsay

Jen

No, they're listed fine. You mentioned them and whether the APRI and Metavir were of importance. I just wanted to provide you with some information that explains them in detail and offer you a way to monitor them using your own lab test results in the future. It's kind of nice having the ability to keep track of them yourself!

Thanks Tig.  I'm a little confused-did I list or refer to my test scores incorrectly on my signature line?  If so, how should I correct them?  I don't want the wrong information there.

Hi C.  Can't tell you how much I appreciate your thoroughness and the time you took to respond to my questions.  As far as the hepA/B, I have been tested for both A, B and HIV and all were negative,  I have had the A vaccine and one B, the other due in December. I have not had a flu shot yet.  When I saw my PCP a few weeks ago she said they didn't have them in yet and I probably could get one in September or October.  Do I need to get one before I start treatment?   I had a CT of my abdomen and pelvis , with contrast, in July 2016 for a bout of colitis but have not had one since.  At that time, my liver was fine.

I think I may be a little too hard on the NP I'm seeing and you're right, she has been doing all the proper tests, etc.  I actually wrote a personal letter to the Ins co when I was denied for Epclusa and my NP did finally put in an appeal as well at my urging but not for several weeks after my letter was received by them.  I was hoping to start the Epclusa next week but don't know for a fact that it will happen then.  I see the specialist on Aug 31st, so guess there's no harm in waiting but I am just so damn anxious to get started!  I feel as though he'll probably agree with the treatment because it seems to be the best option for me based on my tests but think I was just looking for confirmation and perhaps a little more guidance from him.  The NP is more convenient to me distance wise, but I would love to be able to have access to both doctors if needed.

My records have been faxed to the specialist by my NP and I have a huge binder full of labs, articles, etc. as well as a long list of questions to ask the Doctor in AUgust.  My husband is incredibly supportive and will definitely be with me at the visit.

Thanks again.  Hope I've answered all your questions!

Hi Lindsay,

The APRI score is a blood marker test to "roughly" estimate fibrosis levels. They are accurate in the middle ranges, but low or high fibrosis determinations can be skewed a bit, but they're useful in monitoring approximate fibrosis levels once a baseline is determined. 

The Fibrotest and Actitest are similar, and also rely on blood marker testing to determine approximate fibrosis levels. I feel it's superior to the APRI, which I don't believe is being utilized as much as it once was.

When and if you should refer to these test calculators, you MUST have the correct information available for more accurate impressions. The Metavir scale was developed a long time ago and is used as a scale to determine fibrosis stage. It was developed when liver biopsy was routinely used. Until recently, Biopsy was considered the gold standard for determining accurate information. I had three of them and while they are expensive and invasive, they still in my opinion accurate and provide a lot more information. You will see reference to the Metavir scale in just about every other fibrosis testing procedure. 

You'll see from these calculators, that your score does place you on the low end of the fibrosis scale and indicates a minimal amount of fibrosis. That's a good thing! The lower that score, the lower the fibrosis and damage. That gives you a good opportunity to get your liver back in tip top shape after you're through with treatment. It all takes time, but a healthy liver leads to a happy liver and a bright future without Hep C.

APRI Calculator

Fibrotest/Actitest

Lind. I like to go by RC.     

What day are you going to have the pills in hand? Do you know (for certain) what the day will be? Do you have to return to the NP before you can get the pills? Will going to the specialist actually delay you starting your epclsua for any great length of time?

You convey perhaps not a 110% confidence level (or satisfaction level) in your care via the NP, but she seems to have done some appropriate lab work (from what you have posted here) and somehow they did successfully re-apply and get you the treatment choice they thought best for you rather than letting you do the regime insurance suggested, so, can we say they are not doing their best for you?, I don't know. I had serious doubts about everyone I saw (to some degree) while I was desperately searching for the right treatment for myself - this "waiting" time frame can be FRAUGHT with fears and doubt.

I have a feeling you would feel better about everything by seeing the specialist you planned on seeing, it may not delay your start on epclusa by much. Who knows, the specialist may be great (or not), offer you good or dif or the same advice as your NP, who knows, unless you go. He also may wish to work with you or follow you. I do not think the specialist is a bad idea. The more info the better (in my book anyway).

Same idea for the value of imaging via abd. ultrasound, and having a fibroscan - the more info the better - your specialist may order those for you (or not), who knows. (You may have already had abd. ultrasounds with your GI, I don't know.) Your specialist may have access to a fibroscan. Hard to say exactly what positives you will glean from the specialist visit.

You "sound" like you are prepared to follow through with your whole treatment with the NP (at the GI docs office) alone, it may be of benefit to you to also work with the specialist (if the specialist suggests this) as well as the GI who is letting the NP handle the bulk of your care and tretament - just determine what the specialist's thinking is as far as your meds, your course of epclusa, your course of care, and how your care should be handled, if you are still unsure.

As far as any "delay" in starting epclusa. the priority is whether your immunity levels have been looked at and brought up to date if necessary - that is why I keep asking about your hepA/B/flu. Probably your NP has? ascertained your immunities are OK? If they are not, then B immunization (or re-immunization, as the case may be) should be (at least) started, prior to your hepc treatment.

If you take your list of ALL your queries to the specialist, i think you would perhaps be assured better, that you are indeed "ready" to proceed.

Based on just what you have shared (on your labs and the info you have offered) it does sound as though your level of fibrosis is on the lower end of any of these scales, good you have had all those blood tests done, together they paint a picture, right along with all the the other labs and your hx and signs and symptoms. Abd. imaging(s) and fibroscans only add to the overall info and are good baseline data to own (to look back at) for comparisons as you cure your virus and move on. Baseline tests, repeated over time, can help in measuring recovery from the effects of the infection.

Do you have all your own copies of all your labs and tests? Are you taking those with you to the specialist (if you go)?

Hey, that is very nice to have someone in the family accustomed to the "trade" so to speak - he I am sure will be of great support and help to you. Could he go with you for the specialist appoint? Just a thought. C.

Hi-Do you go by RC or Robert?  Either way, I just wanted to say CONGRATULATIONS on your new liver.  I'm quite new to this board but have been reading your story and am so humbled by all you've been through.  You obviously are so loved and admired by a lot of people here and I'm sure it's well-deserved.  I can't believe you're already answering questions on here but I suppose that's one of the many reasons you have so many people supporting you and caring about you.  I'm honored to "meet" you!

Thank you for answering my question and I will try to ask the specialist I'm seeing on Aug 31st about a Fibroscan.  So are the Apri score and metavir score of little use either?

Hi Lind-   The fibrotest (Blood test) is ancent diagnostics, however they still use it now days because of cost$$.   All the old timers around here dont  put much merit in that test

The gold standard is biopsy.   However I feel the fibroscan (transducer bounce test) at some point will be the gold standard.  I have had at least 8 fibroscans and they have proven to be very accurate.  Push for a fibroscan- it will tell you a lot about liver condition.  RC

I have a question about the Fibrotest-Actitest score.  My Fibrotest score came back as 0.41, which puts me in the F1-F2 bracket.  But my Actitest/Metavir score was 0.18, which barely puts me in the A0-A1 category.  Plus my APRI score is 0.266.  So, if I'm understanding this correctly, the Fibrotest shows minimal fibrosis but the other two tests show less.  I have not had a Fibroscan because my GI doesn't have one.  Does this sound right and shouldn't the results be more similar?

I sometimes have a slight pain just under my rib cage on the right side.  I know this is where the liver is located, but also have experienced colitis and other digestive issues, so don't know which it is.  I've read several threads on symptoms of Hep C but haven't really come across this exact one.  The pain is not severe and doesn't require any pain med or treatment.  My fibrosis lever is F1-F2.  Just wondered if it's connected to HCV?

Hi C.  Actually, currently an NP in my Gastroenterologist's office is who is treating me.  Apparently, only the Nurse Practioner in that office treats patients with Hep C-not the Doctors.  My NP did not recommend I see another specialist-that was my idea entirely because I wanted a second opinion.  I just didn't feel terribly confident that she was all that familiar with Hep C.  Since I've finally been approved for Epclusa, I  toyed with the idea of not keeping the second appointment but after discussing it with my husband (who is a Physician Assistant) and hearing your opinion. I've decided to keep the appointment. I had hoped to start the Epclusa next week, but am wondering if I should hold off until I see the other physician.  Do you have any thoughts on that?  Needless to say, I'm very anxious to begin treatment.

No apologies required, at all! - we post all over the place all the time around here - it happens - no biggy, having "your own" thread comes in kinda handy, but there are also "like-group" shared kinda-threads, or just "topical" threads - so many choices sometimes! - it is hard to choose!! I blab just about anywhere! But if a subject pertains more to one specific person, or a person's personal circumstance, or topic, then i try to pick and and post on the best thread for the purpose.

Newbies usually start with a thread (just like this one) and once you are actually on treatment, you can then make your thread an "On Treatment" thread. Tig is such a good guider on this.

But you can post questions or make comments anywhere on the site, as long as it tries to stay on the topic (albeit sometimes loosely) of that particular thread.

Don't be overwhelmed with copious technical epclusa or other info, many things are really waaay simpler, in practicticality.

Personally, I would, keep the specialist appoint (would be a fer sure, for me), leave no stone unturned - you never know unless you go, what you will glean and reap. Besides, your first doc refered you to see him, right?

Start compiling a "written" list of questions for the specilaist:

- go over your meds.

- ask for an abd. ultrasound and a fibroscan (if you haven't had them).

- make sure your immunizations have been looked at (hep A/B and flu).

- ask him how he is going to be involved (along with your other doc) in your treatment and follow-up.

- ask how many viral load tests you will be receiving over the 12 weeks of treatment (and when), I would want them at 4 weeks, and additionally, at least by the end of treatment. Follow-up testing is also routinely done at 12 weeks post-treatment and then at 24 weeks post-treatment.

 BTW - I would add your prior (pre-treatment) ALT and AST to your sig line - that is vaulable comparative info going forward.

It's all going to be good. No fear!  C.

Hi C.  First of all, I apologize for not completely understanding the protocol of this forum.  I didn' realize that the threads were sort of personalized but have a better understanding now.  I guess it's all a learning process!  Thanks for letting me know.

I appreciate all the advice on the PPI's and water.  I think I am a bit overwhelmed but all the things you can not take while on these meds and I don't want to do anything to screw up their effectiveness.  I'm becoming more nervous in anticipation of starting the treatment.  

I think you may have helped me with another dilemma as well which was whether or not to keep my appointment at the end of the month with the specialist now that I've been approved for Epclusa.  I've decided that I'll still go, if for no other reason than to have him concur with the treatment and provide me with any other tips or advice. 

As always, thanks for your wisdom!