Hep C Discussion Forum

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

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.

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 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!

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. 

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!

LM, 

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

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.

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,

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! 

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!

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!!

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!

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!

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.

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 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!

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.

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!

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!

Lind. I like to go by RC.     

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?

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?

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.