Hep C Discussion Forum

Thanks Lam and Tig.  I'll be calling the doctor next week and will ask.  He's been working with Hep C patients since the early interferon days so he's pretty experienced.  He's probably going to check at 4 weeks post tx then again at 12.

It feels pretty good to have you all looking out for me.

Annie the blood work timing is odd because it does not follow the guidelines set forth by the AASLD-ISDA. Just insist on another viral load at twelve weeks after you finish the Epclusa. Just point to the guidelines as you need the SVR12 to prove a cure. As the cure rate for Genotype 2 with Epclusa is over 99% I would not worry but you need the SVR12 to make sure you do not need further treatment with Vosevi.

Wonderful Annie - so glad you are about to start, you got everything ready to go, don't be scared, you'll be quite OK, you will get through this just fine, trying to take a calm methodical approach will help (which I think you are already doing very well!), it is a stressful time (we know) getting here and then starting treatment, parts of this will go surprisingly quick and smooth - you'll see. 

Doesn't really matter, but I just think it a "little bit" odd, the date your doc chose for your next VL draw (Aug 29), being that (if your SOT is May 10) your EOT will be Aug 2, but your doc has chosen to do your only VL at about 4 weeks AFTER your Aug 2 EOT on Aug 29. Sometimes docs will do a VL at week 4 of treatment or at EOT, but then they will do it again, (very most often) at 12 weeks after EOT (which for you would be about Oct 25 - your 12 SVR), but not very often do we see them doing only one VL at 4 weeks AFTER EOT (in your case Aug 29).

Maybe he does plan to give you another VL test at the 12 week SVR date at around Oct 25. Just be glad you ARE getting one done at the 4 weeks after EOT, some people go through the whole of the treatment and don't get ANY VL testing until SVR12! Maybe you will get further clarification on this (if he plans on another VL at EOT+12 weeks, in October).

Did they instruct you to come back on certain dates for office visits during your 12 weeks on epclusa, and/or to have other blood work done on certain dates?

I may have mentioned this before?, I think it may be better to take epclusa with a meal (generally), for various reasons, even though epclusa CAN be taken with OR without food. A moderate fat content meal is thought to assist in absorption. The most important thing about the daily timing of the dose though, is regularity, not missing a dose, and not being late with dosing. Taking it with the same meal and at the same predictable mealtime also helps prevent being late in taking a dose, or forgetting the dose.

Drink lots of water! You can spread out the water intake throughout a 24 hour period, as long as you ARE drinking lots. But as the others have said, ideal/ample hydration levels can be an important and useful tool to help prevent sides, like headaches, etc.

Good day one if you start tomorrow.  : )  C.

Good luck, Annie! Fill us in when you‘re ready to get started. Let the Dragon slaying begin!

annie, that's great news yes, please let us know how it's going or if you have any questions

Hey Annie,

Nice to hear from you too, your start is not too far away now. Exciting and well won by all your diligent work to get to treatment, and S.P. is right behind you - doing the work to get to treatment and get her hepc gone as well. 

S.P.,

Do let us know how your appointment went and what your new GP says about everything. Me and lamassu will remain curious until you clarify about about the brain mass you mentioned. Keep going forward, you are going to get there! C. 

Wow!  I never thought of a connection between HCV and early menopause.  Hmm...what else has gone on in my body that I've never connected?  I just don't want to get my hopes up that getting cured will change everything because it might not be connected to the HCV, but at least I'll be cured!

oh yea, those docs go with the "deny,deny,deny" stance about HCV side effects as well as any tx sides.

just like fibromyalgia, lyme disease and chronic fatigue. if they don't understand it deny

OOooh, I just want to cuddle that little doggy!  What a friend he/she will be as you tread the road to recovery. 

Yeah, sorry.  I think you will have to go with a pharmaceutical for this beast, but you will be glad you did.  Alternative care may be better spent on readjusting and getting back to an old "normal" after treatment.

I, too, am glad you are asking questions.  People who have been through this shock, followed by treatment and cures, have a lot of first hand experience to share.  There are folks here who are really dedicated to learning and sharing knowledge, something you can't expect of  family and friends, or anybody else who hasn't been through this.

Wel

Good for you SP, that you have already gone to see a new GP pronto! (Your "primary" is like GP up here - "general practitioner").

Don't worry, your GP can guide you through all this (and so will we all try to help). He will likely start to get you set up for what labs and tests you need to have done, and he can refer you to a gastroenterologist if and as required, and/or the GP may work with you himself for the actual hep c treatment, with an understanding of guidance/assistance when required from the gastroenterologist. It will play out well, one way or the other. The anti-viral drug treatment process is actually far easier nowadays than it was in the old days, and they (and we) will see to it that you get at minimum some good following and the labs you should receive. That's about all there is to it!

Lamassu and Tig have listed most of the basic wanted assessment tests. The PCR is simply measuring how much virus can be counted in your blood (your viral "load") - if NO virus is detected then perhaps you are not currently infected - that is why the PCR/viral load test is important - it simply verifies if your viral load (VL) is detectable or UN-detectable. 

Like Lamassu, I too would like some clarification on what you described as a brain mass?!

How long do you think you might have had hepc, if you are/were guessing? Months, years, decades - or not a clue? It does not really matter if you have no idea how long, as the the fibroscan (Fscore) Lamassu spoke of might help indicate longer standing hep/fibrosis, and/or, some of your other tests (such as ultrasound imagings) and labs may reveal if the hep condition has likely been longer-standing.

Thanks for sharing what you did, many of us can relate to going through all kinds of hardship, so you will have some understanding company around here.

This is a very nice and kind and helpful place (and people). I recall when i first started reading this forum, the idea of joining a "support" group was, well ... shall i just say politely, that it was a foreign concept to me!, as i slowly entered into conversing with my new group of friends here, i soon realized how wrong i was about using "support" sites - this site (and everyone here) helped me in so many different ways, immeasurably!, and it still helps me to be here - so, we are glad you are here too.

I am just as pleased as punch that you have already sought out a new doc - the pieces WILL start to fall together for you now as you two discuss what needs to be done for your hepc assessment - it's just a matter of time. Keep pullin, you are almost there. Things will be better, I promise, when you have trounced this hepc and it has left the equation. : )  C. 

Hi Shelley,

I'm so glad you found our forum. You are so welcome here. You have been through a few personal battles that tell us all more about what you're made of, than anything else you might believe. You're a survivor and that's what is most important through all of this. We do understand how difficult much of what you described is. I just want you to know, we care and we will do everything in our power to make this journey an educated and compassionate one for you. Nobody can completely understand what it is you've gone through, but we'll darn sure try, if you're willing to let us. None of this is easy and we know that, but together, through personal experience with this virus, we will do our best to make it easier. Please trust me, treatment for HCV is so much easier than it was before. Much of the HCV literature out here on the web, is negative. Either because much of it is way outdated, or people aren't familiar with the latest advancements in care. I shudder when I read some of the stuff out there on how awful treating this disease is. Unfortunately, people that do their own research, often find the oldest and most frightening anecdotes from days gone by. Granted, the old treatments were horrific and were full of side effects. Not so anymore. What used to take a full six months to one year to complete, can now be finished in 8 to 12 weeks. The old treatments had a success rate of 10-30% (on a good day) and now, they are creeping closer and closer to 100%. Average success rates now are 95+% and the 5% that don't, are generally easily explained, non compliance usually or a failure to follow up to confirm the conquest.

The tests I recommended are common and well known in the HCV world. The RNA PCR or as we call it, the Viral Load, is always the first test following a positive HCV antibody test. Your doctor will most certainly know what that is and has to order so your diagnosis is confirmed, one way or another. If you have an active (chronic) infection, the PCR provides proof of that. In the old days, the amount of viral particles (load) used to determine a lot of the groundwork ahead of and during treatment. An extremely high viral load was thought to be indicative of a worse infection. Now we know the virus fluctuates and one time it could be in the millions, and a year later it could be quite low. They followed the viral count and decided, based on numbers, if you were responding, or not. It wasn't very scientific and those numbers were given too much credibility. The new drugs have proven that regardless of the viral load, we are all on a pretty even playing field. Basically, it doesn't matter what it is, the rates of success are the same. It's extremely rare to escape the cure with these new drugs. They are extremely effective and don't impart much in the way of side effects at all. Matter of fact, the most common complaints from treatment are increased fatigue and headaches. Allow me to add, those complaints are mitigated or eliminated simply by drinking extra water. We recommend a gallon of water per day during treatment. If you can follow that simple recommendation, chances are good that you won't experience them. Don't let anything you read about the old days alter your impression of the latest treatments. It's night and day different. I PROMISE!

If you need additional resources, take a look through our Knowledge and Info Section. Concentrate on the dates and while I recommend you read up on how it used to be, read the information from the last few years. It will widen your knowledge and I'm confident will help calm some fear. The most difficult part of this is finding out, dealing with your own questions and doubts, getting the preliminary stuff out of the way and then diving in. Most of that fear and concern is human nature, but allow us to help you understand that it's not at all as bad as you might think. Providing you let us help, that is! We like to think we're pretty good at that! We have a lot of caring people here and we've all been in your shoes at some point in our own journey back to health. You'll see...

Let us know what your doctor has to say and if you're like the rest of us, you'll leave the office with more questions than when you went in. We will absolutely help you make sense of all of it. It's going to be alright!

Hi spacheco,

While your primary care could treat you for Hepatitis C most feel more comfortable referring you to a gastroenterologist. At the minimum your Hep C doc will want to do a complete blood work up with liver enzymes. He or she will have to find out which genotype of Hep C you have and also your viral load. Most specialists also want to do a test called a FibroScan to measure your liver stiffness, which gives a score of F1 to F4 letting the dr know how far along the HCV has progressed. It is not a big deal just like an ultrasound not invasive.

After the test results are in you will talk to the specialist about which HCV drug to take depending on your genotype and insurance. Ask any questions you have anytime here one of us will be glad to help since we have all been through the process. If you really want to read up on Hepatitis C one of the best references I have found is Hepatitis C Online, just go through the course modules.

Hepatitis C affects all systems of your body. I was a physical wreck one year ago before my Hep C was cured and I am amazed at how much better I feel today. Chronic conditions I have like arthritis are all better. I was starting to get brain fog before treatment which has vanished. I am concerned you mentioned a brain mass what is that about?

First of all, l want to thank you for responding to my post. Not only just the response but the actual thought and care and kindness of in which you responded. I am overwhelmed with emotions, I haven't told anyone in my life about my having Hep C,  I am going to be completely honest. I haven't done anything. I've known for over six+ months. I am 55 years old. I had a Thyroidectomy in 2015. My current health conditions also consist of (alphabetically) Anxiety, Bilateral lower extremity edema, Cervicalgia, Complaints of leg weakness, Elevated liver enzymes, Fatigue, Headaches, Hepatitis C virus infection, History of thyroid cancer Left knee pain, Meningioma, Postoperative hypothyroidism, Quadriceps tendonitis, Varicose veins and weight gain. After my surgery I lost all faith in Doctors, Hospitals, and became extremely angry for I truly believe that the Surgery wasn't necessary. I was rushed into the decision by a team of "specialists" and as I looked back at my condition, I could clearly see there were options not made aware to me. I shut down emotionally, Physically, became extremely depressed and brutally honest didn't want to live. I attempted suicide and was very lucky not to have succeeded. I realized real quick I need to fight this battle. So here I am. I started here at this forum to battle one disease at a time. I wasn't expecting much, But the wealth of knowledge you and everyone in here has is priceless. I have an appointment with a new Primary Care Doctor today at 2:00pm. I have to start all over. I'm positive he's going to send me for blood work. Should I specifically ask for the RNA PCR test? I've never heard of it. I do not know anything about this disease. I should be researching it on my own, But I don't understand things very well. I do know that the brain mass is starting to effect my memory, and will be getting referrals to oncologists, endocrinologists..So I see from your response it is crucial to know the results of a PCR test. I'm guessing this plays a role in the treatment? please forgive my ignorance of this disease, I have come to terms with my condition and I am ready to fight it. I cannot Thank You enough. I will be on here very often, So I am blessed to have been accepted by all. Oh and my Puppy's name is Sissy. My friends call her Sissy La La. She is a very spoiled, hates it when I dress her up, but she has given me so much love I can't help spoil her!!

Hi there! 

Hi S.P.

Welcome here from me too, Tig and 5 have offered up some good advice, opinion and thought on your situ. I cannot add much more to what they are already outlining for you.

If you are just starting to gather info, investigate and study all options to get your hepc cured, then this is a good place to look for some info and assistance.

Firstly, (as was mentioned) make sure you have been correctly confirmed as having a "chronic" hepc infection versus just showing that you have hepc antibodies.

We can help you suss lab test results should that be helpful to you, especially (at this moment) the "viral load" lab, which would indicate whether you were chronically infected. 

Sorry you had to have a thyroidectomy - maybe you can fill us in on that thyroid journey/hx a bit, and how you have been and how you are feeling, because of your thyroid hx. How is your current thyroidectomy status going to be problematic in relation to being treated for your hepc exactly?

I think you said you have just recently found out you have hepc but do you think you may have had it for a long time, or a short time? In addition to having a current viral load (VL) confirmed, other labs, such as liver function tests (LFT's) like your ALT's AST's, would also be very useful info. Maybe you have had some LFT labs that go back further in time, like when you had your thyroidectomy 3 years ago. It would be good to know if your LFT's were elevated then (comparatively) to how they may be now, or how they have ever been. It's good to know how ones LFT's are doing now, or anytime, period, but historically and comparatively they are useful info that way as well.

I am glad you are here sleuthing and looking and asking things, you can also search up words and subjects and questions (using the search function) and find out that there is just a TON of info to be had on this site! Lots of reading material around here - and some nice, knowledgeable/experienced folk here too - who will be happy to offer you assistance/company.

Fire away with questions if you like, we will all try to help with answers. : )  C.  PS - I agree with 5 - your pup is just the cutest little thang!

Hello Shelley,

Welcome to the forum! It’s always a shock to find out you have tested positive for Hep C. It really doesn’t matter how we got it and we often never know. There are many ways to get this disease and only one way to get rid of it, treatment. We have discussed holistic/natural remedies many times here on the forum. You will not rid yourself of the virus using those methods. They can mask symptoms sometimes, but they won’t stop the forward progress and damaging effects this virus causes. The newest all oral medications are effective and easy.

I’m not aware of your thyroidectomy presenting any problems if you decide to seek treatment. You might be surprised to find out how many health problems improve after this nasty virus is destroyed. We have all noticed positive changes as a result of treatment, namely, a halt to the damaging effects this virus has on us in general and specifically on the liver. The longer this disease percolates, more hepatic damage occurs. Fibrosis increases, which leads to decreased function, cirrhosis and the potential for cancer increases.

Can you tell us a little more about where you are in this? What kind of testing have you completed? I’m curious, have you had the RNA PCR test (Viral Load) done? If you have only tested positive for the antibody, you need the PCR test to confirm an active/chronic infection. 20% of us can clear the virus on our own, but we will forever test positive for the antibody, even after we clear the virus. So the antibody test needs to be followed up with further testing. If you have any of those results, feel free to share them. It helps us understand things more clearly. We ask that when you do have the information, to put it in your signature line so we have a handy reference of your results. You can see what we have in ours and there is a link in mine with directions.

We have a bunch of caring, knowledgeable people here and they’ll chime in and welcome you. If you have any questions, feel free to ask. We’re here to help! I’m glad you’re here.