Hep C Discussion Forum

bubble · Senior Member

RE: All Aboard for the "Viekira Pak" Treatment Train: Enjoy the Ride for 12 or 24 weeks!

bubble · Senior Member

Nice to see you back Lone Wolf. Congrats! My feelings the same on Vikera-Pac. I was a mere 225K. I spent 8 years before with Chinese Homeopathy. The second time I was UND start to finish. My 24 month is in March. Peace.

wmlj1960 · Moderator

That's excellent news Greg!!! SVR-26 IN CONCRETE it is. What to do now? I suggest #1 a BIG celebration of your Hep C free life with no more dragon on your back. You are no newbie around here. You are a seasoned dragon killing warrior. Congratulations!!!

lonewolf · Member

Undetected once again at 26 wks. I was und at 26 days and now at 26 weeks. I think Viekira Pak is every bit as good as Harvoni if not better. And my SOT VL was 21.8 million which is why my Dr. opted for Viekira Pak. I do believe this virus is history for me. But what do I know? I'm a newbie.

Cherripie · Member

This is great to hear. I never in a million years thought this would be possible. You said the time would fly by quickly and I cannot believe this week marks the half way point ... you were right!!

very, very happy!

Tig · Admin

Hi Cherri,

Yes, we see that reference a lot. Tests are usually listed as a quantity (IU/ml) versus the Log number which is what 1.08 is. The Log format is an older way of listing viral quantity and response to treatment. Labs often use both. There are calculators that take the viral quantity (IU/ml) and convert it to a Log number.

As Jill mentioned below, the LLOQ (lowest level of quantification) on your test was likely <12 IU/ml, which is common. Your test results showed a viral presence (detected), but it's below 12 IU/ml, which is too low to count (quantify). In your case, the nurse referred to the Log equivalent, which was 1.08. It's a confusing way to list the response, so we see them refer to viral quantity as IU (international units) / ml (per milliliter) more often. Many labs still list the Log number as well, which confuses many.

With a viral load below quantification, I have no doubt you will be undetected after your next test. I would bet the farm that you already are. You have good reason to celebrate! This is a wonderful response to treatment. smile

Cherripie · Member

I posed your question regarding the undetected to my doctor.

She just called me and said the following -

The test results stated "less than 1.08 detected - (below level to accurately quantify)"

Have you seen this before? Does this mean good news still?

Sorry for all the questions ... blankstare

Cherri

Cherripie · Member

Too bad on the cherry pie ...

but glad you had a nice Thanksgiving!

wmlj1960 · Moderator

Lookin' good Cherri. Keep doing what you're doing. I hope you had a good Thanksgiving too. I just realized - I ate a little bit of everything except cherry pie. Can't believe I missed that... hmm

Cinnamon Girl · Guru

Hi Cherri, that`s great news!

Your viral load result of 1.08 is the log number, which is another way of giving the viral load. It`s equivalent to 12 IU/mL, which is probably the lower limit of quantification for your viral load test. Does it say `undetected`?

Your liver enzymes are excellent, and have dropped down to within normal levels. The treatment is certainly working very well, very encouraging indeed!! smile

Hope you had a good Thanksgiving!

Cherripie · Member

Hi everyone -

I hope you all had a great Thanksgiving.

I received great news today - my week 4 blood work results indicate HCV is down at 1.08 and my AST is 24 and ALT 23. So happy to hear some good news!! Very encouraging.

Thank you for all of your positive and helpful advice!

Cherri

Cherripie · Member

thank you so much Tig ... excellent information!!

Tig · Admin

Cherri,

There are two different tests that you will hear discussed when testing for HCV. The first test that most of us had the very first time and the test that blood banks and life insurance co's use to screen for HCV, is called the "HCV Antibody Titre". If you have ever been exposed to HCV, you will test positive for the antibody. Even after you successfully complete HCV treatment and achieve SVR, you will still test positive for the antibody. You will test positive for the antibody FOREVER. That does not mean you have an active infection. It just indicates that you were exposed/infected with the virus at some time during your life.

The second test if there is ever a question about whether you have an acute/chronic infection, relapsed or been reinfected, is the RNA Viral Load test. That's the test that determines whether you are detected or undetected, among other information it provides. It counts the actual number of viral particulate in your blood. Once you achieve SVR, you are undetected and should stay that way.

Cherripie · Member

Thank you for clearing up my confusion!! This all makes sense.

One more question ... :) .... If we are clear of the virus will future test results show negative for Hep C or will those tests still show positive? (False/Positive)?

wmlj1960 · Moderator

Cherripie wrote:
I went into this treatment with very dark thoughts of depression and mood swings but I have not experienced any of that so far ...

__________
I do have a few questions that keep popping up in my head about relapse. If test results indicate you are free of Hep C, what causes a relapse? Is it being re-infected? I would think that would be the only way since it's a blood disease, correct? Or, is the virus hiding somewhere and then can reappear later in life? That's a scary thought.

LOL. I think the worst side effect from the treatment is proving, for many, to be the anxiety before the treatment even begins. biggrin

What your blood viral load indicates when it list UND (undetectable) is that the amount of virus in your blood is not enough for the test to detect, which is not necessarily '0'. SVR means that your natural immune system is capable of containing the small amount of virus, if any, still in your body. Relapse is when you immune system cannot sustain it's effectiveness in preventing the virus from replicating past the point of containment by the immune system. So relapse cannot accurately be defined as "reinfection".

EDIT: You type faster than I do Tig

-- Edited by wmlj1960 on Tuesday 17th of November 2015 05:56:59 PM

Tig · Admin

Hi Cherri,

I'm glad that you're doing so well with treatment. Sometimes there is more anxiety generated preparing for treatment than going through it. It's very common to be concerned about side effects and potential reactions, especially when you read so much about the possibility of it happening. Getting started and discovering that it will be manageable is the best proof possible. It sounds like you're doing all the right things, so keep doing what you're doing and maintain that positive attitude!

The risk of relapse after you have achieved SVR12 is less than 1%. Reinfection is possible by exposing yourself to the virus again, but the possibility of you reinfecting yourself by a virus particle hiding somewhere is too remote to even quantify. Since they say there is a <1% chance of it happening, it's theoretically possible, but your immune system would have to have failed and by then you'd have more problems to worry about than the remote possibility of your HCV returning! Once it's gone, it's gone, don't worry about it returning.

Cherripie · Member

Hi everyone -

I am on day 22 of treatment and so far my only issues are with slight headaches and a little tiredness. Otherwise, all is going very well .. better than I ever thought possible. I went into this treatment with very dark thoughts of depression and mood swings but I have not experienced any of that so far ... I am trying very hard to be aware of my mental state and that helps a lot.

I'm very excited to be approaching my 4 week blood test which is on Monday Nov. 23rd.

I do have a few questions that keep popping up in my head about relapse. If test results indicate you are free of Hep C, what causes a relapse? Is it being re-infected? I would think that would be the only way since it's a blood disease, correct? Or, is the virus hiding somewhere and then can reappear later in life? That's a scary thought.

Thanks!!

Cherri

JimmyK · Guru

Shoot no worries about me, this Dragon Slaying stuff is not so bad. To be honest now that I know it is not the 12 cups of coffee I wash the nightly does down that is keeping me up I am fine with it.

You call that funny?

wmlj1960 · Moderator

Hang in there Jimmy. "12 weeks is 12 weeks", not forever. I found that when I focus closely on how much time I have until my next lab test or how much I have left on treatment, the slower the time seems to pass. And all that focusing can also affect my sleep. I try to keep the act of taking my medicine on time the top priority in my life right now, then priority #2 is to live my life and leave the Hep C for the medicine to deal with. Feeling on the "Blaaaa side" is pretty much expected when taking the meds you are taking so your right on time. Try not to worry - you got this!

PS. And if all else fails, Dr Tig will keep your mind busy while the rest of you withers away into the unknown depths of despair... biggrin

Tig56 wrote:
In the meantime, you can now stare at the ceiling and throw mental darts at that Viekira package, instead of the Riba bottle...

You are TOO much Tig!!!

Tig · Admin

I understand the pain Jimmy! I'm still suffering from it years later. Used to sleep whenever I felt like it, those days are a distant memory. I hope that with completion of treatment, the blessing of SVR, and the time to clear those drugs out of your system, you'll return to your normal pattern of sleep. In the meantime, you can now stare at the ceiling and throw mental darts at that Viekira package, instead of the Riba bottle... smile

JimmyK · Guru

Hiya Tig,

Thanks much and you are probably correct. I don't think I will sleep any better knowing it LOL.

No big deal.

Tig · Admin

Hey Jimmy,

Treatment in general can cause you to experience the worst or best sleep you've ever had. I don't think it's the Ribavirin specifically causing your insomnia, but i'm sure it's affecting your overall sleep and comfort. I think more than the Riba, it's likely one of the components of the Viekira Pak that is responsible. It is listed as one of the common side effects of that combo.

JimmyK · Guru

Thanks Bubble. I think I will contact the nurse just in case. She could order it for my lab at my Primary carePsy.

I assume th eRiba is what keeps me awake. Right now 4 hours tops.

bubble · Senior Member

Hey Jimmy, You should have the 4th week done. Then, It is up to your doctor. You should have a 1 day EOT, and then the 12 week EOT. Most people I am reading have had this time table with Vikera/Riba. But you can get one in between if your Doc will write it. I had a test at the 6 to 8 week of treatment. The choice is yours to pursue. You sound as the Riba has not bothered you, and that's great. When you get to 6 to 8 weeks in, everything is or should be routine in what to expect. Before you know it it's over! Me and the wife are planning our May vacation to the islands. Life is good! Keep us posted.

JimmyK · Guru

Greetings,

Now approaching week 4. This Thursday I start in on Box 2 of 3 of the Dragon repellent.

From all I have read I should have had a week two blood draw. Check been there done that and still in the dark. My next draw is scheduled for the 18th and that will be week 5 not 4.

Not sure if it matters and to be honest 12 weeks is 12 weeks and that is a fixed number that will be easy to ensure does not go over, insurance won't be sending beyond the 12 weeks LOL.

So far a bit on the Blaaaa side but that is about it.

Y'all hang in there!

JimmyK

Cherripie · Member

Thank you for the great advice! Flu shot is on the agenda for this weekend!

wmlj1960 · Moderator

I got mine 2 weeks ago. My doctor says for me to only get the dead virus shot, not the nasal. This is because of my HIV compromised immune system but It would make sense to me that if either will work, why not go the safer route - unless of course you are terrified of needles - I'm not.

Tig · Admin

Hi Cherri,

The flu vaccine is safe and an important thing to do. Treatment plays with your body, sometimes leaving you weaker and susceptible to catching a bug easier. They use a dead virus, except for the nasal form, but they are both unable to cause the flu. My opinion is to definitely get that done!

http://www.cdc.gov/flu/protect/vaccine/general.htm

Cherripie · Member

Hi everyone -

Off subject but I have a question about getting the flu shot during treatment. My doctor said it was ok but I'm hoping to see what others have decided / or have experienced with the flu shot.

I typically get one every year and this year I'm apprehensive.

Thanks

Cherri

Penelope PePod · Senior Member

I checked it out on line and it looks great. If only any of my devices were smart. One of these day, I may need to move out of the dark ages!

However - think I've found something for windows 8, and if that doesn't work, I've seen a couple small white noise generators you can buy fairly cheap that are marketed to help babies fall asleep. I'm sure I can find something that night do the trick.

Thanks Bubble and Tig for this possible solution.

Penny

-- Edited by Penelope PePod on Monday 2nd of November 2015 05:20:36 PM

Tig · Admin

If you have a smartphone or tablet, there's an App called "Sleep Pillow" that offers a free sound machine or an upgrade with more sounds. It has saved me some thought laden moments at times, but my insomnia still rules my nights. At least I can concentrate on the sounds of rain or a number of choices instead of the storm of thoughts going through my mind. Check out the app, it works well and doesn't discharge your battery like you would think. It also has a timer that turn it off after awhile if you prefer. There are several of these apps available if you're interested.

Penelope PePod · Senior Member

Thanks, Bubble. Think I'll look into that.

bubble · Senior Member

I puchased a Brookstone sound machine, and let me tell you, it turned off the movie theater in my head.

There not cheap but no need for any drug. It did take awhile to get rid of that train track noise! biggrin

JimmyK · Guru

Greetings Cherrie,

Part of the anxiety stems from the unbelievable fact that there is now a cure. You are going to do great and so am I and everyone else here!

Hang on this is the easy part. LIVING with the condition is the hard part.

Jimmy

Cinnamon Girl · Guru

Hi there, Cherripie!

Great to hear that you`ve got past the initial anxiety now, I thought you would after a few days. Just keep going, you`re doing all the right things!

Happy Halloween weekend to you too!

Cherripie · Member

Hi and happy Friday!

I just wanted to say that I'm on day 5 and am feeling ok so far! I've noticed that I'm not as anxious so I think that was half the battle .. Plus, I've started the treatment in the fall and this is when the weather changes and the skin get's extra dry anyway so I'm just trying to be aware and continue drinking tons of water and moisturizing. I really believe the water is probably the most important thing we can do on this treatment besides staying positive.

Have a great weekend and happy Halloween@

Cherripie · Member

Good evening!

I am on day 2 and already messed up... I switched my ribavirin doses today by accidentally taking the lower dose this morning and the higher dose tonight biggrin

and now I'm feeling very itchy ... Ugh.

Penelope PePod · Senior Member

This perfectly describes my night time buzz, and I've had it forever. Only thing that helps is to play a quiet, soothing DVD and replay it until I fall asleep. That way I can listen to it instead of my thoughts. Crazy, I know. My favorite is one is about Egypt; works every time. But I have to take a break from it once in a while, as my husband can recite it by heart, and he's starting to rebel. smile

Tig · Admin

For me, that buzz, particularly at night, has never gone away. Whether it's the buzz from racing thoughts or the incessant noise in my ears (tinnitus), it exists. There should be a night time playground for Hep C patients going through treatment! Preferably with soothing background noise and enjoyment! Let me know when you find it!

JimmyK · Guru

Greetings Robert,

How would I describe my buzz?

Kind of a slow motion to life. Zoned.

robertsamx · Guru

JimmyK--Glad to see you started. I would think the sleep issue and the buzzed feeling are both from the Riba. I have experienced sleep/buzzed issues on last treatment with riba and also on current treatment with riba. Its hard to lay in bed all night waiting to go to sleep, with all the raceing thoughts from the riba, and that buzzed feeling just adds to the fun. I have explained the buzzed feeling like this, it feels like a ZILLON little microscopic electric motors in you blood system , each one just bairly moving and causing an inward shake that you feel but cant see? How would you describe your Buzz? Thanks RC

-- Edited by robertsamx on Tuesday 27th of October 2015 08:51:34 PM

JimmyK · Guru

Greetings,

Well frankly I have been feeling kind of like I was buzzed. Night time sleep escapes me for what feels like the most part but I am sure it's not. A few aches and pains but so far nothing to complain about. I get to work from home through the treatments and that makes it hard to really gauge how I feel because I spend the day in my "ugly robe". That way I can look in the mirror and say.... "hey at least I don't feel as bad as I look!". wink

Cherripie · Member

So nice to meet you!

how are you feeling at almost 2 weeks?

JimmyK · Guru

Welcome Cherri, I am just a couple of cars ahead of you on the train. Thursday will be two weeks. We are in this together so pleased to meet you.

Jimmy

Cherripie · Member

Hi Everyone!

I was advised to join this Viekira Pak Train ... so here I am blankstare

I'm on day 2 and doing great!! I cannot tell you how much I appreciated the outpouring of positive information that I received from everyone when I joined yesterday - I was so terribly scared when I woke up yesterday and knew this was a BIG day for me!! New beginnings, right?

I was a bit confused on when to take the meds and with what type of food. I do take calcium supps and vitamins and was reading that we should not take them at the same time so I'm taking them an hour apart. And, I have always had a hard time falling asleep but I must say when I went to bed last night I slept like a baby!! I think because I was so relieved to make it through the first day!!

Today, I have a little bit of itchiness but it could be in my head....since I've heard that we don't experience them until 14 days? I think I'm most concerned with losing any work time. I have a great job and have not planned on taking any time off except for the 2 weeks in December that we get every year.

So thank you for listening to me and I'm sure I'll be back here often and THANK YOU for this forum!!

Cherri

Penelope PePod · Senior Member

Yup, we drove all around there - nice area. We had hoped to do some kayaking during the winters, but with the drought, we spent our time exploring instead; Bandera, Boerne, Castroville, The Hill Country, San Antonio. And loved the Brahman and Longhorn Cattle. We only have dairy cows up here.

But back to business, our side effects started to kick in during weeks 2 and 3, then kept changing, just to keep things interesting. I'm still itching. Keep that lotion handy! smile

P.

JimmyK · Guru

Thanks Penny for the kind words.

My wife and I have a place our in Pipe Creek. 5 Acres lil Cabin. Just North of Hondo, Bandera County.

By the way, when are all these side effects supposed to set in? I'm a red head so I already have my order in for a rash. wink

Penelope PePod · Senior Member

Hi Jimmy - Welcome back!

I wasn't sure which one was you until I remembered that all y'all Texas boys wear big brim hats! I love Texas. Hubby and I spent the last two winters at a campground in Hondo, about 45 miles west of San Antonio. Sure beats winters in northern Illinois (go Cubs!). If you ever find yourself in Hondo, be sure to check out Heavy's BBQ! We're actually heading down there next week to wrap up a few things at the campground, and the first thing we're doing is going to Heavy's for a brisket sandwich and sweat tea.

I just finished my 12 with VP/Riba. I'd be lying if I said it was a piece of cake, but overall it was very manageable. I definitely felt worse if I didn't drink enough water, didn't get enough rest, or missed meals. But as long as I paid attention to what my body was telling me, it wasn't too bad. You'll do great! Let us know how it's going for you. Best wishes!

Penny

Penelope PePod · Senior Member

BobFromBoston wrote:
Thanks so much for all the congratulatory messages.
Penelope, have you finished treatment now? Anyone waiting to take their EOT+12 tests, or awaiting results?
Welcome to the forum, Jimmy!

-- Edited by BobFromBoston on Thursday 15th of October 2015 05:47:27 PM

Hey Bob - How you doing? I finished treatment last Sunday, had blood drawn Monday, and waiting to see VL results, which have been taking about two weeks. I'll see the doc on Oct 30, so for sure will know how it went by then.

Penny

JimmyK · Guru

Yes it is nice down South...

See if you can pick me out of the crowd..

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