Hep C Discussion Forum

Walking out of a bistro, September 2017. 

Outstanding!! You have got the beast by the tail and it’s running scared now. You keep up what you’ve got going, it’s working for you! Drink that water and maintain the same course. By summertime you’re going to done and this will be a memory for your journal. A very positive entry into that journal!  

I‘m thrilled that you’re doing so well and have achieved your undetected VL so early. That kind of news is worthy of a celebration! I think it’s time to set up the party barge for the next SVR Cruise. Where are we going? 

Thanks, Observer - yes, it's an amazing time. I shudder to think of what Hep C patients had to go through not too long ago. With the pegs and almost a year's worth of treatment. 

Thanks, I hear you, lamassu. I wanted it done at the 4 week mark and she didn't resist but said the drugs are so powerful that they don't even do the test until after week 12. There was sort of a smiling shaking of the head, like you SO don't need to do this. But I KNOW  that if these doctors had been diagnosed, they would want to know at Week 4. Ah, thanks for the quick lesson on the acronyms. 

Well, that was a fast turn around! Blood draw Tues afternoon and your UND result back by Friday! Good news should travel fast! : ) .

And a fast turn around in that VL too, (did you hear that screech sound?) that was a full stop, both feet slamming on the brakes, going from 3 million plus to ZERO flat!

Good going - these new DAA's are wonderful that way, so many of us doing exactly what you did ... stupendously "crashing" our VL's, often at the 4 week mark. Epclusa is great stuff.

It's always such a nice relief to see the early labs. I'm glad you decided to go ahead and request the week 4 labs from your doc. Improved labs show you the drugs are working. Happy week 4 girl. It's a done deal. 

We can see what your prior bloods/ALT/AST were, but did they do any LFT's or other bloods with this draw as well (aside from the VL)? 

I knew a lady who re-created a select assortment of her rings and morphed them into a totally new ring for herself, with the help of a jeweller. Maybe with your new found good news you might just turn those rings around into an added, new beautiful thing to mark the inclusion of this happy occasion that you are going through! Food for thought. Who says you can't celebrate your cure with a little bling!

So, you still have to nurse your injured hand, but how does the rest of you feel? After you got home, did you feel the skiing exercise in your body, or other bodily complaints from doing the stair mogals? Were you tired at all from your ski vacation?

Good labs have a way of making many things more tolerable!  ; )  C.

Hi tanner.

Glad you are doing so well! SVR12 = Sustained Viral Response (virus not detected) at end of treatment (EOT) plus twelve weeks. SVR24 used to be the gold standard but with the new DAAs most hep c docs consider SVR12 a cure. I bugged my doc to do a viral load at 24 weeks because I had a hard time believing the SVR12 was all I needed. He laughed and wrote the lab order but told me I would be undetected:) You got this, Genotype 2 is the easiest variant to cure with Epclusa no worries.

Oh boy Tanner!!!  

As Tig points out, this is what we're looking for, and I'm thrilled to hear about it.  Yes, just continue until done as a means of HCV birth control.

Wow, this will be over in no time.  New liver, new ring, new season looking good.

You should be thrilled! You can absolutely be undetected at this point of treatment and should know, it happens routinely. There are many that don’t test negative until further into treatment, but witnessing an early response like this is a sign of good things to come, namely SVR12. What a great Friday blessing! Congratulations on your early response. Your doctor is right, finish ALL of the medication. It takes the full course of medication to assure everything is mopped up and clean. 

RNA is “Ribonucleic Acid”, it partners with DNA. This medication breaks the DNA chain and prevents the HCV virus from replicating. It essentially neuters the virus. I’ll include a description of RNA, HERE. PCR is the name of the test used to determine the viral count. It stands for “Polymerase Chain Reaction”.

Canuck, I got the lab work done on Tuesday afternoon. Waiting for results now. Thanks for all your good wishes and encouragement. The swelling has gone way down; the ring finger is still pretty puffy. I wouldn't be able to put a ring on yet except for a cigar band maybe.  A big fat cigar.

The weird thing about the skiing is before we went, I kept imagining myself doing okay. I guess I forgot about gravity.  

Okay, let’s just write that up to an honest mistake. I’m glad you got it all straightened out. I think a business (lab services) that came to you would be incredibly helpful. I should’ve thought about that 30 years ago! Slow on the draw, I guess... 

Let us know, when you know!

Hi Tig,

Yes, I was tested for Hep B. Negative. This was a mistake on the order. The doc apologized profusely. I'll just go do it tomorrow. But of course I'm calling first again. And yeah, I can tell you are a seasoned lab subject. 

UNREAL!!  I mean, I guess it’s not the end all of mistakes, but that kind of crap really pizzes me off. It’s such an anticipated event and then you find out, at the 11th hour, that somebody made an error?!? Really? I’ve been through it and it always straightens out, but my thought is, who twisted my road in the first place? Can you tell I’m a seasoned lab test subject?

These viral load tests are the determining factor through all of this. Like any disease process, the test we all want and need to see, is the one that gives us truth. I’m confident that yours are going to be stellar. I’m sorry you have to deal with delays, but they’re no fault of your own. 

I didn’t look back into your history, but the Hep B test is required protocol. If you haven’t had that checked and your level of immunity to it, then the order for it, is probably legit. If you covered this before, forgive me for repeating it. When I’m using this phone, it’s more difficult to review previous posts. That and I can barely see this thing! Ha, ha!

We’ll be waiting for some news!

I'm pretty impressed you got those ski lessons and skiing in Tanner! I am not so sure I would have been that brave/adventuresome, and I do not even have any known left or right sided deficits. I did not do a dang thing while on treatment, I just didn't feel up to it, I just treated myself as good as i could, slept, watered, fed myself as good as I could, minimal exercise happened - that was about the best I could do - I even stopped driving long distances as I just couldn't seem to handle it. Nice I had a chauffeur for just about every trek to the specialist. Real shame about the tumble, hand and rings! On the other hand (no pun intended) you all shared time together in what was likely a beautiful snowy place and you skied! I am afraid to imagine me skiing tomorrow, knowing how I would tend to crash at every turn, pick myself up and head off in the next tac direction, only to crash down the whole of the hill mostly in this zigzag accident fashion - I  burnt a lot of calories that way, picking myself up all the time to change direction! 

I hope the sprained hand is not the same side as your old fracture? How does the hand feel right now? Did they xray it?

Happy 4 week bloodletting tomorrow! : )  C.

Dang it Tanner!  A flight of stairs!?  I've fallen down plenty of ski slopes but not the stairs.  I hope you can get your ring repaired, but as you say, it's the health you care about most. 

Well, more rest for you.  Keep up the wonderful attitude.  I have no doubt your blood work will be uplifting.

Hi Canuck, I am okay with re-learning how to ski but it's not something I would do, if not for my family wanting me to try again. It's a good opportunity to spend time with our son and his family. If it were up to me, I'd say let's go where it's warm! I learned in high school (50 years ago!) and skiied then and in college. It was fun because of my brother and I learning together.  Back then, I could keep up with him on a red or occasional black. He went on to race (downhill, GS, slalom). Not me. It will be all green for me with maybe a blue but I won't be pushing it. I'm surprised you had no poles until you were on the green runs. Snowboarders don't use them at all. 

Oh, the wrist was excruciating because they had to re-set the bone. You know how you have to clench your teeth so that you don't start screaming. 

Exercise: I row and jog and use small arm weights but I'm ready to go to a personal trainer. I love dead lifts. Anyway, I can't stand not exercising. The way it clears your mind, the way it makes your body feel tired, the way it helps you sleep. 

I messaged my doc and asked for an order for blood work at week at the end of week 4. Btw, I started 2/9; I'll be home on 3/7. I'll get it done 3/9. (My lab is open on Saturdays.)

Thanks, 5-1. I'm grateful to be going. 

have fun in wyoming tanner; i'm so glad you are up to it 

Ha, ha! Yes, it’s a work in progress. I think it needs refining. I used to post different fuzzy photos in years past. Just goofing around more than anything! 

(Looks like me on Ribavirin!)

Hi, I'll try to respond to all 4 of the most recent posts in one post. Sorry it's so long. 

Observer - thanks! I do treasure her. I feel very blessed that I was able to be with her through this tough time. And I see the value of anecdotal experience. My husband wasn't questioning anyone's experiences; just wondering why so much water. And my doc - she just feels there's no hard and fast rule; just drink lots of water.

Thanks to you, too, 5-1 and Cheddy. Like I said, I feel good with the amount I'm drinking. Other than a little spaciness or fogginess here and there, no other side affects. Not headache (except initially) and no extreme fatigue, just what I normally feel.

I have had fatigue and lethargy, lack of motivation (and possibly even mild depression) for 10 years which I have always attributed to the anti-seizure meds. I'm very curious, as I already mentioned, to see if that fatigue is gone once the HCV is gone. Maybe the HCV has been the cause and not the anti-seizure meds. But I will be very surprised if that's the case. The anti-seizure meds are very powerful; Lamictal and Keppra every day, and then Clonazepan only for auras. Had an aura in FL; thankfully 2 of the Clonazepan did the trick. (Sometimes I've had to take 4 to stop the seizure, which is a literal overdose. I sleep for at least 6 hours afterward.) All of these drugs literally suppress brain activity and the normal firing of nerve cells. So you can see why I think my fatigue for a decade has been the result of those drugs...a constant sedation, so to speak. And Lamictal is also administered to patients with bipolar disease. So I'll wait and see.

The reason this is a question I have is because so many of you have expressed how sick you felt over many years. I just don't get it. I never felt sick, unless you count the fatigue. The only time in 10 years I have felt really great is when I joined Crossfit. The exercise, conditioning, strengthening, etc. did wonders for me - increased energy, increased motivation, etc.  We all know how exercise positively affects the brain and mood. But as I said in my bio, I was injured too many times in Crossfit because of leftover deficits on my left side. I had to stop that kind of workout. And that alone "depresses" me. 

5-1, you asked about Wyoming. My husband and I, our son and daughter-in-law and our granddaughter are going to Jackson Hole/Grand Targhee for a week. I missed the ski trip last year because of a broken wrist (from Crossfit). Last year would have been my first time skiing in decades before the AVM. So I'm a bit nervous. I'll be taking it very slowly to be aware of my balance and coordination at all times. 

And Cheddy - fatigue in winter... lack of sunshine? Or too little physical activity? 

Canuck - I asked my doc about a viral load test before end of treatment, because she had told me tests would be the last day of treatment and 3 months later. She said she didn't think it was necessary in the middle of treatment because of Epclusa being so effective, but that if I wanted a test done, she would order it. Aughghgh! I'm frustrated with so many different opinions. 

Once again, I can't tell you all how much I appreciate everyone's wisdom and experience and support here. There is a facebook Hep C community. Started reading through it and it was all such a jumble and felt a bit disconnected. I only made one post to a woman who was struggling with vertigo by sharing the Epley maneuver. Ironic, huh? After just having been with my mom whose vertigo attack landed her in that hospital in Naples. 

Have a great weekend!    

Regarding sof and vel, and absorption - it was within this older thread you were posting in before  1/15/19 Day 1 begins tomorrow EPCLUSA Journey  , where we first started to delve into water intake, and where we started to get into the why's for a moderate fat content meal, stomache ph info, and the monograph insert Epclusa Monograph  which helps explain things about absorption and blood levels, and which systems bear the brunt in dealing with excretion. It is too simple an explanation to say it is just a matter of whether something is water or fat soluble. You have already twigged onto the timing of your water intake to maximize volume in, without drowning yourself at pilltime, and creating the most convenient time for the required output! 88oz. is not too bad, that's about 2/3rds of a gal (getting near to 3/4 of a gal, which would be about 96 oz). If your 88 oz of water per day is on top of other fluids and watery things you are consuming everyday- you may be getting a fair bit closer to a 3/4 of a gal into you. You would have to try to judge how much "other" fluids you might be consuming aside from the 88 oz of water.

I had been a terrible water drinker all my life (I was always a slow learner) but, I became more acutely aware of my need for extra water during treatment, I coulda/shoulda/wished I had done better with water while ON treatment, but the lesson is still paying off for me now - i drink more water nowadays than i have all my life! 

We had one gal here with a complicated scenario, and she had kidney issues (actually, we have a several here who went through treatment with kidney issues) where she was (due to her particular medical status) NOT allowed to push water on herself. 

I do not know how long you plan to stay on Wyoming time - but changing the time over in the 15 min increments you suggested of course would work (to make up for the 2 hour time dif), but it will take you about 8 days to achieve the time change over - something to consider if your stay is short? You could ask your doc what he/she suggests as far as how quickly you may complete the 2 hour time change over. 

Glad you are home and hope you are getting caught up on some rest. Will you be getting a trip to the doc and a lab blood draw for VL and LFT's at week 4? C. 

good to hear from you,  tanner ; and that you made it thru the hurdle of being the caretaker

whatcha doing in wyoming? i hope it's fun. is there a lot of snow?

good idea to find what works for you re: the water, yea i'm sure the size of a person matters too.

and also , great idea to adjust your time. i had to do that and it all worked out since i did it carefully with the pharmacy's advice.

the good news is, these pills work so i'm glad you are focused on taking it at the right time and way

see you here next time

I think it is just the "routine" of taking the dose at the same time everyday that is important, as (1) it is a sure way to help us to NEVER forget a dose, and (2) helps us to never be late with a dose - it is always best to keep the blood levels of drugs at their most consistent predictable maximal peak levels and to try not to allow blood levels to drop below what was intended in the daily up and down cycle.

I was in a trial, carefully guided by Gilead, my administrators of the drugs were very careful to make sure I took my meds at the same time everyday, they forgave one hour (only if it was unavoidable). If i normally took my dose at noon, but for some reason i could not take the dose until 1 pm, then they were quite ok with that, but generally, everyday, they wished me to take the dose at the same time everyday.

There are details in the insert about peak blood levels of the drugs and when those happen. Also, if you read all of the details in the insert about how the sof and the vel are metabolised, and excreted, and the kidneys doing the lions share with the sof, the gi/liver doing the lions share of dealing with vel, your ample water intake will only help you in excretion of the metabolized sof. Kidneys appreciate dilute ample fluid flushing through when taking many meds. Water is so basic to carrying systemic drugs via every cell to every crevice of our bodies. As we have mentioned before, ample water intake can be done over a 24 hour period. Not over-drowning yourself just at pilltime. Tig is right about 'experience" counts - in my case of experience, as hard as it was for me to believe, i learned the hard way that i could prevent and minimize some of my drugs sides, just with ample water intake alone, ample water intake alone helped fend off and prevent/minimize feeling yuck and headaches and constipation to name a few.

Everyone is different, we all come to these DAA's at different ages and states of health, some of us with a lovely set of kidneys, other not. A moderate increase in your water intake would not be an outrageous event to practise (for anyone actually, on a new systemic drug therapy), the dif between the 1/2 gal (you are already drinking) to increase it by a couple litres to be near 1 gal per day is not that great - it is very hard to harm yourself by drinking this extra 2 litres of water per day. But if your doc forbids you to increase your water intake by 2 litres per day, he may have some (unknown to us) specific health reason for you not to do so - so, you have to go by what he dictates. If there is no health reason why you cannot increase your water intake then, you could go by feel i guess, that didn't work for me, I needed to be on an increased amount of water the whole time - i often did not get it in and i tell ya, I felt it!  

Goodness, there is much on your plate, and lots of travelling too! Hope you can catch up on some rest and concentrating on you. C.

Hi everyone, I missed you! Got home Wednesday night from Naples after 8 days of caring for my mom. From hospital to skilled nursing facility (for rehab) to home. I know you all said take the time to relax and rest and that was not possible. It was a tough week. 

I'm sorry I missed all the goings-on. How is everyone? Any good news to share? I did see STL's good news but now cannot find the thread. I think I rejoiced with all of you, but the last week is a jumble. 

For you experts: my husband asked where is the data and science behind drinking so much water? I googled and found a large amount of water (8 to 12 8 oz. a day) is sufficient to keep side affects to a minimum. But doesn't require a gallon. Talked to my liver specialist as well. She said 64 oz. was fine. 

I also found out that drinking a lot of water right after taking the pill is not recommended. You want that pill to hang out with your stomach acids to work better. And I found out that you don't need to be so legalistic about the exact minute you take it every day. If you take it in the morning, keep taking it in the morning.

However, this last point is important to me because in a week I am going out to Wyoming (Mountain time compared to Eastern time), which is a 2 hour difference. I have started to take the pill a bit later by 15 minutes each day so that by the time I get there, I will be taking it at 8 AM local time, which is 10 AM here. Then I'll likely start working it back to Eastern time when I return. 

If anyone wants to jump in and comment on the conflicting info around these 3 issues, I'd be really grateful.