Hi Syd,

Well I am just hoping that this issue will never come up so at this point I am not thinking of it. My B seems resolved so one would think it should never come back but I really don't know based on what I read and was told.

I will not think of that now. My 2nd FS was 33.5 at the hospital before tx but just the same, like yours it's incredibly high. I can only hope that yours and mine regress as time passed but once again the waiting game.

Cheers and take care as well.

SF

SF, Tig, Canuck - you are all too smart for me to follow much. 

I know my pre treatment fibroscan was 48 and am having another one soon. I just out it in the very stuffed up basket as it is what it is.

i spoke to my son in law who's a pharmacist about the possible recurrence of Hep B if you were to need immuno suppressants and he said treating physicians make allowances for that. He mentioned one of his customers who needed immuno suppressants for a skin disease but had already had TB years earlier. The doctors still gave him the immuno suppressants but with a low level treatment to guard against the possibility of the return of the TB.

hope that helps a bit,

take care,

Syd

Hi Canuck,

Yes, I am F4 and my previous fibroscan was 47.5 so it's clear that it's just like real estate ... Location, Location, Location and of course the unit and technicians ability to read it so I understand.

Yes regarding the B, the HBsAG- and HBcAB+ indicates exactly that. I am not currently infected and have antibodies. That being said there are factors that could reactivate my HBV if curing the C does not. Having to take an immune suppressant if I should develop cancer raises that possibility by a huge factor. I was told this and have read this. Fingers crossed that I will never have to cross that path.

SF 

Good digging tig, re: IQR, and SF, re: cccDNA.

Couldn't open all of your links tig, as I have to be "registered" but a good read of the other 2 on fibroscan. Interesting to note higher ALT/bilirubin levels (activity) for those showing higher kPa. Does this relate to SF then, being 33.5 kPa, still not F4, but perhaps with higher ALT/bil?     ... ie, "Among patients with fibrosis stage F2, one patient with CHB and another one with CHC had extremely high LSM values (58.2 kPa and 42.2 kPa, respectively). Both of these patients had activity grade 4, high ALT (603 IU/L and 187 IU/L, respectively), and total bilirubin levels of 9.2 mg/dL and 2.7 mg/dL, respectively." ...

In those fibroscan writings, it indicated a 10 point minimum representation is sought. My first scan was 12 points, (loosely, I interpret) it was enough points for an adequate "over-all" averaging (all quadrants/both lobes). Would hit soft and/or sclerosed areas. Should a technician, next pick the most likely (or previously determined hard spot/portion of lobe where it is thought to be most fibrotic/cirrhotic), and do only a 5 point reading in that one spot only, then law of averaging, it could conceivably give you a higher kPa, leading to a higher F designation ... no? Fibroscan tool offers a method of "approximate" estimation of hardness. Just as PCR lab work is qualified by their ability to determine a "limited" estimation of measurement, so too is fibroscan ability limited, thus why the 33.5 kPa result is followed by IQR 6.2?. (Allowances/ roughly variance)? ... no? All scientific mud to me!

SF - to me the cccDNA definition/query simply (ends up) meaning (just like me) you got DNA!, just like me, you also had B once, just like me, they likely see the B core anti-body ... no? More mud for me!

Tig - re: previous comments about why they don't do more frequent VL's for feedback and peace of mind, you said  ...  "I hope the decision makers take a moment to read these forums and realize what they're putting people through." ... OMG!!!, you mean they actually read what we are writing!!!! Had I known I would have said nicer things!

SF - glad to know that come rain, sleet, hail, snow, Fedex still delivers - glad you have received your fresh supply. I do NOT miss Eastern winters. A  stormy good time to be holed up warm and snug deciphering scientific journals.  C.

Thank you kindly Tig,

I have all the pages loaded and have been reading them. I am still having a difficult time grasping exactly what the range indicates other then percentage error? If this is the case and they state IQR 6.2 as opposed to another number I need to find other numbers to try and compare them and find some correlation between them to know. I will keep reading and read these over again as they are clearly written for the professional.

Once again, thank you so much

SF 

Here is some additional information:

http://www.medscape.com/viewarticle/729797

http://210.101.116.28/W_files/kiss8/27404186_pv.pdf

Hi SF,

I found some info on your question regarding the IQR:

"IQR was defined as an index of intrinsic variability of LSM corresponding to the interval of LSM results containing 50% of the valid measurements between the 25th and 75th percentiles."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3282979/

I saw in the other thread that you received your next bottle of meds and expecting some snow, brrrrrrr!! Glad you got the meds and after that headache, maybe today's a good one to just relax. YAHOO!!!!

I now have a little more information regarding my status of HBV although I believe I reiterated correctly before. This is from the doctors report in front of me.

I have detectable HBV DNA < 20 IU/mL but I am HBsAG- and HBcAB+ and my HBV DNA needs to be monitored during treatment of my HCV

From my understanding, it means I am not infected now with HBV and I show antibodies due to a past infection. I am not immune. This where it is as clear as mud. I am not now infected with surface antigen but I have DNA still in my system. I guess they know what they are doing. I have just added this. It say's that I likely have some cccDNA remaining that is causing the low HBV DNA reading.

This is the definition of cccDNA

cccDNA (covalently closed circular DNA) is a special DNA structure that arises during the propagation of some viruses in the cell nucleus and may remain permanently there. It is a double-stranded DNA that originates in a linear form that is ligated by means of DNA ligase to a covalently closed ring.

My Fibroscan was 33.5 Kpa (IQR 6.2) I still have not found a suitable definition of what this second parameter means.

I will continue to google it. When was the last time someone say, Yahoo it :)

It was my doctor who did all the paperwork and everything to get me approved for Harvoni. There was nothing I could do but wait.  For that I am extremely grateful and will always be. The last thing I want to do is start a war with him and possibly lose him. I suppose I will have to call "The boys"

SF,

You're right, as long as the LFT's are dropping, things are usually headed the right direction. That said, it's a wonderful morale boost to see the piece of paper with a big fat ZERO on it (or close). I've seen people get the pre treatment VL and their doctor not ordering another until EOT+12. That's six months or more depending on the course prescribed, where the patient has to wonder. These drugs play games with our minds and these doctors need to get a grasp of what they do. Doubt is a harsh component of treatment. If they want to worry about saving money, they should be getting the manufacturers to make these drugs more affordable or realize that increased VL intervals aren't such a waste. I think a 6 week schedule would be perfect and compared to the cost of treatment and care, 5 viral loads is peanuts IMO. They used to be horribly expensive, now they can be had for $150-300 bucks depending on the lab and location. I hope the decision makers take a moment to read these forums and realize what they're putting people through.

Hi Canuck,

I only know we will do the B every four weeks to ensure it's playing nice. The consensus is that my doctor just feels that doing a C VL makes no difference in the treatment. I agree, where it's down or the same, my course of medication will not change.

For me it is peace of mind that the VL is going down. I just want to see that but it seems it is not going to happen. I will ask again after the results of my first 4wk blood work is in. That being said, if all the regular levels are down, it again is probably fair to say that everything is fine.

* Shakes my head!

SF,

Sorry to hear that they declined to do a VL for you at the 4 week mark! Jeesh why not? Was that their idea, had the "suggested regime" not been spelled out for them by the big comptroller? Was there concensus on this between all of them?

So, what IS supposed to be the "plan" for you, for the frequency of testing your C VL (and testing for B)??

I heard people who get in trials get the L'oreal service?, frequent VL's, why? cause their worth it? We are all worth it. More is better! Canuck

Day 14 ... Two weeks! Where did that go and still for the most part all is well. I am waiting for my lab requisitions that got lost in the mail. They were sent 10 days ago and will be sent again. I will also get the report the Dr. from the hospital sent to my Dr.

I do know that they will be doing a VL on HBV each time, not HVC to closely monitor that. It was the Doctors opinion that it SHOULD not pose a problem but it's important to watch closely. That was read to me today and part of his notes. I will post more once I get them.

I am happy about that... To see his full unedited remarks and advice on how to treat me.

I will also try to get an intermediate C because I want to know but I understand their perspective is no matter what it is, treatment would not stop. I still want to know.

"Stocks?"

... actually stocks are way to rich for my blood ... about the best I can muster is a nice slow and steady, high quality Balanced Fund, I've ridden enough roller-coasters in my life ... thank-you-very-much.

Yes, it takes a while for our bodies/ minds to make sense of and act or react accordingly when we take these drugs.

The one constant I've noticed with these drugs is how inconsistent they appear from a patient standpoint ... I'd even go so far as to call them fickle at times ... in reality the drug are doing their job it's our systems that must adjust ... and adjust they will until the dragon is dead.

Short Live the Dragon!

Hope you feel and keep on feeling better,

Dave

Thank you Dave,

Nothing I could not handle but I had some pain that I had not experienced before. It concerned me but I just though I had some discomfort in the months leading up to my treatment and that worried me and made me feel it urgent I got started. This time my mindset was that I was full of great drugs that are fighting and it's probably all ok.

I searched this forum and elsewhere and saw a post by Malcolm that spoke about the drugs hitting the liver and probably causing a bit of havoc that made me feel a bit better.  Those pains did not come back the next day, only a slight twinge that is fine. I also had some dizziness and a little nausea but it did subside in a few hours. I do hydrate 3 litres a day so keeping the bottled water company in business as well 

Stocks ?

Sorry to hear you were feeling down SF, thoughts are with ya hoping tomorrow will be a Bright Shiny Day!

Oh No ... I bought Royale Energy instead of Royale Tissue by mistake and energy stocks are tanking. 

Dave --> "... I'm buying stock in Royale as we speak ..."  Wise decision

Thank you everybody! I always appreciate your support.

It's day 10 today and the day after my last post was not so great but I feel better now and moving forward. We are all on a mission. 74 more to go but who's counting?

Dave --> "... I'm buying stock in Royale as we speak ..." Wise decision

T minus 11.

From Houston JimmyK

... oh, Duh Dave ...

CONGRATS on 1 down working on 2, SF!

Glad to hear the sides are being relatively easy on ya ... all good news!

Onward!

Dave

Hi SF,

Glad to hear you're heading into week 2 without much in the way of sfx. That's the goal anyway! Concentrate on one thing at a time. You're on your way to finishing off one Dragon and we're going to count on the other one to stay asleep! Keep doing what you're doing and hydrate! 

"I keep the tissue company, Royale in particular in business. " 

... I'm buying stock in Royale as we speak ...

... Probably a good thing not taking any more meds than you absolutely need, so many doctors today just become puppets of the "Drug Machine" and throw some pills at us as we are herded through the turnstiles and out the door not unlike cattle.

I feel very fortunate to have a very good PCP, she once told me she abhors how the big drug companies try to get her to push their drugs, she will certainly use those drugs if warranted but looks for natural solutions for long range improvements in health where possible. She's a pragmatist and holistic in her approach to medicine but no puppet, I assure you.

I'm pretty sensitive to meds too, especially initially, I certainly take more daily than I used to and more than I'd like but have the doc re-evaluate quite often. Hopefully once the virus is dead and gone my system will take care of some things better and I can perhaps not need to take some meds any more (I'm thinking allergies in particular but, in just in general as well).

Well today is one week, pill 7! Honestly so far I have to say that it has not been the least bit harsh on me. I was expecting much worse and still understand tomorrow can bring a whole new set of side effects that I have not had yet. I am just glad to be on this taking care of business.

I have been sleeping a bit better the last few nights Gracie, but again, I have not slept well for nearly 20 years and never attributed it to HVC that I now understand could have been the cause. We shall see. Sadly, I will stay in bed when I wake because getting up will only make me feel much worse. I just lie quiet and rest instead of trying to do something in a Zombie state.

I cannot help but wonder what is really going on inside of me especially because of the HBV that hopefully will not become an issue. I don't dwell on it.

Dave, I won't take anything for sleep. I am sensitive to medications and because of that pleased as punch that taking a drug with the magnitude of Harvoni did not flatten me. I won't even take an allergy pill because I get side effects so I keep the tissue company, Royale in particular in business.

I had my days counted as well... Lol... And when I'd take my pill I'd have to figure out in my head how many I had left. Way too type a for my own good for some things. 

Sleep did come hard for me for a couple of years. Luckily that has now passed, although it does happen from time to time. I get up and read, or watch tv. If I lay there, I just flop around, and since I've had my frozen shoulder (which is getting better finally after a year), flopping around hurt. It's one of the most annoying things I've had to deal with. Hope your zzzzz time improves. Just letting you know that mine did so there is hope.

Cool, week one will be out of the way before ya know it ... I HAVE been surprised how rapidly the days roll by. Of course I'm going to have to slam on the brakes once I hit SVR ... I'll be doin' a lot of that "carpe diem" stuff, I have no doubt. Who's counting is right ... not me ... I say as I calculate my days left. 

I have issues with the sleep part too, but I had that long before I started Tx. What works the best for me is a 25mg benedryl but sometimes that doesn't even make a dent in it. Those are the nights I drink some chamomile tea then take a valarian root capsule then pace around then the sun comes up.  

Have a good one,

Dave

Fast forward to day five. Day 4 was, well as I was saying Day five

It was a good day today and so far I am not experiencing anything really bothersome at all. I am waiting for the other shoe to drop however and hope it doesn't. Time will tell.  Eating well, hydrating well, sleeping umm... well "two out of three ain't bad"!  Two more days and I will be one week. The time does go by fast and after all there are only 79 days left but who is counting

I finally got some of my blood work numbers from my NP. This was after having to call my doctor on Monday and tell them, Hey, The hospital took the latest blood work and did not bother to send you a copy? Gee, How will we ever know if the numbers start to rise indicating a HBV problem that needs to be treated stat unless of course they just drop down low and of course, that is what I need. My AST and ALT have been elevated for 45 years and always up and down a bit as well as all my other liver function tests.

The squeeky wheel does get the oil. I will be sent a hard copy of those tests along with Lab requisitions, 4 for now. Week 4,8,12 and 16. They will of course do the EOT but these first.

Having said that, I can always go to my family physician and he would do my tests for me if I decided I wanted them even though my specialist is copied. I really do not care. This is my life and I will do my part to ensure I have what I need. I may even ask him to do a VL since I have been told, they will not do that at week 4 because it changes nothing. Well, yes it does... It changes my outlook and peace of mind.

*** You may have noticed I like the bold and am not YELLING ... Now, where are those colors hiding?  Ah ha  

Using the drugs as an excuse ...

Hi SF,

Sounds like a typical first day. The first couple of weeks will take some getting used to, but everything should level out after your body adjusts to the battle going on inside it. Tylenol, rest and lots of water will provide the best defense for the side effects. Sticking with it and a strong, positive approach is going to get you through! One day at a time.....

Hi SF, the headaches seem to be somewhat common when starting on the Harvoni.  I had them at the beginning of tx, but they became less frequent as time passed.  Glad you're getting started, each day is one closer to SVR.

On day 2 now but will recount yesterday:

DAY 1 - A bit tired and dull headache but I cannot attribute it all to Harvoni since I did not sleep well the night before. I did not take anything for the headache as it was easily tolerated. I was up since 3am prior to it. I don't sleep well as a rule but that was worse.

I drank 2.4 litres of water and another 500 that was a morning coffee and a cup of tea.  I ate normally and went for a short walk to get some exercise and fresh air. I was up most of the night. All in all it was a good day regarding my first dose. I am writing this 90 minutes after my 2nd this morning.

That's my story and I am sticking to it!

SF,

Good on you for getting this train moving!! It won't be long and the train will be steadily rocking down those tracks. You're in a great place for support and encouragement. We are all here to help and of course will be first in line for a piece of your celebration cake!! I would like to request a black cherry/german chocolate, using a pudding cake recipe. You plan the party and we'll bring the feast, cause it's gonna happen!! Good luck! 

Kind of a relief being done with all those initial waiting periods and be on your way to (as you said) Slay a Dragon.

I'm glad you got started on the meds ... you'll be surprised how quickly the time goes by ... before ya know it we'll both be living in a Dragon Free World.

Congrats,

Dave

Thank you. I have a few other meds I take and do have those containers.

On a separate positive note, I took my first pill 15 minutes ago at 9AM. On the train finally and nervous about how I will feel soon. Thank you all.

p.s. I did not hold it, stare at it, think about it. I said lets go to war and swallowed it. Not like me at all but I have a dragon to slay.

Shadowfax wrote:

---

I am very nervous of drugs because of some past history

---

 

Shadowfax wrote:

---

 I am naturally nervous regarding medications but I know I need to do this and of course will. 

---

 

Linuxter wrote:

---

I set my alarm every evening so I'll not miss my morning dose, forgot once so far and was lucky to only be 45 minutes late (not a problem).

---

 That's a good idea. I have 2 alarm clocks, 1 beside my bed set to wake up, and another in my kitchen for 30 minutes later (I always wake up hungry and eat breakfast soon after waking up) to remind me to take my medicine. I use the alarm on my phone too for noon and night meds

 Also SF, based on the 2 statements of yours that I quoted, if you don't take other meds, then you might not have a pill organizer box. If not it could be useful for you in order to make sure whether you took your Harvoni or not if you forget or get confused. They have them made according to how often, times per day ect. fits your medication schedule. Attached are some different ones which are available at any pharmacy or Walmart etc.

-- Edited by wmlj1960 on Tuesday 9th of February 2016 05:32:29 AM

I went to bed early the night before taking my first dose ... just didn't feel like thinkin' about it and kind of wanted to get started ASAP.

I set my alarm every evening so I'll not miss my morning dose, forgot once so far and was lucky to only be 45 minutes late (not a problem).

I figure if I'm within an hour, I'm compliant ... don't want any part of not being compliant.

Wishin' ya luck and it'll be fine, not to worry.

Dave

Thank you Dave and Jimmy

I appreciate all the feedback and thoughts I get. I will keep this updated.  I am naturally nervous regarding medications but I know I need to do this and of course will. 

I sort of do think an Oreo Blizzard Smoothie would go well. I have a sweet tooth normally so that won`t change. (I hope)

Hoping for a smooth ride with not too many side effects to worry about or at least be able to tolerate and understand them well. I have read my fair share and that won`t stop. Lets see what tomorrow brings then it`s one day at a time.

Cheers

Hey Oh SF,

ALRIGHT!!! That's wonderful news!! I'm very glad for ya SF!

You'll do just fine, you've done your homework and got your ticket, all you've got to do is step on the train ... remember there's a seat there with your name on it.

It's natural to be nervous, goodness knows I was ... but all that worry is only a fear of the unknown, it's going to be a nice smooth ride straight to SVR, I promise. You've got this ... All Abord!!

Just "let that lonesome whistle blow my (Your) blues away...." - Johnny Cash

WOOT! WOOT! WOOO-WOOOOOT!

Dave

Greetings friend,

Make no mistake, we are all nervous without exception. This is where Family comes in and comes together.

You are in my prayers, and yes, HE Listens.

JimmyK

My Harvoni arrived today! The first bottle of three containing 28 pills. I will get on the train tomorrow morning so slide aside and remember, I am bringing snacks.

I called my doctor asking for the blood work that they took at the hospital. They did not have it but only the report. I said, that makes no sense since they were not going to see me again, why would thy not forward it to you. I said please call and ask for it. I want a copy because my doctors blood work is at least 6 months old. I will get that if nothing else I suppose since my levels have been up for 45 years anyway.  

** I am nervous. 

 BEFORE:                  AFTER:

Great news SF! You're going to slay another fire breathin Dragon! They're droppin like flies......

You're on your way!

Awesome!!! Monday it is. I've got my seat ready to watch this dragon get 'beat down'. Onward to SVR.

Thank you all for your support.

The pharmacy called me today. My Tx will be here on Monday! I am full of mixed emotions right now but they will all lead to getting rid of this dragon.  This beats the alternative no matter how we look at it.

Cheers

Alright SF!,

YAAAAAAHOOOOO!Thats Great News!Glad to hear it, I remember well what a relief it is getting the news that Tx is about to begin.

It's all good, we're all very happy for ya ... I know it's been a bit of a wait but now you've got your ticket!

Your seat is still reserved and waiting for ya.

Thanks for the Great news!

Dave

Great news, SF, and very reassuring that you`ll be having such regular monitoring.  There`s a seat being saved for you.  Especially if you`re bringing snacks!  Lol

That's a good deal! Blood work every 4 weeks will give you piece of mind and as far as the HCV VL, 12 wks post EOT is the only one that really counts anyway. The HBV will likely stay dormant. The train has an empty seat waiting on you so let us know when you are ready to jump on board.

I was called this morning by my NP. All the paper work is now in to move the dates to the momentum program who facilitates the dispersion of Harvoni and helps with deductibles when required.

It's a green light and I am told, I should be hearing from them possibly as soon as today. Fingers crossed that I will be getting my first shipment the beginning of next week. I am excited and anxious as can be but I will be on that train within a few days it seems. 

They will do blood work every four weeks to monitor levels and watch by my tests if the HBV should rear it's ugly head but I was told they will not do a VL test until the end of the 12 weeks because of cost and regardless of the outcome the treatment will go on. I did say, it's peace of mind for me and I will push for it but it's not the protocol used here.

Keep the seat ready fro me! I'll bring snacks!

Thank you Dave,

I read about this on your other post as well. For me it would be the additive effect but yes, we do need some iron of course but I do need to watch mine. It seems I carry one gene of hemochromatosis. It is hereditary but it is still unknown if that is why I store Iron or the HVC is the reason. In any event the way to get rid of it is through therapeutic  phlebotomies at the hospital. They will test your levels again anywhere from a few days to a few weeks. In my case, I got mine every month until my levels were fine and all other "Good Stuff" was not being depleted.

This method is safe and will rid you of the Iron your body and liver stores. The only Iron it cannot remove is any that accumulates in the brain. My levels have never been crazy as I have seen in others but we just need to keep them that way.

I will still have the Kale and Meat etc but I just need to be aware of what I am eating with respect to that.

On a positive note, Ice cream has no Iron

Just for the record, 2 cups of Kale (chopped) = 2.0mg Iron ... so more than a lot of other things but way less than any supplement.

My Doc said I had nothing to worry about regarding Iron from foods ... Iron from supplements is another story, however.

(Regarding Iron absorption/ accumulation during Riba Tx ... but may apply to you as well, you mentioned you need to be careful about too much Iron)

Dave

Good morning.

Thank you Dave, that is a huge list. I appreciate you taking the time to search and post it.

I hope you have another great feel good day!

Hi SF,

Here's a link to foods low in Iron, not sure how helpful it will be but might be worth checking out.

Dave