Hep C Discussion Forum

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

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.

Here is some additional information:

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

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

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 :)

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.

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

"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

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

T minus 11.

From Houston JimmyK

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! 

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.

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

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, 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.

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! 

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.

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

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

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. 

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

You're on your way!

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

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

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!

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