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Post Info TOPIC: Hi! New here and SO glad I found this board!!


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RE: Hi! New here and SO glad I found this board!!
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(Hope you don't mind me answering your question over here re: PPI's /epclusa and water - I was trying not to use up BB's thread.)

Yep, I bet my bottom dollar your doc and possibly your dispensing phramacy will speak on PPI use with epclusa. If PPI use has not already come up with your other doc, YOU should discuss it thoroughly with your specialist at this end of the month appointment, take a list of all the meds you are currently on and what other things you might "normally" take, including supplements or other over the counter things you might wish to use from time to time, and get them all OK'd first. 

Your hep doc may wish to advise you further on your PPI use while on HCV treatment. Anything you might normally take, or things you rarely take - he might discourage some things, tweek things, recommend certain things instead of .... or, just OK everything as is - but helps to know in advance, just in case you are faced with a simple question one day while on tretament, gee can I take this or that for a cold or headache while I am on HCV treatment.

Your Dexilant is a time-released type (I think), one I am not familiar with, my partner is on a cheap regular version PPI. I do not know if "time-released" ones have anymore bearing on the dosing times with epclusa, or not. Ask your specialist about your Dexilant anyway. Here's a blurb about Dexilant peak blood levels: 

Pharmacokinetics

The dual delayed release formulation of Dexilant capsules results in a dexlansoprazole plasma concentration-time profile with two distinct peaks; the first peak occurs one to two hours after administration, followed by a second peak within four to five hours (see Figure 1). Dexlansoprazole is eliminated with a half-life of approximately one to two hours in healthy subjects and in patients with symptomatic GERD.

So, how long have you been on the Dexilant? How many mg?

Water - I was really and truly surprized how MUCH water made a dif to how good or bad I felt on the HCV drugs, I was not a water drinker either. I sure learned though HOW easy it is to underestimate the true value of water (and how much is required) while on treatment! Weight-based formula may leave you "short". Lets say you weigh 120 lbs, on your weight-based formula, you would then only be ensuring about 7.5 (8 oz) glasses of water per day = 60 oz = less than half a gal!

Many people may find that amount insufficient on a normal day!, never mid being on HCV drugs which require the need to flush them through and out of your body with the help of water.

I weigh about 110ish to 115lbs. My personal experience while on treatment was, I felt more unwell when I let my water intake drop below 3/4 of a gal. I strove for 16 (8 oz) glasses of water per day = 128 oz = 1 gal. It truly helped when i could meet that or close to it.

I am so pleased for you, at least you know, now, that this waiting part is near to the end. It won't be long now, and you will get to defeat this dreadful viral burden and be free of it.  C.

  

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Well hurray Yipeeee and yay too!

That's such a relief for you. 

Im excited to know you'll soon be dragon slaying.

A    

 



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60y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

2.5years...post tx... successful dragon slayer 



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That is great news! wink

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Yaaaaaaaaaaaaaaaay!!!!!!!!biggrin C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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Outstanding!! Get ready to start slaying that fire breathing Dragon. You've got the Epclusa Fire Extinguisher on the way, woohoo!!



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges

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Just got a call from my insurance company and my Epclusa has been approved!  So excited (and nervous!) to get this train started.  Thanks to all of you for your support and encouragement!biggrin



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Ya, RAV's are waaaay over my head too.

Like I say, i think your doc at end of Aug will know exactly how to proceed for you.

More reading over in  About RAV's . C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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WOW Canuck!  Can not thank you enough for all the time and effort you put into this research!  So much of it is waaayyy over my head but I am going to take it apart one paragraph at a time in order to better understand the RAV's I'm dealing with.  I hope once that's completed I'll have a better understanding of what I'm dealing with.  I just can't say enough about this wonderful forum and all the support it gives to those of us dealing with this (fill in your own adjective) disease!  The obvious love and concern that the members express is truly inspiring-and the humor thrown makes it all tolerable!  I am still waiting on my appeal for Epclusa but am so relieved that I'll have this place to come to when I finally start treatment.

Thank you again!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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NS5A RASs which are found to be of significance for treatment choice considerations seem to be in M, Q, L, and Y?

From a "table": (dated July 2016)

M 28 A/G/T

Q 30 D/E/H/G/K/L/R

L 31 F/M/V,

Y 93 C/H/N/S  

... The role of NS5A resistance-associated substitutions (RASs) is emerging. NS5A RASs appear to have impact on treatment response with regimens that include an NS5A inhibitor and this impact occurs primarily with genotype 1a and genotype 3 infections. However, the magnitude of the impact on treatment response varies with the specific combination of direct-acting antivirals. Recommendations on the need for NS5A testing, particularly at baseline prior to exposure to a NS5A inhibitor, will be made for individual regimens where there is sufficient data and it is felt the impact is great enough to be clinically significant and warrant testing. This is a rapidly evolving part of the field and will be updated regularly to reflect new and emerging data ...

I've been trying to scour info that would allow us to compare different regime performances (against your particular RAV/RASs). I am out of my depth. But, I do see  a couple other things of note - re-confirming info such as that they are RAV testing GT1a's more now (pre-treatment) than in the past, and, in general, how people do arrive to their first treatment (treatment-naive) with ready-built-in RAVs, about 10% of us, more or less  (sometimes surprisingly more).

You and I (you as GT1a, and me as a GT3a) are special, when either of us are on Epclusa, and when we have RAV's in the areas L31V and Y93 H/N, this could equate to a reduced ability to glean all the goodness from our 5A drug (vel) in Epclusa -  you said YOUR RAV test did not show either L31V nor Y93 H/N, so, that looks good as far as vel is concerned!

You said the 5A areas they listed for you were: Q30 H/Y and H58 Q. I can only find references to general info such as up to (about) 10%+- of us who are treatment-naïve can come with Q30 Y anyway. Aside from that, more specifically, I only see an association between reduced ability to glean all of the 5A (ledi) in Harvoni when you have Q30 H, and an association between reduced ability to glean all of the 5A (elba) in Zepatier with Q30 Y.  (Which is what is already basically written on your test results as far as I can see - a concern re: ledi/Harvoni and elba/Zep).

 I think it works something like this ... the more RAVs you have that do "double duty" (multiple RAV's) screwing up in one particular area, the worse it is, and, how many of your total virus population that ARE variant is a concern, the proportion - over 10% RAVs in your viral population seems to be more on the significant side. "High-folds" are of importance - they can be as low as, "a few-fold", hundreds of folds, or, can be waay up there in the no-go zone of thousand and thousands-fold.

We don't know to what degree variants exist in proportion to all of your regular virus population (the number of them that have been substituted), maybe not so many, maybe easily overcome, who knows! I say this as many treatment-naive must come to treatment with variants, but they just never know it, haven't been tested, and they are treated with the very drugs they may have resistance to, and yet most are cured! Folks who have failed prior treatments, even with RAV testing, that were showing RAVs in the same areas as the 5A's they were on, have been successfully re-treated on the very same 5A's, just a longer course, effecting the cure. Or, by selecting a different 5A unaffected by your 5A RAV's, or making a "doublet" into a triplet or quadruplet - like adding riba or a 3/4A, or boosters - RAV's are not insurmountable, there are various tactics to easily defeat them.

Your test seems to show only one area for ledi/Harvoni (Q30 H), and one for elba/Zep (Q30Y), and I cannot find anything you own that shows a problem with the 5A in epclusa (vel).

I could not find hardly anything, at all, about your H58 Q! Nothing for "Q", period! but under H58 alone, again ledi is mentioned. So, maybe the listing of a H58 means (perhaps) you do have a "double down" for ledi (maybe twice covered by a H58 + Q30 H)? Under H58, I found nothing about H58 Q (yours), but I did see a reference to a problem between H58 D/P/R and 5A ombi (Viekira). Under Q30, I only found a problem between Q30 E/K/R and 5A ombi (Viekira), but, yours was listed as Q30 H/Y! So what does all that guessing mean? - maybe your RAV's make you better suited to the 5A (vel) found in Epclusa and Vosevi, than to the 5A (ombi) in Veikira?? I don't know.

Really I have no idea about these RAV things,  just reading and thinking out loud, sussing and guessing about things, it's over my head and beyond me, I wish somebody with much better familiarity would wade in here. Not wise for me, who knows nothing, to be poking about in business I have no good grasp of! More an exercise in learning for me, than a help to you. Chances are,  your hep doc is going to know exactly what is best for you and exactly what choices you have and will help you get it, and all of this will just be for killin' time! So many effective drugs out there nowadays.

I'll keep scouring epclusa (and viekira/riba) trials and see if I can scare up something more specific for stats pertaining to how many GT1a's with 5A RAVs like you, who maybe were better cured on epclusa (so perhaps offering an argument against viekira with riba?)? I didn't yet delve into glec/pib (Maviret). Regardless, Veikira IS a regime that has been recommended by your insurance as fitting your parameters, unless shown otherwise.

 

Epclusa

Table 14. SVR12 HCV Infected Patients with or without Cirrhosis (ASTRAL-1)

EPCLUSA 12 Weeks, GT-1a , SVR12 - 98%

 

Table 15. Sustained Virologic Response (SVR) for Select Subgroups of Genotypes 1, with or without Cirrhosis (ASTRAL-1)

GT-1a - Cirrhosis Yes (compensated) - 100%, Cirrhosis No - 98%

Treatment-naïve - 97%, Treatment experienced - 100%

 

Table 32. SVR12 in Patients with or without Baseline NS5A RAVs (ASTRAL-1, ASTRAL-2, ASTRAL-3)

EPCLUSA 12 Weeks, Genotype 1

SVR12 - With any baseline NS5A RAVs - 97% , Without baseline NS5A RAVs - 100%

 

Table 31. Phenotypic Change of Genotype 1a - NS5A Substitutions to Velpatasvir

 > 2.5-100-fold - M28A/T, Q30E/G/K, L31F/I/M/V, P32L, H58D, Y93C/L/S/T

 > 100-fold - M28G, A92K, Y93H/N/R/W

Cross Resistance - In vitro data suggests that the majority of NS5A RAVs that confer resistance to ledipasvir and daclatasvir remained susceptible to velpatasvir.

 

Vosevi - (only available to treatment-experienced as yet)

Cross Resistance - Cross-resistance is possible between HCV NS3/4A protease inhibitors and between HCV NS5A inhibitors by class. Sofosbuvir, velpatasvir, and voxilaprevir were each active against substitutions associated with resistance to other classes of DAAs with different mechanisms of actions (e.g., voxilaprevir was fully active against virus with NS5A resistance-associated substitutions and nucleotide analog NS5B inhibitor resistance-associated substitutions).

 

Viekira XR

Treatment-naïve, HCV GT1a-infected subjects without cirrhosis treated with the components of VIEKIRA XR with RBV for 12 weeks in PEARL-IV had a significantly higher SVR12 rate than subjects treated with the components of VIEKIRA XR without RBV (97% and 90% respectively).

Table 12. TURQUOISE-II: SVR12 for Chronic HCV Genotype 1-Infected Subjects with Cirrhosis Who Were Treatment-Naïve or Previously Treated with pegIFN/RBV GT1a 

 Components of VIEKIRA XR + RBV for 24 Weeks % (n/N) SVR12 95% (115/121)

 Components of VIEKIRA XR + RBV for 12 Weeks % (n/N) 89% (124/140)

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Linds, 

No, not what-so-ever would anyone here think you come across whiny or why me-ish!! On the contrary, you are forging ahead trying to cope (very well I might add) in adjusting to this astounding new reality and all the turmoils that go woth it. It IS a shock to the system, in more ways than one.

I, on the other hand did whine (and cry) and go why me and all of it was totally justified (in MY book)

Keep doing what you have been doing, come here, learn, ask questions - knowledge is power, although I know how powerless one can feel before you are allowed to "get going", gain treatment and the security that treatment brings.

My awareness about hepc (or Aids/HIV) was SO old school, I had NO idea about the current state of affairs with modern treatment - I was not educated nor even aware what was happening about hepc in the modern world! - I was still back in the days of how HIV was a death sentence - so, you can imagine my shock and dismay, and my negative approach to discovering my hepc. Man, the worst was that I felt so stupid, and I beat myself up for it! So, I knuckled and learned all I could - it did help me a bit get through the initial stages of diagnosis and move forward, better prepared. In the 7 months from diagnosis Jul 2015 to start of treatment March 2016, I learned a lot, and I still am! There is lots to know. I am no dif than anyone else, most people do not know enough about hepc. The most important bits ARE getting diagnosed, and getting cured - that's the bottom line - (and you WILL get cured!) the rest is just important chafe. If any of us here, can be of any help to you, we will. I know coming here helped me! Know that we will always offer assistance where we can, none of here have all the answers, but we can do our very best to give accurate info, or ideas and share experiences - no question or emotion is off the table! 

You may be right about your NP, but, no harm in testing her out, even if you are right and it goes no where, you can try. Pose "specific" questions to her then, and just see where it goes and what you can glean from it. You may (I hope) have better luck exploring your best treatment questions/options with the new hep guy.

Fire away - ask anything you want. Somebody will try to help with it. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Canuck,

Thank for taking the time to share your knowledge.  There is SO much I still don't know and understand and the people on the site have been absolutely amazing!  I can't begin to say how grateful I am to have access to so many folks willing to share their own experiences with Hep C.  Although it appears that I may have had it for decades, I only found out a few months ago and haven't had to deal with the struggles for years that so many others have here.  I hope I don't come across as whiny or with the "why me" mentality because that is certainly never my intention.  I'm just still in shock and trying to process all of this.  Unfortunately, I'm not sure the GI NP I'm seeing now is as up to date on all the latest treatments and I honestly don't feel as though she has the time to really see me as more than just another statistic.  As I've said here before, I am seeing another GI doctor on Aug 31, who I believe is more of a specialist, so hope to have more answers by then.

I appreciate the info about anemia and Riba.  I'm not currently being treated for anemia but remember that I was anemic during my pregnancy (25 years ago!)-maybe that will count!  

In the meantime, thank you again for all here who take the time out of their busy days to listen and offer advice and support.  I'm sure I'll be visiting here often, especially when I finally can start treatment.



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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You are a fountain of knowledge, Tig!  Thanks!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Linds,

The only reason I was asking if you knew where your platelets were at, was simply in mind of you, you wishing to know if you were or were NOT a good candidate for a riba-based therapy.

I am sure you have had CBC and RBC labs, and other bloods drawn (in your work-ups) - platelets would be part of your RBC/CBC panels drawn.

Included, would be some of these: 

... The Anemia Panel is a comprehensivepanel that includes a CBC, Ferritin, Folates, Total Iron Binding Capacity with Iron, Reticulocyte Count, Vitamin B12 and Folic Acid. A CBC (Complete Blood Count) looks at important parameters of your blood including hemoglobin level, white blood cells, red blood cells and platelets ...

There are various forms of "anemias", and one kind of anemia can possibly be (temporarily) induced when taking riba-based therapies, therefore, had it been found you already had (pre-existing) problems with anemias, this might give your docs/insurance pause for thought in their decision to utilize riba.

Not a likely "out" for you, but a valid arguement for someone found with pre-existing anemias. That's the only reason i brought platelets up.

You really ARE going to have to avail yourself on the insight and wisdom of your docs. You can check with them, to ascertain they have ruled out any exemption from riba-use, due to anemias or other inabilities to tolerate riba - like psychological fragility (and already being on certain meds), etc., and find out from them which of ANY treatment choice you have, would truly be best for you. wink C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Lindsmatt52 wrote:

"......My insurance gave me no explanation as to why they preferred the Veikira/Ribavirin and I am trying to determine what that is. ..."

 

Greetings;

Your insurance has a preference based on contracts they are involved in. The V-Pack/RBV is an approved treatment for folks with your stats.

The very reason I was first denied what my Doctor prescribed and approved for V-Pack/RBV was money and contracts. My then Insurance Company had a contract with Abbie V that decided the issue. That was a huge cost savings for them as well as the bottom line with regard to why.

I failed treatment towards the end of the year and the following year I had changed Insurance Companies who happened to have a Contract with Gilead. They had a preference for Harvoni  and it worked out. I remember going through all the paperwork for the new insurance and V-Pack was specifically excluded as an option for treatment for Hep C.

I believe Gilead offers lower prices to Insurance Companies IF they specifically exclude the competition. The same hold true with them all I am sure.

I was found with Ns5A and Ns4 resistance after I had failed. If you want some interesting reading my entire saga is here ..

http://hepcfriends.activeboard.com/t61269039/test-results-appreciate-input/?page=1&sort=oldestFirst

V-Pack / RBV has cured many folks. It is a good combo in the fight against The Dragon.

At this point, compelling evidence would need to be presented why Epclusa and not V-Pack in that both are approved protocols. That is where true fighter of a Doctor must be part of the picture.

In any case and either way, treat.

Regards

JimmyK



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Hey Lindsay,

 

Don't be too upset, I think a lot of people had a wait of sorts to treat. My biopsy showed no fibroses, and all my scans were lovely. It meant I was placed on the waiting list after failing the old interferon hell mix. I was a bit impatient and became a bit upset with it all at points, but I survived. I treated on the dac/sov combo and I'm clear. I know its a wait and a worry, but it becomes after a while just a fact. From knowing to clearing it was 5 years I think. You'll be treated way before then, times are good with even trails.

Chin up and there are plenty to chat with if you need a shoulder, you're always welcome to PM anyone you want on here. 

x



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 

Tig


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Lindsay,

If I may butt in here, your platelets are just fine. We often see them drop significantly in individuals on different forms of treatment, especially the old drugs like Interferon with Ribavirin. They also drop in people suffering with cirrhosis.  At 250, you're right in the middle of the normal zone! Your AST/ALT are very normal as well. An elevated ALT is cause for concern, as it shows liver specific inflammation.

The normal number of platelets in the blood is 150,000 to 400,000 platelets per microliter (mcL) or 150 to 400 × 109/L.Normal value ranges may vary slightly. Some lab use different measurements or may test different specimens. Talk to your doctor about your test results.

Here's some light wink reading for you:

Understanding Lab Test Values


 



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges

Signature Line Set Up/Abbreviations   Payment Assistance

 



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Canuck-Thank you so much for your informative and detailed explanation of RAVs.  You are obviously much more knowledgeable than I am about the NS5 resistance but I do understand the points you've brought up and intend to do more research on the BEST treatment for me, even if it indicates that would be the dreaded Riba!

My platelet count on 6/8/17 was 270 K/ul.  How does that figure into all of this?  I also forgot to add to my statistics that my ALT was 33 and my AST was 28.

Thanks again!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Hi Lindsmatt,

Good, I can see you have already been putting your thinking cap on and are and have been researching. Leaving no stone unturned was my favourite motto!

Tig and Mallani are a wealth of knowledge re: resistance alright.

It WAS good you and your docs tested you for your 5A areas - not everyone is fortunate to get that testing done as a treatment-naive, seems testing mostly happens AFTER a failure and when going for re-treatment. Had you been treatment-experienced and currently in need of rescue re-treatment - then you have just walked into the world of Vosevi, which has demonstrated being a great cure for those with Rav;s needing re-treatment. 

But you are treatment-naive, so Vosevi would be off the table for you, but the sofa (5B) and vel (5A) in epclusa has a very astounding track record for working very well, despite people who "come with" 5A RAV's. For those being re-treated due to failures, to epclusa they added vox (3/4A), only now available as Vosevi - but, up until recently the 3rd drug they used to make epclusa a triplet, was riba!

A third drug (riba, or a 3/4A like vox) to say, a 5A/5B double, is thought an important boost to best screw up viral abilities on multiple levels. (But take all what I "think"or say, with a grain of salt, this is just me blabbin')! I am not well versed at all on Rav's, I just dumbly wade in where I have NO expertise, trying to think out loud. There are now many new drugs out there, and coming out - new A's, B's and 3/4 A's. Like I said prior, there ARE a lot of drugs nowadays to cure you.

Generally, it seems doubles and shorter courses are for treatment-naive less than 6 mil. loads, with little cirrhosis. Longer doubles, or triples seem to be the regimes for re-treatment. One exception (that has already been on the market for quite a while) has been Viekira with or without riba, but other drugs and more triples and quadruples are coming out. Tig points out a new combo to the market - Maviret (glec/pib).

All I know is what i read in the actual trial datas, where they show how effective each particular regime may be for your specific parameters (1a and your particular 5A testing and RAV's)_- that is the info i would be discussing with your new doc. That's the argument that I think would work best with insurance - proof that your #1 drug choice should be "X" as for you it have been proven that holds the best cure rate for you.

Even treatment-experienced folk found with 5A RAV's have had re-treatments with the same 5A drugs they previously had, just longer and/or with a third drug added such as riba - for example, those failing on Harvoni's ledi (5A) have been successfully re-treated on longer courses of Harvoni sometimes with riba added.

All I am guessing, is that many treatment-naive people may initially present themselves for their first treatment and have arrived "coming with" RAV's, they would just never know it, as they had not been tested for RAV's prior to their first treatment.

RAV's can become less persistent, can become less "fit" with time, some RAV's are easily beat right away regardless of their presence. This is why I say the viekira with riba would likely be an approved regime for you (the question is - is there another regime for you with better results) - but (1) you are shy to wish for any riba regime and (2) your doc may find or wish for you a different or superior regime (in overall performance) for you. Tig has highlighted, new to the market - Marivet. Just remember riba is not the end of the world either! Many here have done it, not any i recall who enjoyed it, but it worked - and THAT is the bottom line - cure. Some I recall toughed out riba surprisingly well!

Perhaps looking up performances (based on your parameters) and comparing viekira with riba (against epclusa or another regime) will demonstrate which regimes hold the best or higher success rates for you. That's the kind of argument (i think) your doc has to appeal with. He may be splitting hairs tho, with many regimes running between 93/95/96/97-100% - almost all with astoundingly high success rates.

Thanks for the more detailed data about your Fscores and testing. Just a note, you can, on your own, phone around and find out where a fibroscan machine lives, and knowing it's proximity/location now, you can ask your new doc for a referral there (if he does not have his own machine), just a thought for your upcoming appoint. with him (should you or he think an added fibroscan be good additional data) - although, the acti/fibrosure blood tests are also good reliable indicators as tests go. He may well ask you to have another U/S, or he may not, some insist on very current assessment data (bloods, fibroscans or imaging). Are your immunizations up to date? A/B, flu? Some insurance people too want all data to be within 6 months (or more) current.

Lots of details to keep in mind to prep for your appointment. Do you have a current platelets count? C.






__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Hi Canuck!  Thanks for your insight and advice.  To answer a couple of your questions, I did not have a Fibroscan due to the fact that my Gastroenterologist doesn't have one (I asked!).  I am getting a second opinion in AUgust and am hoping they may have one.  My Fibrosis score is from the Fibrosure and Actitest Blood panel. The Fibrotest score was 0.41 (F1-F2) and the Actitest score was 0.18 (A0-A1).  I had an abdominal ultrasound done while I was in the Emergency Room for colitis in July 2016 (prior to knowing about my Hep C)and at that time, everything was normal, including my liver, except for my inflamed colon, but have not had one since then.

I will continue to do research on the Ribavirin.  I had breast cancer in 2002 and wonder if that may be a reason to not take riba treat!  biggrin Thank you again.



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Thanks so much, Tig.  Will be working on my letter today!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Welcome from me too LM. 

I too was 1a F1 and the only reason got Harvoni right away was I failed 2 previous treatments. Tig and Canuck have offered great info/advice. Aug. 31st isn't too far off so just remember that God (or whatever you believe in) has your back. And it is always in God's time. And my higher power doesn't wear a watch

wendy

 



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Hi Lindmatt,

I too tried to play the metal fragilty card to get out of being offerred sof/riba (for 24 weeks!), at the time, that was the only drug choice my Province in Canada was going to give me, but, if I failed that treatment, then, and only then, maybe (lots of fine print) they would "later" allow me to try sof/dac which would have been better treatment for me (higher success rate) for me as a first treatment and being a GT3!! GT3 treatment regime choices were limited, period, drugs choices in Canada are limited period, but the Provincial dictates were the most limiting factor of all!

My Province was acting kinda like your insurance I think.

In order for my doc(s) to request a "special excemption" from sofa/riba, I would have to clearly demonstrate a lengthy and proven psychological condition for which I had been receiving oral meds for,  a iron-clad previously documented case of something quite severe enough that drugs could not control it while I was on sofa/riba, otherwise it was going to be sofa/riba for me despite any pre-existing tendancy for psychological fragility. I had no history, so my doc would not even apply for an excemption - they knew an application would just be denied - I knew I would not handle 24 weeks of riba. My choice was clear and I had to pursue a trial instead, and I was just plain lucky I got in one that was epclusa based - which was the ideal in treatment for me.

It was scary, frustrating and maddening to be in this uncomfortable postion after diagnosis, the fear and anger actually helped propel me, to finding a way out, and it worked. It will for you too, between you and your docs, you will find a way to get the best drugs possible for you - it WILL work out - just time and effort on the part of you and your doc. Use this time to research as much as you can about what your best drug choices are, and get ready for that end of Aug appoint.

Did you have a fibroscan - if so, do you know what your kPa number is - not just the Fscore you mentioned of F1-2? (How do you know you are F1-2, what test did they use - just curious). Have you had an abdominal ultrsound done - did it show any abnomalities? These kinds of things, how firm your liver is, the degrees of liver or adjacent organ changes shown in imaging can all help in demonstrating a higher need, as do any abnormal blood tests, these all count for the box-tickers to approve you. But the thing is, you are approved, just not with the treatment your doc wanted for you. 

In order to avoid the viekira/riba over say epclusa or another riba-less regime best suited for you, your best bets would be to argue: the success rates of comparitive regimes based on your GT1, and on being a sub-type a, your 5A testing, your platelet count, and possibly pre-existing inability to tolerate riba (kinda in that order I would think)..

That was a good link you found TIG! Not just the letter examples either, although that was very fitting under the circumstances, but I'll have to scour that whole link more.

Hang in there dear, it's all going to work out in the wash. C. 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Welcome,

I hope soon you will be using your warrior energy to fight and beat that dragon instead of fighting your insurance system. You'll certainly find a team of supporters here, we are all on your side.

Alison

 

 



__________________

60y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

2.5years...post tx... successful dragon slayer 

Tig


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Hey Lindsay,

I found some examples of appeal letters provided by Dr. Gish. I think there might be some things you can utilize in your defense. Take a look at the third one down, 8 weeks of Harvoni. It's all in the way the appeal is written!

HCV DAA Treatment Appeals



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges

Signature Line Set Up/Abbreviations   Payment Assistance

 



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Thank you, thank you, C!  You truly understand where I'm coming from and I do appreciate your insight.  I do suffer from anxiety and depression and will try to use that in my defense.  I consider myself a very strong individual but also know my limits and will fight like a warrior for what I think is right for me!  

My insurance gave me no explanation as to why they preferred the Veikira/Ribavirin and I am trying to determine what that is.  Unfortunately, I think my current NP does not have the time or inclination to fight for me, so hope, as you suggested, that I will have better luck with the Dr. I am seeing in August.

Thank you for your encouragement and will keep you posted.



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Hi Lindsmatt,

Welcome here from me too!

I am glad you are all ready and poised for treatment. Sorry to hear about the approval delay things going on though.

I read through the other posts about insurance denials.

Your doc, with your testing, and knowing you - has asked for epclusa (and or Zep), insurance only came back with Veikira +riba, and I hear you about your preference to not to have to do a riba based regime.

My only suggestion is to count on your doc (or docs) to resubmit - re-apply for the epslusa. Does the insurance actually say EXACTLY WHY they feel veikira/riba would be the best regime for you? Your doc is better able to argue nuances, on your behalf, to get beyond a decision insurance makes based on "easier availability or lower cost"!! Success rates (based on your RAV's alone), or on some of your other personal health conditions, when compared through different regimes may likely show slightly better/likely more successful results for one regime, over another. Your doc should be able to present arguments based on your health stats, or just on regime success stats. Although, they are quite a few regimes out there that will cure you.

Pt's who are already psychologically fragile, on meds, or, who already demonstrate problems with low platelets are are shoe-in for insurance being forced to re-consider, first/second or thrid drug choices.

You and your doc have to figure out a way to argue for the best drugs, the ones he thinks are best for you. I am not saying the veikira/riba will not work you, but rather, in a perfect world, what drugs are really best for you, considering ALL - that is what is paramount.

You have another opportunity to try to apply for the best drugs a doc can muster up for you (with seeing this other doc at the end of Aug). Keep trying. I too hated the waiting part. Hang in there. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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Hi Lindsay,

Welcome new friend!! Don't sweat the worry or the wait, you are destined to obtain treatment and we'll offer support and maybe a sneaky way or two to get beyond the ignorant money grubber insurance companies. THERE! I told them, eh? Seriously, the appeal process is a PIA but necessary in many cases. We have found over the years that insurance companies will deny based on a fibrosis score of less than F3. They also don't tell you that those who appeal it often are approved. Sadly they are all trying to save money in this world of tumultuous medical insurance uncertainty. These medications are obscenely expensive and they want to be sure people and their doctors are serious. We as patients know that there should be no denial, period. If you're positive for HCV, they should approve it on demand. Doesn't work that way, yet.

Your doctor can also do what's called a peer to peer consult with the insurance professional in charge of approval. Sometimes that's a semi trained representative that does little more than answer the appeal line. When that occurs, your doctor basically knocks some sense into them! If you're experiencing problems that can be attributed to this disease, the case can be made that treatment is important now, not based on fibrosis score. It's a game for everyone but us. Long explanation, but that's kind of the gist of some of these denials. You have to fight for it and together, with your doctor, you'll prevail, I'm sure of it. The worry and the wait for approval isn't fair and is often some of the most frightening, because you KNOW that you've got this Dragon swimming around your liver and the thought of waiting is scary. An important thing to remember is with a fibrosis score of F1-F2 you have some wiggle room. When it hits F2/3-F4, then fibrosis is at severe levels and treatment is needed to stop further progression. That's also the way the insurance companies think, but our goal is to get treated so the fibrosis doesn't advance to such high levels. F "anything", aside from 0, is cause for concern, and we deserve to get rid of it. It's a slow progressive disease and fibrosis levels take years sometimes to progress between stages. But the objective is to stop it where it is and that's where the appeal process and your doctor going to bat for you comes into play. 

I'm glad you found us, too. We have some awesome people here and I know they'll be along soon to welcome you into the family. We like to think of ourselves as a tight knit group and we are going to be here for you all the way. It's a non judgemental environment and one built on respect for everyone. We know what it's like to be where you are. If you have any questions, don't hesitate to ask. We pride ourselves on accurate, current information. There's a lot to know about this, what works, what doesn't and what is outdated. The treatments have advanced light years since I took treatment in 2013, so pay attention to dates if you're searching for answers, wherever you're looking for them.

Okay, I think I've chattered on long enough! I look forward to the day we can celebrate your own victory against the Dragon. Trust that it will happen and let the worries fade....



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges

Signature Line Set Up/Abbreviations   Payment Assistance

 



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Thanks so much for your encouraging words! Am just thrilled I found such an informative site!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Hi ....I remember that shock fear anger emotions. I'm sorry to hear about your insurance company..hate insurance companines.....I'm in uk and had to fight the system to get Epclusa which is AMAZING...I only got it because I was geno 3 which had unmet need historically because so hard to treat...I hope you get Epclusa...it was an easy ride for me..fight fight fight!! Your insurance company and depending on where you are try and source funding? Tig and other moderators on here are so knowledgeable you have found the right place...they have all been a lifeline for me...giving knowledge and emotional support...always here to offer support. i hope you get your drugs soon..have faith and believe you can be cured...surly if you have fibrosis you ARE ill enough? Anyway you will get cured...it's a terrible waiting game to start ...I remember thinking they would write a prescription and that would be it.....I'm sending you positive vibes ....good luck

 best wishes and virtual hugs 



__________________

HBV 1982 Resolved  / HCV Undiagnosed until Sept 2016

female U.K. AGE 53 Fibro score 6.9 

Viral load 3.5 million October 2016 

Geno 3

Treatment Epclusa

Undetected at 2, 4, 8 and 12 EOT , SVR 12 / 24

October 2016 Alt levels 190 now, July 2017 17

 



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Hi.  I was diagnosed with HEP C June 2017.  I have seen the NP in my GI's office, am Genotype 1a, my VL is 7.4 million and I have F1-F2 fibrosis.  I had the Ns5 test and am resistant to both Harvoni and Zepatir, so my doctor prescribed Epclusa.  I have been denied by my insurance company (apparently not sick enough!) and have filed an appeal, which is where I stand now.  I do have an appointment with another doctor who is a Gastroenterologist/Hepatologist but can't see him until August 31.   I have experienced a gamut of emotions, including shock, fear, anger and frustration but have finally accepted that this is real and am just hoping to be able to start my treatment soon.  Thank you all for letting me share my story!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay

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