veikira 12 or 24 weeks

[lana]

Please help my mom! She is 53 y.o, has genotype 1b, fibrosis stage 2-3, but no
cirrhosis, previously treated unsuccessfully with interferon and
ribavirin( she could not tolerate the components). She has been taking
Veikira for 10 weeks already, the virus is still detectable in the
amount 60-100 iu/ml, it has dropped from her original viral load but it stopped going down now and for the last 3 weeks it has been detected in the same amount. but
according to the clinical trials the virus should be undetectable by
week 4. We are very worried by week 12 she won't be cured. Should we
extend the treatment to 24 weeks? Should we buy more veikira or do it with ribavirin as well? It is only recommended for patients
with 1a or cirrhosis but her case is different from those in trials.
Please help!

[Lynn K]

On treatment viral load testing means little in regards to eventual SVR there is even some thought that on treatment viral load testing is unnecessary and only serves to cause a patient unnecessary concern. There is no requirement for on treatment viral response with these new medicines.

The only test that matters is the 12 week post treatment result of SVR (Sustained Viral response aka not detected) We have even had here a couple of people who were weakly detected at EOT but when tested at t 12 weeks post were not detected and cured.

I don't believe you can just go out and by more medicine she must have a prescription for the additional treatment from her doctor and 24 weeks is not per the prescribing information.

If this treatment does not work I doubt taking the medicine for longer would help she may have some resistance issues that make Viekira Pak less effective in her case I hope that is not what is happening with your mom.

Not sure what you mean her case is different from those in trials. The PEARL-III trial was with prior treatment experienced patients GT 1b without cirrhosis which sounds like your mom from what you have said.

From the prescribing information sheet for Viekira Pak

The SVR rate for HCV GT1b-infected subjects without cirrhosis treated with VIEKIRA PAK
without RBV for 12 weeks in PEARL-II (treatment-experienced: null responder, n=32; partial
responder, n=26; relapser, n=33) and PEARL-III (treatment-naïve, n=209) was 100%.

I also found this

http://www.medscape.com/features/slideshow/pearl#7

On the PEARL III trial of the 419 patients GT 1b treated there was only one Virologic failure (a person who did not clear while taking the meds) and that 1 person was on Viekira Pak with ribavirin. Of the remaining 215 there were zero relapse.

I am hoping the best for your mom and really her odds from the trials look good. But just to add I had hep c for 30 years before it progressed to cirrhosis and have been living with cirrhosis for 8 years now so she does have time.

If this treatment does not work for her there are even newer treatment coming soon so if she should need to be retreated there will be new medicines for her to treat with.

Most importantly what does her doctor have to say about her test results?

Sending my best to you and your mom.
Please let us know how it is going we are here for you
Lynn

[lana]

Lynn hello
Thank you for your response!
Oh I read those trials from A to Z multiple times that's why I think my mom doesn't conform with them. She has virus detected at the end of her treatment, and hers was the easiest case with 100% cure rate, 1b without cirrhosis
Thank you for the response!
My mother is in Russia and we don't need prescription for Veikira. That's why I asked if she needs to extend her treatment and buy more. Her doctor, unfortunately, is lost and has no further plan.
Her 12 week treatment ends next week, she hasn't achieved SVR and if we need to buy more of Veikira we need to buy it now. Her genotype was tested at least 4 times and always came in as 1b and she did biopsy and fibroscan, both showed fibrosis stage 2-3. No mistake there.
What you said "The only test that matters is the 12 week post treatment result of SVR (Sustained Viral response aka not detected) We have even had here a couple of people who were weakly detected at EOT but when tested at t 12 weeks post were not detected and cured" sounds promising but can we bet on that. Her viral load is not marginal too, it's 60-100 iu/ml not in the 10-60 range
Thank you so much
And sorry for taking your time

[Lynn K]

I am just thinking but just my non medical opinion that if 12 weeks doesn't work I am not convinced treating for an additional 12 weeks would make any difference. She may have some resistance factors working against her.

But if you have that option and she is tolerating treatment I suppose it might be something I would consider trying.

Unfortunately here in the US the American Association for the Study of Liver Diseases (AASLD)  treatment guidelines for patients who fail treatment with 5A (NS5A) inhibitor has failed paritaprevir/ritonavir/ombitasvir plus dasabuvir. (Viekira Pak) are to wait in the case for those with mild liver disease.

See information a bit past half way down on the page and copied below

http://www.hcvguidelines.org/full-report/retreatment-persons-whom-prior-therapy-has-failed

"For patients with cirrhosis or other patients who require retreatment urgently, testing for RAVs that confer decreased susceptibility to NS3 protease inhibitors (eg, Q80K) and to NS5A inhibitors should be performed using commercially available assays prior to selecting the next HCV treatment regimen. For patients with no NS5A inhibitor RAVs detected, retreatment with ledipasvir/sofosbuvir and RBV for 24 weeks is recommended. For patients who have NS5A inhibitor RAVs detected and who do not have NS3 inhibitor RAVs detected, treatment with simeprevir, sofosbuvir, and RBV for 24 weeks is recommended. For patients who have both NS3 and NS5A inhibitor RAVs detected, retreatment should be conducted in a clinical trial setting, as an appropriate treatment regimen cannot be recommended at this time.

No data are yet available on the retreatment of patients for whom prior treatment with PrOD has failed. However, studies that have evaluated patients whose virus did not respond to PrOD have reported the presence of RAVs that confer decreased susceptibly to NS3 protease inhibitors (eg, paritaprevir), NS5A inhibitors (eg, daclatasvir, ledipasvir, ombitasvir), and nonnucleoside polymerase inhibitors (eg, dasabuvir). Based on these observations, patients for whom treatment with PrOD did not result in an SVR should have HCV treatment deferred in the setting of mild liver disease, and for those with advanced fibrosis, testing for RAVs should be performed."

I hope treatment works for her now. Otherwise the only option is likely she will need to wait for the next newest treatment when it becomes available.

Lynn

[HazelAustralia]

I hope the next two weeks makes a difference for your Mum Lana,
all my best thoughts,
Hazel

[BillT]

Lynn,
       Cal had a extended session on the Vieira.I'd have to go back and find one of her posts to see what her stats were and the reason but I know it was more than 12 weeks.She'll jump in when she see's this.

[lana]

Bill, Lynn Guys thank you
Your help is immense
Lynn, yes 24 weeks with sof is the next step but the price is ouch (96k+ here )
Bill, If you could find out how the extended session worked that'd be fantastic!

[BillT]

Hi Iana,
           I wish Cal was around to help you with this.If I remember correctly she was on the Viekira with the riba for 12 weeks,and then she did 7 weeks(?)without it.She didn't do the whole 24 weeks.I could be wrong on the specifics but I know she was on them longer than 12 and less than 24.If she see's this she'll sort you.

[Philadelphia]

Cal's tx was unconventional in terms of time frames. Yes she did around 16 weeks tx give or take, with riba for most but not all that time. I think she had relapsed a few times so she did a longer treatment period than was standard.

[jakas]

@lana if you go for Harvoni 24 weeks or whatvever you can get the generic ones from India will cost around $ 2500 for 24 weeks if the insurance wont go all the way.

[lana]

Bill, Philadelphia, Hazel and Jakas greatly appreciate!!!!

Bill, Philadelphia, did she achieve SVR eventually with her extended treatment? As I understand, Cal extended her treatment because she still had virus detectable at the end of 12 weeks?

Jakas, hey, I don't think we will ever buy a generic, there are terrible complications people have from them. Also there is no insurance company involved. My mom is in Russia and she is paying from her own pocket. We can squeeze the money for Harvoni but now it's her last week of veikira and we are thinking if she should buy more of veikira , maybe she has a chance to achieve SVR after several more weeks of veikira. He viral load was going down but stopped at the range 60-100 iu/me around 4 weeks ago and hasn't changed since

[BillT]

lana,
      This starts you on Cals thread at her 10 week mark.If you skim through it from there it explains the whys and where of it.

http://forums.hepmag.com/index.php?topic=3209.400

[lana]

Bill thank you!!!

[NYCHEPCMAN]

Not sure if accurate as I await Express Scripts approval process - but the system says the cost per 28 days is $6,937.31 of which my co-pay will be $2,774.92. If true the total cost is about $21,000 for 84 days ($8,300 co-pay)- still expensive but a lot more affordable than what I was thinking - and very telling why they selected Veikira over Harvoni - I havent seen this cost listed anyplace so I thought I'd share.

[Lynn K]

Do you have the option for mail order and is that the mail order price?

The pushed me into mail order that way like it or not.

I also have express scripts if I was buying Harvoni now my mail order price is $10 dollars but through a participating pharmacy it is $75 per one month supply. But also says after 2 months it would go higher although they are not saying how high.

From what I have seen if you were to go to by yourself some Harvoni the sticker price is $1125 a pill or $94,500.00 for a 12 week course of treatment

Have you gone to my Support path Harvoni and looking into the copay coupon?

Eligible patients may pay no more than $5 per co-pay for HARVONI

We believe that cost should not be a barrier to receiving treatment. That’s why the makers of HARVONI offer a co-pay coupon. If you are eligible, you may pay no more than $5 per co-pay. Need a replacement coupon?

Please note the following:

    You are not eligible if you are enrolled in a government healthcare prescription drug program such as Medicare Part D or Medicaid. This includes when you are in the Medicare Part D coverage gap known as the "donut hole."
    The HARVONI Co-pay Coupon Program will cover the out-of-pocket costs of your HARVONI prescriptions up to a maximum of 25% of the catalog price of a 12-week regimen of HARVONI. See Terms and Conditions below.

https://www.harvoni.com/support-and-savings/co-pay-coupon-registration?evo_source=MYSUPPORTPATH&_ga=1.73682641.2123786409.1452665328

5 dollars beats $2,774.92 every day of the week

Good luck

[HazelAustralia]

Hi NYCHEPCMAN,

Great news that you are getting closer to the cure. The other reason they would have selected Vieira Pak is because of the success rate - correct me if I'm mistaken but I think you said you were genotype 1B for VP has these rates of success:
Genotype 1b, no cirrhosis - 100%
Genotype 1b, cirrhosis - 99%

I think the costs you quote are incorrect - I was told the cost of my 12 week Viekira Pak, wholesale, costs  AU$95,000 , in the US I believe it's US$83,319 - so you're not getting the cheap option!

Abbie Vie also have a financial support option (though I know you are not saying that you need that - just for people to remember) :
If you cannot afford your medication, contact www.pparx.org for assistance.


Best,

Hazel

[HazelAustralia]

Apologies - I was trying to find the US Vieira Pak financial support program as I know we have an Australian one - instead the link redirected to a third party that may be useless. Your US health system is tremendously complicated!

[NYCHEPCMAN]

Thanks Lynn and Hazel -

The doctor's office called - insurance company rejected Harvoni and are suggesting Viekira Pac - so tomorrow I have to go in for a new Complete Blood Count and urine test (I guess to demontrate I havent used drugs?). They seemed pretty optimistic that I will get approved. 

I then called Abbie Vie - the good news is that they said if I am approved by the insurance company then my co-pay will only be $5 since their assistance program will cover the remaining balance. Its a big relief to me as I was looking at cashing in some retirement accounts. 

Like everyone here, the anxiety of the unknown and wait is tremendous so I am happy to have this resource to hear from others who have gone thru the same thing.  Next step waiting for approval, the meds to come and then starting treatment....

[Lynn K]

Congrats on getting the Viekira Pak copay info

I would think the CBC is a pretreatment base line test as that test does not look for drugs. The UA could be or just a base test as well I believe you are required to be told if you are being drug tested and there are specific protocols for UA drug testing like don't flush toilet or was hands until you provide the sample to the technician. Also sealing the container with a numbered sticker and signing that you witnesses them seal your sample.

I did not have any drug testing related to my treatment just a random for my job. But I don't have a recent history of drug use and apparently they take me at my word or my insurance did not require proof for approval.

Anyway hope you get your meds soon and good luck on treatment

[HazelAustralia]

Not too many more hurdles now NYHEPCMAN,

looking forward to hearing of your next important ones being behind you,

Hazel

[NYCHEPCMAN]

Just heard that I was approved for 12 weeks for Veikira!! No idea when I start - should hear tomorrow!!! Never have been so happy to get medication.

 

[Lynn K]

Awesome news

Good luck!

[mamamia888]

Hello

 Will the copay still be honored for the Harvoni even if the insurance does not cover it ?Thanks

[Lynn K]

Hi mamamia888

This thread is for members to post their 12 week and 24 weeks post treatment results. You may want to start a new thread about Harvoni copay questions.

I got this from the Harvoni web page. Unfortunatly Gilead discontinued their practice of paying for Harvoni for those denied by their insurance

I copied this below from their web page My support path Harvoni.

You should call them for specific information for your situation

https://www.harvoni.com/support-and-savings/co-pay-coupon-registration

Providers and patients can call 1-855-7-MYPATH (1-855-769-7284) for assistance


HARVONI
IMPORTANT SAFETY INFORMATION FULL PRESCRIBING INFORMATION FOR HEALTHCARE PROFESSIONALS 1-844-READY41
DISCOVER HARVONI  TAKING HARVONI  GETTING STARTED  SUPPORT & SAVINGS HARVONI SUPPORT PATH  FINANCIAL ASSISTANCE  INSURANCE SUPPORT  TOOLS & RESOURCES  CO-PAY COUPON 
Eligible patients may pay no more than $5 per co-pay for HARVONI

We believe that cost should not be a barrier to receiving treatment. That’s why the makers of HARVONI offer a co-pay coupon. If you are eligible, you may pay no more than $5 per co-pay. Need a replacement coupon?

Please note the following:

You are not eligible if you are enrolled in a government healthcare prescription drug program such as Medicare Part D or Medicaid. This includes when you are in the Medicare Part D coverage gap known as the "donut hole."
The HARVONI Co-pay Coupon Program will cover the out-of-pocket costs of your HARVONI prescriptions up to a maximum of 25% of the catalog price of a 12-week regimen of HARVONI. See Terms and Conditions below.

Check your eligibility

*Are you a current resident of the 50 states, District of Columbia, Puerto Rico, Guam, or the Virgin Islands?

 Yes No
*Are your prescriptions paid for in part or in full by any state- or federally funded program, including but not limited to Medicare or Medicaid, Medigap, VA, DOD, or TRICARE? Please note that Medicare Part D enrollees, while in the prescription drug coverage gap (the "donut hole"), are not eligible for the co-pay coupon.

 Yes No
*If you begin receiving prescription benefits from such state- or federally funded programs at any time, you will no longer be eligible to use the co-pay coupon. Do you acknowledge your agreement with this statement?

 Yes No

For financial or insurance assistance, call 1-855-769-7284.



Co-pay Coupon Terms and Conditions

The HARVONI Co-pay Coupon Program will cover the out-of-pocket costs of your HARVONI prescriptions after you pay the first $5 per prescription fill, up to a maximum of 25% of the catalog price of a 12-week regimen of HARVONI. The offer is valid for 6 months from the time of first redemption.
The HARVONI co-pay coupon (“Coupon”) can be used only by eligible residents of the U.S., Puerto Rico, or U.S. territories at participating eligible retail, specialty, or mail-order pharmacies in the U.S., Puerto Rico, or U.S. territories. Product must originate in the U.S., Puerto Rico, or U.S. territories. You must be at least 18 years old to use the Coupon for yourself or a minor.
The Coupon is limited to one per person and is not transferable. No substitutions are permitted. The Coupon is only available with a valid prescription. The offer cannot be combined with any other coupon, free trial, discount, prescription savings card, or other offer. Patient may not be currently receiving free drug assistance through Gilead Sciences, Inc. (“Gilead”)'s patient assistance programs.
The Coupon is not insurance and is not intended to substitute for insurance.
The Coupon is valid only for patients with commercial insurance or cash-pay patients and is not valid for prescriptions that are eligible to be reimbursed:
in whole or part by Medicare, Medicaid or a Medicare Part D plan, TRICARE, VA, DOD, Puerto Rico Government Health Insurance Plan (“Healthcare Reform”), or any other state- or federally funded healthcare benefit program (collectively, “Government Programs”); or
by commercial plans or other health or pharmacy benefit programs that reimburse for the entire cost of prescription drugs.
Patients without insurance coverage or who have commercial insurance that does not cover HARVONI are considered “cash-pay” patients. Medicare Part D enrollees who are in the prescription drug coverage gap (the “donut hole”) are not considered cash-pay patients, and are not eligible for the Coupon. Patients who begin receiving prescription benefits from such Government Programs at any time will no longer be eligible to use the Coupon. Void where prohibited by law, taxed, or restricted.
Patient, pharmacist, and prescriber agree not to seek reimbursement for all or any part of the benefit received by the patient through the offer. Both patient and pharmacist are each individually responsible for reporting receipt of Coupon benefit to any insurer, health plan, or other third party who pays for or reimburses any part of the prescription filled using the Coupon, as required.
It is illegal to sell, purchase, trade, or counterfeit, or offer to sell, purchase, trade, or counterfeit the Coupon.
Certain information pertaining to your use of the Coupon will be shared with Gilead, the sponsor of the Coupon, and its affiliates. The information disclosed will include the date the prescription is filled, the number of pills or product dispensed by the pharmacists, and the amount of your co-pay that will be paid for by using the Coupon. For more information, please see the Gilead Privacy Policy at www.gilead.com.
Gilead reserves the right to terminate, rescind, revoke, or modify the Coupon at any time without notice.
HARVONI is a prescription medicine used to treat chronic (lasting a long time) hepatitis C genotype 1, 4, 5 or 6 infection. It is not known if HARVONI is safe and effective in children under 18 years of age.

Important Safety Information

What should I tell my healthcare provider before taking HARVONI?

If you have: liver problems other than hepatitis C infection; severe kidney problems or are on dialysis; HIV, or any other medical condition; or if you are pregnant or breastfeeding or plan to become pregnant or breastfeed. It is not known if HARVONI will harm your unborn baby or pass into your breast milk.
Tell your healthcare provider and pharmacist about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. HARVONI and certain other medicines may affect each other, or may cause side effects. Tell your healthcare provider if you take any medicines containing tenofovir disoproxil fumarate (ATRIPLA®, COMPLERA®, STRIBILD®, TRUVADA®, VIREAD®).
What are the possible side effects of HARVONI?

HARVONI, when taken with amiodarone (Cordarone®, Nexterone®, Pacerone®), a medicine used to treat certain heart problems, may cause serious side effects, including slow heart rate. Get medical help right away if you take amiodarone with HARVONI and get any of the following symptoms: fainting or near-fainting, dizziness or lightheadedness, not feeling well, weakness, extreme tiredness, shortness of breath, chest pains, confusion, or memory problems.
The most common side effects of HARVONI include tiredness, headache and weakness.
Gilead®
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The content on this site is intended for US residents only.

©2015 Gilead Sciences, Inc. All rights reserved. HVNC0246 12/15

Best of luck to you
Lynn

[mamamia888]

 Thank you , Lynn K. I have no idea what I'm doing or where I should be posting since I am new at this ,but i have been navigating around and have seen some very helpful posts. I certainly hope I can find my way back here when I am glad to announce my progress of 12 and 24 week post treatment results.  i again thank you for your help.

[Lynn K]

Will you be treating with Harvoni or Viekira pak?

[mamamia888]

 I am starting my 3rd week with Viekra-pak and ribavinin. So far so good. I haven't had any side effects....yet.

  I was denied from my insurance company for the Harvoni and was approved for the Viekira

[NYCHEPCMAN]

Glad to hear!! Just got first boxes delivered - starting tomorrow

[mamamia888]

 Thank you , Nychepcman and best of luck to you!

[Lynn K]

Ok I assumed you were treating with Harvoni as you asked about the Harvoni copay coupon so I guess you didn't need all that info about the Harvoni copay coupon

I guess Viekira Pak has a similar program

https://www.viekira.com/about-viekira/copay-card

"You may be eligible to get VIEKIRA PAK for as little as $5 with the VIEKIRA copay card."

If you haven't already you should check it out

[mamamia888]

 Yes I am doing the Vieira -pak and I got the Copay of $5.oo.
 My husband  who just went through a radical prostatectomy and is recovering from his surgery would like to try the Harvoni which looks like it will be denied as well from our insurance co. I wasn't aware there was a copay for Harvoni. We were in contact with the Harvoni support path group after I clicked on the site you had posted. They also said you must be covered by your insurance in order to benefit from the coupon. They are however willing to apppeal for him. So  thank you for that information, as it was quite helpful.

[BillT]

Hi Mamamia,
                  Could you post your stats in your forum profile just so we don't keep asking please.What is your genotype?Mine was 1b and was on the Viekira,and I just finished my tx on the 8th of January.I went through for 12 weeks,almost no sxs,and I was undetectable at EOT.I'll find out in 8 more weeks if it worked,but I feel very,very good about it.Best of luck to you.
 
   

[mamamia888]

  Hi BillT,
 
    Congratulations  on your successful treatment so far.!

  I have posted as much as  I know about my stats. Although I was diagnosed 6 years ago ,I kind of put everything on a back burner and because I did not want to get a biopsy ,nor did I want to do the injections. Maybe a bit of denial as well 
 
 I hope to gather a lot of insight from this forum and hopefully be able to understand stats and the lingo better as time goes by. This site has proved to be very helpful and I can see you all are very caring and understanding with one another.

[Lynn K]

Hi mamamia
Have you had a fibroscan it is similar to a ultrasound but with thumps can also stage liver damage. There is also a blood test called fibrosure that can also help stage liver status as opposed to liver biopsy. They are not as accurate in mud range damage but they are available as an option. Also not usually to diagnose but rather to confirm liver condition there is ultrasound and some have had MRI's.

A not uncommon side effect of rivavirin is becoming anemic on treatment. I had my CBC checked weekly initially to monitor my hemoglobin levels (HGB) which in my case fell significantly so we did a dose reduction from 1200 mg/day to 1000 mg/day. After that my HGB stabilized and went to monthly blood testing. Hopefully they are monitoring your HGB as well while taking Ribavirin

Good luck
Lynn

[mamamia888]

   Hi Lynn K,
   I did have an ultrasound and I believe they are testing for anemia as I have had two blood tests since I started treatment and I will see my DR. next Tuesday. She did mention maybe lowering the dose of the ribavirin if I should become anemic. My dosage currently is 1000 mg. daily.


Thanks ,and  good wishes  with continued success to you

[BillT]

Hi Lynn,
           I believe it was you that posted a list of abbreviations if I'm not mistaken.Could you post it again if you happen to have it?I think there are a lot of new folks that could benefit from that.

Mammamia,
                 Ask them for a copy of your blood work.If they won't give it to you ask what your AST and ALT numbers are,and what your viral load and genotype are.

[Lynn K]

Not sure where I originally posted but this will probably do the trick:

Common Hepatits C Acronyms

AHC: Acute Hepatitis C
BMI: Body Mass Index
Bx: Biopsy
CHC: Chronic Hepatitis C
DNA: DeoxyriboNucleic Acid
Dx: Diagnosis
EOT: End of Treatment
EVC: Early Virological Clearance (Aviremic - HCV RNA Negative at Week 12)
EVR: Early Virological Response (12 Week PCR - UND or >2 Log Drop)
G or GT: Genotype
GI: Gastroenterologist
HCV or Hep C: Hepatitis C Virus
HVL: High Viral Load (?400,000 IU) (?600,000 IU) (?800,000 IU)
Hx: History
ITT: Intent to Treat
IU: International Unit (1 IU = 2.5 VL Copies apx )
LVL: Low Viral Load
PCR: Polymerase Chain Reaction
RNA: RiboNucleic Acid
RT-PCR: Reverse Transcription-Polymerase Chain Reaction
RVR: Rapid Virological Response (4 Week PCR – UND )
Rx: Prescription
SOC: Standard of Care
SVR: Sustained Virological Response (UND 6 Months post TX end)
Sx: Symptoms/Side Effects
TMA: Transcription Mediated Amplification
Tx: Treatment, Therapy (can also mean Transplant)
UND: Undetectable Viral Load
VL: Viral Load
VR: Virological Response
WHR: Waist to Hip Ratio

More Acronyms
AFP: Alpha-FetoProtein
ALP: Alkaline Phosphatase (Alk Phos)
ALT: Alanine Aminotransferase
AST: Aspartate Aminotransferase
BID: Twice Daily Dosage (from Latin "bis in die"
CBC: Complete Blood Count (almost the same as FBC)
CIFN: Consensus Interferon (Infergen/Alphacon)
EIA: Enzyme ImmunoAssay
ELISA: Enzyme-Linked ImmunoSorbent Assay
EPO: Erythropoietin Epoetin alfa (Epogen/Procrit), Darbepoetin alfa (Aranesp)
ESA:: Erythropoiesis Stimulating Agent
ESLD: End-Stage Liver Disease
FBC: Full Blood Count
FDR: Fixed Dose Ribavirin
GCSF: Granulocyte Colony Stimulating Factor (Neupogen)
GGT:: Gamma Glutamyl Transpeptidase
HCC: HepatoCellular Carcinoma (Liver Cancer)
HDL: High Density Lipoproteins (Good Cholesterol)
HGB: Hemoglobin
IFN: Interferon (Alpha 2a/2b)
IU: International Unit 1 IU (2.5 VL Copies apx)
lakh: (100,000 from Indian English)
LDH: Lactate Dehydrogenase
LDL: Low Density Lipoproteins (Bad Cholesterol)
LDR: Low Dose Ribavirin (Same as FDR)
LFT: Liver Function Test
LLN: Lower Limit of Normal
MCV: Mean Corpuscular Volume
NAFLD: Non Alcoholic Fatty Liver Disease (Steatosis)
NASH: Non Alcoholic SteatoHepatitis
Neup: Neupogen
NPIA: Non-Pegylated Interferon Alpha
PEG: PolyEthylene Glycol
PegIFN: Pegylated Interferon Alpha (2a/2b)
QW: Once a Week (from Latin quaque)
RBV/RVN: Ribavirin
RCC: Red Cell Count
RIBA: Recombinant ImmunoBlot Assay
Riba: Ribavirin
SC: Subcutaneous (Beneath or Under the skin)
SGOT: AST was called Serum Glutamic Oxaloacetic Transaminase
SGPT: ALT was called Serum Glutamic Pyruvic Transaminase
S-IFN: Standard Interferon (same as NPIA)
TG: Triglycerides (type of fat found in blood)
TIW: Three Injections Weekly (Tri Weekly, Three Times a Week, Thrice Weekly)
TMA: Transcription Mediated Amplification
TSH: Thyroid stimulating hormone (Also called: Thyrotropin)
ULN: Upper Limit of Normal
VLDL: Very Low Density Lipoproteins (Bad Cholesterol)
WBD: Weight Based Dose
WBR: Weight Based Ribavirin
WCC: White Cell Count
WHR: Waist to Hip Ratio   

[NYCHEPCMAN]

One day three of treatment so for no Sx!

[mamamia888]

    Oh my gosh!

  THANK YOU so much BillT and Lynn K! This will definitely help with my ignorance!
So happy I found this forum.
I do know my viral load was 2,237,690,and I am genotype 1a . I will ask for other reports when I see my Doc on the 9th.

      Thanks again for all of your help!

[mamamia888]

     
        Way to go , Nychepcman!

       Thats a good start:. I am on day   16 and I keep expecting to have some Sx (look at me use an acronym) but so far nothing I can put my finger on.       

[MsBrat58]

Hi, i am new to the forum. I am hepc 1b with comp  4the stage cirrohsis and txe. I am on vpac and rib for most of the tx. I began on Dec 7th. I was undectected after 2 weeks. I start the last weeks on Monday. Tx was rough because of ribo severe anemia. After 2 weeks of tx i had to undergo a blood transfusion. Still in bed. They lowered my dose of ribo to 3 caps a day but took me off two weeks ago. I go for blood work tomorrow. I am hoping i remain undetected. I saw v pac is fast tract for review with tx with no ribo even with comp livers (turqoise 111) I will post new readings next week. At my 2 week test though i was undetected my liver readings were high, but have been climbing down my skin is no longer yellow nor my eyes. I still have the itching. I really hope going off ribo doesn't affect my not being non detected. Wish me luck as i wish it for everyone.

[mamamia888]

Hello MsBrat58,

I am also new to the forum. I am on my 3rd week of v-pak and riba. It is encouraging to see that you were undetectable  after only 2 weeks and sorry  to hear of the blood transfusion. Was that because of the riba anemia ?
It sounds like things are going better now and you are being cured.
Here's to continued success on your journey.

[MsBrat58]

Thank you. I hope for the cure for us all. Nasty little virus. Had it for 33 years. I will post new readings next week. Just reading comments has helped me get through treatment. you are all amazing people.

[Lynn K]

Heck mamamia you're sounding like an old pro 

I wouldn't focus on looking for Sx too much what we look for we tend to find.

Good luck with Tx!

[MsBrat58]

Thanks Sweet Pea!

[mamamia888]

   You are right, Lynn!

   No need to "borrow" trouble. I feel like something must be working .Even if I develop
   Sx , it will be worth the risks.

    I've printed out the list of acronyms you posted and will need to refer to them frequently!

    I see by your profile that you are hepc free. That must feel so liberating!

[Lynn K]

Thanks

Yes after knowing I had hep c since 1990 and having failed 3 times with interferon and relapsing with Sovaldi and Olysio I thought I would never be free and especially with having cirrhosis for 8 years I was thinking I would not be alive for much longer.

So basically Harvoni saved my life and gave me a future. I feel more than free I feel alive.

[AussieRosa]

Hello MsBrat58,

I am also new to the forum. I am on my 3rd week of v-pak and riba. It is encouraging to see that you were undetectable  after only 2 weeks and sorry  to hear of the blood transfusion. Was that because of the riba anemia ?
It sounds like things are going better now and you are being cured.
Here's to continued success on your journey.

Hi there, Mamamia888. I started VPak and Riba at about the same time as you. So glad to hear you're having no side effects. I hope you continue to be lucky and breeze through the treatment. I'll be posting regularly with how things are doing for me. I hope you keep us informed on your progress throughout too. Best of luck with your treatment!
Rosa

[AussieRosa]

One day three of treatment so for no Sx!

Hi, NYCHepCMan! Welcome aboard the VPak train. I wish you the very best with your treatment and hope you too will keep us informed on how you're going with it.
Rosa

[mamamia888]

   Hello , Rosa!

   Best of luck to you!
   I look forward to reading your posts as we both travel this journey at the same time.
   Are you experiencing any side effects as of yet?

   I got a letter from my dr's office yesterday and as I was very excited to read the results from 2 recent blood draws that I had ,my excitement quickly turned to disappointment as all it stated was that my liver and blood tests were "ok". WHAT?!
  My next appointment is on February 9th and I plan on getting my results reported to me . I know I must stay on top of things because my medical team apparently is not.

   

[mamamia888]

Thanks

Yes after knowing I had hep c since 1990 and having failed 3 times with interferon and relapsing with Sovaldi and Olysio I thought I would never be free and especially with having cirrhosis for 8 years I was thinking I would not be alive for much longer.

So basically Harvoni saved my life and gave me a future. I feel more than free I feel alive.
[/quote
           

[mamamia888]

   Lynn
You certainly are an inspiration and I  am so very happy for you and after so many years of uncertainty , we get a happy outcome ! Hallelujah. Thank you for all the help you contribute to this forum.

[AussieRosa]

   Hello , Rosa!

   Best of luck to you!
   I look forward to reading your posts as we both travel this journey at the same time.
   Are you experiencing any side effects as of yet?

   I got a letter from my dr's office yesterday and as I was very excited to read the results from 2 recent blood draws that I had ,my excitement quickly turned to disappointment as all it stated was that my liver and blood tests were "ok". WHAT?!
  My next appointment is on February 9th and I plan on getting my results reported to me . I know I must stay on top of things because my medical team apparently is not.

 

Thanks, mamamia 
Here in Australia we only get 4 viral load tests per year, so I haven't had one apart from the one just before I started treatment. I'll be getting another next week, then no more until end of treatment.

The side effects I'm getting are: interactions with other meds I'm taking, causing me to have to reduce the dosage on those. Shortness of breath, slight anemia, stomach ache with a little gastric reflux. Nothing severe and if this is as bad as it's going to get then I'm very pleased to put up with these slight discomforts in exchange for getting rid of this pestilence I've had for over 30 years!

I hope you progress through your treatment with no side effects.
Rosa

[NYCHEPCMAN]

   Hello , Rosa!

   Best of luck to you!
   I look forward to reading your posts as we both travel this journey at the same time.
   Are you experiencing any side effects as of yet?

   I got a letter from my dr's office yesterday and as I was very excited to read the results from 2 recent blood draws that I had ,my excitement quickly turned to disappointment as all it stated was that my liver and blood tests were "ok". WHAT?!
  My next appointment is on February 9th and I plan on getting my results reported to me . I know I must stay on top of things because my medical team apparently is not.

 

Ok is better than not ok. I find some doctors like to skip thru the numbers- mine does so I signed up to quest's app where I get them anyways. Then I spend hours analyzing numbers I really don't understand.

[NYCHEPCMAN]

Just wanted to update folks - have been on Veikira for two weeks now - I am happy say that I have had no Sx - I am almost thinking the pills are fake :-)

Only thing family and friends notice is my skin coloring seems to be "pinker" meaning less yellow so it must be working. 

Only concern I have is leaving house for extended period of time - might sound weird but I am afraid that someone could steal the medication. 

[mamamia888]

Ha ha, NYC,

Your story sounds like I wrote it. I am starting week 5 tomorrow  V-Pak and Riba with no SX either, and I too wondered if I got some placebo or something.

 But I am not going to "borrow" trouble and hope this medication is doing the trick.

  I too don't like to leave my "magic" unattended for long periods of time and am nervous when the goods are delivered to my door step.

Best wishes and continued good luck for the rest of your journey!

[NYCHEPCMAN]

mamamia888 - yes I am getting nervous about the next delivery. Best of luck to you as well.

I am happy we can share our experiences with folks starting Viekira so they arent so nervous. 

[slats1056]

 NYC AND Mamamia,  Have You guys gotten obsessive/compulsive about counting the pills yet. It used to bug Me to no end. Knowing  how many are there but counting them again anyway!!! Never worried about leaving them, just how many were there when I got back! LOL!

[mamamia888]

 Slats,

 Yes I also am experiencing a bit of OCD with my pills  ,especially the Riba which comes in one bottle for 28 days. I didn't count them at first but counted every last one of them at the end of week 3 just to make sure I didn't take too many (or not enough) or I wasn't slighted by the pharmaceutical company. It's a crazy journey for sure!

[NYCHEPCMAN]

Yes, I keep looking at the # of packs in the weekly box. Its visually pleasing in a way...and I thought I'd have to take off from work. I am very grateful.

[AussieRosa]

LOL I get worried about having a small fortune in meds in the house when I'm out too. I also worry that there'll be a fire during the night and with having to grab the cat in one arm will I be able to grab the 2 boxes I've got left too. Ah, silly me. It does keep nagging at the back of my mind though. It's hard to believe those boxes are worth so much. I am truly grateful to have them.

Glad you're both not experiencing any sides. Really hope it continues that way throughout your treatment. Not everyone gets issues and it looks like you've both lucked out. With that kind of luck you'll surely SVR too! 
Rosa

[slats1056]

 Isn't it strange how widely varying Sx's are for all of us , yet some things are the same even on the different Meds?

 HAPPINESS LIES IN GOOD HEALTH AND A BAD MEMORY!

[mamamia888]

Thank you , Rosa!

I am very grateful not to experience any SX thus far. Hopefully my luck continues.

I hope you are faring well with your TX. I see you started your treatment one day before me.

[AussieRosa]

Yes, we're neck and neck to the finish line. There seems to be a lot of us on the VPak at the moment, which is great. It's really helpful to have company along the way.

I notice your ferritin levels are high. Was this pretreatment or after you had started? Mine was elevated about 2 weeks in and the doc told me to stop taking my multivitamin. I will get the result of the next lot of bloods next week. The doc tested for hemochromatosis due to the ferritin level. What did your doc say about it?

[mamamia888]

Rosa,

 These numbers Iv'e posted are pretreatment. I've now had 3 blood tests since I started TX, and have no idea what any of it means except that the ALT and AST have gone down a bit after the second test . I don't think I will have another VL test unless it was performed with my last tests. I have a paper with a multitude of words and numbers and abbreviations  with no clue of what it all means. I am just waiting to hear the word "UNDETECTED" then we celebrate.

[AussieRosa]

Fair enough, Mamamia. I get pretty overwhelmed by all the different tests and what they all mean. I only pay attention when they're out of normal range. Even then I'm always reluctant to turn to Dr Google because I'll end up scaring myself. But as you say, the all important word/result is the big Undetected. Onward to that!

[NYCHEPCMAN]

Just got my four weeks blood test results....

Hep C virus by PCR   <1.18 NOT detected, <15 not detected IU/Ml

AST 18
ALT  25

Needless to say my family and I are thrilled and thankful for the new medications.

[Philadelphia]

Those are some good looking numbers NYCHepman. Especially the UND. Congrats

[NYCHEPCMAN]

Just wanted to update you with the news: just got my final results back- - I acheived SVR! I was a little nervous waiting for the final results but my doctor said he would be extremely surprised if I wasn't given how effective the new Medications are!! Thanks to all for your support and information- I feel like a new person. 

[Lynn K]

Congrats NYC now go out there and enjoy your hep C free life!

[Philadelphia]

Great news! Congrats.