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Post Info TOPIC: Newly diagnosed
lamassu


Senior Member

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RE: Newly diagnosed
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Hi Pam,

Welcome to the forum! Your Genotype 2 HCV has the highest cure rate with Epclusa, I have seen figures of 98% to 100% depending on the study. Even if you have to take out a loan to afford the Epclusa you will extend your life and you can't put a price on that. After you have been cured you will probably see your F score go down after a year has passed. You will feel so much better. I assume your GI emphasized no alcohol at all for the rest of your life. With Hep C drinking is like pouring gasoline on a fire. There are some docs who feel one or two drinks a week after you are cured is OK but mine does not feel it is worth taking a risk. Best wishes for your treatment, it will be over before you know it.



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Male, 67, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24. 8/15/19 F2 8.8 kPa.
MissusB


Veteran Member

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The treatment time passes really quick.  I was surprised at how fast it went.  I wasnt a big water drinker till i started treatment so the worst part for me was peeing every 30 minutes.  Still try to drink 3-4 bottles of water a day.  



__________________

66 yr old female; polio survivor; hbv that wasnt treated but cleared; chronic hcv gt1a; diagnosed 2018 but likely infected during surgery as child; Metavir score F2-F3; mild to mod fibrosis; RNA 3,951,412; AST 40; ALT 47
Observer


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Oh that class makes sense...answer all your questions and explain everything to you...I had such bad brain fog before I was treated my nurse/guide checked in with me via phone every few days at first, and I had to do blood tests every week during my treatment, the drug company also phoned me once a week to keep track of me...

for me the hardest thing was eating before the pills..I had to and i was on twice a day pills (12hours apart) and I never eat until mid to late afternoon ...been that way for years...so as silly as it seems..that was my biggest adjustment 

So class on the second? Pills soon after? ....you will get to start the new year virus free...hurray



__________________

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

4 years.... successful dragon slayer 
5-1-18


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hi pam

i think that class sounds awesome... that should be offered to more ppl i think.

yea, hubs did his nov 2017 and me in may 2018. he was still recovering when i went thru it but we managed somehow blankstare

so you are starting 12.5.19?

 



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0
Iris Dragonfly


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Hi from me too!

Glad the ducks are lining up for you. The time will go by before you know it.biggrin Your viral load is pretty low, you'll be fine,  your fibro score is at the level they will treat. I had a hard time getting treatment because my fibro wasn't high enoughhmm hope Kaiser doesn't do something like that to you. So let us know about the ultra sound, and what a Yule gift? eh? you'll be well on your way to healing.

Blessings, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
PamBee


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Hey 5 & Observer :wave:

Im not entirely sure what will happen in the class. I think they will go over any meds/supplements I may be taking again and make sure I can afford the copay for all three months. The rest remains a mystery. Ill be sure to check in and tell you though. smile

Got the results of my fibroscan today, F2. All thats left is an ultrasound on the 21st and the mystery class on the 2nd. Stuffs gettin real! 

One of my sisters has hashimotos too, Observer. Its really interesting how it hits one family member and not another. Thankfully, its fairly easy to treat for most. Glad your sister is doing well too! 

5, I cant imagine what it must have been like having both you and your husband having to go through this. At least it wasnt both at the at the same time. Glad youre both well now biggrinbiggrinbiggrin

Take care

Pam



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Pam

F, 56, DX 10/2019, TX Pending, GT 2B, F2, VL 250,000
5-1-18


Guru

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oh yea, this forum was a life saver during my tx on harvoni.... my hubs [not really married but together 27yrs

; i still call him hubs at times. , anyway he did it before me so wanted to forget the whole thing by then

anyway, we managed well enough thru it

and for me it was the forum that helped me day and nite



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0
Observer


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I think Hashimoto is one of the most common immune disorders for women...my sister has it and her meds have made such a difference...it was such a relief for her to get diagnosed and treated...

Im glad you have yours under good control.

I know what you mean about telling people or not telling people....  and even if you tell people they rarely have a clue about what the virus actually does to us and often (in my experience) jump to incorrect conclusions. So  I too am glad to have this forum..it helped so much to meet people that can relate... Even though Im  now 4 years cured...I still need this group ...shared experiences smile

that Dragon slayer title will be yours in a few short months.. let us know what they teach you at the class..



-- Edited by Observer on Sunday 10th of November 2019 03:51:16 AM

__________________

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

4 years.... successful dragon slayer 
5-1-18


Guru

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what class will you take pam?



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0
PamBee


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Thanks, 5! Cheers!  biggrin

 

Yes, Observer, I am on Levothyroxine. Had a partial thyroidectomy years ago so mine needs a little assist now. It does a good job though, labs are in normal range and energy level, weight etc are in a good place. 

Yes! Totally chomping at the bit! I hate the idea that this virus is in me doing who knows what and cant wait for it to be gone. Have a telephone appointment with my doctor this week to go over labs and next steps. Pretty sure all that is left is heb a and b vaccinations, an ultrasound and a class. Then its go time and I get to add Dragon Slayer to my resume.

Really grateful to have found this group  I havent told many people I have hep c and its nice to have a support group  biggrinbiggrin

 

 



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Pam

F, 56, DX 10/2019, TX Pending, GT 2B, F2, VL 250,000
Observer


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Oh yay Pam, Im so glad you have a good GI NP...and am also glad you are getting used to drinking water.

Are you on medication for your Hashimoto? 

December? You must be chomping at the bit to get started but it will be quick and the results...amazing 



__________________

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

4 years.... successful dragon slayer 
5-1-18


Guru

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good going with the water pambee



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0
PamBee


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Thanks for the welcome, Observer! 

Im focusing on staying positive and trusting that the treatment will be successful and come with few side effects :) 

Yes, I am under the care of a wonderful GI NP. Shes been super helpful and things are moving along very quickly. Hoping to begin treatment early December. biggrin

Sorry you have had debilitating immune problems. This virus sure does seem to cause a whole host of health issues. no Glad you they have diminished since you were cured

Working on drinking more water. Almost up to a gallon. Figured I may as well start early and get used to it before starting treatment. smile

 

Take care,

Pam



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Pam

F, 56, DX 10/2019, TX Pending, GT 2B, F2, VL 250,000
Observer


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Welcome from me too Pam 

You will feel so much better without the HCV in your system and the new daas are pretty easy on most people. 

Do you have a good specialist to guide and care for you through the bloodtests and scans etc?

You have a great group of helpful caring people here...so glad you found us...biggrin

I have had pretty debilitating immune problems from having had HCV for 32 years and the severity of those have improved hugely since I was cured. I hope it will be the same for you.

prepare to drink a lot of water when you do start treatment....a LOT of water ...

it makes a big difference on whether you get side effects or not and really helps to flush the virus out of your body.

I still drink copious amounts  smile

 



__________________

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

4 years.... successful dragon slayer 
PamBee


Member

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Posts: 9
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Thats great to know, MissusB! Ill ask the pharmacist about a grant once they they call me. Hoping that will be by the end of the month once all my tests are done and results are in. Thank you!



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Pam

F, 56, DX 10/2019, TX Pending, GT 2B, F2, VL 250,000
MissusB


Veteran Member

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Welcome Pam!  You will be so glad you found this forum!  My IC Doc was able to get me a grant to cover the cost of Mavryet that wasnt covered by my insurance.  Took awhile, but was finally approved. 



__________________

66 yr old female; polio survivor; hbv that wasnt treated but cleared; chronic hcv gt1a; diagnosed 2018 but likely infected during surgery as child; Metavir score F2-F3; mild to mod fibrosis; RNA 3,951,412; AST 40; ALT 47
PamBee


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Thank you, Cheddy! Im really looking forward to getting treated and getting his virus out of my body! Im actually feeling well, thanks for asking :) I suspect a couple of other health issues I have (hashimotos & insulin resistance) may be related to hep c, but I am fortunate to still feel well. Appreciate the welcome and kind words!



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Pam

F, 56, DX 10/2019, TX Pending, GT 2B, F2, VL 250,000
PamBee


Member

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Thank you! Tig! Those links are going to come in very handy! Appreciate you taking the time to share them with me



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Pam

F, 56, DX 10/2019, TX Pending, GT 2B, F2, VL 250,000
Cheddy


Moderator

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PamBee,

It looks like our pals here have covered the bases. I would like to add my welcome.

It sounds like you have all your ducks in a row.  How are you feeling?  What a great time to get treatment, starting with the fact that treatment now exists 

(!) and most folks are finding pretty smooth sailing with minimal side effects.  I look forward to hearing how it goes for you.

Take healthy care of yourself.

Cheddy



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GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 
Tig


Admin

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Welcome to the forum! Im glad you found us and hope we can help you by answering your questions and concerns. We have a lot of knowledgeable and caring friends here and look forward to the day you can celebrate the end of your Dragon's existence!

Here's some information on payment assistance through Gilead's Support Path program. It may help you with those copays. There is a link in my signature line to a number of organizations that provide help. Im going to copy and paste some info below on Support Path, give them a call when you're able. They have helped many of our members obtain payment assistance.

 

The Support Path™ patient assistance program assists eligible Hepatitis C patients in the United States access Sovaldi®(sofosbuvir), Epclusa® (sofosbuvir/velpatasvir) or Harvoni®(ledipasvir/sofosbuvir). The program offerings include:

  • A call center staffed with associates trained to help patients and their providers with insurance-related information.
  • Access education and support, such as a 24/7 nursing support service line.
  • Co-pay Coupon Programs, which provide co-pay assistance for eligible patients with private insurance who need assistance paying for their out-of-pocket medication costs. Most eligible patients will pay no more than $5 per co-pay (restrictions apply). Not valid for patients enrolled in government healthcare prescription drug programs, such as Medicare Part D and Medicaid. Patients in the coverage gap known as the "donut hole" also are not eligible.
  • The Support Path™ Patient Assistance Program will provide Sovaldi®, Harvoni®, or Epclusa® at no charge for eligible and qualified uninsured patients.

To learn more about Support Path™, please call +1 855 769 72846, Monday through Friday between 9:00 a.m. and 8:00 p.m. (Eastern Time).



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
PamBee


Member

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Thank you, 5! I appreciate the welcome! <3  Have been reading posts here and seeing so many having good results with the new daas makes me feel very hopeful!

Pam



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Pam

F, 56, DX 10/2019, TX Pending, GT 2B, F2, VL 250,000
5-1-18


Guru

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welcome pambee , i'm so glad you found us. this is a great bunch of friends to walk with you on your treatment and beyond.

the good news is the new daa's really work

there might be a few programs that will help you thru the specialty pharmacy. 

i know that others will be along to add more knowledge.

5 



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0
PamBee


Member

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Hi all!

I am recently  diagnosed with hep c, found out after donating blood for the first time. Have so far had the diagnosis confirmed by my primary and met with my GI. Had some initial blood tests for liver function, have a Fibroscan scheduled for this Tuesday and am waiting for an ultrasound appointment. My GI is waiting for all of the tests to be completed to know for sure, but said I will most likely be given Epclusa  Are there any members with Kaiser insurance out there? The hypothetical copay my doctor mentioned (5,000 per month) has me worried  hmm

 

 



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Pam

F, 56, DX 10/2019, TX Pending, GT 2B, F2, VL 250,000
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