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Post Info TOPIC: Recently diagnosed but hopeful


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Recently diagnosed but hopeful
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Just caught up with the updates Annie, great news about fibroscan score, and hopefully getting Epclusa! Really happy for you, agree with all those who posted earlier, it is worth a little wait, especially since your doctor recommended it! 



-- Edited by Ashenvale on Thursday 24th of January 2019 04:15:50 PM



-- Edited by Ashenvale on Thursday 24th of January 2019 04:22:29 PM

__________________

58 y.o, diagnosed on chemo - resolved B, chronic C (3a).  Nov 2018 AST 238 ALT 234 Fibroscan 7.9. Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019.  Entecavir for B (to prevent reactivation).

Updated 4 wk test - AST 25 ALT 25 Hep C RNA not detected. Chemo restart 8 Feb 

 



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Hi Annie,

Yeah, that's a great fiber score. It's sounds like your good doctor thinks it's fine to wait, and Epclusa gets the rave reviews. Personally, I'm not very good at waiting, but having a chance to get organized is good. I like 5's idea, to include some pampering.  It's the opposite of fretting. 

As Obs points out, it will all be over by July. There is already much to celebrate.  You're going to be cured!  

Woohoo.

 



__________________

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

 



Guru

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Sounds like you do have a really good specialist. Sorry you have to wait, but these Drs know the ins and outs of the treatments and how to get what the patient needs paid for. 

Mine also adjusted my treatment regime to make sure Id clear the virus (our medical system would only pay for 8 weeks of Harvoni but my tests showed him I needed 12 weeks to succeed so I did a different regime)  

It really isnt too long (with those good enzyme numbers and low f score you can afford to wait) and hurray... you will be cured by July.

 



__________________

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

3 years...post tx... successful dragon slayer 



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Canuck, my hep doc is definitely one of the best.  He's been treating hep c since the early interferon trials.  His goal is to get as many people as possible checked for hep c and have it eradicated by 2030.  He's also training family doctors on what to look for so they can test and even treat.

He had access to all my files and said the hep a and b all look good.  He did ask if I had a U/S but didn't mention it after the fibroscan.

He didn't say what the side effects of Mavyret were but I was chatting with a couple of his nurses afterward and they said that whenever Mavyret was prescribed they spent a lot of time on the phone helping patients but with the Epclusa they rarely heard from them except for regular appointments.

 



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



Guru

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sounds good annie, i waited till i was on medicare too. now you'll have time to prepare things around the house for when you might not feel like doing as much. 

i got facials and loaded up on groceries, sprayed for spiders.... anything i could think of before my treatment started



__________________

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.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



Guru

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Hey Annie,

Glad to see your post-appointment update. 

A lot of docs DO wish to give epclusa to their GT2's. If that is what your hep doc wants for you, go with it, I would. If the insurance coverage situation dictates a need to wait a little longer in order to get this epclusa (at no additional cost to you), so be it this short delay. Your Fscore is low, you have a nice low ALT at 10, the (added) time you would be required to wait is not too long (relatively ... compared to how long you have already been packing this virus!), and, if this added wait means you get a preferential drug treatment (one of the best for GT2's) at no cost to you, then your docs plan is good and it could make quite a positive difference.  

I did not like the wait either - dx started Jul 2015, rx started Apr 2016.

I know you are probably anxious to get going, but at least you have a firm known "start date" in 3 months from now, and this gives you opportunity to clear a planning path forward to it now.

So, your hep doc must have his own fibroscan? - that's great that you had one done, and that they found your Fscore low.

Did he say you were going to have an abd. U/S? You could phone his office back and request one, it could be done while you are waiting for your epclusa

What did he say about all of your immunity testing/records/immunization, past or recent?

What was your hep doc like - did you find him OK? C.

BTW - How did your son make out with his surgery?



__________________

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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Annie wrote:

Had my first visit with the Liver Specialist yesterday.  Good new and kind of bad news.  The good news is that the fibroscan showed f0.  Very happy with that!  Bad news is that I won't be starting treatment until May 9 if I want to do Epclusa.  I'll try to explain.  I'm covered by two insurances and I turn 65 in April.  If he submits Epclusa to either of the insurances, they will deny and offer Mavyret.  He does not like the Mavyret side effects so, since I'm f0, he felt it would be better for me to wait until after I'm 65 when the government payment kicks in and they will pay or co-pay for Epclusa.  Either way it will be completely covered.

So, I go back May 9, have some bloodwork done and pick up the prescription.  By July 31 I'll be done and cured!


 Annie, the F0 is great news! I'm really happy for you. I agree with the doc. It's hard to wait but with no liver damage, it will be worth it to save that $$ and have the preferred Epclusa. Did he describe the side effects of Mavyret? (Just curious.) Also, I hope your Rx is approved and ready by 5/9. It's a 12 week course. My first appt. with the liver specialist was 10/30/18. Today is 1/17 and I'm still waiting to get on the Epclusa.  



__________________

Gail Tanner

65

Female

Genotype 2

Fibrosis stage: F1-F2 (minimal fibrosis/scarring)

Diagnosis date: 10/30/18

Treatment started: 2/9/19

HCV medication: Epclusa

Viral load: 3,292,271 Iu/ml 

AST: 25 (normal)

ALT: 26 (normal)

ALP: 81

CAP: 226 <10% fat

ANA: 12.8 

No prior HCV treatment.

5/14/19: NO HCV DETECTED!!



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Had my first visit with the Liver Specialist yesterday.  Good new and kind of bad news.  The good news is that the fibroscan showed f0.  Very happy with that!  Bad news is that I won't be starting treatment until May 9 if I want to do Epclusa.  I'll try to explain.  I'm covered by two insurances and I turn 65 in April.  If he submits Epclusa to either of the insurances, they will deny and offer Mavyret.  He does not like the Mavyret side effects so, since I'm f0, he felt it would be better for me to wait until after I'm 65 when the government payment kicks in and they will pay or co-pay for Epclusa.  Either way it will be completely covered.

So, I go back May 9, have some bloodwork done and pick up the prescription.  By July 31 I'll be done and cured!



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



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Annie you got this. The ASTRAL-2 study showed 99-100% of patients with HCV genotype 2 reached SVR12. Having HCV sucks but you have the genotype that responds best to treatment with Epclusa. Hope you get started soon.



__________________

Male, 66, 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. Week 10 VL not detected, ALT 12, AST 18. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24.



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Thanks, Tig!  That makes me even more hopeful :)



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment

Tig


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Here’s an interesting fact sheet on Epclusa. Just look at those success rates!

Epclusa Facts



__________________

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 5+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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Thanks for the encouragement, everyone!  If not for all of you, I would just be muddling my way through.

Canuck, when the secretary called, I asked if I could be put on the cancellation list.  She told me they don't have one but they did have a sudden opening for next Wednesday.  I did it!  I've been advocating for friends and family for a long time but it's different when it's for me.  I also asked what I could do to speed things up and they said my GP only sent the results of the VL and nothing else but that once the consult is done things usually go quickly.  I'm taking everything in writing that I have and starting a list of questions.  This guy has been working with HepC patients for a long time so I'm very confident that he knows the system and will get me healthy soon.



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



Guru

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Yay Annie, 

so glad you are getting in a couple of weeks earlier.smile

UND by your birthday smile



__________________

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

3 years...post tx... successful dragon slayer 



Guru

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Hey Annie,

That's great you got a Jan 16 appointment (versus the Jan 31 one) - is that because you had put your name in previously for a cancellation appointment (like Obs had suggested)?? 

Did that "getting on the cancellation list" thing actually work for you, or did they just arbitrarily change their own minds, and appointment date, all on their own?

That would feel pretty good if you knew things were happening faster, due to your own good work at making it happen so!

Hope all goes well at the appointment. Tanner is right, take along with you a written list of all your questions/and ALL the requests you can think of that would like to make. I hope you find the doc and staff are nice. I am sure your family doc will have made sure to keep your hep doc informed of your up-to-date flu vaccination, but if you did manage to get your pneumococcal from Public Health as well, take any of your immunization(s) paper evidence with you, to your hep doc appointment (might be helpful). See if you can get them to order you the fibroscan and the abd. U/S, and get them to confirm your that hepa/b immunity-level blood tests have been done.

Shouldn't be long now before you can get going. 

I know you have a lot on your plate, but (only) when you can, keep us posted on all, including what is happening with your sons surgery and the construction! Stay calm, stay methodical. 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


Admin

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Let’s hear it for Annie!  WOOHOO  

Time will go by quickly and you’ll be on your way to a happy, Hep C free life. Take this time to start hydrating and eating well. Get yourself ready for battle. Just know this, treatment has never been this easy and effective. Stay with us and we’ll have you in fighting shape in no time, ha!

You‘re one of the lucky ones. Everyone reading these pages are considered lucky. Lucky to know and lucky enough to treat with these blockbuster drugs. You’ll do just fine!



__________________

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 5+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



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So happy for you, Annie!! Sooner is better than later!



__________________

Gail Tanner

65

Female

Genotype 2

Fibrosis stage: F1-F2 (minimal fibrosis/scarring)

Diagnosis date: 10/30/18

Treatment started: 2/9/19

HCV medication: Epclusa

Viral load: 3,292,271 Iu/ml 

AST: 25 (normal)

ALT: 26 (normal)

ALP: 81

CAP: 226 <10% fat

ANA: 12.8 

No prior HCV treatment.

5/14/19: NO HCV DETECTED!!



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Good news, Annie.  You're on your way!



__________________

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

 



Guru

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yay annie !



__________________

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.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Had a call from the liver specialist and my appointment has been moved from Jan. 31 to Jan. 16.  It's just a consult so not sure if the fibroscan will be done then.  It sounded like the insurance company has to approve the claim before any procedures happen but it was estimated that treatment will start in 6 weeks or less.  I'm currently covered by two insurances until April(when I turn 65) so I don't see any problem.  I'll know a whole lot more a week from now.  Let's go!!



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



Guru

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since this is Annie's thread i will take my response to tanner's thread



__________________

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.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



Guru

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moved


-- Edited by 5-1-18 on Monday 7th of January 2019 07:25:41 PM

__________________

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.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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5-1-18 Isn't Harvoni the really expensive one ($96K)? Mavyret is $26K for 8 weeks. 



__________________

Gail Tanner

65

Female

Genotype 2

Fibrosis stage: F1-F2 (minimal fibrosis/scarring)

Diagnosis date: 10/30/18

Treatment started: 2/9/19

HCV medication: Epclusa

Viral load: 3,292,271 Iu/ml 

AST: 25 (normal)

ALT: 26 (normal)

ALP: 81

CAP: 226 <10% fat

ANA: 12.8 

No prior HCV treatment.

5/14/19: NO HCV DETECTED!!



Senior Member

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Annie, wow. 1974. Did you get a letter from your county's board of health? I did after my primary let me know. I didn't even know what it was. I thought it was some sexually transmitted disease. When she told me, I said that's impossible, I've had the same partner for 35 years. Hahahaha. 

I know they didn't start safeguarding transfusions/testing blood until 1992 (I think as a result of the AIDS crisis?). I've also learned now about the carelessness of the use of syringes in hospitals, needle sticks, etc. A friend of mine contracted HEP C in the military where the same needles were used over and over for immunizations back in the 70's. She is on the National Board of Liver Disease or something like that and she says there are very high rates of Hep C as well among barbers, hairdressers, manicurists.

I am sorry to hear of your fatigue. I too have experienced that for years but attributed it to my anti-seizure meds. It's gotten worse in the past few months, which makes me think I am being psychosomatic.

Just a note: when you meet with the liver specialist, you may want to have certain questions ready to ask him/her. I wish I had. People on this thread are asking me them now (like Canuck's questions) and I didn't know what questions  to ask.  And you should get a fibroscan and ultrasound done if you can. It was the first thing I had done when I met with the liver specialist, as well as at least another dozen blood tests. 



-- Edited by tanner on Monday 7th of January 2019 12:55:08 PM

__________________

Gail Tanner

65

Female

Genotype 2

Fibrosis stage: F1-F2 (minimal fibrosis/scarring)

Diagnosis date: 10/30/18

Treatment started: 2/9/19

HCV medication: Epclusa

Viral load: 3,292,271 Iu/ml 

AST: 25 (normal)

ALT: 26 (normal)

ALP: 81

CAP: 226 <10% fat

ANA: 12.8 

No prior HCV treatment.

5/14/19: NO HCV DETECTED!!



Senior Member

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Canuck, I am sorry to hear about your family members who died of an AVM. You probably know that it is NOT heredity. The vessels just do not form correctly in the fetus. It's a terrible "coincidence" that both of them died of the same thing.

Btw, I don't know how personal we are allowed to be but where in Canada are you? My neurosurgeon, who saved my life, was Canadian. He was here in the states for awhile at the Cleveland Clinic, but then went back to Vancouver. I am married to a Canadian and my own family built a cottage up in Muskoka Lakes Ontario 50 years ago, where we go EVERY summer.     



__________________

Gail Tanner

65

Female

Genotype 2

Fibrosis stage: F1-F2 (minimal fibrosis/scarring)

Diagnosis date: 10/30/18

Treatment started: 2/9/19

HCV medication: Epclusa

Viral load: 3,292,271 Iu/ml 

AST: 25 (normal)

ALT: 26 (normal)

ALP: 81

CAP: 226 <10% fat

ANA: 12.8 

No prior HCV treatment.

5/14/19: NO HCV DETECTED!!



Member

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I'm more than happy to share my thread, Tanner, but thanks for starting your own.  

I too was diagnosed in October after donating blood.  When I opened the letter from them saying I had Hep C, it did feel like I just got smacked.  How, what, where??  The most likely culprit for me was a blood transfusion in 1974 so I've probably been carrying this thing around for a long time.  Like a lot of people, I've had no real symptoms other than I have been complaining of fatigue that's been getting worse for the last few years.  Not sure if it's the Hep C or something else.  All my bloodwork keeps coming back normal so...

I have an appointment with a liver specialist Jan. 31 and taking the advice of many on this forum by getting my flu shot and pneumonia shot and trying to get as much done before the appointment so we can just get going and slay this dragon!



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



Senior Member

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5-1-18, Canuck, Tig. Thank you all. I just realized I was reading your posts, "Guru" is the name under the pix and I kept thinking it was Guru I should respond to. Duh. I have started my own thread at the advice of some of you and will answer questions there, if I can remember them. blankstare 



__________________

Gail Tanner

65

Female

Genotype 2

Fibrosis stage: F1-F2 (minimal fibrosis/scarring)

Diagnosis date: 10/30/18

Treatment started: 2/9/19

HCV medication: Epclusa

Viral load: 3,292,271 Iu/ml 

AST: 25 (normal)

ALT: 26 (normal)

ALP: 81

CAP: 226 <10% fat

ANA: 12.8 

No prior HCV treatment.

5/14/19: NO HCV DETECTED!!



Senior Member

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Tig, now I scrolled down and saw your other message. I am sorry I am doing this on the wrong thread. It's confusing. I'll just start a new one now with the very first post I made yesterday. 



__________________

Gail Tanner

65

Female

Genotype 2

Fibrosis stage: F1-F2 (minimal fibrosis/scarring)

Diagnosis date: 10/30/18

Treatment started: 2/9/19

HCV medication: Epclusa

Viral load: 3,292,271 Iu/ml 

AST: 25 (normal)

ALT: 26 (normal)

ALP: 81

CAP: 226 <10% fat

ANA: 12.8 

No prior HCV treatment.

5/14/19: NO HCV DETECTED!!



Senior Member

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Date:
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Tig, I am sorry. I replied to your message accidentally adressing Guru. Please read my message to Guru, because you were the recipient. And Guru, thank you as well for your encouraging words. 



__________________

Gail Tanner

65

Female

Genotype 2

Fibrosis stage: F1-F2 (minimal fibrosis/scarring)

Diagnosis date: 10/30/18

Treatment started: 2/9/19

HCV medication: Epclusa

Viral load: 3,292,271 Iu/ml 

AST: 25 (normal)

ALT: 26 (normal)

ALP: 81

CAP: 226 <10% fat

ANA: 12.8 

No prior HCV treatment.

5/14/19: NO HCV DETECTED!!

Tig


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Hey Tanner,

Welcome to the group, I'm happy you found us! FYI, this thread belongs to Annie. Please start a new thread in this same section. We don't want to hijack her thread.

While true, the virus can live undetected in our systems for decades. Sometimes the damage is minimal over time, but many times it can aggressively attack our liver and many other systems. Sometimes people mistake the damage from chronic HCV with other illnesses and if you're not tested specifically for HCV, treatment for other things proceeds. The fact that you're an F1-2 only shows fibrosis levels, not specifically disease. While fibrosis is never desired, it doesn't become cirrhosis until it reaches F4.

I want you to review any number of the posts/sections in our Knowledge and Information and Forum Information sections. Many of your questions can be answered there. Of course, if you have anything specific you'd like answered, let us know.

Harvoni can be an 8 week treatment, provided your PCR viral load test is 6 million IU/ml or less. Canuck's reference to EOT, stands for End of Treatment. Once treatment in completed, the PCR Viral Load testing is done again, searching for active virus. If you remain undetected after 12 weeks from your end of treatment date, you are considered SVR (cured). SVR stands for Sustained Viral Response, meaning the undetected viral load is viable and sustained. It's what we all strive for.



__________________

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 5+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



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Thank you, Guru, for your encouragement. I'm working with a gastroentologist (never needed before this). I've had the fibroscan and ultrasound which is how she determined the stage (1-2) and the scarring. I cannot remember the genotype but I can ask. I think 1. 

I know there is no way of knowing this, but if I'd had it for decades, would the damage be worse? Would it have progressed further? People say you may not know for 40 years, until it's too late. I guess what I'm trying to ask is, because I'm "only" between 1-2, what's the best "guesstimate" for when it was contracted? There's new info and research out there about our age group (born between 1945-1965) and how it looks like the medical profession needs to take responsibility for this. I can post links later.

You mentioned harvoni. Is that an 8 week treatment like Mavyret? You said you were undetected at 13 weeks EOT. What's that?

 



__________________

Gail Tanner

65

Female

Genotype 2

Fibrosis stage: F1-F2 (minimal fibrosis/scarring)

Diagnosis date: 10/30/18

Treatment started: 2/9/19

HCV medication: Epclusa

Viral load: 3,292,271 Iu/ml 

AST: 25 (normal)

ALT: 26 (normal)

ALP: 81

CAP: 226 <10% fat

ANA: 12.8 

No prior HCV treatment.

5/14/19: NO HCV DETECTED!!



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Hi Tanner,

So sorry for your troubles but really glad you found us and joined here. We will all try to help if we can.

"Annie" is a newcomer to this site too (on this thread). And just today we have also had "Ashenvale" join us as a newbie on a different thread. Other newcomers and us oldsters are here to commiserate with you and to keep you company.

We have had many here, especially in the past, find frustration in having to wait to be approved for treatment, I agree with your thoughts and sentiments about approval issues and delays wholeheartedly, you will find many here who feel and think the same. We have seen the wait times improving now for many but only somewhat recently with the easing of Fscore requirements and other hindering dictations and limitations being lifted. It IS better for some than it used to be.

Some insurance providers seem to easily refuse the first request, and make doc and patients jump hoops/appeal, almost a like a "delay" tactic to slow down the speed and flow in the line-up of those needing treatment.

I hope (and I am betting) that your appeal WILL be successful - your doc (depending on how many times he has done applications and appeal processes before) may have a pretty good idea that the appeal IS going to work for you.

Is it your family doc or is it your hep doc that has done the application and now the appeal for your treatment drugs?

I have in-laws where senior/mature male father died with unknown AVM, and shortly after, his daughter (with husband and children) also dies with an unknown AVM! Needless to say, everyone in the immediate family also got checked out for AVM's and no others found. What a series of events you have had to endure. What a strong person you must be!, to have survived, and to have worked with ALL this. Unreal! I am sorry for what you have had to go through and still work through. 

I hear you about the "stunned" part - many of us have felt that stunning slap, it will get better tho, you will get this virus treated and cured and you will get over this hep c hurdle. Just VERY not needed just now (understatement)!

Can you tell us a bit more about what GT you are, and what some of your lab test results are? Have you had an abdominal ultrasound?, or a Fibroscan? Did they check your hep a and b immunity levels?

Looking forward to getting to know you better and to assist if we can. : ) 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 tanner. my ins. denied mavyret but ok'd harvoni which worked for me. i was undetected at 13 weeks eot.

they would ok mav if the harvoni didnt' work.

good luck with all of this; going thru all this red tape really makes the treatment easier to take tho.

other ppl have had the same probs. with ins.

hang in there.

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.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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New here. Nice to meet you all. Diagnosed in October and completely stunned.

My personal health history is already complicated. Ive been in and out of hospitals for a long time. In 1999 I had a massive bleed in my brain caused by a ruptured AVM (arterio-venous malformation). An AVM is where your capillaries lead directly to a vein instead of an artery. This is a condition you are born with and dont know you have until theres a rupture of the blood vessels or debilitating headaches. Mine ruptured. Had an emergency craniotomy where the vessels were tied off and a clip was put in my brain. A year of physical, occupational and speech therapy helped a lot. But I have struggled with balance, coordination, strength for these past 20 years, the result of which is a lot of falls and weakness. BUT I got to live. The scar tissue however shifted about 10 years later and now I have seizures.

 

So now HepC????  My doctors request for coverage was denied under my Medicare Part D benefit for Mavyret. My current liver status is between 1 and 2. We are appealing the denial. I guess they want the disease to progress enough that you hit stage 4 when cancer develops or a liver transplant is necessary OR they dont have to pay a claim if you die instead. I know thats cynical but why would insurance deny something thats a possible cure so they dont have to pay for more costs down the road?



__________________

Gail Tanner

65

Female

Genotype 2

Fibrosis stage: F1-F2 (minimal fibrosis/scarring)

Diagnosis date: 10/30/18

Treatment started: 2/9/19

HCV medication: Epclusa

Viral load: 3,292,271 Iu/ml 

AST: 25 (normal)

ALT: 26 (normal)

ALP: 81

CAP: 226 <10% fat

ANA: 12.8 

No prior HCV treatment.

5/14/19: NO HCV DETECTED!!



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annie, venting helps us get thru this. So please vent as needed. We all went thru this so we do know how you feel

5



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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.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Annie,

It can't be repeated enough how key keeping well hydrated is to minimizing side effects from any DAA for HCV. The docs don't stress this enough in my opinion. When we say fill a gallon jug with water and drink the whole gallon daily we are not kidding. It really does make a big difference. Its a hard habit to break I still probably drink half a gallon a day even today.



__________________

Male, 66, 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. Week 10 VL not detected, ALT 12, AST 18. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24.



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Annie,

Dump away - and do not apologize for it either. This is the right place to do that - Dump HERE!

My goodness, when i start to feel sorry for myself i will just remind myself just what all has been on your plate for some time now and how well you have been mustering through! You have certainly been juggling a LOT. I am so sorry about the loss of your kitty and that sounds scary your sons repair, and of course the house issue! OMG, sounds like waaay too much.

Considering all, you have done remarkably well to stay on track dealing with everything and now doing everything you need to do to get ready for your HCV treatment.

Good for you (really!) for going and getting your flu shot, and for making sure you got your pneumococcal (come Monday) even though your GP did not make it easier for you and you had to get it through Public Health. Bravo you are making these extra efforts to try to get as much done as you can on your own, so as to clear the path as best you can. Good you put in a request for the hep doc cancellation appointment (ya never know).

I know as i prepared for treatment, that wait felt like an eternity until I could get started on my "Day one", and until Day one it made me feel a little better knowing i had done/completed everything I could think of to get the best treatment possible for myself, as quickly as I could.

You could ask your GP for both the fibroscan or abd.ultrasound requisitions, the worst your GP can say is no - but if you explain to your GP that these basic assessments will be helpful and likely required info for your HCV treatment and that you would like them completed as soon as possible, that it would just be a further delay waiting for the hep doc to order them when the GP could go ahead and order them now, your GP might give you the reqs for both now. Check around and find out who (where), what facility nearest to you actually owns a fibroscan machine and where it is that you can go have one done - your GP may not be "up" on this. (Semantics/terminology - a fibroscan is also called "transient elastoplasty"). If your GP has not been ordering any fibroscans for his pts, he may not be up on where to send you to - so, providing your GP with the contact/location info where the fibroscan machine lives may be helpful to him in providing you the req. more easily. (Ya never know! - your hep doc may have a machine right in his own office or building and plans on fibroscanning you as soon as you are there? - some hep docs do have their own fibroscan machines, others do not and can/will send you elsewhere to have them done, in some cities/areas sometimes there are only a few machines available.) You could ask your hep doc office IF they DO have their own machine, and/or, where you can go to get a fibroscan done.

If you are doing well going to the gym, and it feels good and right, keep doing that, by all means (as long as it feels good, makes you feel better). You may not feel much different "on-treatment" than how you do now as far as going to the gym is concerned. Like lamassu mentioned it is very hard to say or predict how one may feel while on treatment - just to be careful I would always advise trying to clear a path so that you are not getting treatment right in the middle of a profoundly busy/stressful time (when possible). Other than that, plan on things (life) just progressing as normal through treatment. Go to the gym (if is feels good), deal with things you have to in life, and treat yourself as good as you can until you are cured of this virus. Good rest, good food, lots of water.

You won't be able to compare to how lamassu felt on his epclusa, and you won't be able to compare to how i felt while I was on my vosevi (epclusa+vox). I had profound fatigue before I got to treatment, and it did not improve at all while on treatment, but it did resolve slowly after treatment (as have many things for me - labs have normalized), my labs, fibroscans and ultrasounds show me with an incredibly improved normal functioning liver!

Please keep us posted. Let us know if we can try to help with something. 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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Hi Annie,

Everyone responds differently. I am retired so it was not a problem, but I was one of the 15% of patients who experienced severe fatigue while on Epclusa ... I had to feel worse before I could feel better. Please do not fret, my experience does not mean the same will happen to you but this is a strong drug that can have significant side effects in a minority of patients. My treating doc told me I was definitely in the minority as majority of his patients do not have severe side effects while on Epclusa. Magically on week ten of treatment the fatigue lifted overnite it seems. I was not detectable at EOT and every month that goes by I feel more like my old self. I truly do feel 15 years younger now. I lived with the fatigue of Hep C so long it was marvelous to actually feel normal again. The stats say men over 65 tend to have worse side effects then women who are younger. Best wishes that you get your treatment soon!



__________________

Male, 66, 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. Week 10 VL not detected, ALT 12, AST 18. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24.



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Hi there, fellow Canuck!

I am feeling a little stressed because I have too much to do.  I had a flood in my basement last spring and had to wait until September to have the outside of the house dug up and sealed.  I had to have all the carpeting taken out of my basement and, after it was sealed, decided to put everything back together.  I've found awesome people to help, one to help organize/decorate and another to do the repairs, which are taking much longer than I thought.  Then the electrician finds that the wiring is unsafe and the contractor finds mould in the walls and every day is another decision to make and more money to spend.  So the outside is mounds of dirt that will need to be dealt with in the spring and the inside is totes piled everywhere.  Sorry for dumping on you.  And to top it off, I found out one of my cats had a large tumour and had to have her euthanized New Year's eve.  And, my son is having surgery to repair a hole in his heart next week.  Dump complete :)

I went to my family dr for my flu shot yesterday and will get the pneumonia one on Monday through the health unit.  My dr's office wouldn't give it to me because I'm not 65 and didn't seem willing to work with me but the health unit understood I'm "high risk".  I'm not sure if I can have the fibroscan done through my GP.  I did call the specialist and left a message that I would like to be put on the cancellation list and asking if there is anything else I can do to speed up the process.  Seems funny that a few months ago I was considered really healthy and now I'm high risk.

Did you work out at all during your treatment?  My happy place for the last year has been the gym.  It feels good to get rid of some of the tension and feel stronger.

I'm really glad I found this group because I don't know anyone else personally who understands this journey.



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



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Hey Annie,

How's it going? Hanging in there OK with this "waiting"? How are you feeling about things, and how are you physically feeling - feeling the same or maybe worse, have you been getting stressed? I hope you're hanging OK.

If you have questions, fire away, we can try to help.

If you are spinning your wheels, you can always try to fill some time in now (until you arrive at your end of january hep appointment) doing "chores", a visit to the GP to see if there are any other tests or vaccinations you can have done now, while you are waiting, just so as to cross a few things off the pre-flight check-list and speed things along before you get to the hep doc. I can't recall this very second whether you said you did or didn't have any recent fibroscans or abdominal U/S's, but those tests could, as well, be done just via your GP while you are waiting. 

Did you consider asking about getting on the hep-appointment cancellation wait-list, to see if you could get a hep appointment sooner than the end of jan? 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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lamassu wrote:

Reads like the lab noted HCV viral load in exponential format so that would be 2.95 times 1,000,000 (E6) or 2,950,000 IU/ml.


 I think you're right...maybe.  I'm really bad at math :)  I now have the results and it says 2.95E+6 IU/ml  (Values are expressed in Scientific E Notation (i.e. E+X=10 to the power of X))



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



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Annie,

I am not up on what ONT docs want you to have (for recommended immunization coverage) when you happen to have a chronic disease process going on (like hepc), but here in BC when you have hepc ... this is what they did for me.

Basically i worked with a couple knowledgeable GP's for the first while after i was diagnosed, and between them, I ended up being instructed to get every immunization going - hepa/b, flu and pneumococcal. I had never had any of these immunizations before, but I had had a bout of hepb back in the 70's from which I should have gained some natural immunity. Just having chronic hepc pre-qualified me to have the pneumococcal despite my age. After a bit of confusion about me having to go out and purchase my own hep a/b series of shots, I finally ended up getting ALL of my immunization (for free) supplied by and injected by my local public health outlet (very convenient too) - the GP wrote out an order for what she wanted and why, and public health gave me what I needed. The order was not seamless, it did have to be re-ordered/clarified, as Public health has their guidelines too, in the end it was determined I fit the parameters (of what the GP's wanted and recommended, and what BC public health also agrees with doing for people with chronic diseases). I got the public health annual flu shot as early into the flu season as i could, they also gave me the pneumococcal shot even though i was not 65, and over the ensuing months i completed the whole series of hepa/b immunizations with public health as my hepa/b tests showed that i had insufficient immunity.

In fact, not only did Public health give me all my immunization for free (mostly due to me having chronic hepc), but to my household partner too! The GP wrote on the order that the household partner should also be up on all immunizations, and we took that order with us to Public health. He was over 65, and he had had his pneumococcal shot in the past, and he had also been doing annual flu shots before, but they additionally recommended he do his hepa/b series as well, right along side mine - we went together and we both had our hepa/b shots done at the same appointment with Public health at the required time schedules - he, also getting his hepa/b immunization through Public health with me, was for a family "household protection" thing - when one person in the household has a chronic disease like hepc - GP's and public health wished him to be well immunized to everything to afford me even further protection. 

It would be good to know if the hepa/b shots you had, have left you with sufficient immunity today. Hepa usually sticks good, sometimes hepb can be harder to stay stuck for various reasons. They can test for sufficient immunity levels. 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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It’s very good to have current (<4-6mo) lab values for your baseline. It not only provides the most current conditions, it also determines the course and type of treatment plan. Most insurance providers demand it anyway. 

It‘s a great time for treatment. The rates of success and ease of treatment have never been easier or more effective! Onward Dragon Slayer! You‘ll do great



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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 5+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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I'm so glad you got your specialist appointment booked!  You are right about them wanting to do their own tests. My specialist requested all blood work results from the last year from my primary care doc, then proceeded to do them all over again.  I guess maybe they wanted a baseline?  

 

Wishing you the best of outcomes on this !!



__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L



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Thanks, Canuck.  Yep, I am a Canuck too :)  I actually live in Chatham, which is just over an hour away from London.

Thanks for all the good advice.  I'm going to get a flu shot but my understanding on them is that they are only effective for 90 days so might wait for a few weeks.  I'm also going to check on the pneumococcal one.  I think they're paid for once you're 65 but, under the circumstances, might make an exception.

As for the other tests, it's been my experience that specialists want to run their own even if the GP has done them all but I will ask GP.  I've been checked for Hep A and B.  I was vaccinated for both few years back when I was travelling.  HIV is also negative.  All bloodwork is in the normal range.  I've had bloodwork done three times in the last three years because I've been complaining of fatigue but, with everything being normal, I didn't push it and just thought that's the way it is.  I've never been a high-energy person but it's been getting worse in the last few years.

 



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



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hee hee Annie, 

At first (well, for a little while), i thought you were in the UK! I caught on now tho that you are a fellow-Canadian! Yay, we love company here. wink I'm based in BC, but I lived in Ont too, once upon a time, about a million years ago. It was that article "link" you posted and that I skimmed over so fast, all i saw was "London", and just though UK!! Took me a bit to catch on that you are in London, Ont!

So, at least you have your hep doc date for the end of Jan! Important steps in the right direction.

If you are anxious to get going, I agree with Obs and everybody else, about trying to get on the he docs "cancellation" list, if an earlier appointment could ever be had that way.

In the interim (while you are waiting for your hep doc appointment), you could always go back to the doc who has been handling you up until now (GP or whoever), and ask him to send you for tests - he could requisition for both a fibroscan and an abdominal ultrasound (if you have not had these done recently). You might be able to have these done (while you are waiting for the hep doc) and have the tests completed and results at the ready for your hep doc to see as soon as your first appointment with him, rather than seeing the hep doc first and then waiting a bit again to get these tests ordered by the hep doc, then booked and done.

Both of these tests, the abd. U/S and the fibroscan offer very good information, I would want them done, many hep patients do have these 2 assessment done, additionally, even if they have had blood test methods of determining liver fibrosis. The U/S provides a lot of good information about all of your abdominal organs, not just the liver. Both are useful, telling, non-invasive tests. Most docs have no problem ordering these for their patients. Especially if the pt. is asking for them to be done. Ask your GP if he will arrange both of these for you. You will maybe save yourself and your hep doc a step that has to be done later and thus a tiny bit of time.

Also, you could confirm how much hep A/B testing your GP did on you - did the GP determine you have a sufficient level of immunity to both hep A/B and you require NO immunization? If you do need any hep A/B  shots, your GP could also arrange this. Something else you could try to complete sooner than later. Same for any required flu or pneumococcal shot that may be recommended for you, you could work on getting those done.

Approximately (and generally) any recent U/S or fibroscan you have done should be good for at least a 6 month period (about) as far as "assessment due diligence" or especially if "insurance" would be a concern. I think insurance qualifiers seem to deem U/S's are stale (to them) if the U/S is not within 6 months current. If a person has only ever had one single VL done, it might be possible that they may make a person wait until 6 months after the first VL to draw another VL, to confirm that the hepc is indeed still there and is therefore deemed officially "chronic" hep c.

That's all I can think of for the moment. 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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sounds good Annie



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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.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Good news, Annie.  Yes, they will want more tests before deciding the best DAAs for you. See Canuck's list below.

One thing you will learn in all this is how to wait, wait, wait.  It's all worth it. 

I'm excited that you will be free.

 



__________________

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

 



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Appointment with the liver specialist is January 31.  I suspect he'll want to do his own testing before prescribing anything but hopefully will be able to start tx early February.  I should be good to go by summer!



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



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Annie,all great advice.Especially getting on a cancellation list.Learn as much as you can about hep c and treatment.When you see the Doc ask questions.I've found they are much more receptive to a patient who is knowledgeable vs someone they have to lead by the hand.The wait may not be as long as you think.Looking around my neck of the woods,it seems like 1/2 of Ontario is in Florida for the winter.



__________________

62 yo male GT 1b/2 ALT 60 AST 51 V/L 985,000 Fibro A2 F 3/4 began 12 wks Mavyret 9/13/2018

6 wk labs ALT 12 AST 18 V/L NOT DETECTED EOT 12/05/2018 V/L NOT DETECTED

12 Wk post EOT ALT 11 AST 16 V/L NOT DETECTED  Thank you GOD

Take that stupid dragon



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Hey Annie, 

Ah yes ...the specialist waiting game ....

Definetly get on the gatekeepers good side, ask her to put you on a cancellation list.

Hope you get in soon , 

btw, you said you dont react well to medicine? Well once your liver can do its job without being constantly attacked by the HCV,you probably will find a big change. 

 



__________________

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

3 years...post tx... successful dragon slayer 

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