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Post Info TOPIC: Newly diagnosed


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Sounds good, I'll start a new thread and ask a few more questions I had there :)

Canuck, the lunch idea is great. As you said, the stomach knows when it is lunch time hehe :D 99% of the time I am fairly consistent with it, so that works. I think my only concern was with side effects. From what I've read, most folks choose night time to avoid having to deal with the side effects during their sleep. Is this true?

I am planning on drinking around a gallon a day. I already drink half a gallon a day at work anyway, and more at home, so I just need to increase it a bit.

__________________

Diagnosed on Oct 06, 2016. Initial VL: 3 million, ALT: 20, AST: 26. Elevated Bilirubin. Genotype: 2

Started Epclusa Nov 20, 2016.

UND at 4 weeks. Und at 12 weeks.



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Hi Eric- Glad to see that you are starting treatment today!   clap.gif  Here's to day one done!!

When I started treatment, Tig suggested that I start a new thread on the on treatment section.

 



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Yay, congrats on your start Eric!!

Observer offers very good advice, about choosing a time of day dosing, and tips. Consistency IS important. And cinnamon buns sounds pretty good to me right now.

Instructions "say" you can take sof/vel WITH or WITHOUT food, when in doubt, I would always default to taking them WITH food. And, of course, with TONS of water all day long. Do review the printed instructions.

I always took mine at lunch - a substantial meal - (but I had no choice but to take it with a meal) as I had the "added VOX" in my trial which stipulated I HAD to take it with food. You have some choice and leeway (being on sof/vel only), but it should be the same time everyday. Taking mine with "lunch" also helped to prevent me from "forgetting" what time it was, and forgetting to take my pill on time. My stomache usually is like another pre-programmed alarm clock for me, growls right on time for lunch. Some of our other epclusians are taking them at supper I believe.

Good you will be double checking on your gals labs.

So glad it is going well and going your way! Happy day tomorrow with the first pill down the hatch.biggrin C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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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Great news about your sweetie.

Make sure you are consistant with whatever time you decide on, set alarm'S', have a chart to tick after you've removed pill from packet so you aren't wondering if you took it yet. 

I did 11pm, because I knew i'd always be home by then, and it was far enough from dinner that  I could eat something before pills.  I got a bit of a sweet tooth while on treatment, started out eating yogurt or banana and cream....by the end it was brownies and cinnamon buns.

congrats on starting treatment

A



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

4 years.... successful dragon slayer 



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And I'm back in one piece from my short vacation in south east Asia smile

Ready to tackle the beast: I start treatment tomorrow! Are there any recommendations on what time to take the pill? My only issue is I am very jet lagged at the moment biggrin I'll probably opt for some time around 8PM.

Should I start a new thread in the treatment forum? Or just continue in this thread?

Also, a bit more interesting news: my girlfriend went to urgent care and asked to be tested for hep C. They tested her and called informing her she's clean! However, she showed me the list of tests they ordered and it's just a bunch of blood panels, no actual hep C AB test. I asked her to get me a copy of the actual results, we'll see. Regardless, her bloodwork came back all within normal range. I'm staying positive she's not infected!



__________________

Diagnosed on Oct 06, 2016. Initial VL: 3 million, ALT: 20, AST: 26. Elevated Bilirubin. Genotype: 2

Started Epclusa Nov 20, 2016.

UND at 4 weeks. Und at 12 weeks.

Tig


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That's excellent news on the coupon, Eric! Things just keep looking better and better all the time. smile Good job!



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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!

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Thanks all! Thanks for the continued words of encouragement.

Cinnamon Girl: no worries! It will still come in handy when it is time for me to have the talk with my parents. Good luck with the move. I know how much fun that is! :D

Also, a tad bit more of good news: the Gilead coupon worked, and my co-pay is only $5 per month now!



__________________

Diagnosed on Oct 06, 2016. Initial VL: 3 million, ALT: 20, AST: 26. Elevated Bilirubin. Genotype: 2

Started Epclusa Nov 20, 2016.

UND at 4 weeks. Und at 12 weeks.



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Hi Eric

All good news!!  Whoohoo

Enjoy You trip have a wonderful time!!!

RR

 



__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 



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Hi Eric, great news that the conversation went so well with your girlfriend, I know how much it must have been weighing on your mind!  I`m sure the fact that you were prepared with all the facts and information you`ve gathered so far must have helped a lot, rather than telling her sooner before you`d looked into it as much. 

I agree with Wendy, so often things work out being a lot easier and more straightforward than we`d imagined!  I know my mind has a tendency to over think things at times, especially around 4 in the morning!  Lol

Sorry I didn`t get the Disclosure fact sheet to you sooner, I`m getting ready for a house move and things at home are just a bit frantic right now!  Glad you found it helpful anyway. 

Best of luck with getting your treatment organised!



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 

Tig


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Excellent, Eric! We were all hoping to hear that the disclosure with your girlfriend was a positive one and looky there, it was! Just be reassuring with your parents, they will be a bit more worried, that's what parents do. I'm sure you'll do just fine. Sometimes printed material helps people comprehend things better and allows them to reread it over and over. Select the information that you want to share, print it and give it to them. Trust me, it helps.

Your whole plan is coming together, well done! 



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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!

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One down one to go! Glad it went well Eric. We usually think the worst (my mind can be a dangerous place) and often times the outcome is far better. Good luck with the coupon!



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

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

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

 



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Sounds good, Eric.  

I am compelled to remind us all: YOU DIDN'T DO ANYTHING WRONG!  It's a virus. People get the flu, too.  This one will some day be a simpler matter and any real or imagined stigmas be forgotten.

I'm glad you are getting treatment. I'm glad people are treating you well.  The sooner you treat, the sooner you put it behind you. Knock 'em dead, Eric.

Thanks for sharing this.

All the best!

Cheddy



__________________

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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Ahhh! I wish I had seen the Disclosure fact sheet sooner. I had the talk with my girlfriend on Friday and it was great. First and foremost, she took it very well, was very casual and wanted to know more. I think I did a much better of a job job explaining HCV to her than my original doctor did when he broke the news to me. We're staying positive that she hasn't contracted it and she'll get tested next week.

Next step for me is disclosing to my parents, which I plan to do sometime in December when I see them in person.

Also, I have made up my mind that I'd like to start treatment ASAP rather than wait until next year. I do have a short 10 day trip coming up in November, therefore I will most likely shoot to start with Epclusa by Thanksgiving. Planning to drop by the speciality pharmacy tomorrow to see if the Gilead coupon works for me. If everything goes well, I will place my first order tomorrow and schedule a meeting with the GE either this week or right after I return from my trip and start treatment soon thereafter. With this schedule I should be done by mid February!

Hope everyone had a good weekend!

Cheers,
Eric

__________________

Diagnosed on Oct 06, 2016. Initial VL: 3 million, ALT: 20, AST: 26. Elevated Bilirubin. Genotype: 2

Started Epclusa Nov 20, 2016.

UND at 4 weeks. Und at 12 weeks.



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Hi Eric, this is all fantastic news, I`m very pleased for you that things are moving forward so well!

I can imagine how reassuring your dermatologist`s casual attitude to your Hep C was for you, it takes a lot of courage to tell people at first but I can tell you it gets a lot easier as time goes on! 

Very best of luck with telling your girlfriend, I`m sure you`ll find the right words when the time comes, just remember that she loves you for who you!  I want to give you this fact sheet which covers various aspects of disclosure, could be worth a read even if a lot of it doesn`t apply to you.  Take from it anything you find helpful!  smile

Disclosure fact sheet



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Hi Eric - I have a coupon from Gilead the makers of Epclusa, They took care of the co-pay, I only pay $5.00 for each bottle. So it's just a total of $15.00 for the whole treatment. I just signed up online and received to thru my e-mail. I then let my specialty pharmacy know and they took down all the info. I didn't have to go thru any application process. I am almost positive that anyone can sign up. Go to the Gilead website. Very easy! 



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Tig56 wrote:

Hey Eric,

If you would like to investigate payment assistance a little further, review these organizations. They all have requirements you have to meet, but they will walk you through the process of qualification. Thousands have benefited from these programs. The assistance ranges from copay assistance, to full cost of care and in between. The PAN Foundation is a good one to start, but many can help.

Payment Assistance


Awesome, thanks Tig! I looked through the list and looks like even manufacturers are willing to assist with the co-pay. I applied for this one for now:

https://www.epclusainfo.com/co-pay-coupon-registration

I believe the pharmacy has reached out to a few foundations as well on my behalf. We'll see how it goes!

And thanks for the good luck! I will keep all that in mind and update everyone here soon.

Cheers,

Eric



__________________

Diagnosed on Oct 06, 2016. Initial VL: 3 million, ALT: 20, AST: 26. Elevated Bilirubin. Genotype: 2

Started Epclusa Nov 20, 2016.

UND at 4 weeks. Und at 12 weeks.

Tig


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Eric,

Good luck tonight! Just be factual and reassuring. It's very rare to infect a partner. The primary vehicle of infection is blood to blood contact. Be prepared to provide all the information she needs. If she wants to join the forum for reassurance, please invite her. We would be glad to do anything we can.



__________________

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

 

Tig


Admin

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Hey Eric,

If you would like to investigate payment assistance a little further, review these organizations. They all have requirements you have to meet, but they will walk you through the process of qualification. Thousands have benefited from these programs. The assistance ranges from copay assistance, to full cost of care and in between. The PAN Foundation is a good one to start, but many can help.

Payment Assistance



__________________

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

 



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You were correct. The information was to be used to help with the co-pay. Unfortunately, I do not qualify for that and will be responsible for the entirety of the co-pay. At this point I am deciding whether to delay until next year to avoid paying the deductible and max-out-of-pocket for two calendar years.

Thank you Tig for that link. That is very helpful. I am very nervous as I will be breaking the news tonight to her!

Thanks Wendy! I will update here once I talk to her. I am actually looking forwards to the great feeling of finally getting it off my chest. Next up: family!

I also had another small experience today that made me feel really good. I saw a dermatologist for an unrelated issue, and disclosed to her my HCV status (she's the first doctor/person I have disclosed to so far besides you lovely folks :)). Her reaction was very casual. She mentioned that it is a great time to be diagnosed (due to all the new meds), didn't even put on gloves for the full body skin checkup (from previous experiences dermatologists don't often wear gloves, but I figured she would due to my infection...just to be safer), and in the end did a firm handshake. Such a feel-good moment for me :) Stigma -- away you go!

__________________

Diagnosed on Oct 06, 2016. Initial VL: 3 million, ALT: 20, AST: 26. Elevated Bilirubin. Genotype: 2

Started Epclusa Nov 20, 2016.

UND at 4 weeks. Und at 12 weeks.

Tig


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Hey Eric,

That's what I call quick approval! Congratulations on the good news. 

As Wendy mentioned, they require all of that financial information to determine your eligibility for various programs, discounts and copay provisions. They will be able to tell you exactly what the cost will be. The costs are quite high, so there are a number of programs that are designed to assist with those costs. The specialty pharmacies are usually good at determining this. There are organizations that can provide assistance as well. Gilead has an assistance program as well. Let us know what they determine.

If you need some ideas before speaking with others, the HCV Advocate has some good info. The entire website offers good help and information on dozens of things. Here's one example:

http://hcvadvocate.org/publications/fact-sheets/faqs/



__________________

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

 



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That is GREAT news and thanks for sharing it with us. Nice to see how quickly the doc and pharmacy are moving on this. From my experience (different Rx) they ask about finances as there are programs, coupons, etc that can help with the co-pay. You may want to look into that as I had a coupon and the specialty pharmacy accepted it and I only had to pay $5 a month for my meds. If you are able to get something like that, I would start the meds as soon as you return from vacation as the money, new calendar year should not be an issue. 

Maybe in time you will come to tell family and or close friends. But yes, telling your girl is important and I wish you luck. Thankfully the stigma is not what it once was and she will hopefully love and support you through your treatment. 

all best,

wendy



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

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

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

 



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Hi all! I have some great news!

Also, feel free to ignore my concerns about the pre-requisites to the approval :) The GE's office called me today to inform me that:

1. My results are in and I have GT2 (already knew this)
2. They tested me for Hep A and Hep B to be safe (both came back negative), although the results are a bit confusing and seem to indicate I do not have immunity for Hep B. But I have records showing that I have in fact been immunized for it twice (at 2 years old and at 18)
3. The treatment is Epclusa, and I have already been approved (WHAT!!! Apparently, a day after my labwork my genotype was already available and they immediately put in the request with my insurance)

My only concern is that I will be out of the country for three weeks in November and might have to wait until after to start the treatment. I am even tempted to wait until after the holidays to avoid double paying the calendar year deductible (once for 2016 and again for 2017). Plus, it's a new year, new start! I don't have any travel or any major events and will be able to fully dedicate myself to the treatment (i.e. plenty of rest, healthy eating habits, plenty of water, etc.)

In the evening the specialized pharmacy called me to confirm the approval and also asked for the following:

1. Social Security #
2. Income (why do they need this?)
3. # of people in the household
4. Email address

Any ideas why they need the income + # of people in the household? They also informed me about the cost and the copay. I didn't realize how insanely expensive this treatment is!


P.S: I have to say that I went through a tough few days this past weekend. I had visited my family and friends for the first time since being diagnosed and decided not to disclose yet. It was tough keeping it in and I kept trying to be careful to avoid any sort of situation where they might be exposed. I know--it is silly. However, I was concerned and kept doing things such as hiding my tooth brush, razor, etc. And then suddenly today I get a phone call from the GE telling me the good news. I'm going through quite the rollercoaster of emotion at the moment!

P.P.S: I am planning to disclose to my girlfriend this coming weekend. No idea how I will approach it yet, but I feel like it is an important next step for me. Wish me luck!

__________________

Diagnosed on Oct 06, 2016. Initial VL: 3 million, ALT: 20, AST: 26. Elevated Bilirubin. Genotype: 2

Started Epclusa Nov 20, 2016.

UND at 4 weeks. Und at 12 weeks.



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Hi Erik,

i am/ was type 2 as well. I think 2b. It is he easiest of the types to treat.

also agree with Cinnamon Girl, no alcohol at all is a good place to start - especially until you have a better idea of how damaged your liver is and while on treatment. 

Good luck with it all

Syd



__________________

Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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Hi Eric - I did not have to have a drug test to get approved. Not sure if it's a insurance thing or what. I also am a GT2. Didn't receive a sub type either. I don't know how important that is. I am starting week 7 of Epclusa, and everything is going well. I am sure you will be approved. I haven't heard of denials lately. By the way... Alcohol is terrible for you liver.no keep us posted!



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Thank you all for the continued advice. I think at my next appointment I will ask him how many patients he has treated for HepC. He did know quite a bit about it, but also some of his advice was rather confusing.

During my research in these forums I also found a post that mentioned what it takes to be approved for treatment. Someone had mentioned that you have to give a drug test and pass, otherwise treatment is denied. Is this true? Even for marijuana (in a state where recreational use is legal)?

Here's another oddball: I received the results of my last set of labwork and the genotype came back as Type 2, no subtype. I wonder if the document I'm looking at is incomplete? It states the following are the genotypes: (1a, 1b, 2a/c, 2b, 3, 4, 5, 6), however it clearly also states "no subtype". Hopefully the doc has more information.

__________________

Diagnosed on Oct 06, 2016. Initial VL: 3 million, ALT: 20, AST: 26. Elevated Bilirubin. Genotype: 2

Started Epclusa Nov 20, 2016.

UND at 4 weeks. Und at 12 weeks.



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Hi Eric, good to see you`re moving forward with your preliminary testing and information gathering now since your recent appointment with your GE doc. 

I was quite surprised by his advice on alcohol though, and I`m glad you`re not going to follow it.  Apart from the fact that it`s so bad for your liver, I would say that for many people it`s easier to say we`re not going to drink at all rather than have just one or two glasses of beer or wine now and then.  One or two can very easily turn into several, especially in a situation where you`re having to contend with peer pressure, which you mentioned.  I`m not saying that would apply to you in particular, but it certainly could do for many of us here who have a history of addiction or dependency on alcohol or drugs. 

I like Tig`s suggestion too, gall bladder problems, yes!!

Keep us updated...  and good luck! 

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Eric,

Ah! ... so that's it! ... (the 1.5 you spoke of) ... something in the link, and not something I said!! ... duh, I didn't even think of that! I just kept looking in my comments for what it was I said about 1.5!! 

Take the different methods of gauging your liver (when observing "a" test, in the singular) with a grain of salt. The whole of ALL your assessments (from labs to imaging, from biopsy to fibroscan) paint a better (fuller) picture, as well as having a good experienced guesser at the helm - like an experienced doc. Your doc may have already done an Apri score on you. I was a little disappointed the first doc had not already got your gentotyping/subtyping rolling.

I'm impressed you went to the trouble to do the math to add up your own Apri score. I didn't bother to check your math. (I've never been good at math, so avoid it, but lately I have really learned to love certain numbers  <15 and ZERO especially, hee hee).  One day, I was fretting at my docs office about my increasing fibroscan score of 12.6 Kpa (F4), and in an attempt to make me feel better, he reminded me, that it "could be possible" that I might be some closer to F3 than F4, because the F4 I was focused on was based on the fibroscan kPa number, and ALL has to be taken into consideration, my Apri score was not terribly high, so, together along with all other indicators they point to a direction (an approximation) not necessarily a "rigid" fact. (Pun unintentional).

You are young, perhaps you have not had HCV for a really long time, your indicators thus far look not too bad, so a fibroscan might show you a low fibrosis score. No way to say what it might show, unless you had one. You should find out whether you can be denied immediate treatment, if you have a low fibrosis score - I would google up who has fibroscan machines in your area, to be prepared - if your doc says you will NOT be denied immediate treatment regardless of your Fscore, then ask your doc if he couldn't arrange one for you from the place(s) you have found. I think it is always better to know what your F score is. In the past, depending on your F score, that had a bearing on what drugs you got and well as the duration. Good you had the U/S tho.

Tig! An excellent reason for not drinking, indeed! GB trouble! Perfect. 

JimmyK is quite right - a person successfully treated for HCV, can be UND in short order, and can then sustain this forever, but .... given the right circumstances ... i.e. say ... I later receive a transfusion of blood tainted with HCV ... then I could contract another (new) bout of HCV, even tho my first bout was successfully treated. I may be cured of my GT3a, but I am not immune to later contracting a brand new infection of HCV, of any gentotype - I could even contract a new case and be a GT3a again! I am a cured GT3a, should I suddenly decide to become an IV drug user and share needles with a GT1, I could easily get a new case of HCV, and if I did, then I may well show up as a GT1. 

On preliminary testing (when I showed antibodies), all that meant was that i had been exposed to HCV, at some time, it is the subsequent PCR VL that confirmed whether I currently had a HCV load or not. I could have shown antibodies, and been one of the lucky few, who managed to fight off a HCV infection all by myself with no treatment, and who subsequently showed no load. 

Even if a person was lucky enough to have fought off a bout of HCV all on their own, once, it does not mean they can do so, again, the next time around.

That's how I understand it anyway. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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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Sage advice....alcohol is so bad for the liver.  I must profess the idea of drinking again is abhorrent to me.  I'm enjoying my new HCV free body and don't want harm my liver's regeneration.

That all said, I am an addict and there will be times in the future, like there have been in the past, when the idea of drinking is appealing.  I find socialising, especially in restaurants (I avoid bars), the danger zone.  Especially if I don't know the people I'm dining with.  Anyway, I digress....best of luck with the treatment.



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.

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Hey Eric,

If you need another explanation to provide your peers about abstaining from alcohol, tell them you're having problems with your gall bladder and can't drink until further notice. Doctor said to take a few months off while tests are being done. You don't have to explain any further. Shrug shoulders and tell them you're just following orders.... 

Just don't drink! A doctor telling anyone with Hep C that it's okay to drink, needs to do a little review on alcohol's effect on a sick liver. Good luck!

 



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EricChuckFar1 wrote:


By the way, I am curious. After contracting HCV and being cured, is it possible to catch it again? Even though I will already have antibodies to the virus? Or am I still prone to other genotypes?


 Hi Eric. Continue the conversation with our Northern Sister. She is good at providing Data.

But when I saw this I did not want to wait to address.

Re-Infection is absolutely possible yes. Once clear does not equal Immune.

 

JimmyK



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It was in your link here: hepcfriends.activeboard.com/t62655859/fibro-sure-also-called-fibro-test-the-acti-test-and-the-apri/

Under the APRI section:

> APRI above 1.5 can indicate advanced HCV liver damage.

As far as the meds, that's a fantastic idea. I did have some dental work done last week (and some more next week) so it will be perfect for the time being. Thanks!

The GE promised to set up a follow up once the genotype lab results come in. I am compiling all the questions I need to ask:

* Baseline fibroscan (and whether this is needed for treatment to be approved by my insurance)
* Influenza/pneumococcal immunizations (I already have received a flu shot)
* A/B immunity levels

He has not set up a followup with my girlfriend as she is out of state. I will make sure she gets tested and is aware of everything I have learned (hence why I'm waiting for the time being).

By the way, I am curious. After contracting HCV and being cured, is it possible to catch it again? Even though I will already have antibodies to the virus? Or am I still prone to other genotypes?

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Diagnosed on Oct 06, 2016. Initial VL: 3 million, ALT: 20, AST: 26. Elevated Bilirubin. Genotype: 2

Started Epclusa Nov 20, 2016.

UND at 4 weeks. Und at 12 weeks.



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That's good, but .... huh, what was the 1.5 I suggested? I don't know what you mean or are referring to by 1.5. confuse

I expected he would want to check your A/B immunity levels, as well as discussing influenza/pneumococcal immunizations. (Same should be a consideration for your girlfriend).

Google up who has fibroscan machines in your area.

Alcohol - if pressed, you can always just explain to your friends that you cannot drink because you are on some meds, if they press you further you can give them examples of drugs that no one should be allowed to consume alcohol with (do them a favour and educate them!) - ie. some drugs that should not be consumed with alcohol, are certain antibiotics, a few commonly used in dental infections for example ... just sayin!

Antibiotics: Cefamandole - (Mandol), Cefoperazone - (Cefobid), Cefotetan- (Cefotan), Chloramphenicol, Griseofulvin - (Fulvicin, Grifulvin,Grisactin), Isoniazid - (Nydrazid, Rifamate, Rifater), Metronidazole - (Flagyl), Nitrofurantoin - (Furadantin, Macrodantin), Sulfamethoxazole - (Bactrim, Septra), Sulfisoxazole - (Pediazole). wink C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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.

 

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Thank you Wendy and Canuck. I am likely going to cut alcohol completely. My friends love peer pressure, so I will need to come up with a good excuse not to drink with them. Luckily, I have given up alcohol for 5-6 months at a time in the past, mostly to test my discipline and help my workout routine at the time (no alcohol and clean diet), so they are familiar with me giving up alcohol for long periods of time.

I will also definitely follow up with the doctor and try to request a fibroscan. First things first, need to know what my genotype is. He is also testing me for Hep A and Hep B (just to be safe), although I am fairly certain I've been immunized since childhood (and again in high school).

By the way, that is a fantastic resource, thank you Canuck. Following the APRI formula I decided to calculate my score (26/35/214*100) and got 0.34 (yay!), which is well below the 1.5 you indicated. So that's a good sign. Yay!

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Diagnosed on Oct 06, 2016. Initial VL: 3 million, ALT: 20, AST: 26. Elevated Bilirubin. Genotype: 2

Started Epclusa Nov 20, 2016.

UND at 4 weeks. Und at 12 weeks.



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Agree with Wendy. I would certainly prefer to have a baseline fibroscan, to go along with with my other baseline data (ultrasound and labs), and whatever combined assessments he may have already done to gauge your fibrosis level - see: Fibro-sure (also called Fibro-test), the Acti-test, and the Apri-test . But, it IS early days, and you may get a fibroscan yet, before you start treatment, especially if you ask again about it, suggesting you would feel reassured having one before and after treatment. You can inquire with him again, when you see him next, as to what methods he has used thus far to gauge your fibrosis. He may not have a fibroscan machine himself, or be conveniently close to access a place (that he likes) that does have fibroscan facilities/technicians. (It could be another competing docs office that has the closest scan machine!) Maybe you should hunt up where the nearest fibroscan facilities are, to be prepared. It may turn out, he (or insurance) may be reluctant to have the cost of a fibroscan covered, or truly appreciate it's added value as a component of your assessment. (Some people do not give as much merit to a fibroscan, as others do, for various reasons, and over other methods). I certainly agree with having them done! I think you should have a fibroscan done as a part of your assessment, but I would also hate to see you be forced to pay for it yourself, should they not agree that it is a necessary thing. I think fibroscans offer good added value, should be part of the baseline assessment and follow-up. smile C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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.

 

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Glad you got some answers but not sure I agree with the no biopsy no fibroscan. I say this because many insurance companies will not pay for treatment without one of those to show the exact shape your liver is in. 

It is best to cut out alcohol as it taxes the liver. Anyone with HCV should be mindful of this. Who wants to make matters worse (rhetorical). 

Good luck talking to your girlfriend and I hope she is supportive. Please keep us posted. 



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Wendy 53 y/o, DX 1994, geno 1A F1

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

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

 



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Good news, that he spent 40 minutes with you, Q &A's, and that he is not too concerned about cirrhosis in you based on your labs/imaging. Take his word for it, for the time being, about his assessment of what your level of fibrosis/cirrhosis is - he should have a good idea, even without benefit of additional assessment info from a biopsy or fibroscan. He no doubt will keep tabs on you, your labs and your GB now.

Did he assign you his educated guess of a F-score?? F0 or F1 for instance. There ARE other methods/considerations that they use to guesstimate your F-score.

By the next time you see him, you can ask him what he thinks your F-score is, and he should soon be able to confirm your GT and sub-type.

It is still early days in your assessment.

Anyone who tests pos, for HCV, should have their partner tested too. It is just the wise thing to do, better to know, than not know, for anyone who "might" or "might not" have HCV. Look at it this way, if SHE was the  ONLY one in your household who had HCV (and you did not) she too would have been advised to inform you, and arrange a test for you too. It is hard to pass HCV onto a partner, it is unlikely you gave her HCV and it is unlikely she gave you HCV.   Regardless, the testing should be done for partners.  One never knows, she could have a completely unrelated case of HCV (all on her own), and will be glad to know, and glad to know she did not give it to you, and that you got your own HCV some other way! Within the realm of possibilites. Blood to blood exchange (transfusions, IV use, etc.) is the best way to contract HCV, fornication is low on the list of risks

There should be no blame, ever. It is a virus. It does not matter how one acquired it, many people will never know "how" they got it. What IS important is knowing whether you have it (or not), so you can get rid of it.

I think you will start to feel some relief when you discuss the matter with your girlfriend, and express your concern for her, to her.

I like the sound of your GE. Did he set up an appointment to see her, or to see the both of you?

She will probably test neg and then you can stop fretting about that part of it. smile C.

 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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.

 

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Finally met with a GE today!! To be honest, I came out a little confused. He definitely knew a lot more than my previous doctor. He looked at my test results and the ultra scan and decided against a need for a fibroscan. He said he sees no evidence of cirrhosis based on the test results and there is no need to biopsy the liver. The ultrasound showed everything being normal except for the gallbladder (if I recall correctly), which he said he is not worried about. Nor is he worried about the raised bilirubin.

I am still tempted to request a fibroscan. Do you think that's a good idea? Are these expensive?

We had a long 40 minute chat (mostly questions and answers). He went over my risk-factors and believes that it is possible I got infected from my girlfriend (due to my lack of risk factors). He wants her to get tested and if she is infected, then they need to go over her risk factors. I'm not a big fan of this (to suggest that my girlfriend infected me), but regardless I will talk to her next weekend and break the news. I am still crossing my fingers that she hasn't been infected.

Another interesting thing he said was that it is in fact okay to have a beer or glass of wine (or two) once a week (he advised against overdrinking though until cured). 


Next steps as outlined by him are to do additional blood work to find out the genotype and pick out which treatment is suitable. Hopefully I'll be on my way working towards being cured soon!

Eric



-- Edited by EricChuckFar1 on Wednesday 19th of October 2016 12:26:37 AM



-- Edited by EricChuckFar1 on Wednesday 19th of October 2016 12:46:25 AM

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Started Epclusa Nov 20, 2016.

UND at 4 weeks. Und at 12 weeks.



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Sounds good! I will address all the questions with the GE next week and report back soon.

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Diagnosed on Oct 06, 2016. Initial VL: 3 million, ALT: 20, AST: 26. Elevated Bilirubin. Genotype: 2

Started Epclusa Nov 20, 2016.

UND at 4 weeks. Und at 12 weeks.



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EricChuckFar1 wrote:

Canuck, thanks so much for analyzing the data for me! I looked over the test results again and do not see any reference to the genotype. Is it typically part of the test? (It might have already been ordered/done). I've sent a message to the Doc who ordered the tests to see if the genotype is available. (Good). I'm afraid I may have to do another set of bloodwork, which will further delay things!! (Having bloodtests should not delay ANYTHING. And, don't be surprized when you get to the GE - as no doubt, there will likely BE more bloodwork coming up for you! In the unlikely event that they have not already done a GT and subtype for you, then any bloods, or assessment tests of any kind, that can be done as soon as it is ordered will not delay you, rather it will only help you complete all the preliminaries and speed things along, a GT is very basic info, needed for your treatment plan, I am sure the GE will still see you even without you knowing your GT, even without having your U/S in hand. Better you have as many items completed as soon as you are able, but it IS a process, and there will be some hurdles, testing, appointments, or requirements you will probably NOT be able to anticipate until you see your GE anyway. He will order what you need done, and get the results, if it hasn't been done. Your GE will gather all the test data, as it comes in, and often it starts with the basic info included along with the referral letter from doc #1 to doc#2.)

For now, I'd like to go see the GE armed with at least the Ultrasound and labwork results. I think that's a good start. (Yes, an excellent start!) I will ask the GE about Fibroscan. (Good.) Sounds like he will most likely order one for me anyway. (And, inquire if there is going to be any other kind of imaging he may want, aside from the U/S, like a cat scan.) 

As far as immunizations, I am already immunized for HepA and B (at young age and again before college) and I believe those are for life. (Generally yes). Is there anything else I should be concerned about? (hee hee - "young age" - age IS all relative, isn't it, the old lady said! ho-ho. He should go over your immunization with you, he may draw bloods to test how good your immunity levels are - immunity titres, to assure immunity memory looks good. Some docs will re-innoculate for A and B, depending, but that may not be necessary at all for you. It is a debate, one can have sufficient "immunity memory" from  immunization many decades prior, even if current titres show up lowish. He may want to review your girlfriends immunization too. He might recommend flu/pneumococcal immunizations - no idea! what he will recommend, but he will no doubt assess your immunity to other things.) 

RC, thanks for the advice. I finally scheduled the ultrasound for this coming Friday. It will be an ultrasound of the abdomen and I believe the gallbladder, pancreas and liver are all right next to each other so I am sure they'll capture it, but I will mention it to them regardless. (Yup, they get a peek at everything they can, spleen/kidneys too.) My appointment with the GE is on Tuesday next week.

I do have one more question. Do you think it is a good idea to wait until next year before proceeding with the treatment? If for whatever reason the treatment spans December and January then I would have to pay the out of pocket max twice (once for 2016 and a second time for 2017). (It is a valid concern for you - it's a thing you should discuss with your doc, if he will. He will be assessing how urgent your treatment is. As well, it is a concern for you, telling your girlfriend, so I hope you will discuss this with him too - hopefully he will be "the kind of doc" to help you address concerns.)



-- Edited by EricChuckFar1 on Tuesday 11th of October 2016 04:21:56 AM


 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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.

 

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Ruby Red wrote:

Hello Eric

Welcome to the group. I'm sure you already have a good idea you're in the right place. I know it seems like your in a storm right now but the dust will settle.

You are on the right track heading ... for the cure!

RR


 

Thanks for the welcome! I actually can't believe how calm I am regarding this. Apart from being unable to sleep much the past few days (my brain is constantly buzzing at the moment), I have not had much anxiety at all. However, I do find it quite hard not sharing the diagnosis with the family (and girlfriend). I guess I'll have to hold it in another week or two for now. I will be seeing them soon though and need to decide what to do. In the meantime, chatting with everyone here has been a tremendous help. You cannot imagine the state of mind I was in on Thursday/Friday and how much that has changed since then. Thank you all!

 



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Diagnosed on Oct 06, 2016. Initial VL: 3 million, ALT: 20, AST: 26. Elevated Bilirubin. Genotype: 2

Started Epclusa Nov 20, 2016.

UND at 4 weeks. Und at 12 weeks.



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Canuck, thanks so much for analyzing the data for me! I looked over the test results again and do not see any reference to the genotype. Is it typically part of the test? I've sent a message to the Doc who ordered the tests to see if the genotype is available. I'm afraid I may have to do another set of bloodwork, which will further delay things!!

For now, I'd like to go see the GE armed with at least the Ultrasound and labwork results. I think that's a good start. I will ask the GE about Fibroscan. Sounds like he will most likely order one for me anyway.

As far as immunizations, I am already immunized for HepA and B (at young age and again before college) and I believe those are for life. Is there anything else I should be concerned about?

RC, thanks for the advice. I finally scheduled the ultrasound for this coming Friday. It will be an ultrasound of the abdomen and I believe the gallbladder, pancreas and liver are all right next to each other so I am sure they'll capture it, but I will mention it to them regardless. My appointment with the GE is on Tuesday next week.

I do have one more question. Do you think it is a good idea to wait until next year before proceeding with the treatment? If for whatever reason the treatment spans December and January then I would have to pay the out of pocket max twice (once for 2016 and a second time for 2017).



-- Edited by EricChuckFar1 on Tuesday 11th of October 2016 04:21:56 AM

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Diagnosed on Oct 06, 2016. Initial VL: 3 million, ALT: 20, AST: 26. Elevated Bilirubin. Genotype: 2

Started Epclusa Nov 20, 2016.

UND at 4 weeks. Und at 12 weeks.



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Hello Eric

Welcome to the group.  I'm sure you already have a good idea you're in the right place.  I know it seems like your in a storm right now but the dust will settle.  

You are on the right track heading ... for the cure!

RR 

 



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GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 



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Hey RC,

Yup, i concur. But no doubt his doc(s) will check out everything through all the assessments.

Eric,

As I mentioned, it will not hurt to point out to the U/S technician, that aside from your VL, your only known elevated LFT is a bili. But I am sure they always strive to get good visualizations of ALL your abd. organs via U/S, and, no doubt your docs will be taking ALL your labs, and imaging, in together to consider.

My mind always drifts to GB as well, when a bili stands out. But we often see bili fluctuations in HCV. 

Usually, a lot can be seen/told by even a simple U/S. It's a good test to have. They will get you assessed well Eric, one step at a time. smile C.  



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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.

 

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Hi Eric.    Ask your Dr to take a look at your gallbladder, and pancreas.Trouble with either of these will cause your biliruben to be high. With your low ast/alt numbers they should be looking at G-B and Pan.   Just my oppinion.   RC



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Oh Eric,

Just about choked when I saw how LOVELY your lab work is!! Nice. Lucky you, the only thing up was your bili and even that is not too scary!! Can't say I've seen too many of us with a "within normal range" ALT with untreated HCV!! Never mind an Alt of only 20!! Nice for you, not much "signs" of inflammation going on at the time of this draw (at least according to the bristling "normals" shown on the labs alone) - this does not minimize how ill you are or that you do not have an infection - your doc, ALL your assessments, and ALL your other tests (combined) truly paints a better picture of where you are at with any liver damage. Many of us start off treatment with elevated ALT's (one indicator of liver inflammation), and many of us would kill to achieve a nice normal ALT like yours! So, at first superficial (unofficial) glance, things look pretty good to me on your lab front. The nature of the HCV beast tho is that ALT's and loads can flare and wane as we do our own battle to fight HCV, so labs may fluctuate when untreated. It took me a bit to git that, that VL and Alts can drop all on their own from time to time. Your current labs do not necessarily mean your load or your ALT's have not fluctuated in the past (up or down). 

Re: the HCV PCR VL results, if you cannot see any "numbers/letters" on the page (at all), like 1, 1a, 1b, 2, 2a, 2b, and so on, 3, 4, etc., then indeed your genotype/sub-type may not be included on this paper you have. It probably HAS been done, and may be available in their records now, or, is still to come, but ASK for clarification/confirmation on Gentotype and Subtype. Inquire of the lab, or the doc you saw, if they already know the GT or subtype, or, whether this bit of data is still to arrive. When I received my first PCR VL copy, I of course could easily see my 10 million+VL and the conversion to log 7.01 equivalent number, but totally missed seeing the tiny non-descript untitled numbers at the top right hand side, which only said "3a'' in small unassuming print!! I had to scour the page again a wee bit later before I even could see it and figured out, oh drat!, that IS my GT!! The letters "GT" or the word "subtype" was not even on the page beside the "3a". It meant I was GT3, subtype a.

Baseline assessment data usually includes some kind of abd. imaging. The ultrasound (U/S) is valuable and can reveal quite a bit of info. When you present yourself for your U/S they will already likely know this is for HCV assessment, and you can mention to the U/S technician doing the scan that your only obvious out-of-norm recent lab results, seems to be the confirmed VL, and an elevated bilirubin. You might also ask (either of your docs) if a CAT scan or MRI is planned. If so, get it booked in case there is a waitlist.  I would also want a fibroscan, in addition to the ultrasound (but that is MY preference). I give fibroscans a fair bit of credit as good added data (than others do). Fibroscan is a fairly inexpensive test (say, compared to CAT scan which boasts a host of data). Fibroscans provide only limited info, but it is an easy (but somewhat debatable) indication of your kPa measurement of liver hardness/fibrosis and is one way (another way) to give you a guess at what your F score is (i.e from F0 thru 4). U/S is a good test and will tell you much, but it is only part of the assessment(s), it "alone" does generally provide you with an F score.

That sounds promising (if you nearly had an appointment sewn up with a GE already), it would seem then, that he does not have a great backlog/waiting list for appointments, and you may get relatively quick and easy access to him.

Make sure your immunization and immunity levels are assessed with the doc, and are brought up to snuff as necessary.

The sooner you know, and complete, the good and necessary preliminaries, the sooner you can get treatment going, and get rid of this virus. Your doc "might" even provide to you a lab req., for you to give to your girlfriend, so she can have her antibody test done, without even seeing her. They did so for me, for my partner, just for convenience and to expedite things. Although my partner did end up sitting in with me on some of my prelim. appointments anyway, just for my moral support, so he could hear things I might have missed, and/or, for him to have an opportunity to ask any question too. Both our immunizations were assessed and we had them brought up to date over the following months. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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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Thank you Canuck, Liz and Juliet for the continued welcomes :)

Pablo: thanks for clarifying. Now I understand.

Canuck, my original lab result just had three details in it. One tested for the antibody (as reactive) (signal to cut-off is 26). The other two were the viral load:

  • HCV RNA Quantitative real time PCR:
    • 3.4 million IU/mL (Looks like I had misread 7 million for some reason, it's only 3.4)
    • 6.5 Log IU/mL

Does this reveal the genotype?

Actually looks like my second set of lab results are already available online! Here's what they had ordered:

  • Comprehensive Metabolic Panel
  • Amylase
  • Lipase
  • CBC (INCLUDES DIFF/PLT)


The doctor who broke me the news works at the clinic I went to. He is not my primary and I will not be seeing him again. The clinic is a special clinic for my company where they provided subsidized pricing. The primary I've been seeing so far this year was not available at that time and I guess they deemed it urgent enough to call me in to see the other doc.

I have an appointment with a gastroenterologist next week, but it looks like I won't be able to get an ultrasound in until Thursday, so I will likely have to reschedule the appointment with the GI.

I'll paste the results of the above tests here. I have no idea how to read them (apart from most being in the normal range). I do see some keywords in the results such as ALT that I've seen else where on the forum.

Test NameTest ResultNormal rangeFlags
ALT20 U/L9-46 U/L
AMYLASE47 U/L21-101 U/L
GLUCOSE72 mg/dL65-99 mg/dL
UREA NITROGEN (BUN)19 mg/dL7-25 mg/dL
CREATININE1.08 mg/dL0.60-1.35 mg/dL
eGFR NON-AFR. AMERICAN93 mL/min/1.73m2> OR = 60 mL/min/1.73m2
eGFR AFRICAN AMERICAN108 mL/min/1.73m2> OR = 60 mL/min/1.73m2
BUN/CREATININE RATIONOT APPLICABLE (calc)6-22 (calc)
SODIUM141 mmol/L135-146 mmol/L
POTASSIUM4.1 mmol/L3.5-5.3 mmol/L
CHLORIDE104 mmol/L98-110 mmol/L
CARBON DIOXIDE27 mmol/L20-31 mmol/L
CALCIUM9.8 mg/dL8.6-10.3 mg/dL
PROTEIN, TOTAL7.3 g/dL6.1-8.1 g/dL
ALBUMIN5.0 g/dL3.6-5.1 g/dL
GLOBULIN2.3 g/dL (calc)1.9-3.7 g/dL (calc)
ALBUMIN/GLOBULIN RATIO2.2 (calc)1.0-2.5 (calc)
BILIRUBIN, TOTAL2.1 mg/dL0.2-1.2 mg/dLHigh
ALKALINE PHOSPHATASE49 U/L40-115 U/L
AST26 U/L10-40 U/L

CBC:

Test NameTest ResultNormal RangeFlags
LIPASE25 U/L7-60 U/L
WHITE BLOOD CELL COUNT5.4 Thousand/uL3.8-10.8 Thousand/uL
RED BLOOD CELL COUNT5.22 Million/uL4.20-5.80 Million/uL
HEMOGLOBIN15.1 g/dL13.2-17.1 g/dL
HEMATOCRIT44.8 %38.5-50.0 %
MCV85.7 fL80.0-100.0 fL
MCH29.0 pg27.0-33.0 pg
MCHC33.8 g/dL32.0-36.0 g/dL
RDW12.9 %11.0-15.0 %
PLATELET COUNT214 Thousand/uL140-400 Thousand/uL
MPV9.6 fL7.5-11.5 fL
ABSOLUTE NEUTROPHILS2857 cells/uL1500-7800 cells/uL
ABSOLUTE LYMPHOCYTES1998 cells/uL850-3900 cells/uL
ABSOLUTE MONOCYTES454 cells/uL200-950 cells/uL
ABSOLUTE EOSINOPHILS76 cells/uL15-500 cells/uL
ABSOLUTE BASOPHILS16 cells/uL0-200 cells/uL
NEUTROPHILS52.9 %---
LYMPHOCYTES37.0 %---
MONOCYTES8.4 %---
EOSINOPHILS1.4 %---
BASOPHILS0.3 %---`

I don't think this has anything regarding fibrosis though. Does that come specifically from an ultra sound?



__________________

Diagnosed on Oct 06, 2016. Initial VL: 3 million, ALT: 20, AST: 26. Elevated Bilirubin. Genotype: 2

Started Epclusa Nov 20, 2016.

UND at 4 weeks. Und at 12 weeks.



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Hi Eric

What I meant is that the more liver damage one has the better one feels, in relative terms, after SVR.   People who have little liver damage tend to have few HCV symptoms and, therefore, don't feel massively different after SVR.  But, obviously, have less fibrosis to begin with is a better thing.

Juliet - you were super-unlucky.  I've been in 2 longterm relationships since contracting HCV and neither lady got HCV from me.  

Pablo



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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Welcome Eric! 

I am glad you are here. The question of telling people is that you need to feel comfortable doing so. At first I didn't want to tell anyone. Same fears that you have. I did tell my Mom though. I told my daughter as well. They both are very supportive. I almost didn't tell my bosses as work, but they knew something as going on as well. I would not of said anything, but i do consider them friends. We have all been working there for 16 years, and it is a small place. Now they understand where my brain fog is coming from! biggrin  Some people keep it totally to themselves. Do what is best for your situation.

Take one step at a time. Waiting is hard, but it will be worth it in the end. Keep us posted.

Liz 



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Hi Eric,

Welcome from me too. I am glad you found this place.

ALL of this IS just a TON of info for you to process, especially being new to the game - don't worry about figuring out everything and every detail immediately, even though you really want to (I was the same) - rather, focus on the most immediate needs - which you DO seem to be doing.

You said ... "I was diagnosed two days ago ...A physician, at the lab where I had gone for labwork, had called me in to discuss the results ...I am just under 30. My viral load is around 7 million and the doctor guestimated that I've had the virus for many years ...for now I have followed up with the lab for some more bloodwork (I guess to figure out the genotype?) and am going to schedule an ultra sound next week. I will hopefully see a GE a week after the ultrasound ...I will probably share with my girlfriend and have her tested ...I will most definitely tell her within a few week ...learn as much as I can and get an appointment with a GE or hepatologist. Will cross the insurance bridge once I get there ...


Just GETTING diagnosed is a huge leap forward, it is VERY good (that at your young age) you have found out you have HCV, and have a very good path to fix it nowadays. Many people have not been so lucky to get diagnosed at a young age and have unknowningly been packing HCV for many, many decades. Over time, more and more damage can occur and accrue to your liver from HCV. Generally, the earlier you are diagnosed and treated, the better - less time for the HCV to continue doing damage to your liver (eg. causing fibrosis or cirrhosis of your liver). That is what Pablito was getting at I think- after the HCV treatment, liver inflammation decreases, with the inflammation process stopped, your liver then has a chance to rest, so as to be able to recover and perhaps regenerate/undo some damage. Often, no further increases in fibrosis/cirrhosis are seen after treatment (which is a very good thing) After treatment, the scarring or hardness (the fibrosis) or the "fattiness" of your liver (what ever the case may be), may regress over time. All good. I think Pablito was referring to possibly "the amount" of damage your liver may have sustained - it stands to reason, the less damage the better, and perhaps the quicker and easier the liver might be able to recuperate/regenerate.

You may never figure out (for sure) how you got HCV, when, why - (maybe one day you might end up with a good guess), but for now, the only really important consideration (as far as when you got it) would maybe only be for the purposes of "second guessing" the possible length of time inflammation has been going on, the resultant level of fibrosis, and the condition of your liver.

You will find out soon enough (indications of liver damage) - your doc will soon be able to gauge things a little more accurately for you with the assessments - lab tests, such as liver function tests (LFT's)/ imaging - the ultrasound you mentioned, or other imaging, and likely a fibroscan - a kPa measurement of your liver hardness).

So, do concentrate on the preliminary work at hand, the appointments and the testing (all the items you mentioned above that you are going to do) - they are the most important for now.

This one doc you spoke of (the one who told you of the HCV) - is he your regular physician?? Did he not already refer you to a hep doc?? Will you be seeing both him AND a hep doc for your treatment? If so, I hope you do not get delayed waiting for a hep doc appointment.

Your testing thus far ... (you must have already had a HCV RNA PCR test completed, which shows your viral load count) - as you said you were told your VL was showing a count of a 7 million?, so, it is likely your genotype (and sub-type) may already be shown on that same test.Ask. You might start requesting copies of all your tests.

Good to know your genotype and sub-type, and fibroscan results (or any other tests/assessment results indicating your liver fibrosis - like your fibrocan F-score, i.e F1, F2, F3, or F4) as these things can give you heads up as to what drugs or treatment duration you may end up being offered. Good things to know, and to discuss thoroughly with your doc(s) early on, in case there are choices in treatment drugs for you. Insurance also may dictate certain tests be done, conditions that must be met, or have a say in what drugs they will cover, so insurance is a consideration too.

Arm yourself with the reassuring data about how hard it actually is to give HCV to your girlfriend and then tell her. Then get her tested, then you will both be reassured.

You and her are the only important people in this equation for the moment - well, excepting for the docs and labs of course. Expend your energy there first.

It will be OK, you'll see. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



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Welcome to the group!

I am a rare person who contracted Hep C via vaginal sex while in a long-term monogamous relationshop. But here's the deal: the virus is spread through blood to blood contact, which is normally not an issue with sex. My husband was diagnosed after we'd been together a few years. Those previous few years, as is true with most new couples, were full of sex, sex, and more sex. Never with condoms, except for a shott while at the very beginning. I was really afraid I had contracted HCV from him, but I tested negative. I got tested every few years after that, and I was always negative.

So now over 15 years later we are living apart but still married and monogamous, and we have sex maybe a couple of times a year. And this year, after all that time, I tested positive! We are both genotype 3b, which is not common in the USA, so I'm sure I got it from him. So why now, when we hardly have sex at all? I think it's a function of our ages: I am now past menopause and have the typical problem of dryness, while he needs, uh, rougher handling than he used to. I can see how we both could have had tiny breaks in the skin and potential for blood to blood contact.

I wish there were more research done on sexual transmission to help couples make better choices. Nowadays they say the risk is very low so you dont need any protection at all. I'm sure not everyone is comfortable with that, but the only option given is to use condoms, which most people won't be too happy about either. If my theory about my own acquisition of Hep C turns out to be true, perhaps doctors in the future will make recommendations on avoiding potential blood to blood contact during sex, for example, by using lubricants to prevent transmission if there is any risk of dryness.



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HCV genotype 3b, started my 12 weeks of Sovaldi/Daklinza on 10/15/16.
Probably infected 1 - 2 years ago, viral load 800,000, fibrosis stage 0.

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