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Post Info TOPIC: New here, alone, scared...


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RE: New here, alone, scared...
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Hi C

just living the happy ending...



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66 m asymptomatic for perhaps 45 years GT 2b Dx HCV 2/17 ALT 113 AST 67 VL 551K SOT 5/17 12 weeks Epclusa 4 week blood draw ALT24 AST 22 VL undetected


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HEY Hiya upstate!

Glad to see you here, meeting JB. smile 

Speaking of your epclusa "happy ending", that's kinda just what my hep doc said to me at my last 6 month checkup (just this May), from being technically cirrhotic GT3a in 2015 to being apparenty F0 now!, all this reversal and regeneration and recovery from a mere 8 weeks of Vosevi by trial - he said "you are one of our success stories"!! Wishes do come true, don't they! Let us know how all things are going for ya. biggrin C.



__________________

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

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

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

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

 

(SEE UPDATES IN BIO)

JB


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Thank you all for the kind welcomes, tips and words of encouragement. I'll certainly update throughout my journey. I need to make it a habit to come on here more often and interact with you guys. I continue to feel well. I'm on Day 11. Some headaches, but nothing that I can't tolerate. I'm walking 10k steps per day and I continue to eat healthy. I'll be in touch with ya'll. Thanks!

__________________

39/M, Dx Apr 2018. GT3. Possible HCV since birth. Pre-treatment VL 653,000; ALT 201, AST 116, Fibroscan w/ Fscore of 3 w/ some fatty liver, Tx 12 weeks Epclusa ended Aug 18. MRI June showed no cirrhosis, but something on liver - possibly artifact 1.4x0.6cm. EOT VL undetected w/ ALT/AST normal. 



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welcome....

alotta happy endings here...

I'm one of 'em, a year out from my epclusa tx

go man go



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66 m asymptomatic for perhaps 45 years GT 2b Dx HCV 2/17 ALT 113 AST 67 VL 551K SOT 5/17 12 weeks Epclusa 4 week blood draw ALT24 AST 22 VL undetected


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Hey JB1407!

Welcome here from me too! (my fellow-GT3). Glad you joined the group, and very glad you got Gilead's wonderful Epclusa. You'll be right as rain in no time. So, you are about 9 days into your therapy, and it sounds like you have already learned a lot, and are doing quite well. Glad to read your details and to see you have a lot of good things going on for you (in your favour), youth, otherwise healthy, good healthy lifestyle, aware of need for good diet and already know to drink lots of water while on therapy. You do not need "luck" the odds are already stacked in your favour with epclusa, and all your other good particular factors. Us 3's are so lucky to be treated in the era of Gileads "VEL".

Sorry, I would have met/greeted you sooner, but i have been on an "away", I have some catching up to do around here. 

We are not such a rare breed (us GT3's) - the plain ole GT3's, 3a's, 3b's ... if ya's counting us all up! there are actually quite a few of us around these parts! Seethelight,Cinnamon Girl, robertsamx, loopy lisa, Jaggles, billym, zlikster, max, wizard, anat, me, and probably a lot more I can't recall just off-hand!, there must have been quite a few more who have come and gone, those 3's who have been nicely cured but still pop in here once in a while. You are certainly not alone being a GT3, we all keep you company. 

You should write up a signature line, can I suggest something like this (below)??, otherwise, we might not be able to keep in mind your pertinent details during discussions ...

In my 30's, male, Dx March/Apr 2018. GT3 (a or b?). Might have had HCV since birth or for a long time, date unknown. Pre-treatment VL (  ?  ), ALT 201, AST 116, U/S showed some "fatty liver", Fibroscan showed Fscore of (3 or 4?/or ____ kPa's, or some level of cirrhosis?? - to be clarified), Tx 12 weeks Epclusa, SOT May 27, 2018 - EOT Aug 18. MRI to be done Jun 12. 

 

You can fill in blanks, change/correct/ add things to your sig line however you please as you find them out and as you progress.

I cannot tell (from what you have shared) what the >11 you mentioned stands for, whether that is "11 kPa's", from your fibroscan, which would put you in the non-cirrhotic Fscore range of F3. Perhaps it is a number pertaining to your VL, but I cannot tell without further details, such as what report it is written on, or things like measurement details written beside it, "log"/IU/ml, or kPa's, etc.

I am glad you are getting treated. Too bad your Mom went through the rough stuff, back aound 2011. She will be glad for you that you got the likes of epclusa. Like Tig said, even if you and she had the exact same GT, you would still not likely ever be able to figure out, for sure, the when/why and how you got HCV especially given your healthy, lo-risk lifestyle - you and the others here have it right tho, the priority of importance is that the HCV be treated. 

Please do post more info and labs, or share whatever you like, we will always try to help where we can, or answer questions as best as we are able.

I am looking forward to hearng more from you and about your MRI, how you are feeling and clarifications on some of your stats such as VL and Fscore.

Glad you are here. C. biggrin



-- Edited by Canuck on Tuesday 5th of June 2018 04:46:41 AM



-- Edited by Canuck on Tuesday 5th of June 2018 05:56:44 AM

__________________

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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JB, you found the right place for support and education. I also started like you, reading other people's comments and finally I jumped in and started talking to people that have already walked that mile, helps validate your feelings. I also racked my brain on the source of the virus...finally I just decided to quit wasting my time since it was very unlikely I would ever know. You are very fortunate that the treatments available today are more tolerable than a few years back. Good Luck!
Boxers

__________________

65 yo female

dx. 1996

TX with interferon/riba 2001..failed

Uncompromised 2015

TX with Harvoni  2015..virus undet.

Meld 14 7/2017  TIPS 1/2017

 

TP 5/12/18 



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Hi JB,

Welcome from me also. As everybody says it really doesn't matter where the virus came from, stressing over where you may have gotten it doesn't help. Beating the thing is the important thing here. You have found a wonderful place to chat, where there are so many people happy to share their journeys with you. Good luck with yours, I look forward to hearing your updates. I have only been a member for a short time myself but have met some lovely kind and helpful people here.

I am a fellow Epclusa traveller. I began my journey on May 1 and tomorrow with end week 5 for me ( I am in Australia) I am geno 3a. (been carrying it for nearly 40 years) It had never caused me any problems. I don't know what my viral load was before treatment or my 4 week bloods. They tell me that the number of the little blighters running around in me is unimportant and has no bearing on my treatment. Best treatment plan is what genotype, fibrosis level, ultrasound etc.

I was Lucky. My tests all came out pretty good, particularly with genotype 3, and carrying it nearly 40 years. My fibrosis level was around 8 1/2 from memory. In the greeny yellow section. My ultrasound showed no fatty liver, cancer, etc. My ALT was 72. My AST was 67. My blood test last week I am now ALT 16 My AST 23 so alls going great.

I eat pretty healthy. I am a vegetarian so lots of fruit and veg, lentils nuts etc. I find on treatment I am craving the naughty things in life like cake. Been giving a bit too. LOL. I Figure its my body telling me it needs some sweeties. My treatment is going very well. We are fortunate to be on treatment in a time of these wonderful new DAA's. So many success stories and very little side effects. My side effects are minimal. Most may be side effects but may not be. The one that I know is without a doubt to do with the treatment itself or these darn bugs exiting their comfortable  home is a weird feeling in my head, sometimes with a little nausea, but nothing that is causing me too many concerns. I walk quite a lot also, trying to make my 10,000 a day. There have been a few days I haven't made it since starting treatment I must admit but I have also had some 15-20,000 days.

Try not to stress. Stay positive. Good Luck. We can win this war!



__________________

66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30

Tig


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Hi JB,

Welcome to the forum! I’m glad you found us, too. We’re here for answers and friendship as you make your journey to the cure. You need to know this, too... you’re never alone around here! Got it? wink

As earlier mentioned, if your Mom had Geno 3, you may have been born with it. It’s uncommon, but it does happen. Find out what she was diagnosed with. That may be the answer. It doesn’t really matter how you got it, but more of getting rid of it. There have never been easier treatments then there are now. I did the same thing your Mom did and it was awful. You won’t experience anything close to that. Fatigue and headaches seem to be the most common side effects. If you commit yourself to a gallon of water daily, you’re going to avoid a lot of it. Stay rested and follow that diet I put on your other thread. 

When you get a chance, set up your signature line with some history. There‘s a link in my signature that explains the process. You can see from ours what is typically added. Do your best not to worry about this, it’s actually an easy journey and nothing like the old days of treatment. You got this in the bag... 



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Tig

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

Hep C FAQ   Lab Ref. Ranges

Signature Line Set Up/Abbreviations   Payment Assistance

 



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Hi JB,

welcome and congratulations on getting started on Epclusa. This is the best time ever to have HCV because these drugs are miraculous. If your mommas HCV was geno3 then that may be how you got it...she may have had a small wound when she put a bandaid on your skinned knee or just about anything you can imagine or...it could have been from a completely different source...I sure do understand how a diagnosis of HCV could occupy your thoughts.(its shock I think) but as you wisely realized, it really doesnt matter, what matters is you are now on your journey to wipe out that dragon.  

I tell my children (who are around your age) worrying is like praying for the worst...so keep a positive inner dialogue.

Its great that you are walking...9,990 step a day. smile Good for you (literally and figuratively)

 

Youre not alone, we have a lovely family here that can relate and advise and listen and care .

Alison

 



__________________

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

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



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welcome JB

sorry to hear you aquired the virus ; possibly thru your mom some how?

anyway, welcome to the treatment train. 

i am on my second month of harvoni, also a DAA. these direct acting antivirals are magic.

my first month was easy enough, only about 3 hard days.

right now i seem to be experiencing more fatigue, feet pain and grumpiness.  i had the feet pain before so that might be the humidity right now.

so, there i am at work being a little snappish when ppl get on my nerves  [pestering me]. 

if this keeps up i will take myself to the dr and get time off. tonight is the first time i felt like this tho so hopefully it's just today. or maybe the pesters will just leave me alone

i'm glad you are eating well and drinking the water.......but yea, it can be a scary journey, so we are here to talk with you. 

and ditto on the alcohol , not worth it to put your liver thru that ever again



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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=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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Hi JB,

Welcome to the forum! You have friends here who will help you through your three months of Epclusa and will try to answer your questions. Don't fret about how you contracted HCV, stay positive and realize Epclusa is highly effective for genotype 3. Assume you will be cured. Drink that gallon of water daily and don't be surprised if you get some side effects like fatigue that might last a few weeks and then go away.

Of course no alcohol at all for the rest of your life, even when you are cured. Not even an occasional beer, commit to an alcohol free life now. I'm probably just repeating what your dr has already made clear. Your viral load should be expressed in IU/ml call your dr for clarification.

For comparison Epclusa put me in bed the first four days I took it then I felt OK, some light fatigue. Towards the end of the second month I had the heavy fatigue again for a few weeks. Everyone reacts differently Epclusa just doing its' work. Call your dr if you experience side effects that bother you.

I finished my three months 3 days ago and feel great. No fatigue at all. I'm older and have some other problems like arthritis and a bum knee I have to deal with but those problems will be managed. Best wishes and the three months will pass quickly.



__________________

Male, 65, Dx 1990, GT 2a/2c. Pre-treatment VL 11,500,000, ALT 10, AST 18, Fibroscan F3, 12.4 kPa. Rx 12 weeks Epclusa, SOT Mar 8, 2018, EOT May 30, 2018. 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.

JB


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Hi everyone! I'm so glad I found this forum. I've been lurking for a few days and have done tons of research over the past several weeks. I live a fairly healthy life. I ate OK, however, ate a lot of junk and processed food. I drank only moderately. I'm not overweight, just a normal guy in his upper 30s.

I was having some chest pains in March so decided to go to the doctor to get an annual physical. I haven't been in more than 10 years. Yes, I know - stupid of me. But I did it. Fortunately, everything with my heart was good and the chest pains have since gone away.

However, the doctor was concerned with my AST (116) and ALT (201) numbers. We followed up with some additional blood work and an ultrasound of my abdomen. They found some fatty liver (NAFLD). The Hepatitis panel showed >11.0 High for HCV (Side question: Is that my viral load?). 

I followed up with a gastroenterologist and we did some more blood work to discover I have genotype 3. Of course, the rare kind that only 10% of people with HCV have. I felt like I couldn't catch a break with any of this. Because of the genotype, we did a fibroscan. I think they said I was sort of right in the middle. Maybe 3/4, if I recall. We have an MRI scheduled for the 12th of June to get a better look. 

Of course everything throughout this process is running through my mind. How did I get this disease? Why me? Well, my Mom had HCV in the early 70s (I was born in 79). She got it from a blood transfusion after a car accident. Her doctors back then basically said it was dormant and that things had improved (they obviously didn't have the meds or knowledge back then). Just about 6-7 years ago, it came back. She had bad itching and got the word that her HCV was back. Unfortunately for her, she went through some rough treatment (shots every week, hair loss, etc). So, was this how I got it? I have no tattoos, I don't do drugs, maybe through a sexual partner? But who? Who knows. The doctors say it is very rare to get from mother to birth, but possible. After all these thoughts, I finally just looked beyond it and had the mentality of who cares - lets beat this thing. 

Fast forward to today, I began Epclusa on the 27th of May. So far so good. No real side affects <knock on wood>. I have changed my eating habits, drink lots of water and walk every day - in May, I averaged 9,900 steps per day. Go me! I do need help with my diet, but we'll save that for another topic on this forum <lol>. 

I'm confident in hearing all the success stories of these drugs today. But, like everything else, I feel like it'll be my luck and it won't work. I'm stressed about it, sad, confused and am a single guy living by myself. I've got a few family members I can talk about it with, but they are out of state. 

Sorry for my on-and-on. I'll keep a positive outlook from here on out. I look forward to everyone's insight, encouragement and knowledge as I continue on this journey. 

JB



__________________

39/M, Dx Apr 2018. GT3. Possible HCV since birth. Pre-treatment VL 653,000; ALT 201, AST 116, Fibroscan w/ Fscore of 3 w/ some fatty liver, Tx 12 weeks Epclusa ended Aug 18. MRI June showed no cirrhosis, but something on liver - possibly artifact 1.4x0.6cm. EOT VL undetected w/ ALT/AST normal. 

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