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Post Info TOPIC: Just jumped on the Epclusa Train!!


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RE: Just jumped on the Epclusa Train!!
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Hey, it's our lovely LM.

Yes it IS great to hear from you, and with great news too.

Very pleased for ya.

How is you, and hubby and doggy and every little thing?

How did/is your friend with the MS making out?

We love your good reports, long ones too, if you were so inclined.

Glad to hear from you. 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)

Tig


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Hi Linds! It’s so good to hear from you. Congratulations on the wonderful news, SVR 52, woohoo!! Is it possible it could be an entire year? That year went by in a flash. 

With liver enzymes like that, I can tell you, that’s one happy liver! I hope you’re noticing some renewed health and stamina. It can take some time to accomplish, depending on the condition of things. Just know that you’re exhibiting all the tell tale signs of complete success. I couldn’t be happier for you!

Be sure to stay in touch. We miss you! smile



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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!

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Hello to all my HCV friends, especially Tig and Canuck.  Just wanted to check in and say hi!  I haven't been on the board in a while, but recently had my one year check up and am still cured!!  ALT and AST are both at 17.  I'm doing great and wanted to say thank you once again for helping me to get through this journey!  I owe you all my sanity and could not have done it without your guidance, support, and love!  biggrin



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Maybe Lamont can shed some light on this? 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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Ya, both the links are good. They both list most of the MS drugs, including the interferon beta-la and lb, and copaxone (what Lamont has had I believe) and all are dif from one another. That was my thinking too Tig, an effective alternative with less cost? I don't know much about the dif drugs they use for MS. There was a bit of a description on the different actions in the first link as well. Maybe send your friend both these links, and see if she and her doc had already perused and discussed all the drugs and which ones might work best for her, considering everything. Maybe she and her doc have already explored and decided on the right drug choice for her, but then this still leaves her with the cost problem. hm. 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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Hey Linds,

I came across this in my travels, it might be something your friend can discuss with their doctor. The price of Avonex is wildly expensive and their patent was extended to 2026. There isn’t a generic. Crazy to see all of these brand name drugs so unaffordable...

Avonex Alternatives



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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!

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Tig and Canuck-Thank you both for your responses.  I pm'd Lamont and hope he may be able to give me some insight to pass on to my friend.

C, in answer to your questions regarding my polyps, I haven't actually seen my Doctor (NP) since I had the ultrasound as she didn't seem to think a follow up was necessary.  I received a call from the nurse with the results and was mailed a copy.  The pain seems to have gone away for now so I'm willing to take that as a good sign and not do anything further at this point!

Hope everyone is finally enjoying the springtime weather that we're experiencing here!  Nice to finally see the flowers in bloom!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Hi LM,

Sorry, no experience trying to source better pricing for this drug.

This is a Canadian site:  https://mssociety.ca/managing-ms/treatments/medications/disease-modifying-therapies-dmts/avonex. Not helpful for your friend. Lists many kinds of drugs for MS. 

I doubt there is another, cheaper "generic" equivalent for this "Avonex" (interferon beta-la) drug, nor another drug that works in the exact same fashion.

In the USA, same as here, if I did not have additional insurance to help pay for expensive drugs, then i would exhaust the help of the prescribing doc to figure out if pts. can get this drug at a reduced cost. I would assume there are (maybe) some limited avenues to get insurance or drug company subsidies? Or, a similar MS society in the US (as above), to start asking around how people can qualify for financial aid for these expensive drugs? 

All I know is that (for instance) some mental health drugs "can be" free up here, IF the doc makes a complicated "special authority" request, with forms to fill out, and IF it gets approved. Another way up here, is for people of low income, if people have spent X dollars per year on scripts already, then after a certain limit (income based), the government starts to pick up some of the cost of further drugs that year. Very limited assistance up here (via our regular "public" system), and I have never figured out how your "medi-care" system works down there! I can imagine it's just as limiting and complicated, just another version.

She better exhaust looking at everything and everywhere to see if she can get the cost reduced. Always try the source - maybe inquire with the drug company itself regarding aid in buying the drug, if she has not already. Nice you are trying to help her.

Polyps!! Tell them to begone. No hitchhikers allowed, but at least you have some sort of plausible explanation for that discomfort? Does it make you feel any better to know at least that there is some possible explanation for what you were feeling. What did doc say about them? Did he co-related them to the discomfort you had been having? Did he have any opinion or advice about them? Glad the discomfort has slacked off of late.

How are ya doing otherwise. I too am so glad to see spring/summer again! It seemed such a long winter. : ) 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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Hi Linds!

It's nice to hear from you. I'll have to do some looking on that MS information. In the meantime, our member Lamont, mentioned he has been under care for MS, too. Here is his profile page, Lamont Cranston. He's very helpful and I'm sure if you send him a PM, he will respond. If anyone knows those ropes, it will be him.

I'm glad you found out about that RUQ pain. The polyps diagnosis is more common than many think. The only time they will remove your GB because of it is if it starts to obstruct the common bile duct. That's the same type of issue people experience with gallstones. Once that duct closes, the gallbladder gets very angry! If you don't need surgery, avoid it. We've all gone through enough! 

I'm going to enjoy a quiet Cinco de Mayo and go to a friends for dinner, maybe a trip to Waldog and watch a few Walmartians for fun. I will be watching the Derby, no picks yet. Looked like it was raining earlier. A muddy track always favors the longshots! Enjoy the day! smile



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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!

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Helllooo HepC friends!  Just checking in to say hi and see how everyone is doing.  I am doing well and thrilled that Spring seems to finally be here!  I did have an US for my RUQ pain and the results determined that I had small polyps on my gallbladder.  Other than that, everything else appears normal.  The pain has actually subsided recently and I'm hoping it will just go away completely!

I have a question for all you marvelous gurus out there!  It's not Hep C related but Tig and Canuck and others seem to have a plethora of knowledge about a multitude of things, so thought I'd pick your brains first!  I have a friend who has MS and is about to go on Medicare.  She is going to be paying an exorbitant amount for her medication, Avonex, and I'm trying to help her find a source that will help her, similar to the aid many of us received for our HCV meds.   Just wondered if anyone can help me with a website that might be helpful to her.  Thanks in advance.  Happy Cinco de Mayo and Derby Day!!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Hey LM, 

Sounds nice  (your away). I am doing an "away" right now, not as fun though, 2 hour drive to the next real city over, staying overnight, going to the periodontist tomorrow to be gouged physically and my wallet. Wally-world on novacaine will be my version of a holiday before I go back home tomorrow.

Nice you got folks/friends in Texas to go visit!

Good you are back to see your doc, yup ask about the persisting RUQ, maybe it will turn out to be a very mysterious but nothing thing (I hope). I had a pain (for decades) intractable, mysterious, it grew over the decades, became constant, and just had to learn to live with it, just got worse and worse and never left, always thought it some kind of bizarre musculo-skeletal thing!, after cure, one day, and bit by bit, it just vanished!!!!!, completely! - you coud have bowled me over with a feather! I could hardly believe it!!, it just up and disappeared, vapourized, I kept waiting for it to return, but it never did. Man, was I EVER happy about that - my hep doc still does not agree with me that it had anything to do with my hep, I disagree strongly. I have had a good look at my imagings, no real bony reasons evident to account for such a profound turn-around in the pain. The only dif was the lack of hep, so that's my story and I'm stickin to it. I draw a straight line between that pain I had and the hep. I hope your pain just up and leaves all by itself one day too. In the meanwhile you are doing the right thing, and get your doc to keep checking it out.

Let us know what the doc thinks.

My dog would be completely passed out in the vehicle, we always hoped she would just keep sleeping on our 2 hours drives over to the next city, but nope, she would magically wake up, exactly a few seconds before we were trying to pass a lake she liked, no matter how much of a hurry we were in, she would somehow become conscious and make us stop. How do they do that?

So, do your eyes "feel' any dif? Did you give anymore thought to yoga? Nice to hear from you. 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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Hello Tig and C-

Thanks for checking in with me!  I'm doing pretty well, thanks.  I have a follow-up appointment with my GI NP on Wednesday since I haven't seen her since my Feb VL.  I'm still experiencing RUQ pain and going to ask her about that.  I'm suspecting it's gallbladder or bowel, but I do need to find out.  Otherwise, doing fine and still working on believing that I'm free of the dragon!!

My hubby and I just got back from a two-week road trip (couldn't leave the dog behind!) to Texas to see grandkids and friends.  We had a marvelous time and came back just in time for 10 inches of snow!  Yippee!  Looking forward to Spring!

Hope all of you are doing well and staying healthy!

Linds



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay

Tig


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Hi Linds,

I saw your Vosevi post to RC, too. How cool was his news? Yeah!

It’s always nice to see our longtime members checking back in. It has been kind of quiet around here and I miss the interaction with all of the friends made over the years. So, it’s a fine day when y’all check back. When you do, whomever you are, be sure to fill us in on all the particulars. Your success brings hope and confidence for those beginning their journey. smile 

 



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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!

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HI LM,

Saw ya wandering by ... just wondering how everything little thing is going for ya. Seems so long since your Feb SVR12, time flies eh, hope you have been feeling "some" improvements. Did you ever investigate into the possible yoga thing more? Do your eyes feel any dif now since that fixing? Are you still having some gastric issues? Let us know how you and hubby and pup and all things are doing. Missin ya around here. 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)



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You're right, Tig! I think it's still sinking in. But each day is better than the day before, so I'm getting there!  We do have a lot to be thankful for, not the least of which is all of you here!biggrin



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay

Tig


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I love Happy Warriors! Are you feeling the rush, Linds? Takes a few days for it to sink in, but when it does it feels great. We have much to be grateful for



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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!

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OH PS!!  Thank for my songs!  I LOVE your choices and yes, the stars do look very different today and I am HAPPY!!  Thank you for giving me one more reason to smile today!  You have been a huge support for me and a good friend!!  It's all up from here!!biggrin



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Yippee Aye oh Lindz!!! Congrats, Congrats!! Celebrating with a space oddity wake-up and a don't worry be happy!

 

https://www.youtube.com/watch?v=iYYRH4apXDo

 

https://www.youtube.com/watch?v=d-diB65scQU 

 

 



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Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, VL 4/8/12 weeks - UND, 90 day SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND at 13 weeks!

Club Zero Member.

PoloSilver



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Hahaha C!  You hit the nail on the head!  One minute so frustrated and angry and then when the good news comes, you want to send them flowers and candy!biggrin  My NP said I don't really need to see her now that I'm considered "cured" although I do need to check my LFT's every three months for the next year.  I may make an appointment with her just to go over anything I may need to know, but I think she's probably ready to dump me!  Obviously,  some practitioners are more empathetic than others.  I will probably bring them a batch of cookies on my next visit since I was likely one of their more "persistent" patientsbiggrin.

I'm going to keep checking in here because I feel as though this is a unique family that I want to keep in my life.  Canuck, you have a humongous heart and your ability to grasp the emotions and ups and downs of this experience are invaluable, not to mention your unique sense of humor.  Thank you from the bottom of my heart.

Thank you, Tig for your unceasing positivity, knowledge and support. I can't really find the words that adequately express my gratitude but please know how much I appreciate all that you do.  I am constantly amazed by the dedication that all of you put into this cause and will be forever grateful that I was lucky enough to find you.

And finally, thanks to all the other dragon slayers who have offered kind words and support during this journey.  I feel incredibly blessed to have such an amazing group of people in my corner.  I will continue to send positive thoughts and prayers to all the warriors, past, present and future until this insidious disease is eradicated.

xoxo



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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WOOHOO so happy to read this LM. happy liver.jpg



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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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Congratulations fellow dragon slayer.



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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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Hey Hey LM!

Now THAT's more like it!!! Finally! You got your EOT+12 week SVR ticket.

Welcome back to the exclusive "Club 0", so happy to see you here again madame! - we have reserved a special place, just for you, here (in this beautiful, warm, comforting place), since week 4 actually, but please know that your reserved spot here has just been made permanent! Enjoy. There can be no better viral holiday, unlesss ... of course you wish an upgrade at EOT+24 weeks? Just let us know. 

Related image

Oh LM, I am so glad they did not keep you waiting another day for your results! Despite having to wrestle for it, it does mean everything and feels so good to have those prized results, doesn't it. smile

Funny that, we can be SO peed off at them one minute (at a lab technician who goes tortuously sadistic on you, or a docs office who taunts and delays you by dangling lab results just beyond your reach) ... and then, the second we get those magic words UND, almost ALL is instantly forgiven! I think it works like childbirth, wanting to kill your partner and everyone around you during 3rd stage labour, and as soon as that little life is in your arms, the pain fades away into the past. There's GOT to be "viral" SVR hormones like that too I think! No other explanation for it!

I'm good at holding a grudge tho, I still think you should consider getting even with them.

Did you celebrate today with anything specific?? Did you stock up on that 2 gallons of maple walnut ice cream I suggested? 

Orrr, you could celebrate by killing them with kindness, and have delivered (anonymously) 2 gals of maple walnut ice cream to your docs office - THAT might have an entertaining effect. wink

Seriously, I am so happy for you, that you have reached this milestone. You did really well, you and vel and your hubby and pup. 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)

Tig


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                ~Hear Ye, Hear Ye! Be it Known~

                              Warrior Lindsay     

                           Is Awarded This Day

                                     The Title

                                                   

 



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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!

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Thank you for your kindness and support, RC.  You are a beacon for all of us with your strength and bravery!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Thank you Tig.  Your guidance and support have been immeasurable!  



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Hi Lindsay. Your Story and Journey to SVR could not have been any better. You were diagnosed in June 2017 and here we are just 8 months later and you have stayed a Dragon! Enjoy your victory- you deserve it  RC



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 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18

Tig


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HOORAY!!!  Congrats Lindsay  

I know you were nervous, but I knew this was never in doubt. You exhibited every  sign of success along the way. I know when you’re talking about yourself, it’s difficult to be the concrete observer, but WE knew you were destined for SVR. These new treatments, done right, are the real deal. 

You did it and I’m so happy for you! 

PS: Glo knew it the whole time wink

EE6859CF-B883-46F0-9F99-706AA06D67DA.jpeg



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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!

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Just got an email and I am UNDETECTED!!!!!  HOORAY!! HALLELUJAH!!!!  Thank you to all of you here who have helped me through these emotional days and months!!  I honestly can not imagine how I could have managed without your support and kindness!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Whal shoot! The only recourse is to get even then! Plot some dastardly deed on par with what they are putting you through!

Still, take solace in knowing you have done everything humanly possible to orchestrate your cure, and that you did it (every minute of it) extremely well. Being very (justifiably) proud of yourself should take some of the sting out of them irritating and taunting you so with their screw ups. 

Personally, I did a lot of private gloating after that last pill went down my gullet. Quite a feat we have got through my lady! Hey, me too, I want a certificate!! I had to make my own. biggrin C.



-- Edited by Canuck on Wednesday 14th of February 2018 07:04:11 PM

__________________

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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Thanks for the positive vibes, Tig and Canuck.  C-Like you, I grapple with trust, especially when it comes to the medical profession.  No one is going to be as persistent as I am in getting answers because it's more important to me than it is to them.  I get how overworked the medical professionals are today and I have nothing but time to make sure I get the best treatment I can.  That being said, it still irritates the s*** out of me when there is incompetence or just plain laziness.  I am in awe of some of the reports from people here who say their doctor called on a Sunday with good news or that they received a Certificate of Completion when they were finished with treatment.  How lovely to have someone like that rooting for you!  It's reassuring to know that they're still out there.  Needless to say, I already looked into the possibility of another lab but there are none nearby.  As you said, it would probably come in after the original anyway!  Murphy's Law!

Tig-thanks for the kind words and little miss Glo!  She looks like a very Zen fish!

I will continue to do my meditation and hope for a resolution soon.  Needless to say, I will pass on the results here as soon as I have them.

Thanks again, my friends!  

Oh, and HAPPY VALENTINES DAY to one and all!smile



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay

Tig


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Hey Linds,

That really stinks! That’s my kinda luck. I don’t think you have anything to be concerned over. With LFT’s like yours, I’m confident of the outcome. Spend the time planning your celebration. It won’t be long and you’ll have your answer.

I have an idea. Here is my therapy fish, talk to her, her name is Glo. They’ll always help take your mind off things! She hates Dragons, too. My kind of fish....  wink



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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!

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Don't know which is worse (1) being kept waiting, (2) being scared while kept waiting, or (3) or being made very angry while waiting (perhaps the worst would be scared and angry while waiting).

I guess the best of your choices is mad, you don't need to be scared.

But you are entitled to be mad. I know the place you are in. At least you did (for your very good efforts) ACTUALLY find out why they have been keeping you waiting (what stupid thing that has happened which is causing you this angst) - often it would take me forever to find out WHY they often tortuously delayed giving me my results, and just to add insult to injury, in the end it was (at times) simply for reasons like "staffing logistics". My file handler is very busy, "I will get around to your file in the next few days", etc., etc., then ... she has days off, then ... she has a new influx of demands piling up, and when you are able to get to "her" place in the queue (after many phoning/emailing efforts) she then informs you she can't send it as the doc is now away on vacation for 5 days, and he has to initial the results first! Then, when I finally get the lab results ... there is a page missing!

But I was really my own worst enemy, I refused to accept verbals on the phone - knowing from rare prior experience that it is possible for humans to say/read/relay incorrect info. I would take comfort to hear them say that I was UND, but I would not publish my UND to others (officially) until I had the actual lab paper right in front of my own beady little eyes!. Silly (I know) but I always want everything in writing! Did I ever mention I have trust/mistrust issues? heehee I have had some very interesting experiences in the past with medicine "done by receptionists", I never recommmend that.

So, the only thing I can think of (aside from the waiting that you seem to be required to do), is to ask if there is another (dif) lab facility you can go to for a re-draw for your PCR (that is ... if all the labs are not already sending draws to the same PCR place!) - you may just out of luck on that front. Maybe every lab in your area submits all the PCR blood to the one and only facilty that does PCR's! There might be a lab near you who uses a dif PCR place.

Worth a query. But even if there is  another (dif) functional PCR place you could send a new draw to, (Murphy's law) by that time, maybe your first PCR draw would be back!

Ya just can't win sometimes! Frustrating, but keep trying. 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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OK-I need to vent.  I had my SVR12 blood work last Tuesday morning.  In the past, I have gotten my VL results back in two days. but I understand I may have just been lucky.  I called the lab (Quest) on Friday and was told the test was still pending and the turnaround was 3-5 days, up to a week.  The rep said they probably wouldn't be back until Monday.  SO I called Monday and still pending and again today-same answer.  I finally convinced my GI's office to call the lab and they were told that the equipment used to run this test at their lab is malfunctioning and there is no eta on when it will get fixed.furious  I realize there are only a limited number of labs that run this particular test, so I guess I am at their mercy, but I am just beyond FRUSTRATED!  If I didn't have this annoying twinge in my RUQ, I probably wouldn't be as anxious, but I just want confirmation that I'm UND.  Grrrr...



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Thanks, PS and Wendy.  I am thrilled about my low LFT's.  Will be even more over the moon tomorrow when I hope to get my SVR12 UND!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Wowee Lindz!!

I'm with Wendy, never seen  nor heard of LFT's that low! How low can you go girl? You win the LFT limbo for certain! Congrats, Congrats --- what a wonderful experience to give HCV the boot! 

ps



-- Edited by polosilver on Sunday 11th of February 2018 01:34:52 PM

__________________

 

Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, VL 4/8/12 weeks - UND, 90 day SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND at 13 weeks!

Club Zero Member.

PoloSilver



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OMG I have never heard of LFT's that low. Single digits that is impressive. LM I have learned all in God/Goddess's time and he/she does not wear a watch Maybe that's because Jimmy has all the watches, or wait, he sold them right?  



-- Edited by wendyo on Sunday 11th of February 2018 08:22:48 AM

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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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Thank you, Tig.  I will try to continue to stay positive but it sure helps to have your support, encouragement and understanding.  



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay

Tig


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Linds, Linds, Linds...  girl, with enzymes like those I’m surprised you don’t feel your liver dancing around in celebration. Don’t Worry, Be Happy! Sometimes labs and especially specialized tests like a viral load, take longer. They used to take weeks to get back when there was only a few facilities and old methods. Trust me, we know that nervousness and it’s not healthy, nor worth it. Take our advice and remove those doubts. These are effective treatments, you responded early and your LFT’s are stellar. It certainly looks like a win to me.

I want you to concentrate on all the positives and be excited about your continued success. There’s no reason to think otherwise. There are great times ahead!



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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!

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Me too LM, I feel grateful to be here and to know and appreciate everybody here. I can't begin to tell you how much this place and all the folks here have helped me. Who ever thought up this idea was brilliant! It is like family (sorta), better in some cases (heehee). 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)



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Thank you, C.  I think I knew the answer but hearing it from you is like a gift from God (or Goddess!).  You are the most empathetic person I've ever had the privilege to know and it's such a wonderful trait and SO appreciated by so many.  You seem to grasp the inner feelings and fears that we all  have and are experiencing and I only hope that you were able to find the same kind of support when you were going through your own journey with Hep C.  I just don't have the words to express my gratitude to all of you here, but especially you, Tig and PoloSilver, who I've also bonded and formed a friendship with. Maybe that's the silver lining to all of this turmoil and uncertainty and for that, I am forever grateful.  We really are like a family here and one I could not imagine being without.  You give so much of your time and knowledge and you obviously all have huge hearts.  Thank you just doesn't begin to cover it, but please know how heartfelt it is.



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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LM,

Hm, don't wind yourself up - counter productive - be soothed (for the time being) with at least knowing your continuing nice low ALT and AST - that has been a telling marker ever since you got your very first (early) UND! The UND's and normal LFT's go hand in hand - with your early ALT crash and VL crash, and staying that way since the get go (aside from the fact you have just done about the best curing drugs in the whole wide world!) this is why I am confident you are UND. I think you know it too, but i know your frustration while waiting, well!

Boy, (generally) most of you guys seem to get your VL results back so relatively fast!. I sometimes had to wait for weeks, and I understand how gruelling waiting can be! It was my pet peeve, more than a pet peeve, it used to make me very angry. And of course even though i KNEW I was going to UND, still, it's will not feel official until you have the results, so it can leave time for your mind to fantasize. Don't go there, stick to the facts you know, you have been UND all along, LFT's normal, and you will be perfectly UND, again, now, and from now on. You've already won!

Start preparing a little something for you and your partner to celebrate the day you get this UND result back, think of something special and appropriate - it will help distract you today. Go out and buy him a congratulations card or some other weird idea like that (I am full of weird celebratory ideas!) maybe pick up a couple gallons of maple walnut ice cream, build a cake, you could sit down write a long good-riddance and good-bye letter to your virus, but you might have trouble addressing the envelope, as the viral occupant moved on and disappeared long ago.

You already entered into the beautiful territory of Gilead's "no trace camping" rule forest.

I mostly got very mad when they kept me waiting weeks for my results. Phone AND email them again tomorrow, maybe the results will be in by then, if not you got the weekend to practice partying.

It's a good day to practice that 4-7-8 exercise, and WTH, splurge, do it with your eyes closed! wink C.



-- Edited by Canuck on Thursday 8th of February 2018 05:18:53 PM

__________________

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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Tig or Canuck.  I still haven't gotten the results from the VL and am working myself up into a complete lather!  I know it's only been two days but normally I have the results by now.  I emailed my NP's office and the nurse did say that the ALT was 5 and the AST was 7.  Can I safely assume that I will get an UND when it comes in?  It's been well established here that I am a ball of anxiety and I can tell this is affecting my BP today.  I have done everything humanly possible to reduce my stress but nothing makes me feel better than a positive word from one or both of you because I trust you both so implicitly.  Thanks for letting me vent!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Look forward to your results Lindz!!

ps

 



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Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, VL 4/8/12 weeks - UND, 90 day SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND at 13 weeks!

Club Zero Member.

PoloSilver



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C-  You are such a bright spot in my day!  I was laughing out loud about the yoga lady!biggrin  Sometimes it's as though our minds are syncing!  I was just reading about restorative yoga.  It does sound like more meditation than body movement but might be a nice "mindfulness" trip too.  Eventually, I'll get off my a** and sign up for them!

Yes, I am still on Pepsid and am going to try to avoid getting back on the Dexilant.  It seems to be working well so far and if I can avoid getting back on a PPI and just stay on the H2, that's what I'd prefer to do.

I emailed my GI office today and said I'm baacckk!"  Wanted to give them a heads up that I gave to the blood bank today and would appreciate the results ASAP.  I'm certain they'll be happy to see and hear less of me in the future!  I will, of course, post my results here when I get them.

Thanks again for the giggles!

 



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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LM, 

Who in the world would have EVER dreamed we would be SOOOO looking forward to having painful spikes driven into our arms for bloodletting. It's times like these that only make sense to us!

It will be a good day, another milestone to show for all this hard work you have had to do.

You will be UND again my dear, and will stay that way. You and Gilead have done it.

H2 antagonist or H2 blocker is the "Pepsid" you are on. They switched you from ... something else ... to the Pepsid when you started your epclusa, and I think? you are still on it?? Just wondered, if you were still having reflux probs, or were thinking you needed to switch back to what you were formerly on, or if you noticed any dif/improvement in gastric/acidy reflux probs in general or if it was still about the same level?

Ya, if I don't "religiously" take the fiber cereal WITH extra fiber on it, AND have enough water intake, sure as shootin, I end up bunged up. Those three simple things alone, keep things working for me, as long as I do them pro-actively every day.

The lady who often ends up on the floor beside me in yoga class, is a riot, she grunts and groans and carries on, she always makes me laugh, we make each other laugh actually, much to the instructors chagrin sometimes. But boy has she ever got the relaxation part down pat!, she immediately starts snoring the instant we start on the total relaxation parts of the classes. She woke up, and asked me, is it over yet? (The class she meant)- thats' how deep she goes in just a split second, she couldn't tell how long she had been out! My instructor has another type of yoga class, I've never been to that one (yet), "Restorative" yoga, and she says VERY often she has people who fall to sleep in that class!

For these breathing/relaxation exercises you are practising - they say you should practise them with your eyes open, not wide open, but not closed either, just open or slightly open, you will get used to doing the breathing with your eyes open, and this will help you to not fall asleep but to continue with the relaxation and breathing exercise. You can also pracise the exercise sitting up, versus laying down, this may also help in not falling asleep. 

EOT+12, is a very good place to be! When you get your UND back, it will be one more layer of well-deserved rest and relaxation to waft over you. 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)



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Thanks Tig!  Fingers crossed!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay

Tig


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Don’t you worry, Linds! You got this....

A5C1E8FA-7541-44DB-8749-EBE45173B49C.jpeg



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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!

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Hello dear C-  I so enjoy reading your posts!  You are such a clever word slinger and each post is a treat to read.  I'm not sure what you're asking me about the "H2 antagonist".  Gastric conditions are somewhat improved.  I've started taking Miralax daily but that comes with its own issues (gasconfuse).  Your mention of fiber cereal in your diet is a good idea and I'm going out to get some today.

You're probably right about yoga modifications due to my wrist injury.  Of course, first I have to start taking the classes!  Haven't signed up yet.  I am enjoying my journey into meditation and feel that may be helping me somewhat with my anxiety.  Unfortunately, a couple of times it has put me right to sleep, which is likely not the purpose!

I'm going today for my 3-month blood work.  Positive thoughts and vibes, please!!

 



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Ya! ya kint be tooooo karefull. Hurt myself worse in the weight room one time (well ... actually twice. I've always been a slow learner)! I am NOT physically adept, at all! I have hurt myself at "boxer-cise", regular-cise, yoga-cise too. She-et, I can hurt myself walking down a hill, or often just by steppin the wrong way, in my own house no less! 

The thing I have learned to do best at the yoga class? ... I take a bottle of water with me, and I usually finish it before the class is over! I do think tho, just going, the concentration, the effort, is rewarding in itself. But I HAVE actually made "some" small but important physical gains with the yoga classes, even if it is not enough to be a "sufficient" amount. Winter around here is seriously getting old and getting in the way of my other form of "walking" exercise.

I am wondering LM, what with both you and Lamont having such bad past wrist injury/fracture thingy's, it may be a bit hard in a yoga class to modify your hand/arm/shoulder wgt bearing positions so as to not strain stuff. I have to do that for my wrists most of the time in any class, and for one shoulder that I can tweek if I am not careful. We come with handicaps and stuff that have to be worked around. Worrisome in how to allow for a L1/2 herniated disc I guess. 

So, us epclusers and super-dooper-epcluser-plus people, being lovingly cured by Gilead of the scurge virus - await the final outcomes on ALL our health states. I (for one) have found I cannot get by without "regular" (pun) hydration, fiber cereals and fiber sup/additions to my diet, otherwise, bunging will occur! Nice (other than the farting syndrome Lamont) that your GI appears regularly "happier" overall.

LM, are you still "making do" with your H2 antagonist for now?? Do any gastric/acidy conditions seem changed, or unchanged so far?

I sniff spring, it's juuuust around the corner, the sun will be shinin, de fish will be frying (or flyin) and health investments risin. 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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Canuck wrote:

Ya, the distraction of yoga could be helpful, can't hurt anyway. Do you do self-yoga or go to a class, maybe a "class" would be good, I prefer classes as I have NO self-discipline.

My partner had a extreme white-coat episode of hypertension, we went to an important stress-provoking appointment, together, with his specialist, while in the room and during the routine exam his BP was 190 over 100, the doc just burst out in a huge loud guffa - after doing both right and left arms,  "jeez, look-at-that!", he said, we all decided to take his BP twice a day for a while after that, boringly normal for 2 weeks, so a none-event, but served to amuse the specialist no end in the moment - who knew he possessed THAT much whitecoat power! heehee 

ooommm. C.


 eee

Be careful with Yogi

When I first became 'acute' with HepC, I was dreadfully backed-up and resorted to yoga to get things moving. Not only did it not do Sh"&t, but I herniated my L1-L2 disk. The next 6 months I was in various stages of agony, and disability.

After a long odyssey of medical "lurching" I sam screened for HPV...and "oh, you gave classic symptoms"...

Anyway...now a couple of weeks Post Cure, and things are moving nicely, with No Yoga.



__________________

Lamont Cranston "Only the Shadow knows."

65 years old, retired IT Network support 29 continuous sobriety in AA, ,DX'd in '99 with MS, DX'd with HCV 2, 2b , F0-F1 3/17/2017 VL 5.7m Starting EPCLUSA 7/28/17

No Virus Detected on November 20, 2017 3 months after EOT

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