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Post Info TOPIC: J&P - Our Epclusa Journey :)
Tig


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RE: J&P - Our Epclusa Journey :)
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Hey Cheddy,

I wish I did, but alas, no updates in over a year. I did some looking and discovered that Jane has deleted her account with the forum. I hope things are well for them. I would like to think all is working in their favor. If anyone knows, it would be nice to have that information...



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Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

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I've been "off line" for a while.  Does anyone know how things turned out for Phil and Jane?  PM if you care to.



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

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

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

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



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https://www.youtube.com/watch?v=sXmrMMYpQL4

I kept saying Janey Janey Janey when I read thru all the posts. So there is the song. Yes, you are playing a game, not with love or a boyfriend but with your liver, treatment, etc. The way I look at it is we were given the gift of treatment and drinking is a slap in the face to God, the universe, whatever you believe in. Many people cannot get on treatment and would give anything to get these precious pills. PLEASE abstain while on treatment. Do yourself and those that love you a favor. I am trying not to be judgmental and will add if you are not an alcoholic, you do have the power of choice. You can do this. Do not beat yourself up, it was a lapse and you are back on the beam. One day at a time. There are ways to manage stress and frustration that do not involve a drink. Meditation, read, pray, go for a walk, yoga, call a friend. Simple but not easy, right?! 

XO,

wendy



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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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Thankyou all so much! I knew you'd all get me bk on the straight and narrow,  though I knew there was always going to be some judgements it was inevitable I suppose x 

Youve all contributed towards me getting bk onto the straight and narrow no matter how tough things get,  jaggles how's things going with treatment etc? Can you private msg me I'll give you my mobile number see how you getting on :) x x 



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Hey Jane....it sounds as though you are not only being harsh on your self but you are actually judging yourself... it does not make you a failure for admitting you are finding things tough ..being open and honest means you are reaching out to ask for help while you try to figure things out....THAT takes guts and shows you have lots of it.

Try to remind yourself that Alcohol, being a depressant, makes everything seem much worse and will not bring you relief From the things in your life you struggle to cope with.....I get that....having a few drinks at the end of a crazy day.. I used to indulge now and then before diagnosis...but terrified at the thought that I could die if I screw this up...my kids ( now in their 30s and one having my first grandchild ) would have to see me get ill and die, even worse....care for me. Alcohol will ALWAYS make things worse emotionally and physically When used as a coping strategy.

i had to fight so hard to get this treatment, didn't you? 

find your mojo again, dust yourself down and rise proudly to the challenges being thrown at you at this moment in time and believe things can only get better ....I know you can!!!! 

Big virtual hugs at you Jane ....you can do this!! Xx



-- Edited by Jaggles on Saturday 15th of April 2017 06:40:17 PM

__________________

HBV 1982 Resolved  / HCV Undiagnosed until Sept 2016

female U.K. AGE 56

fibro score 6.9 

Viral load 3.5 million October 2016 

Geno 3

Treatment Epclusa

Undetected at 2, 4, 8 and 12 EOT , SVR 12 / 24

October 2016 Alt levels 190 now, July 2017 17

 



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Hiya J-P

I can relate to the stress thing. I took and am still taking care of my Mom with alz. while on treatment. i was on the old 3 drug treatment. It was stressful to say the least. I had to juggle watching her and going for transfusions because of the riba. DON'T DRINK ALC. worse thing you can do esp. while on treatment. Please respect your health and listen to advise from others here. I went through a heck of a time on treatment to reach SVR and it just boggles me to hear some one on treatment or even with hep c is drinking.

best wishes for you. 



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!



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Thankyou all for your amazing words of support and encouragement it's just what I needed to get my focus bk! So shall get my focus and determination bk on track and fight on,  once again thankyou all all your support and encouragement has really kept us going strong.

Much love J and P



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Hi J&P,

Glad you wrote what was happening. Sorry for all what is being thrown at you, your husband and family. This has not been any easy time for you (for many weeks and many months now). Life is demanding much of you right now.

We can imagine how much you have your hands very full. I wish it was easier.

Hold the line, your battle with parts of this is getting closer to the finish line, and parts of what you are going through right now, will get better.

Be prepared for some bouying news after your blood draws on Tues!

In the meantime, STOP these feelings of shame and failure you mention, stop allowing yourself to go there. Don't go there, instead, I want you to focus steely-like on what you have accomplished thus far.  You and he have got yourselves through EVERYTHING to get to be here, at this moment, by doing the very best possible thing(s) for yourselves, your family, your future, your health. You and you husband are so fortunate to have each other, and are strong, and are doing your very best for each other and your family, something you should be feeling VERY proud of indeed. So lucky you are, to have got yourselves to this world-class treatment. You deserve nothing less.  You two have and are doing an incredibly good job of dealing with eveything!.

So as Tig mentions, alcohol use is forbidden, it truly IS an added insult and injury to your already sick and injured liver. You simply have to refrain, period. But I think you already know this, so I do understand why you are conflicted and beating yourself up. DON'T beat yourself up, get past that - tomorrow is a new day!!, start over. Try to find comfort in ANY other way you possibly can, rack your brains to do something for yourself that will help relieve stress. I know how tough your circumstances can feel, but even MORE work is required of you, to re-group and to think of and do some other things for yourself to find some relief - draw on each other (even more, if that is possible), and actually consider asking others (other friends or family you normally may not want to ask for help) -  for some helpful assistance, even just for some small things (rides, cook a meal for you, babysit, do an errand, do some shopping for you, a favour) - you might just be pleasantly surprised that people DO and would want to be of some help to you once they know you are having a overwhelming time! - rack your brains to create even just the smallest practical things or physical things to try to muster some kinds of psychological relief from the stress-filled events going on, in any way you can think of, no matter how small or brief these respites may be. Put your mind and effort to thinking of ways to comfort yourselves, you will feel better for trying to do so. Never, ever lose sight of the great things you two have and are accomplishing.

I can't remember right now for sure, but did you not mention something about diabetis, blood sugar fluctuations? Maybe not, but if so, just one more easy reason not to drink.

I have EVERY confidence in you and Phils strengths, and wisdoms, and that you are going to do well on ALL counts!

I can't wait for you to start getting some good news and good lab news - that too will help. Hang in there. 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)

Tig


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Hi Jane,

I'm sorry to hear about your Dad. I have a 90 year old Dad that is not well either. He hasn't been for years and I also had to fight through trips to the doctors and hospitals while on treatment, too. It wasn't easy at all. I hope he improves soon and you can put an end to that long bus trip each way.

Hep C has never been alcohol related. It actually makes it much worse. Alcohol in any amount with Hep C and especially while on treatment is a big NO, don't do it. You're not improving your chances of success and you're beating your liver while it's down. Here in the USA some insurance companies drug and alcohol test you randomly before and during treatment. If you test positive, they withdraw treatment approval immediately and you risk any chance of approval in the future. These treatments can be anywhere from $70,000-$150,000 US for a 12 week course of medication. They expect you to abstain, period. You don't want to risk relapse and additional liver damage, right? My guess is, no. Alcohol and Hep C do not mix. If it was easy to abstain/stop as you began treatment, you really need to do it now. Try... smile

Good luck with your Dad and with your coming viral load results. Stay positive and do everything you can to win. You know we're always here for you and are cheering you both on. Don't forget that! If you need to talk, we expect to hear from you. This is your chance to shine!

     



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Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

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Heyy everyone! Sorry been a bit quiet things are pretty much as they were we get results of our viral load on Tuesday so here's hoping! 

I know you're all gonna be honest with me and I hope non judgemental so here goes..... 

Obviously when we started this journey we were told to abstain fron alcohol for liver reasons,  which we did not a problem,  tho we were one of those finish a full on day,get home sort kids something to eat and a few drinks of an evening, well we dis as advised and gave up not a problem,  well my dad took poorly a couple of weeks ago and is looking at a a long stay in hospital, I've had to take time off work to care for him mainly havin to get bus to the hospital which is 2 buses and an hour and a half away daily,  extra laundry, financial strain,Phil still working still trying to run our business and has all got on top of me and am ashamed to say turned to havin a drink of an evening again ( though our hep c isn't alcohol related I know it doesn't help)  now am feeling like a failure :( 

Sorry for the long post everyone just needed to get it out 

J and P 



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Tig


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Done! I like that better smile



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Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

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Yes please tig that would be great thankyou! :) that's amaaaazing news jaggles so pleased for you we get ours given to us at our appointments had 1Sr 28 days worth given us 2 weeks ago and had nxt lit given us today so quite easy really hope you have a smooth journey keep us posted we in this boat together biggrin

Much love J and P 



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Yayyy j n p great news...those results are amazing biggrin you must both be feeling such a relief....and thanks...I got my news today, they HAVE , NHS, approved me for epclusa....so I'm gonna ride that train in with you .....pre treatment test in couple of weeks.

may I ask, did they have the drugs sent to you? My hep nurse said they have to have them sent to me? Not that i care how I get them....lol.....thanks for keeping us updated it is so reassuring and great to hear a happy story ....I feel a little dance coming on xxx



__________________

HBV 1982 Resolved  / HCV Undiagnosed until Sept 2016

female U.K. AGE 56

fibro score 6.9 

Viral load 3.5 million October 2016 

Geno 3

Treatment Epclusa

Undetected at 2, 4, 8 and 12 EOT , SVR 12 / 24

October 2016 Alt levels 190 now, July 2017 17

 

Tig


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Hi Jane,

Hey, do you want me to change the name of this to Our Epclusa Journey and drop the day 2? Of course I'll leave it be if you want. 

It sounds to me that your treatment's are working exactly as expected. You're both on your way! Keep drinking that water-Very Important smile



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Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

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Thankyooou so much canuck!! :) we're so pleased with the results so far couple of days of headaches but they've gone now and apart from that side effect free amazingly! :) Phil had a few nights of weird nightmares bur again that's gone now too so so far all good :) 

J and P 



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JP!, JP!, JP! - can you hear us?, that us chanting!!, cheering you on from the sidelines!!

So glad you posted, sounds like ALL the right kinda news! Things are "crashing" in all the right ways.

Good for you two!

Tell us how you have been feeling on the pills, when you get a chance. 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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Sorry everyone! :) Jaggles hope yoe had success and you start your journey soon,  well we've been today for our first appointment after starting treatment we won't have viral load teats for another 2 weeks but all our other blood results are amazing everything for me is fine my ALT I think she said is 40 and all other results as normal they were 72 before we started and phils was 259 amd have now dropped to 154 these were the figures she seemed most interested In and everything else kidney function, bile I think.k she said all normal so we're soo hoping is all going in the right direction! :) 

Thankyou all for your support hope you are all doing well much love 

J and P biggrin



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Tig


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No kidding! Where are you two? We're interested in your progress, so send an update when you can. Don't forget to HYDRATE!



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Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

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Hi Jane and phill ....just to let you know I'm thinking of you both. Havnt seen any posts so Hope things are ok? im still waiting blankstare....big virtual hugs (((())))) and positive vibes xx

J xx



__________________

HBV 1982 Resolved  / HCV Undiagnosed until Sept 2016

female U.K. AGE 56

fibro score 6.9 

Viral load 3.5 million October 2016 

Geno 3

Treatment Epclusa

Undetected at 2, 4, 8 and 12 EOT , SVR 12 / 24

October 2016 Alt levels 190 now, July 2017 17

 



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This is exciting news, good to hear you are on your journey out of the jungle...I'm  hoping to be joining you on that journey very soon, should be next few weeks i get a start  date for epclusa so I am going to be Regularly checking your posts . Onwards and upwards !! Xx

J



__________________

HBV 1982 Resolved  / HCV Undiagnosed until Sept 2016

female U.K. AGE 56

fibro score 6.9 

Viral load 3.5 million October 2016 

Geno 3

Treatment Epclusa

Undetected at 2, 4, 8 and 12 EOT , SVR 12 / 24

October 2016 Alt levels 190 now, July 2017 17

 



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Thankyou all for your fab advice! :) shall get the water intake sorted as part of our routine,  we have to go every 2 weeks for bloods etc so first appointment is the 20th of March so shall hopefully see some improvements then touch wood so far we've not had any side effects a bit of unusual headaches but nothing a couple of pain killers haven't sorted,  hope you are all keeping well smilebiggrin

Much love J and P 



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Jane-n-phil wrote:

Thankyou! Such an amazing feeling is like I'm holding our future in our hands,  I know that sounds dramatic lol biggrin I know there's a lot less side effects etc but did you suffer any and how far in? 

Thanks for all your support 

J and P

 


 Best of luck Jane! You've got this! 12 weeks will pass by quicker than you know.

I finished my treatment just recently and got the UND result at EOT. Yours is up very soon! Side-effect wise, mine were very minimal. I stayed hydrated and took my pills at night. I'd suggest getting one of those weekly pill boxes to make sure you don't miss a dose.



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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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We do NOT jest when we keep repeating (ad nauseum) to drink a LOT of water!!!! This is VITAL to prevent/combat any sensations of "sides".

You might not get any or many sides, period, some people do, others do not, but the water is STILL very important. Make sure your increased water intake "routine" is as deliberate as popping that pill into your mouth, every day. Do not let your water intake slide/vacillate. (Both your liver and your kidneys have to deal with the metabolized drugs going through your body, thus the water makes this easier and is important).

Aim for a minimum of a gal of water per day (this is is additional to normal coffee, tea, etc.) Just do it and know you will be visiting the loo a lot. Take your water with you wherever you go. Develop a system, so you know you are getting your gal per day. (In retrospect, I deduced I could have done with even a bit more water than I was drinking when I was on tretament, lesson learned too late - brother, why is it always in retropect with me!)

I had the additional drug "vox" added to my epclusa, so i cannot say epclusa gave me some sides, I think it might have been more the Vox that made me feel some. But I cannot really say one way or another as i was on all 3 drugs. I suspect the Vox made my fog thicker during treatment and I had some headaches.

Some people seemed to have noticed headaches on epclusa (mostly in the starting-up period), and I bet most of these could be diluted by keeping your body really well-diluted with water. The people who did sense sides in the beginning, generally found they lessened as they went along.

Nothing to do with treatment, as I finished treatment so, so long ago, but I find for me (today!) that water is still very important. I can feel a headache coming on if I am not well-hydrated, and I can head it off at the pass with water!

Do you have your appointments/lab plan set out? Do you go back for bloods and VL's at week 4, week 8, week 12??

You're on your way! 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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Thanks to you all for your fab support and comments! Here's hoping the 12 weeks go quickly shall keep you all posted smile

Much love J and P 



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Aaah thankyooou wendyo love that song and very apt! smile



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Tig


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Full speed ahead!!!! smile

image.gif



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Tig

64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

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Hi there Jane.. (`n` Phil)!

How great to see you posting in the `On Treatment` section at last... congratulations!!!

Best of luck, keep us posted!



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Jill 

(70 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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Thankyooou wendy I shall check it out soon as I'm home smile 

J and P 



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https://www.youtube.com/watch?v=f-pzPwgR_u0

 

for J and P

wendy



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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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Thankyou! Such an amazing feeling is like I'm holding our future in our hands,  I know that sounds dramatic lol biggrin I know there's a lot less side effects etc but did you suffer any and how far in? 

Thanks for all your support 

J and P

 



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Yay Jane and Phil,

I rather fancy meeting up with you two over here in the "ON TREATMENT" section !!!!

Hurray!

I remember the feeling of actually being able to hold that long-awaited bottle in my hand, and then getting that first pill past my lips, what a relief it was.

Happy day 2! 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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J&P - Our Epclusa Journey :)
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Hi all my husband and I are day 2 of our 12 week epclusa treatment plan I hope you are all having successful journeys! 

Much love J and P



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