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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 C-Doing well on day 10, thank you!  Getting ready to take my pill at 9 PM, which I do religiously every evening.  I have my phone alarm set which I find extremely helpful!

I did email  (their preferred mode of communication) my NP last Tuesday about the Pepcid and they said I could take 20mg in the am and 20mg in the pm.  They didn't specify a time but in doing my own research, I concluded that I can take one pill with the Epclusa and one at 9 am, 12 hours later.  According to the Epclusa insert as well as what the pharmacist said, I can take up to 80 mg a day, but I'm going to try and avoid that.  So far, I've been doing okay, although a couple of times, I took one Tums 4 hours before the Epclusa because of a little discomfort, but I'm trying to stay away from that too.  I did buy the Gaviscon (they only had the liquid) and tried it once but it was disgusting and like your partner, I was barely able to keep it down, so I don't think that'll be an option in the future!

I'm still pretty pooped most days but am retired so have the luxury of taking it easy when I need to.  I try to do some form of exercise each day but most days just feel like a wet noodle so slog through it.  Maybe that will improve with time, but I am getting a lot of reading done!  I told my husband this might be a good time to brush up on my Spanish and put good use to this down time!

I am managing to drink about 96 ounces of water daily, which is quite a challenge for me since I never was a big water drinker, but I'm sure it's helping with the headaches, which are minimal.  Constipation is still an ongoing issue, but also one I've dealt with most of my adult life, so nothing new!  I did think the large volume of water would help with that though.

So all in all, I have no real complaints and am grateful it's going as well as it is!  I'm anxiously waiting for my blood draw on 9/28 and think I will feel a huge sense of relief after that first (hopefully) good result.

Thank you so much for checking with me.  I'm sure you're distracted waiting to hear from Tig, Wendy and all your other hep c family members.  I think we all will feel better once we know they're safe and sound.



__________________

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, 

So, day 10? of epclusa- how is it going? How are the stomach things, the acid/reflux, or bowel regularity? Did you end up having to go to the dentist to be checked out?

I too felt bagged (tired as you put it) while on therapy, everybody is dif tho (then again ... I was bagged before i started therapy!)

When you do get to speak to your hep people (on Tues you thought) you could inquire about increasing the H2 antagonist (and expressly how/when and how much) if you are having issues. I could not say which is worse Tums use or being on H2 antagonists, or using a combo of both - it would have to be their call based on their experience and carefully guided by how bad your symptoms and and when things are bothering you the most. We do know they frown more PPI use, and some other things that interact. Yes, how you take these things are key, so ask their advice.

Within some of the technical studies, in the fine print, you can glean all the minute nuances of how much the altering of the stomache/gut ph has or does not have on decresing the availabilty of the vel in epclusa, some of these "acid" reducing things, really, in the end, some have more effect, some less. Heck, even the foods we normally eat can have an effect. Don't be too paranoid about these things, just be careful, and always check first. 

Under the most perfect conditions in the world, a body will not necessarily utilize every molcule ot sof/vel ingested anyway, and still you will be VERY well cured. Now, dif story if a person kept repeatedly forgetting to take their doses - consistent dosing over each 24 hour period is important.

Be consistent and you will have it beat. : )

Oh, forgot - I wanted to tell you about my partners experience with Gaviscon. I knew others that this stuff had worked so well for, so I brought some home for my guy to try one time. He lived on tums, copiously. He had been a VERY undertreated/under-followed upper GI person at that time, longstanding everything from gastritis to GERD symptoms big time and subsequently every following conditions. Probably had fried his esophogus and esophogeal sphincter into a rock hard inoperable thing decades prior. A person who should NEVER hang upside down, let alone bend over! He desperately, willingly, experimentally tried the Gaviscon, and promptly had reflux, try refluxing Gaviscon! What an icky, yucky, semi-soild mucky horrid bubbling thing he half forced up and out of his stomache. They say ... "Gaviscon, and it's gone"!, in his case it was so true, cursing me after taking this one big disasterous dose of it, he said "One Gaviscon, and its gone! right in the garbage!". Never took it again. Eventually he morphed thru and from H2's to now PPI's. But still, i know people who do get really good relief from Gaviscon.



-- Edited by Canuck on Sunday 10th of September 2017 07:33:47 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 Tig and Canuck-  You have once again allayed my fears!  I think you are the Hep C Whisperers!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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LM,

When I started on my sof/vel/vox trial (waay back in March 2016) I had been pouring over all the prior studies Gilead had amassed on theses drugs.

Whenever I found articles or something, I just threw them into a thread - some of the sof/vel historical development/evolution (just as sof/vel was about to be named Eplcusa, and just about to become available "by prescription" on the market), and the same about sof/vel/vox (Vosevi) - the thread is "SOV/VEL and SOF/VEL/VOX".

If you start at the first posts there - page 3 - (the oldest, starting March 2016) those will speak a bit more to Eplcusa, the most recent posts are more on Vosevi.

Within some of these posts (you may have to do a LOT of picking and teasing out), but you might glean bit and pieces of info about how effective Epclusa has been found to be despite GT, cirrhosis, RAV's

Echoing Tig and Dr. Feld, about how stellar Epclusa performs despite "less favourable pre-existing conditions/characteristics", here is another excerpt/summary from one of the posts in that thread. (Even being an Il28b CT or TT seems less an issue!)

 

 

Excerpts from thread "SOV/VEL and SOF/VEL/VOX"

Post of Apr 14, 2016:

 

"HCV:  Simpler 12-Week HCV Treatment on Horizon"

Data from two phase 2 clinical trials reveal that 400 mg sofosbuvir plus 100 mg velatasvir is a well-tolerated and highly effective treatment for patients infected with hepatitis C virus (HCV) genotypes 1 to 6. One study tested 12 weeks of therapy in treatment-experienced patients, whereas the other tested the same regimen in treatment-naive patients.

The two studies were published online November 10 in theAnnals of Internal Medicine. Both studies had a randomized, open-label design.

One of the summaries : Stephen Pianko, MD, PhD, from Monash Health in Clayton, Australia. The presence of pretreatment NS5A resistance-associated variants did not appear to affect SVR12 rates in most patients with genotype 1 or 3 HCV infection.

 

 



-- Edited by Canuck on Thursday 7th of September 2017 05:24:28 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)

Tig


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That's one of the great things about Epclusa, it is highly effective against any resistant mutations. Relax, you need not worry about it!

Q: How effective is sofosbuvir–velpatasvir in patients with unfavorable characteristics, such as cirrhosis, and does the presence of baseline resistance-associated variants affect treatment response?

In the trial by Feld et al., patients with characteristics that are historically associated with a lower response to treatment — the presence of cirrhosis, prior treatment failure, black race, and non-CC genotype of IL28B — had rates of virologic response similar to those with historically favorable characteristics. The presence of baseline resistance-associated variants was not associated with virologic failure, which was represented in the study by two relapses and no virologic breakthrough. Although the two patients who had a relapse had resistance-associated variants at baseline and at the time of virologic failure, 99% of the patients with baseline NS5A resistance-associated variants had a sustained virologic response, which suggests that pretreatment testing for resistance-associated variants is probably of little clinical value with sofosbuvir–velpatasvir.



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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 --

Congratulations on One Week of treatment, I think this gives you a pass to blow the engineer's whistle on the train! WTG!

I don't have information for your resistance question, yet I imagine one of our Guru's will have something to share.

 



__________________

 

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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Hi All-Tomorrow I will have completed one week on Epclusa.  So far, feeling good except for feeling tired all the time.  My concern now (worry is my middle name!) is, because I  tested resistant to Harvoni and Zepatier, what is the likelihood that I will be resistant to Epclusa?  I haven't really been able to find any data on this and can't seem to get a definitive answer out of my doctors-probably because there isn't one!  But I would love to hear any success stories out there that could ease my fears. 

Sending positive thoughts and prayers to all of you facing Irma and hope you take all necessary precautions to stay safe!



__________________

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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Lindsmatt52 wrote:

Thank you Lamont!  I can't hear enough of these success stories!  So far, the side effects have been minimal, so I'm very grateful for that.  How wonderful that your VL was un detected after 4 weeks!  I'm praying for something similar and would be thrilled to have all my digestive problems disappear as a bonus!


 These new drugs are Super-Effective, and as we have seen, side-effects are manageable. I had a couple of friends who endured the older treatments and it was grueling, and not always 100% effective.

"Digestive disasters"  seem to easing up with me, at least that's my hope. After nearly 3 years of chronic constipation and related misery, at 3.5 weeks of Epclusa I have hit a "grace period" and have been happily processing food like a normal person. Don't want to jinx this apparent return to normalcy by claiming I am cured of it all, but it sure is encouraging.

Please keep us informed of your progress, we are rooting for you!

 



__________________

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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Thanks PS-Nice of you to keep count with me!  Looking forward to that first blood draw in 24 daysbiggrin



__________________

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 -- Wow, its already Day 5 at 9pm today! You are moving up the track, cool.



__________________

 

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

Tig


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I used the liquid. When I took it they only had the regular strength. It worked really well. I guess the price and if you can save money by adjusting the dose and quantity of the super dee duper strength, I'd try that. I'm always looking to save a buck! I haven't looked, but they may have a generic now. I'll have to check into that, too. 

I could actually sleep laying down when I used it! I don't have the reflux now, so the only thing that keeps me awake now is the insomnia, lol! I think (I know) I spend too much time either on the computer, or this iPad. I've read they give off a blue light spectrum that messes with your sleep patterns, if you spend too much time staring at it. It does and I do...

PS: No generic available cry It's not that expensive anyway. Something that works is worth it!



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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 Tig-

I'll check with my NP on Tuesday.  Unfortunately, I called the pharmacist the other day with questions about several medications and she told me they were all fine.  I asked about Tylenol and she said there was no limit-just to follow the instructions on the bottle, which is not what I've read before.  I also asked about hyoscyamine, which I've taken occasionally for irritable bowel and she said it was fine.  But when I looked it up on the list of meds that were interactive with Epclusa it said it had a major interaction (my NP actually said it was ok too).  We obviously have to do our own due diligence and can't always accept the first answer as truth.  Honestly, at this point, I don't know who to believe!

Tig, I looked up Gaviscon and there are several types, including liquid and tablets.  What did you use?



__________________

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 Lamont!  I can't hear enough of these success stories!  So far, the side effects have been minimal, so I'm very grateful for that.  How wonderful that your VL was un detected after 4 weeks!  I'm praying for something similar and would be thrilled to have all my digestive problems disappear as a bonus!



__________________

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 Lindsay,

First, you should clear it with your doctor or pharmacist. Looking at the drug interactions, it appears to require the same precautions as Tums, 4 hours. Ask first, we always recommend that.

Gaviscon is weird stuff! It has an action that you'll notice right away, it tends to foam as it interacts with saliva. That's what made it work so well. Once you take it, it builds up a foamy barrier between your stomach and esophagus. That prevents the reflux from backing up. The antacid in it then controls the acid. Kind of an ingenious idea.



__________________

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

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Epclusa is a remarkable drug. I went from 5.7million to Not Detected, in 4 weeks. Flat out amazing. Sides have been minimal, just the occasional headache, and a bit of insomnia. Also noticing that many of the ongoing digestive problems I have had for nearly 3 years, are just clearing up, like poof. Who woulda thunk?

Glad you're on your way to being Free of C!

 



__________________

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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Hi Tig-

I have not tried Gaviscon but will give it a shot.  Do you take it as you would Tums?  At least 4 hours before the Epclusa?

Thank you for the suggestion!



__________________

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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Lindsay,

Have you ever tried Gaviscon? When I was having problems like that, it worked wonders for nighttime reflux.



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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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Thank PS.  Thank would be such encouraging news if not for the fact that the toothache was bothering me before I started the Epclusabiggrin.  It still seems to be there now, so I guess I have to bite the bullet (no pun intended!) and go to the appointment.  Hopefully, it will be an easy fix!  Nothing but fun!!



__________________

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 - that's good news all around. I recall reading an article where a woman on Harvoni had toothaches at SOT. She went to dentist and couldn't find anything awry and it cleared up after a few days. I imagine these drugs work through every cell and fiber of our bodies to eradicate the HCV..hope the tooth continues to stay calm and carry on. biggrin



__________________

 

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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Hi C-Day 3 went well, thanks!  Other than being a little tired and sometimes a little dizzy, on day one I felt a tiny bit nauseous, but I think that may have been brought on by the anxiety about my Hep B results on my bloodwork! I really didn't have any other issues!  I'm being diligent about drinking my water, which I'm sure is keeping some of the side effects at bay.  I'm taking my pill at 9 PM which works out great and I usually read and fall asleep without any issues.  I have been waking up at the crack of dawn, and once my brain switches on, there's no falling back asleep, but that's fine.  An important tip that all of you have given is to set an alarm on your phone so you don't forget to take the meds!  That's so key!

So far, the PPI seems to be working out.  I take it at night along with the Epclusa.  I have taken a Tums on two days, in the early afternoon (easily 4 hours before Epclusa), because I'm so afraid of the nighttime reflux, but I know I need to get out of that habit. According to the Epclusa handout, I can take 20mg of Pepsid in the AM and another 20 in the PM, so I've emailed my NP with that question.  Yes, our bed is propped up since my husband also suffers from reflux, but thanks for the suggestion.

I have an appointment with the dentist on Wednesday but tooth feels better, so I'm hoping it might go away on its own!  Not my favorite place to go!

Thanks for the Epclusa links.  I will definitely use them as a reference!



__________________

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, 

OK, OK, I looked! It was bothering me that I could not easily see antibiotics on the no-no list - quickly found "some" (unlikely you would even be offered these anyway, but ya never know!) - "Nafcillan" (for staph infections mosty) can decrease effectiveness of vel, and "Rifampin" (for some more exotic kinds of infections) can decrease effectiveness of sof, and of course these two drugs have multiple "names"! There might be more antibiotics to be found on the no-no lists, just not easily seen. C.   



__________________

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

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

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

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

 

(SEE UPDATES IN BIO)



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Hi LM,

How goes day 3!

Do you think the acid reflux is behaving? Do you keep a couple hardback books under the legs at the head of your bed? - a 1/2 to 1" rise may be helpful.

How's the dental thing?

I am guessing you have the epclusa leaflet. Although it was posted here before, and we were all looking at it here earlier on your thread re: PPI's etc, I'll re-post it here again.

www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/epclusa/epclusa_pi.pdf 

So, if you have further particular questions not covered, about the nuances of meds allowed (whether that be use of  "Tums", or increasing Pepcid, or if you suddenly have need for antibiotics or something else), and you are not sure, you should always rely on/consult with your NP for her advice/opinion. This could be as easy as a phone call.

Here is another link that lists ALL things that may interact, to various degrees, with epclusa (and like Tig pointed out we do not easily see antibiotics on here), some anti-virals though - so, do double check with your NP if any changes are made to your meds in any way, if a dentist wants you to have certain drugs, ask him and your NP to double check the on the med. Same for OTC things or supplements, ask NP if she doesn't already know you take them or that you might.

https://www.drugs.com/drug-interactions/sofosbuvir-velpatasvir,epclusa-index.html

Hope day 3 went OK.  : )  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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LM, 

The way I interpret your results ... your result says you are "negative", (non-reactive), or, in other words, you have NO surface antigen detected.

This is a good thing. This is what you want. If you had either, an acute infection of B, or, had a chronic infection of B, they almost invariably find you also WILL be "positive", (reactive) or, in other words, WILL show surface antigens.

As you have no surface antigens, this is good, this shows you do not fall in the category of being a person with acute or chronic B.

This is the most important part of your B testing - the surface antigen -  existence of the surface antgen is what you do not want, and being that you have no surface antigen detected! - good news.

See - it was a good thing your NP and your child doc keep doing their due diligence and are confirming /re-confirming your growing immunity status's against A and B.

Yes, your antibody titre will grow (as you are in the process of gaining full immunity against B), and you will reach a titre of 10 or more - right now your results show your surface antibodies are "reactive", "positive", or, in other words you DO own surface antibodies (a good thing) to help protect you from B, but they may still be less than 10.

That's how I interpret things.

I agree with (what you called) your simplistic explanation. : )  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 and PS-Thank you, thank for easing my mind somewhat!  I think I understand a little better now.  Apparently, it just says abnormal due to the fact that I still have one more vaccination in my Hep B series.  Is that it in the most simplistic of explanations?

I started feeling a little more under the weather this afternoon and worrying about this latest result wasn't helping!  It's such a comfort to know there's always someone around to help put things in perspective-especially on a holiday weekend!!  



__________________

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, 

Polo is right , she is indicating (like what is shown on her report) that your surface antigen SHOULD be negative or non-reactive - a good thing.

I'll take a stab at answers (my responses will be in red):

You said ... I'm looking over some of the blood work I had yesterday and everything is normal so far except for this:  HBsAb is reactive (having a surface antibody is a good thing, that is what happens after immunization for example - it can indicate you have immunity, or are gaining immunity, perhaps where you might have not had surface antibodies before) /abnormal (the only reason your HBsAb is consdiered "abnormal" is likely because it still has not yet reached a level above 10) and HBsAb concentration is abnormal (this can be explained as simply as that your surface antibody has still not come up to a predetermined desired level yet in response to your immunization - remember you have not fnished your full immunization yet, in all likelyhood you have had an good immune response and have protection from acquiring hepb, but your titre (concentration) may still be under 10, and it will probably be 10 or be over 10 by the time you finish your immunization) .  Can anyone explain what that means?  I was tested for Hep A, Hep B and HIV and all was negative so don't understand this result.  Of course, my NP is off today.  It also says my HBsAg is Nonreactive (non-reactive surface antigen is a good thing, you do not want to be surface antigen postive). Leaving me feeling a little freaked out!

 



__________________

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 for taking the time to check that for me, PS!  Hopefully, Tig, Canuck or another Guru will have an answer for me.  I hate going into a long weekend fretting over this stuffcry



__________________

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 -- I checked my stats and the HBsAg is same, Nonreactive and the other columns show that nonreactive is standard range. (see below) For HBsAB, and others stuff that's one for the experts to explain here.

ComponentYour ValueStandard Range
HEPATITIS B SURFACE AG         NONREACTIVE     NONREACTIVE


__________________

 

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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I'm looking over some of the blood work I had yesterday and everything is normal so far except for this:  HBsAb is reactive/abnormal and HBsAb concentration is abnormal.  Can anyone explain what that means?  I was tested for Hep A, Hep B and HIV and all was negative so don't understand this result.  Of course, my NP is off today.  It also says my HBsAg is Nonreactive. Leaving me feeling a little freaked out!



-- Edited by Lindsmatt52 on Friday 1st of September 2017 03:20:56 PM

__________________

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. That was my thinking too. I'm feeling pretty pooped today so may be ready for my jammies by 9 PM!biggrin

I completely concur with your praise of all the wonderful people here.  They are my rocks.  And so glad to have a newbie friend too, PS, even though you will graduate a month ahead of me!



__________________

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, Glad you got through the first night. I'm only a newbie here, but I changed from around 10pm to now between 9 & 9:30 pm on Harvoni since sometimes I am so fatigued by 9pm that I need to lie down. just my 2c

We are so fortunate to have all this expertise and support here, thanks Tig, Canuck, Wendy, and everyone! Thank you too LM.

 



__________________

 

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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How about antibiotics?



__________________

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'm glad to know you'll be having lab testing done on a 4 week basis. It's good to know how things are progressing.

Yes, you can change the medication administration time by one hour. Sometimes a small variance can't be avoided, just do your best to take it at the same time each day. It's important to set that schedule in stone and stick to it!

Sorry about the dental problems. There shouldn't be any problems seeing your dentist. Just let them know your list of medications. These new drugs don't interfere with anything like that. I hope you're feeling better soon. There's nothing worse than a toothache!

 



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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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Thanks for the pep talk, Tig!  I'm accepting the fuzziness as a small price to pay for a cure!  Some of it may just be my normal personality!

Yes, my NP is doing a blood draw at 4, 8 and 12 weeks then again at 6 months.  I have become more comfortable with her and am starting to think she was just having a bad day the first time I saw her.  She is of my generation, although possibly 10 years younger than I, but I do now have confidence in her and her opinions.  My friend who went with me said the same thing, so I feel much better about all that.  I don't imagine I'll have any more dealings with the young dudebiggrin unless I see him at the end of treatment or if my treatment fails.  

Two questions-I've had a toothache for the past few days ( not what I need!) and am wondering if there are any issues going to a dentist?  Also, I took my Epclusa at 8 PM last night but have decided I'd prefer 9 PM.  Can I just take it then tonight or do I need to gradually change the time?  Since it's only an hour, thought it wouldn't be much of an issue.  

Time to go get more water!

 



__________________

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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Good morning, Lindsay!  

Don't be concerned with the fuzziness, it's not uncommon to experience some of it. Even though these are relatively mild mannered medications, they are powerfully effective! They are currently inside of you, swimming around, setting up shop and stomping the Dragon snot out of that virus! How's that for dramatic? Ha, ha! You get the idea!!

Is your NP going to allow you the additional viral load tests every 4 weeks? I'm not clear who's running that show. Youngster 1 or 2? I would request one at week 4-6, one at the end of treatment and then again at EOT +12. If the one at 4-6 weeks is undetected, then the EOT could be put off until EOT +12. Clear?  (As mud, lol) The benefit of knowing these numbers serves a huge morale boost as you progress. Maybe asking your favorite NP a quick question about this will help.

Get yourself a pill container and set an alarm on your phone, with a second alert, just to be sure you take your Epclusa everyday. Sometimes that fuzziness leads to forgetfulness! 

Drink, drink, drink! Water is your new best friend  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 C-  Boy, do I appreciate your thoroughness!  You always make me think outside the box.

So, to answer your question about the PPI, I stopped taking it yesterday and started the Pepsid (actually the generic, famotidine) last night with my Epclusa.  I didn't really go through any kind of weaning period off the Dexilant.  I slept fine last night although had strange dreams that I was with a group of people who were all sitting around and smoking something to get high!  I remember in the dream that I didn't really like the way it made me feel but couldn't escape it.  The reality is, although I spent my late teens and early 20's in California pretending to be a hippie, I never really enjoyed pot or any other drug that made me feel out of control.  This morning I woke up feeling a bit fuzzy and with a slight feeling of vertigo (sort of how I was feeling in my dream).  Not sure if this is all just in my head or if it's the Epclusa.  I do get occasional vertigo and take meclizine for it, which my NP said is fine, but may call the pharmacy to confirm before I take it.

I already got a portion of my blood work back and everything is normal.  My ALT actually went down from 33 to 31.  I'm not really sure what other tests he ordered, but they took 8 vials of blood, so I'm sure there's more!

So, the bottom line is I'm just feeling a bit fuzzy this morning.  I've had one cup of coffee and 16 ozs of water so will continue to drink water and hope that helps with the fuzzies! 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



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Anyone remember how Disney World used to have those tickets to go on rides and the best rides were an E ticket? Well LM, I say you just got your E ticket  

Glad you had such a good doctor visit and your friend was with you. 

Cheering you on,

wendy



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

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

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

 



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Hey LM,

You and Polo had me LOL about your "child docs", I've had them too (another story for another time tho).

So ... wise "old" NP is lookin' better and better eh?, not only closer, but she but wants to see you and poke you on a frequent basis - possibly bloods (and perhaps VL's) as often as week 4, 8 and 12! That sounds good to me!

Good junior did arrange another blood draw for you today tho, and that he re-affirmed he did not see things much differently than your NP. Too bad neither your NP or specialist wants to waste money doing U/S's or fibroscans, you have to take their word for it that they are feeling assured with your low fibrosis indicators and saw nothing noteworthy from your old CAT images. You can still keep asking your NP for U/S or fibroscan if you wish - maybe you will wear her down! I had to resort to outright begging sometimes to get some of the tests I wanted! In some cases, when they balked, I told them it would simply do much just to make me feel better about the before and after state of affairs, and they relented for re-assurance purposes! Oh I WAS an expensive pain in the arse case!

OK, you mentioned (quite a while back) you were on Dexilant (which comes in different formulas) and Dexilant is a PPI. Unknown formula and dose but assume you had been taking this for some time (possibly/additionally with occasional emergency dosings of tums-like things, in a pinch) for (likely long-standing) GERD/haitus hernia type problems - which we suggested you discuss same (all of your meds) with your docs and/or pharmacy re: taking them with epclusa.

Then, first time today, you mention (now) being on Pepcid (famotidine) which also comes in different formulas. but Pepcid is a whole dif animal from a PPI, Pepcid is one of those H2 antagonists.

So, you got me confused now - how and when and who helped you make this leap, from curtailing the PPI use and going instead to use a H2 antagonist? 

I would do as your NP says (her instructions on how to take Pepcid with epclusa), I would also do as your specialist suggested and speak to the pharmacy about your Pepcid and epclusa use - just to confirm everyone is on exactly the same page. Be sure to have actual Pepcid formula name out (box or bottle info) ready to discuss with pharmacy. You can also ask pharmacy and NP about any potentially wished for "emergency" tums use, before you might suddenly be thinking you need that, and see what they have to say about that as well. Did they all warn you off taking any supplements or OTC drugs without OKing it with them first? I can't think of a thing we have not checked and double checked!! : )

Have you already got the 2 legs at the head of your bed propped up a little bit, maybe with a couple 1/2 to maybe 1" thick hardback books?

Sounds like you are very ready for your nice, organized, well-deserved blast-off tonight, and I am betting everything (I'm throwing it all in!) that this whole thing IS going to be a very smooth ride for you!  ; )  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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Yay I'm so glad for you! And I'm happy you have a good Dr and such loving supportive people in your life.  Treatment will fly by....well actually swim by...(cause of all that water you're going to drink to keep sides at bay) biggrin

I had a very, very young Dr do my tumour ablation, he had Harry Potter glasses and his scrubs were kinda low, the way those young guys seem to wear their pants. But he was an absolute sweetheart. 

Cant wait to hear/ see your bloodwork in 4 weeks.

Alison.         



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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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Congratulations Lindsay! Let the magic and healing begin!

Happy you are hopping on board for your own epclusian epic of slaying your dragon!

...and now the wheel of time is turning closer,,let the slaying begin. It has enough magic that it works even while you sleep! Righteous.

(my Dr. is a little older than yours, he may be nearly 20, teehee)

 



__________________

 

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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Hi C-I think the specialist was worth it although I believe he may have been 12 or 13 years oldbiggrin.  Very young I could easily have been his grandmother (possibly great-grandmother)!  He concurred with everything my NP is doing and when I asked about a Fibroscan or U/S, said my mild fibrosis did not warrant it.  He did do another set of blood work as a baseline since my last one was almost 3 months ago.  Hopefully, there will be no surprises there.  Interestingly, they only do a blood draw at the end of treatment (12 weeks), which I would not have been happy about.  When I told that to my NP, she said they do the blood draws every month because they like to stay in touch with the patients in case they have questions or issues, plus to see how the meds are working.  I think they have a more personal approach, which of course, I prefer.

My NP said I can take Pepsid at the same time I take the Epclusa or 12 hours before or after.  When I asked the specialist, he said I needed to check with the pharmacy-not helpful.  I'm going to try taking them both tonight and see how that works.

My husband was able to meet me at my appointment with the specialist, but not able to go with me to see the NP.  But then, much to my surprise, my best friend showed up at my appointment and went in with me in case I forgot to write anything down.  I am very blessed to have such loving friends and support!

So all in all, very pleased with my visits and ready to roll!  I'm trying to come up with a new endearing name for my Epclusa!  I think it needs that personalized touch!

Thank you for your interest and caring!



__________________

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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Wonderful LM!

How did the 2 appointments go? Let us know. Was the specialist worth it? and what was the PPI advice. Did you have any more bloods today? 

Stroke and admire that nice big clean shiny bottle of magic. Day one tonight!!!!!!!!!! Yay. Off and awaaay.  : ) 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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Right On!!... Get it Girl! And don't forget to drink your water!



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55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda

Tig


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Congrats, Lindsay!!! It feels good, with a little bit of anxiety thrown in, but after you gulp down the first pill, the anxiety is gone and your journey to wellness begins. We're all thrilled to see you get here and we've watched you gain the knowledge and strength necessary to achieve this. Wear your newest graduation cap proudly!! This is going to be outstanding  Good luck, Warrior! Let the slaying begin....

IMG_1376.PNG



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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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Got my Epclusa today and am starting it tonight!!biggrin  Such an amazing feeling to FINALLY be starting the treatment and am counting down the days till my first four-week blood draw!!  Thanks to all who got me this far!  I am SO ready!



__________________

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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