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Author Topic: Starting Epclusa on Tuesday  (Read 150207 times)

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Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #200 on: November 06, 2016, 10:01:03 pm »
Hi Pepperann:

If u wanna stick to the exact time, you'd actually take it an hour earlier than usual. So say u usually take it 6PM , you'd take it at 7pm. Since that's 24 hours after the day before the clocks were set back n hour.

But i think being an hour off is not a big deal
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Strike5223

  • Member
  • Posts: 30
Re: Starting Epclusa on Tuesday
« Reply #201 on: November 06, 2016, 10:53:54 pm »
I just took mine at same time. An hour or so shouldn't make a difference. i'm not perfect and don't always take at exact time :-[
Female Age 50
Hep C diagnosed 11/2007
GT 3a
Viral Load 40K+
Source unknown
AST 47
ALT 31
Epclusa start 9/28/2016

after 4 wks:                       after 12 wks:
HCV: NOT DETECTED            HCV: NOT DETECTED
ALT: 19                              ALT: 23
AST: 30                             AST: 30
Platelets 94                        Platelets 89
Serum Glucose: 279           Serum Glucose: 395

Pretreatment Serum Glucose: 105

Offline Pepperann

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  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #202 on: November 06, 2016, 10:55:00 pm »
Thanks Elias & Strike,
Decided to take it at the same time 7pm when I get home from work. I figured what you said 1 hr should not make that much of a difference.
Thanks
« Last Edit: November 06, 2016, 10:57:50 pm by Pepperann »
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline bluebird

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    • https://goo.gl/images/HVZk8m
Re: Starting Epclusa on Tuesday
« Reply #203 on: November 07, 2016, 12:03:12 am »
Hi Pepperann,  I am agree with you  to start taking pill an hour earlier starting today, because of time saving. I used to take around noon, now around 11 am.  Maybe it is not a big difference, but I like to keep 24 hours difference strictly. Good night and sweet dreams to everyone...
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline andrew j

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  • Posts: 477
Re: Starting Epclusa on Tuesday
« Reply #204 on: November 07, 2016, 05:50:22 pm »
I shifted the time I took Harvoni by 1 hour with daylight saving, so that I could keep taking it with dinner.

I did it over three days - moving it by approx. 20 mins. each time.


Offline bluebird

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Re: Starting Epclusa on Tuesday
« Reply #205 on: November 07, 2016, 08:51:24 pm »
@andrew- good idea!  Today I have a blood test for viral load. Can I eat or drink water before it? I forgot if I did or didn't before. Please, someone let me know! Thank you!
« Last Edit: November 09, 2016, 05:57:17 am by bluebird »
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline Pepperann

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  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #206 on: November 11, 2016, 12:47:33 am »
Hi Bluebird,
Yes you can eat and drink before viral load test. Not suppose to eat or drink before glucose (urine test), which determine's if you have diabetes or not. I think there is also another blood test that they don't want you to eat or drink anything before but I don't remember what blood test it is. Please share the good news cause I'm a 2 weeks behind you!
« Last Edit: November 11, 2016, 01:03:09 am by Pepperann »
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline bluebird

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  • Life is beautiful! No matter what...
    • https://goo.gl/images/HVZk8m
Re: Starting Epclusa on Tuesday
« Reply #207 on: November 11, 2016, 05:17:52 am »
Pepperann,you were right, no fasting needed for viral load count in blood. My results will be available next Tuesday or Wednesday( I scheduled an appt. with my virusologist). Recently I noticed I am issuing a problem with a sudden chest pain, it comes after lunch or dinner and feels like a burn in the upper chest ( between breast, not under the ribs). At that moment my heart rate was 130b per hour.I had it twice in the last two  days  for 15 min before it went away. Another thing - every day after finishing dinner I feel that my food has a hard time to reach the stomach, I have heartburn and  burp which I have never had in my life. I am not sure if it is because of pill,  struggling liver or something else. Despite a smaller portion I normally eat, I go to bed feeling my food still didn't pass the throat. Does anyone else has to deal with it?
« Last Edit: November 11, 2016, 06:18:17 pm by bluebird »
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline Strike5223

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  • Posts: 30
Re: Starting Epclusa on Tuesday
« Reply #208 on: November 11, 2016, 06:18:47 am »
Your ALT and AST are quite high; liver may be struggling to keep up. Looks like you are due for your tests soon; I would wait to see if those are going down. I have been getting a burning also, but drinking/eating something seems to help. I take Pantoprazole for acid reflux, but can not take it for 4 hrs before/after Epclusa.

If it is gas related, you could ask your dr for Simethicone 80mg. About $3 for 90 tablets.

Hope you feel better and good luck on your tests!
Female Age 50
Hep C diagnosed 11/2007
GT 3a
Viral Load 40K+
Source unknown
AST 47
ALT 31
Epclusa start 9/28/2016

after 4 wks:                       after 12 wks:
HCV: NOT DETECTED            HCV: NOT DETECTED
ALT: 19                              ALT: 23
AST: 30                             AST: 30
Platelets 94                        Platelets 89
Serum Glucose: 279           Serum Glucose: 395

Pretreatment Serum Glucose: 105

Offline Phoenix17

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  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #209 on: November 11, 2016, 08:02:34 am »
I have had a few bouts of acid re flux while on treatment as well. Never had it before starting Epclusa. It hasn't been anything I can't handle, so I am going to wait it out until EOT. Talk to your doc about it. I am sure you can get some relief!

Keep us pasted on how your VL numbers!

No fasting required for the Viral Load test.

Offline Lynn K

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Re: Starting Epclusa on Tuesday
« Reply #210 on: November 11, 2016, 09:41:00 am »
Take a look at table 2 on page 7 of the Epclusa prescribing information sheet you should have received a copy with your prescription here is a link to a PDF

https://www.gilead.com/~/media/files/pdfs/medicines/liver-disease/epclusa/epclusa_pi.pdf?la=en

There are very specific instructions about how to take Epclusa with acid lowering medicines.

Table 2 Potentially Significant Drug Interactions: Alteration in Dose or Regimen May Be Recommended Based on Drug Interaction Studies or Predicted Interactiona
Concomitant Drug Class: Drug Name
   Effect on b Concentration
         
Clinical Effect/Recommendation
 
Acid Reducing Agents:
  ↓ velpatasvir
 
Velpatasvir solubility decreases as pH increases. Drugs that increase gastric pH are expected to decrease concentration of velpatasvir.
 
Antacids (e.g., aluminum and magnesium hydroxide)
    Separate antacid and EPCLUSA administration by 4 hours.
 
 H2-receptor antagonistsc (e.g., famotidine)
   H2-receptor antagonists may be administered simultaneously with or 12 hours apart from EPCLUSA at a dose that does not exceed doses comparable to famotidine 40 mg twice daily.
 
 Proton-pump inhibitorsc (e.g., omeprazole)
  Coadministration of omeprazole or other proton-pump inhibitors is not recommended. If it is considered medically necessary to coadminister, EPCLUSA should be administered with food and taken 4 hours before omeprazole 20 mg. Use with other proton-pump inhibitors has not been studied.

Strike 5223

Pantoprazole Is in the class of medicines called proton pump inhibitors please check with your doctor to make sure you are taking your Pantoprazole correctly while taking Epclusa
Only antacids like Tums or Rolaids for example are taken by separating the dose of antacid from Epclusa by 4 hours before or after

I believe you should be taking Epclusa with food 4 hours before Epclusa as in the description for omeprazole or other PPI medicines

Please check with your doctor about acid reducing medicines and Epclusa
« Last Edit: November 11, 2016, 11:36:55 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline bluebird

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  • Life is beautiful! No matter what...
    • https://goo.gl/images/HVZk8m
Re: Starting Epclusa on Tuesday
« Reply #211 on: November 11, 2016, 10:06:44 am »
Thank you, Lynn, Phoenix and Strike for sharing. I will ask a doc next Wednesday, but till then I may cut my "bird meal"( I eat often, but smaller portions) especially after 6, and see if it helps. I just worried if it is a heart problem getting added to everything I already have. A while ago Lynn was surprised that they never requested an endoscopy test for me. Maybe I should insist on having one... Let's see! I will post my first results for sure!!!
« Last Edit: November 11, 2016, 10:08:52 am by bluebird »
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline KimInTheForest

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  • Believe in yourself
Re: Starting Epclusa on Tuesday
« Reply #212 on: November 11, 2016, 03:20:09 pm »
Hi Bluebird. I didn't take Epclusa. But I did have some major heartburn experiences on Harvoni. (And both drugs have Sovaldi/sofosbuvir in them.) I have never had heartburn before, so the first time (around midnight) I thought I was having a heart attack and was wondering if I could safely drive myself to Emergency. That's how bad and alarming it was. But it was heartburn. Episodes continued intermittently throughout treatment and a bit beyond but finally disappeared.

You can google lists of foods that are particularly bad for causing heartburn/acid reflux and try to avoid those. I think chocolate and peanuts are on the list.

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Strike5223

  • Member
  • Posts: 30
Re: Starting Epclusa on Tuesday
« Reply #213 on: November 11, 2016, 03:45:33 pm »
Lynn K

I was advising of that fact in my post: "I take Pantoprazole for acid reflux, but can not take it for 4 hrs before/after Epclusa."

Originally I stopped taking it, but dr wanted me on it due to previous varices, so I take Epclusa at noon, and Pantoprazole after 5 pm.

Simethicone does not contain the ingredients that interfere with Epclusa:

Ingredients
Active Ingredients
Simethicone
Inactive Ingredients
Dextrose
Sorbitol
Stearic Acid
Sucrose
Maltodextrin
Female Age 50
Hep C diagnosed 11/2007
GT 3a
Viral Load 40K+
Source unknown
AST 47
ALT 31
Epclusa start 9/28/2016

after 4 wks:                       after 12 wks:
HCV: NOT DETECTED            HCV: NOT DETECTED
ALT: 19                              ALT: 23
AST: 30                             AST: 30
Platelets 94                        Platelets 89
Serum Glucose: 279           Serum Glucose: 395

Pretreatment Serum Glucose: 105

Offline bluebird

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  • Life is beautiful! No matter what...
    • https://goo.gl/images/HVZk8m
Re: Starting Epclusa on Tuesday
« Reply #214 on: November 11, 2016, 06:03:18 pm »
Hi Kim , thank you for reply and advise :) :) I just checked the list of 23 food cause a heartburn and happy to say that I don't eat any of these except tomatoes and walnuts. I gave up on most foods I liked before and chocolate is one of them along with an ice cream, sour cream, deli cheeses from Costco, seafood, cookies, any tipe of baking, fries and many others :( First time when I experienced a heartburn was right after lunch  - I had a veggies soup and tomatoes were one of the main ingredients in it. The second time I had heartburn was after I ate walnuts (1/2 cup). The most important thing is:
"To alleviate acid reflux, don’t lie down for the first 2 hours after you have finished your meal. In fact, standing up or walking around can help gastric juices flow in its right direction. Similarly, while sleeping, you should keep the upper body elevated by putting a book underneath the mattress."  I am guilty to admit that I went to bed 20 min after I finished dinner to watch tv or read online ( not to sleep yet since it was only 7 pm). I need to change this habit,  I used to walk before time saving switch, now it too dark:) well, I am glad that it is still manageable and less likely is a heart attack. Thank you for reading :)
« Last Edit: November 11, 2016, 06:12:21 pm by bluebird »
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline KimInTheForest

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  • Believe in yourself
Re: Starting Epclusa on Tuesday
« Reply #215 on: November 11, 2016, 06:07:01 pm »
That's great that you only have 2 foods on a list of 23 you have to omit or be careful with, Bluebird. And yes - that part about not lying down for 2 hours after you eat is really important.

Good luck with it! :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Lynn K

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  • Member
  • Posts: 4,534
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Epclusa on Tuesday
« Reply #216 on: November 11, 2016, 06:18:51 pm »
Thanks for the info Strike just want to make sure people are checking in with their doctors as this issue of acid reducing meds is so important to get right.

Yes I forgot simethicone is not an acid reducer only a gas reducer

Hope everyone is doing great :)
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline circe801

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  • Posts: 2
Re: Starting Epclusa on Tuesday
« Reply #217 on: November 12, 2016, 02:18:11 pm »
hey, all.  today is my third day on epclusa.  oddly, i feel pretty good so far.  maybe better than usual.  i can only hope it continues.
genotype 2a, low viral load, little fibrosis.  was diagnosed in 2009 and am unable to tolerate any of the older treatments due to a history of depression.
pretty sure my insurance only approved this because of my darling GI doc who pushed for me by telling them that i have a dual diagnosis of both HCV and sarcoidosis.  must've worked, because here i am being treated.

i'm sure you've all been counseled, but in case anyone forgot--
if you take meds/vitamins/supplements containing calcium and/or magnesium, take at least 4 hours before or after your dose.
eat, and if you eat processed/fast food, please consider not doing it any more.  that stuff isn't good for healthy people, let alone us.
STAY HYDRATED--no soda, please--it's full of either HFCS or artificial sweetener (depending on whether regular or diet poison).  seltzer is fine.  limit the caffeine (coffee, tea)--it is dehydrating.  if you must drink it (like my one cup in the AM), drink extra water (or whatever non-caffeinated, non-HFCS fluids you're using for hydration).

glad we all have this forum.  being able to commune with others in the same situation is a blessing.  will report back after my 4-week bloodwork--which will actually be 3-week as my doc will not be in the office on my 4th.

congrats to those who've finished their course and have continued
SVRs, and luck to all of us who are in the midst of treatment!!!
peace & health to all!!! 
« Last Edit: November 12, 2016, 02:33:41 pm by circe801 »

Offline Strike5223

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Re: Starting Epclusa on Tuesday
« Reply #218 on: November 12, 2016, 02:33:57 pm »
if you are craving a soft drink, I have just tried Pepsi 1893 and I love the ginger cola! Also a regular cola available. NO HFCS/sweetener: just REAL SUGAR :)
Female Age 50
Hep C diagnosed 11/2007
GT 3a
Viral Load 40K+
Source unknown
AST 47
ALT 31
Epclusa start 9/28/2016

after 4 wks:                       after 12 wks:
HCV: NOT DETECTED            HCV: NOT DETECTED
ALT: 19                              ALT: 23
AST: 30                             AST: 30
Platelets 94                        Platelets 89
Serum Glucose: 279           Serum Glucose: 395

Pretreatment Serum Glucose: 105

Offline circe801

  • Newbie
  • Posts: 2
Re: Starting Epclusa on Tuesday
« Reply #219 on: November 12, 2016, 02:47:07 pm »
hi, strike5223--i don't often drink soda, but when i do, it's ALWAYS 1893 ginger!!!  i don't have it more than one every couple of months, because if i did, i might drink it more often.  i don't even do throwback pepsi any more...

Offline Mw2324

  • Member
  • Posts: 138
Re: Starting Epclusa on Tuesday
« Reply #220 on: November 15, 2016, 04:14:39 pm »
Hey everyone,
    Just checking in to see how everyone is doing. I have 17 days left of treatment and am counting down! I am still tired and have some pains here and there but I'll admit I don't drink as much water as I probably should. I hope everyone is doing well. I'm looking forward to see how I feel after treatment. I'm hoping I get my energy back. Best wishes to all.
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #221 on: November 15, 2016, 04:27:16 pm »
Hi Mw and all on this thread:

Symptoms same all along. If im rested, im ok. But all too often I'm not.

I dont have specific side effects, such as headaches, etc..But I do have much the same discomforts and pains I normally get when i  lose sleep. Only it gets amplified about 10-fold now that I'm on Epclusa (3 1/2 weeks so far)

I can't say for sure the Epclusa is causing those sleep difficulties in the first place. I was oddly beginning to have much of this about a week or so before even beginning treatment.

I'm more stressed  than usual lately because im worried about my upcoming 4-week test. And need to brace myself for possibility i wont be UNDETECT . I see several here weren't UNDETECT at that milestone.

I do wonder why they even test at 4-weeks in the first place? Since little conclusion can be drawn for such results at that early milestone?
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Mw2324

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  • Posts: 138
Re: Starting Epclusa on Tuesday
« Reply #222 on: November 15, 2016, 04:42:59 pm »
Elias,
     I can relate to the well rested issue. I feel like when I'm more tired, I feel worse in terms of back pain. I also have sleeping problems. On epclusa, I am able to fall asleep easily but I wake up around 3 am every morning and it's difficult for me to fall back asleep. I have to get up at 4:45 am so I'm losing precious zzzz's. Obviously I feel worse when I'm tired so this is an ongoing losing battle. As far as your 4 week labs, it's OK if you aren't undetected. You will be at the end of 12 weeks. This test doesn't mean much . It's the 12 svr tests that are important. Don't stress! You'll do great!
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #223 on: November 15, 2016, 04:47:47 pm »
MY GI had said last month this 4-week test is a must and that i will most likely be UNDETECTED then.

My viral load is kinda high (1.6 million) . So how was he able to say that? And why is it still given altogether?
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Strike5223

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  • Posts: 30
Re: Starting Epclusa on Tuesday
« Reply #224 on: November 15, 2016, 04:54:07 pm »
From what i've seen on this post, most people are showing undetected at 4 weeks.

The 4 week test is done to see if the treatment is having an effect on the viral load;
8 weeks provides more progress info, 12 weeks(EOT) will show final results of treatment to determine if additional/different tx is needed.

My doc is not doing an 8 week test, but others do
Female Age 50
Hep C diagnosed 11/2007
GT 3a
Viral Load 40K+
Source unknown
AST 47
ALT 31
Epclusa start 9/28/2016

after 4 wks:                       after 12 wks:
HCV: NOT DETECTED            HCV: NOT DETECTED
ALT: 19                              ALT: 23
AST: 30                             AST: 30
Platelets 94                        Platelets 89
Serum Glucose: 279           Serum Glucose: 395

Pretreatment Serum Glucose: 105

Offline Mw2324

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Re: Starting Epclusa on Tuesday
« Reply #225 on: November 15, 2016, 05:00:10 pm »
Elias,
  You very well may be undetected. It is possible. But because you have a high vL, it may not be completely gone but there will be a drastic improvement. Don't be discouraged though, it is working. I honestly feel that I know more about epclusa than my doctor, by doing my own research. Maybe your doctor has seen it happen before or maybe he just isn't that knowledgeable. I'm not sure why they even do it, maybe for insurance purposes and to make sure there is progress. I know I saw a post saying they were thinking about doing away with 4 week tests because it can be stressful and discouraging. But I know you will see great numbers. This is a really great drug.
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline Mw2324

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Re: Starting Epclusa on Tuesday
« Reply #226 on: November 15, 2016, 05:05:12 pm »
Strike,
  My doctor is also not requesting an 8 week test, which is fine with me. I have the order for the 12 week eot test already so I won't see him again until after that. But you're right, some do have more frequent tests.
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline Strike5223

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Re: Starting Epclusa on Tuesday
« Reply #227 on: November 15, 2016, 05:49:53 pm »
My Hep doc did my colonoscopy yesterday, so I got in a few questions. I do not think they should do away with 4 week because it indicates whether the drug is effective, and could change/add treatment.
Female Age 50
Hep C diagnosed 11/2007
GT 3a
Viral Load 40K+
Source unknown
AST 47
ALT 31
Epclusa start 9/28/2016

after 4 wks:                       after 12 wks:
HCV: NOT DETECTED            HCV: NOT DETECTED
ALT: 19                              ALT: 23
AST: 30                             AST: 30
Platelets 94                        Platelets 89
Serum Glucose: 279           Serum Glucose: 395

Pretreatment Serum Glucose: 105

Offline Lynn K

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Re: Starting Epclusa on Tuesday
« Reply #228 on: November 15, 2016, 06:10:43 pm »
Really the only use of the four-week on treatment test is to confirm patient compliance because the only reason you would still be strongly detected with a high viral load is if you weren't taking the medicine  as prescribed.  Otherwise the 4 week on treatment test results really don't mean much at all. Everyone taking treatment as prescribed will either be not detected or have had a hugh reduction in viral load or just barely detectable but neither result relates to the important test result the 12 week post treatment test for final SVR
« Last Edit: November 15, 2016, 06:19:04 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Mw2324

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Re: Starting Epclusa on Tuesday
« Reply #229 on: November 15, 2016, 06:23:57 pm »
Thank you Lynn K. for your knowledge.
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline Phoenix17

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Re: Starting Epclusa on Tuesday
« Reply #230 on: November 15, 2016, 07:13:06 pm »
Hi All!  I am starting my 10 week of Epclusa. 3 more to go! I had my 4 week VL and will not get one again until 12 weeks EOT. My Vl at the start was over 22 million! At the 4 week mark it was down to a mere 36. No zeros added to that, just plain 36. If you are not undetected at 4 weeks, don't worry. I am not worried. I am sure it is long gone. Now to get rid of this sinus infection......    ;D

Offline Mw2324

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Re: Starting Epclusa on Tuesday
« Reply #231 on: November 15, 2016, 07:14:29 pm »
Almost there Phoenix...
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline rk

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Re: Starting Epclusa on Tuesday
« Reply #232 on: November 15, 2016, 08:31:40 pm »
Hello all, my doc did a 2 week vl which was undetected and again at 4 weeks, same results. The next vl test is shown at 12 weeks. I do labs and liver imaging next week. Plus I am scheduled to do labs every two weeks. I will be thoroughly investigated before this is over!

Elias, ease your mind. Like my doc said, even though you are undetected, it takes 12 weeks. In that time the remaining virus, if any, will be cleared. I am half way there.

Soon two more will be cured. Phoenix & Mw, it should  be very happy holidays. Mine will be a happy new year. ;D  My best to all cured and going to be.

Rod

« Last Edit: November 15, 2016, 08:46:49 pm by rk »
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline bluebird

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Re: Starting Epclusa on Tuesday
« Reply #233 on: November 15, 2016, 11:28:05 pm »
Congratulations, RK! It is an exciting news! Very soon you will be cured and forget all about it. I just got my test results ( labcorp posts it online) and I have an apt with my dr tomorrow.  All my numbers are in the range, except Alt and AST are still high. Viral load is less than 15 ( surprise, I had 8 mill), but hcv rna says detected! S*** I Will give you details tomorrow after the appt. Could my test result be not accurate? good night  everybody!
« Last Edit: November 16, 2016, 12:52:14 am by bluebird »
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline Lynn K

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Re: Starting Epclusa on Tuesday
« Reply #234 on: November 16, 2016, 01:55:45 am »
Not everyone will be not detected on treatment, the important thing is you have had a significant reduction of viral load. The only test that matters is the 12 weeks after treatment has ended the SVR12 test

You are doing great good luck the rest of the way to beating hep c
« Last Edit: November 16, 2016, 06:11:13 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline rk

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Re: Starting Epclusa on Tuesday
« Reply #235 on: November 16, 2016, 11:03:45 am »
Hang in there Bluebird, like Lynn says not everyone will be undetected at 4 weeks. I'll bet if you had labs done again today it would show undetected. The remaining time is  like a cushion to make sure the body is cleared. As an example my starting VL was 2940 very low but a lot more than your 15. After 12 days mine was cleared.
Your doing fine, cured is in the near future.
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline Strike5223

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Re: Starting Epclusa on Tuesday
« Reply #236 on: November 16, 2016, 11:17:28 am »
Hey Lynn K,

When should you get a new toothbrush/razor. I am using a different toothbrush since starting tx - do I need to use a new one after?
Female Age 50
Hep C diagnosed 11/2007
GT 3a
Viral Load 40K+
Source unknown
AST 47
ALT 31
Epclusa start 9/28/2016

after 4 wks:                       after 12 wks:
HCV: NOT DETECTED            HCV: NOT DETECTED
ALT: 19                              ALT: 23
AST: 30                             AST: 30
Platelets 94                        Platelets 89
Serum Glucose: 279           Serum Glucose: 395

Pretreatment Serum Glucose: 105

Offline andrew j

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Re: Starting Epclusa on Tuesday
« Reply #237 on: November 16, 2016, 03:53:23 pm »
Bluebird,

From what you have put up, and written, it appears that you have a very small amount of virus left at ... 4 weeks, is it?
That's why the RNA test still says 'Detected'.
It's not unusual.
You have nothing to worry about.
It's the general trend / huge drop they're looking for at 4 weeks.

Strike,

I was fussy about keeping my toothbrush clean, and religiously soaking my razor(s) in bleach.
I wanted to do everything I could to maximise my chances.
For me, it was: 'Better safe than sorry'!

Lynn wasn't anywhere near as concerned, I don't think.


Offline bluebird

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Re: Starting Epclusa on Tuesday
« Reply #238 on: November 16, 2016, 03:59:45 pm »
Thank you, guys, for support! I just came back from the appt. and Dr. said the same thing  as you about a Viral Load reduction. She sees  a tremendous drop, replication of virus is in control already, but still it will take another couple of weeks  or so to see "undetected". High enzymes confirm that my liver has an inflammation, but again, it has been only 4 weeks of taking epclusa at the day they draw my blood. All is well!  I hope, you are doing fine too!
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline andrew j

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Re: Starting Epclusa on Tuesday
« Reply #239 on: November 16, 2016, 04:10:49 pm »
Yes.
You're doing fine, Bluebird!
« Last Edit: November 16, 2016, 05:11:10 pm by andrew j »

Offline Mw2324

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Re: Starting Epclusa on Tuesday
« Reply #240 on: November 16, 2016, 04:22:59 pm »
Bluebird,
   You have made great progress! Congratulations on your numbers, you should be proud. Keep up the good work!
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline bluebird

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  • Life is beautiful! No matter what...
    • https://goo.gl/images/HVZk8m
Re: Starting Epclusa on Tuesday
« Reply #241 on: November 16, 2016, 06:07:42 pm »
Thank you, guys! You are so sweet! I wish everyone to win and help to others if they will be in our shoes. :) :) :)
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline Lynn K

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Re: Starting Epclusa on Tuesday
« Reply #242 on: November 16, 2016, 06:09:21 pm »
Hi strike

Yeah I just changed my toothbrush at the recommended by dentists interval of 3 to 4 months. I made no special changes regarding personal hygiene products. I still have the same fingernail clippers and did not bleach anything.
« Last Edit: November 16, 2016, 06:12:05 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Pepperann

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  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #243 on: November 17, 2016, 01:31:17 am »
Congratulations Bluebird!!!
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline MommaT

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  • Tomorrow Is a New Day
Re: Starting Epclusa on Tuesday
« Reply #244 on: November 17, 2016, 05:53:44 am »
Hi everyone!

Just checking in and hope everyone is progressing well! Time will fly if you keep busy
and not let stress get in the way! I have changed taking my Epclusa to 6pm and it is helping with the brain fog! I am feeling much better and taking care of my other health issues-in Physical therapy this month and keeping up with work out of home Business.

The great news is my 8 week VL test HCV-Non Detectable! That really gives me a Boost. I will be done 12/9/16! Cannot wait!

Time flies if you keep busy and live you life! My best to all you Brave people! You should be proud of yourselves and give yourself a pat on the back!
62 year old Female
Treatment Naive
Genotype 2b
2001 Dx Donated blood after 9/11
2002 Biopsy F1
2016 Fibroscan 15 F4
Comp Cirrhosis Stage 1
pretreatment VL 1,722.660 mil
platelets 122 low
alpha 2 Macroglobulins 647
Apolipoprotein A-1 214
GGT 67 high
AFP Serum Tumor Marker 11.4
ALT 563 AST 332
2016 Sept 16 Epclusa started
4 wk VL <15 HCV Detecte
ALT 19 AST 18
8 wk VL HCV Undetected!
12/8/16 EOT Yipee!
12 wk VL HCV Undetected
SVR 12
SVR  24  10/5/2018 HCV Undetected   12/10/18 DETECTED????????

Offline Pepperann

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Re: Starting Epclusa on Tuesday
« Reply #245 on: November 17, 2016, 10:58:34 am »
Hi everyone,
Some reason I had an open post and would not let me erase so I thought I would share an update. I am ecstatic I started treatment and surprised how good I feel despite having a viral cold the whole time! I am sooo glad I found this forum. It has been a relief and comfort that someone else can share their story and progress as I gage my own! It is so positive to hear all the great success story's and progress reports!! Anyone just who is just starting epclusa, just want to share that my experience so far so good! Despite everyone being sick around me for weeks i finally caught a bronchial virus.I typically don't get sick and if I do it's short lived.I was debating whether to start taking Epclusa Despite having a slight cold. I already waited a week and decided to go ahead and started the epclusa. Then my husband ended up catching viral bronchialI bug aka (whooping cough). Well I ended up catching his bug on top of my cold! I went to the Dr to get looked at to see what I had.(viral bronchitis) The Dr. Said that the epclusa is a strong drug and can lower the immune system. He put me on z-PAC (antibiotics) Never got the body aches just a dry obnoxious hack. Especially at night. I had to take cough medicine at night to sleep. I ended up taking the whole bottle! That is unusual for me since I will barely take an aspirin. So anyone who has a slight cold may want to wait or discuss with Their Dr. Before starting . Been sick almost a month!
« Last Edit: November 17, 2016, 05:59:21 pm by Pepperann »
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Mw2324

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  • Posts: 138
Re: Starting Epclusa on Tuesday
« Reply #246 on: November 17, 2016, 01:50:38 pm »
Awesome Momma T! So glad to see you doing well!
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline elias

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Re: Starting Epclusa on Tuesday
« Reply #247 on: November 17, 2016, 05:46:20 pm »
Quote
The great news is my 8 week VL test HCV-Non Detectable! That really gives me a Boost. I will be done 12/9/16! Cannot wait!


Excellent news MommaT. Congratulations on that UNDETECT!!

I'm trying to fret less about my upcoming 4-week vl test next week. Based on what Lynn had posted above and on your 8-week results after low detection at 4-weeks
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Phoenix17

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Re: Starting Epclusa on Tuesday
« Reply #248 on: November 17, 2016, 07:04:51 pm »
Great numbers MommaT and Bluebird! You are on your way!!
Don't worry Elias. Even if you have some stragglers at 4 weeks it's not a big deal. The only one that counts s the 12 week after treatment.
Pepperann - I have a yucky sinus infection so I know how you feel. Coughing all night is not fun! I am prone to sinus issues, it's not a surprise but still.....
Hang in there everyone!

Offline elias

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Re: Starting Epclusa on Tuesday
« Reply #249 on: November 17, 2016, 10:51:32 pm »
Thanks all for hopeful words

Phoenix: I have bad cough too from after that nasty cold. Hot soup is helping. Might try some honey too
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline bluebird

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Re: Starting Epclusa on Tuesday
« Reply #250 on: November 17, 2016, 11:40:03 pm »
Congratulations, Momma! Very proud of you! @ pepperann, I am very sorry to hear about your struggles and fight with viruses. I wish you and husband to get well and speedy recovery! Don't give up! slowly, but definitely surely you will feeling better very soon! Fight!
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline MommaT

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Re: Starting Epclusa on Tuesday
« Reply #251 on: November 18, 2016, 06:39:03 am »
Thank you!
 Bluebird, Elias, Phoenix,MW and Pepperann!

I appreciate that I have a forum I can voice and get a high five! I told only close family and.... YOU ALL!

I will share that there is a shift when in my mind, think ingI am not contagious! I know Lynn would say WAIT the test is in SVR12 and 24-don't go crazy! lol

This is not going to rule my life-I am feeling on top of it now and count the days. Also looking forward to maybe shocking Dr with a reversal of Compensated Cirrhosis so soon I will be thinking of anything I can eat,  supplement and continue water. What you say Lynn?

I sure hope Epclusa did not hurt my immunity. I feel no aches and pain that weren't already seen from MRI -I do have Arthritis and sleep problems. I stopped all vitamins and stomach antacids so far so good.

Pepperann Hang in there I know exactly how hard Sinus Problems are! It'll take time Lots of water! I shower extra long!

Elias try not to stress you are like me I think-it is my way and give yourself a mental break! I know my sleep is totally crazy, but always was so good days and no sleep days!

Fight the good fight! I have such respect for you all!
Hoping for All -Positive hopeful thoughts!
62 year old Female
Treatment Naive
Genotype 2b
2001 Dx Donated blood after 9/11
2002 Biopsy F1
2016 Fibroscan 15 F4
Comp Cirrhosis Stage 1
pretreatment VL 1,722.660 mil
platelets 122 low
alpha 2 Macroglobulins 647
Apolipoprotein A-1 214
GGT 67 high
AFP Serum Tumor Marker 11.4
ALT 563 AST 332
2016 Sept 16 Epclusa started
4 wk VL <15 HCV Detecte
ALT 19 AST 18
8 wk VL HCV Undetected!
12/8/16 EOT Yipee!
12 wk VL HCV Undetected
SVR 12
SVR  24  10/5/2018 HCV Undetected   12/10/18 DETECTED????????

Offline Lynn K

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Re: Starting Epclusa on Tuesday
« Reply #252 on: November 18, 2016, 10:57:23 am »
Hi MommaT

Yup 12 week test. I mean even for those folks who take the EOT test and are not detected they still stress until the 12 week and if they get any additional tests after that stress waiting for that one as well I know I did.

DragonSlayer was detected at EOT and 4 weeks post EOT but went on to be SVR 12 it is unusual but can happen I think at least one other person had that experience but Paul was the first we knew of. I can't to begin to imagine the stress he had when that was going on.

As far as healing our livers my thoughts are the best we can do is if we have too high a BMI we should lose some weight as being overweight contributes to having a fatty liver which in not good for liver health and healing. Other than that just eat health like everyone should. I have see it said that a heart smart diet like the American Heart Association recommends is also a liver smart diet.

So really no special magic just do what everyone should do lose excess weight, get some exercise and eat your vegetables just like ours moms told us.  :)
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Pepperann

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Re: Starting Epclusa on Tuesday
« Reply #253 on: November 18, 2016, 11:22:17 am »
Thankyou Momma T!! So nice to hear your great news! Thankyou Bluebird, Elias, Phoenix, Mw, strike,Andrew,Lynn,& everyone who has shared on this forum! It is so exciting to have a cure. My good friend did the interferon for a year. Shots to the stomach! Severe flu like symptoms, half her hair fell out. This terrified me of this possible toxic solution! I was fortunate enough to be able to wait till something better came along.My ligaments were starting to tighten in my legs, hips & arms. Not arthritis but sore muscles like I worked out real hard.(Before treatment) I felt it was the Hcv settling in my body. Anyone else experience this? Or is it just old age. My 82yr old mother does not have this. Seems to be subsiding. I think drinking the extra water helps (probably just dehydrated! I have great energy and have been working everyday from home office. So even the cold has not got me down! I am hypersensitive to everything. Smells, food allergies etc. so I thought for sure I would have some side effect. Just amazed how good I feel.I can honestly say I have had no side effects what so ever except one 5 second cramp in my liver! That's it. I immediately guzzled water and it went away. Anyone else experience a cramp in their right side below rib cage? Also anyone having any side effects with the epclusa? Just wondering if anyone knows how toxic or possible side effects that may show up after treatment? 64 dayz to go & counting!!
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Strike5223

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Re: Starting Epclusa on Tuesday
« Reply #254 on: November 18, 2016, 01:05:27 pm »
My heart stopped for a moment, I swear. I went on COBRA eff 11/1 which, in the world of insurance, means complications!
Same insurance, different ID number, everything else the same. No one thought to tell me they need a NEW PA(what's up with that?) Went to the dr's office because I never get calls back in a timely manner and gave them the information to do immediately; need 3rd bottle Wednesday!
They told me they would take care of it and it is ok if I miss a day or two of the pills.

Wish me luck!!(darn insurance companies) :)
Female Age 50
Hep C diagnosed 11/2007
GT 3a
Viral Load 40K+
Source unknown
AST 47
ALT 31
Epclusa start 9/28/2016

after 4 wks:                       after 12 wks:
HCV: NOT DETECTED            HCV: NOT DETECTED
ALT: 19                              ALT: 23
AST: 30                             AST: 30
Platelets 94                        Platelets 89
Serum Glucose: 279           Serum Glucose: 395

Pretreatment Serum Glucose: 105

Offline elias

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Re: Starting Epclusa on Tuesday
« Reply #255 on: November 18, 2016, 04:03:10 pm »
Thanks Lynn, for reiterating about the 4-week and even later vl tests..

I guess its understandable to want that UNDETECTED badge sooner. And to stress if many get that and you yourself don't. But I'll try to keep balanced perspective. It will be very difficult though, given my temperament


Quote
So really no special magic just do what everyone should do lose excess weight, get some exercise and eat your vegetables just like ours moms told us.

There remains some questions for me as to "complementary medicine" and its potential role in this. I've used traditional Chinese medicine for most my ailments much of my life. It worked well where Western medicine has not. Possibly because much of those were stress-related, involving mind-body interactions.

I realize that complementary medicine was  been woefully ineffective in clearing HCV.  But I remain open-minded  as to potential role for this once the HCV is gone. As well as what complementary medicine has to offer in the way of stress reduction.  I'm thinking along the lines of acupuncture and healing exercises such as tai chi etc...  I'm not thinking in terms of some magic supplement coming out of a bottle.

Perhaps some of the more reasonable alternatives can now be revisited?

Theres also the potential role of new pharmaceuticals for regressing fibrosis/cirrhosis. I know there's research going on in this area. And we may get a glimpse into this from the presentations at that liver meeting.

Hopefully, those wont cost $1,000 a pill. But who knows..
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Lynn K

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Re: Starting Epclusa on Tuesday
« Reply #256 on: November 18, 2016, 11:24:01 pm »
Personally not a believer in alternative medicine but if you want to partake of course entirely up to you. Just be cautions with any supplements as some have detrimental effects on the liver.

I haven't seen anything about medicines to help with regression of fibrosis dotaste woud be news to me
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline rk

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Re: Starting Epclusa on Tuesday
« Reply #257 on: November 19, 2016, 01:26:12 am »
My heart stopped for a moment, I swear. I went on COBRA eff 11/1 which, in the world of insurance, means complications!
Same insurance, different ID number, everything else the same. No one thought to tell me they need a NEW PA(what's up with that?) Went to the dr's office because I never get calls back in a timely manner and gave them the information to do immediately; need 3rd bottle Wednesday!
They told me they would take care of it and it is ok if I miss a day or two of the pills.

Wish me luck!!(darn insurance companies) :)

I wish you luck Strike, lots of luck. From the start its imperative you alert the doc's office to any insurance change,  however they should have noticed this as well. I would try to expedite this & shipping. Maybe a day or two might be ok. That is a maybe I would not take. I question how they know, they may assume missing a day or two may be ok. Or someone missed a day and got lucky. Who knows, try to put them in your position, possibly a re-do, loss of time, not to mention the stress. I hope you lose no days or a day at the max. Lots of luck with that. rk
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline MommaT

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Re: Starting Epclusa on Tuesday
« Reply #258 on: November 19, 2016, 08:10:15 am »
Hello Everyone!

So sorry Strike! Squeaky wheel gets greased! Call Call everyone-Insurance, Pharmacy-I never relied on the Dr's go to girl. She was overwhelmed and promised me no guarantee of even getting..... Epclusa. They all would be silly to drop you this far in the prescription!

Pepperann-I lived for years just fine and suddenly everything ached, my hair falling out and the brain fog plus sleep disturbances-hurt everywhere! This was before treatment. My numbers were crazy high,so it was time to do something! Smells drive me crazy still-like when I was pregnant-getting nauseous -it is the liver saying no! I am good on this med at 6pm. No side effects other than what I already had! So yes I am like you!

Elias-I do believe in alternate therapy. First though, it cannot hurt so watch out...... too much of anything! I was taking Milk Thistle and any exercise/teachings- that makes you feel balanced I think you should do! Just getting and never stopping an exercise habit is good for everything and stress is so much a part of liver disease!

my 2 cents lol Have great weekend and never stop being hopeful!

62 year old Female
Treatment Naive
Genotype 2b
2001 Dx Donated blood after 9/11
2002 Biopsy F1
2016 Fibroscan 15 F4
Comp Cirrhosis Stage 1
pretreatment VL 1,722.660 mil
platelets 122 low
alpha 2 Macroglobulins 647
Apolipoprotein A-1 214
GGT 67 high
AFP Serum Tumor Marker 11.4
ALT 563 AST 332
2016 Sept 16 Epclusa started
4 wk VL <15 HCV Detecte
ALT 19 AST 18
8 wk VL HCV Undetected!
12/8/16 EOT Yipee!
12 wk VL HCV Undetected
SVR 12
SVR  24  10/5/2018 HCV Undetected   12/10/18 DETECTED????????

Offline Strike5223

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Re: Starting Epclusa on Tuesday
« Reply #259 on: November 19, 2016, 02:42:49 pm »
Thank you, rk and Momma. Going straight to office was the way to go. She took care of it and my medicine will be delivered Tues. Definitely follow up on anything regarding tx.
Colonoscopy good - the usual 2 benign polyps.
Female Age 50
Hep C diagnosed 11/2007
GT 3a
Viral Load 40K+
Source unknown
AST 47
ALT 31
Epclusa start 9/28/2016

after 4 wks:                       after 12 wks:
HCV: NOT DETECTED            HCV: NOT DETECTED
ALT: 19                              ALT: 23
AST: 30                             AST: 30
Platelets 94                        Platelets 89
Serum Glucose: 279           Serum Glucose: 395

Pretreatment Serum Glucose: 105

Offline elias

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Re: Starting Epclusa on Tuesday
« Reply #260 on: November 19, 2016, 02:56:40 pm »
Glad to hear the insurance thing was resolved, Strike.

I do get panicky near refill time, because I fear if there's possibility of them messing up, they very well might. But so far, first refill went smoothly. I got my second bottle about ten days in advance, just to allay my fears

Wouldve been really stupid of them to cover the expensive Epclusa and leave a gap like that mid-treatment!
============

Lynn  and MommaT

When I use "complementary medicine" I dont ingest anything at all. No herbal remedies. Mostly meditative type exercises based on traditional chinese medicine. I know for many this includes herbs, but was long ago advised by an acupuncturist-MD to avoid all those. Much of it is really a mind-set.

I'll keep my eyes on latest research from meetings and such about fibrosis -cirrhosis regression. I'm hoping its not just pure luck and genetics.
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Lynn K

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Re: Starting Epclusa on Tuesday
« Reply #261 on: November 19, 2016, 06:38:36 pm »
The primary consideration for cirrhosis regression is severity of liver damage. The more damage the longer it will take to repair if repair is even possible. For those with very advanced  cirrhosis bordering on decompensated to fully decompensated it will be more difficult to have improvement in my thinking.

I have some edema and a small amount of ascities for which I have been taking a duretic since 2008. I later developed esophageal varicies that needed to be handed so that indicates I have some portal hypertension not sure whether I will or will not experience improvement haven't really see any indications so far that is going to happen for me.
« Last Edit: November 20, 2016, 01:09:35 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Pepperann

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Re: Starting Epclusa on Tuesday
« Reply #262 on: November 20, 2016, 12:41:53 am »
Wow Lynn,
Glad to hear you've finally Are free! What a journey! Glad you beat this thing! I hope you heal beyond your wildest dreams! You deserve it! Sorry you have to deal with the side effects! You have a great attitude, heart ❤️ and Thanks for being here and sharing!
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Lynn K

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Re: Starting Epclusa on Tuesday
« Reply #263 on: November 20, 2016, 01:02:40 am »
Well really what I have are symptoms of liver cirhosis technically speaking side effects are a secondary effect, especially an undesirable secondary effect of a drug or therapeutic regimen.

So like when you have a cold the cough or runny nose is a symptom as opposed to a side effect

But thanks for the good wishes and same back at you :)
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline rk

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Re: Starting Epclusa on Tuesday
« Reply #264 on: November 20, 2016, 07:07:57 pm »
Going straight to office was the way to go. She took care of it and my medicine will be delivered Tues. Definitely follow up on anything regarding tx.

Way to go Strike, I thought my comment may have been to late. My adopted rule is Medical and really any aspect of life is my responsibility. After being let down many times over the years if I don't follow up it may not happen. That is, any time it seems something can go wrong. If I don't and it happens I only have myself to blame. The medical profession is far from perfect. 
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline bluebird

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Re: Starting Epclusa on Tuesday
« Reply #265 on: November 22, 2016, 11:23:02 pm »
Hello Everybody! Happy Thanksgiving to you and your families! I have to wish you ahead ( sorry about that) since we are leaving tomorrow to a different state to get together with a family for TG dinner and etc. Here is what I am wondering about: does any of you changed a diet after you got diagnosed with hep c and/or cirrhosis ? I thought I was always eating healthy and only because I am not fond of "fast food" ,but you will be surprised even choosing to eat home cooked food was not enough healthy for me. I also used to like smoked fish, deli cuts, different type of  salami, seafoods, cakes, ice cream  and etc... I like to bake, but the best "cake" for me was a slice of fresh bread with unsalted butter and jam on the top of it. Lol.. I said good bye to all of these gourmet food, to sweets, to variety of pickled vegetables, to butter I used to like, to glass of wine. The funniest thing is despite my love to sweets I have never been overweight and stayed slim or average all my life. The reason I eliminated a lot of " goodies" is because it is suggested by doctors from different countries: ones you got cirrhosis, you have to stay on healthy diet to the rest of your life. If someone is interested, I can post the list of foods good and not really for healthy liver. I am not sure if it going to heal my liver and decrease the stage from F4 to F3,2,1, but it is my goal! You never know!  Best wishes to you and Enjoy the holiday:))))
« Last Edit: November 22, 2016, 11:27:00 pm by bluebird »
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline elias

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Re: Starting Epclusa on Tuesday
« Reply #266 on: November 23, 2016, 12:12:51 am »
Happy Thanksgiving to you, Bluebird:

The good news is that most, even those with advanced fibrosis or cirrhosis do regress.

It may take longer (at times even 2-3years) if its more advanced.

Here's one of many such reports:

http://www.natap.org/2015/AASLD/AASLD_71.htm

I'd be interested in such a list of foods if you have one. But I do think there are many other factors involved in terms of degree and pace of improvement. I do wish to  learn more about how to improve one's chances.

I've seen blood glucose control mentioned as a co-factor in improving fibrosis level. Most specifically, Type 2 diabetes. But I think insulin resistance ( a lesser, earlier from of diabetes as well) in general may be a factor. Though I forgot where i had read that.  Conversely, improvements in fibrosis/cirrhosis lead to improvements in insulin  resistance as well. So this could prove quite an interesting dynamic. There's much more to insulin resistance, metabolic syndrome, and T2 diabetes than diet alone.

There are also about ten or so pharmaceutical agents being studied in early trials as possibly reducing advanced fibrosis. Most, though by no means all , are being studied in terms of NASH. But they may conceivably offer similar benefits for those who have cleared HCV. So this might be the new frontier in the battler with Hep C.

Would be good if we had a special section on this forum dedicated to liver health, fibrosis/cirrhosis regression, lifestyle factors, new drugs on the horizon for it. etc..
Seems it doesn't matter much how the virus was cleared in terms of regression

Happy Holidays again
« Last Edit: November 23, 2016, 12:26:14 am by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Lynn K

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Re: Starting Epclusa on Tuesday
« Reply #267 on: November 23, 2016, 01:58:36 am »
So reading the report it looks like what I have read previously that odds of regression for those with cirrhosis is about 50/50 after 2.5 years post treatment.

All I know is my Fibroscan increased post treatment. My pre tx Fibroscan was 27 and my 1 year post was 33.

But my platelet count did improve from pre treatment levels of about 90 to post treatment 110.

Will be interested to see if I have any improvement next February when I have my regular annual testing at 21 months post treatment. I sure am hoping for some good news.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline elias

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Re: Starting Epclusa on Tuesday
« Reply #268 on: November 23, 2016, 03:04:02 am »
Best wishes, Lynn:

For cirrhosis the median time to see improvement is actually 3 years. Total for group was 2.5 years. But if you look at graphs, the improvements continue years after but slower. Seems different researchers r finding different patterns for regression.

Were only getting little tidbits so far of co-factors involved and if we can do much to improve odds
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline bluebird

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Re: Starting Epclusa on Tuesday
« Reply #269 on: November 23, 2016, 08:03:02 am »
Elias, The key word "improvement" and link to the article gives me hope that it is possible! I will do anything from my side to help my liver to recover and resist any future damages to it.  I really want to see Lynn's results in February , I know you are a strong person physically and mentally, and it could help too!  I will translate couple of articles I read after the holiday( or if I have time before the end of this week) and open a new discussion, I will let you know. It will be nice to hear people's opinion about it! Have a great day, guys!
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline Pepperann

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Re: Starting Epclusa on Tuesday
« Reply #270 on: November 23, 2016, 11:32:26 am »
When I found out about hvc exposure I read everything I could get my hands on. My gastroenterologist wanted to put me on treatment right away but at that time my levels were low. I found myself a naturalpathic Dr. That specialized in the hvc. He found out that I had anemia and attributed partially to people who have virus their digestive systems change the way they digest and assimilate food even develop food allergies! Some things hard to digest are red meat, some grains (gluten) some people dairy, peanuts, sugar. All these things can cause some inflammation. What I have found in all diseases, that certain foods aggravate. So it seems for all disease and longevity of life span it is important to eat a healthy clean diet. Paleo diet is a good place to start. Eating the foods you love that are not the best for you should be in moderation or as a treat. Paleo diet is good one to look at. Also most Dr can refer you to a nutrisionist that can get you set up and usually be covered with insurance. Once your body is use to eating clean it is easy! The initial step and set up is the hardest part.
« Last Edit: November 23, 2016, 11:37:47 am by Pepperann »
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline Strike5223

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Re: Starting Epclusa on Tuesday
« Reply #271 on: November 23, 2016, 12:23:11 pm »
Starting bottle #3!! Will be done by X-mas; what a present :)

No 8 wk tests, tho :(
Female Age 50
Hep C diagnosed 11/2007
GT 3a
Viral Load 40K+
Source unknown
AST 47
ALT 31
Epclusa start 9/28/2016

after 4 wks:                       after 12 wks:
HCV: NOT DETECTED            HCV: NOT DETECTED
ALT: 19                              ALT: 23
AST: 30                             AST: 30
Platelets 94                        Platelets 89
Serum Glucose: 279           Serum Glucose: 395

Pretreatment Serum Glucose: 105

Offline Lynn K

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Re: Starting Epclusa on Tuesday
« Reply #272 on: November 23, 2016, 02:28:41 pm »
Congrats on starting last bottle!

Testing not really needed nothing should change your liver enzymes look like normal range and you are not detected.

All you need now is the 12 week post test for the virus to say you are cured!

I did notice your platelet count is low have you been diagnosed with cirrhosis?
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Strike5223

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Re: Starting Epclusa on Tuesday
« Reply #273 on: November 23, 2016, 03:49:44 pm »
yes, they have said I have cirrhosis. They are waiting to see if it will improve after tx. I have not had a biopsy done since 2008 (F0-1). I have also heard that my gallbladder has a lot of crap in it(unofficial) and dr mentioned my spleen briefly.

I guess we'll tackle that later; hope I have some insurance then. (COBRA now)
Female Age 50
Hep C diagnosed 11/2007
GT 3a
Viral Load 40K+
Source unknown
AST 47
ALT 31
Epclusa start 9/28/2016

after 4 wks:                       after 12 wks:
HCV: NOT DETECTED            HCV: NOT DETECTED
ALT: 19                              ALT: 23
AST: 30                             AST: 30
Platelets 94                        Platelets 89
Serum Glucose: 279           Serum Glucose: 395

Pretreatment Serum Glucose: 105

Offline Lynn K

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Re: Starting Epclusa on Tuesday
« Reply #274 on: November 23, 2016, 04:54:20 pm »
Yeah I was told I have some gall stones and later had a few gall bladder attacks (not fun) so had my gall bladder removed.

Probably your spleen is enlarged which is a consequence of cirrhosis raising portal vein pressure causing the spleen to enlarge and sequester platelets which is why we have low platelet counts.

Do you have any problems with lower leg/foot swelling? If you do that is edema. I have edema and some ascities. I have been taking a duretic spironolactone to help with that. Have you had an upper endoscopy to check for esophageal varicies? Have you been vaccinated against hep A and hep B  and also the pneumonia vaccine? When I was diagnosed with cirrhosis my doctor had me get those vaccines right away and also the upper endoscopy. 

Do you get abdominal ultrasound and AFP blood test every 6 months to monitor for early signs of HCC?

Do you know your MELD score?

I hope you are seeing a doctor associated with a liver transplant center? Not because you need a transplant just yet but because that type of doctor and facility are best to follow patients like us with ESLD (end stage liver disease)

Hope you get your insurance worked out soon
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Strike5223

  • Member
  • Posts: 30
Re: Starting Epclusa on Tuesday
« Reply #275 on: November 23, 2016, 05:20:05 pm »
I have ascities, but no other swelling. I have been taking spironolactone for years.

I was in the hospital three times with bleeding esophageal varices. Last EGD was MUCH improved (Aug) and no varices. Entered rehab and they over-medicated me. rehab stopped phenobarb and switched to ativan.(i requested ativan in the first place, had never had phenobarb for seizures). Was admitted to hospital with hepatic encephalopathy; I have been taking lactulose for ammonia

My dr is part of an hepatitis c clinic in columbus. I have been vaccinated for A and B, but appear to be a non-responder to B(non reactive after 2 series and a booster) I had a pneumonia shot and flu shot this year.

AFP is 9-10; Had an ultrasound twice this year(in hospital and by doctor) but not every 6 months

"Do you know your MELD score?" - I don't know what this is
« Last Edit: November 23, 2016, 05:24:42 pm by Strike5223 »
Female Age 50
Hep C diagnosed 11/2007
GT 3a
Viral Load 40K+
Source unknown
AST 47
ALT 31
Epclusa start 9/28/2016

after 4 wks:                       after 12 wks:
HCV: NOT DETECTED            HCV: NOT DETECTED
ALT: 19                              ALT: 23
AST: 30                             AST: 30
Platelets 94                        Platelets 89
Serum Glucose: 279           Serum Glucose: 395

Pretreatment Serum Glucose: 105

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,534
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Epclusa on Tuesday
« Reply #276 on: November 23, 2016, 05:46:39 pm »
The Model for End-Stage Liver Disease, or MELD, is a scoring system for assessing the severity of chronic liver disease. ... This score is now used by the United Network for Organ Sharing (UNOS) and Eurotransplant for prioritizing allocation of liver transplants.

https://en.m.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease


https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/

My MELD is 7 it was8 the lowest score is 6

On the Child Pugh score I am a Child A

https://en.m.wikipedia.org/wiki/Child-Pugh_score

In medicine (gastroenterology), the Child-Pugh score (sometimes the Child-Turcotte-Pugh score) is used to assess the prognosis of chronic liver disease, mainly cirrhosis. Although it was originally used to predict mortality during surgery, it is now used to determine the prognosis, as well as the required strength of treatment and the necessity of liver transplantation.

http://www.hepatitisc.uw.edu/page/clinical-calculators/ctp





Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Pepperann

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #277 on: November 29, 2016, 12:37:56 pm »
Strike,
 congratulation on your last bottle! I hope this helps with your health all around. Wow, it is sad the damage the hcv causes. The misery of not feeling well. On the upside you will be rid of this once and for all! I have noticed we have the same genotype 3a. I was told it is not as common and until now finally have something that works on most of the genotypes. I am hoping that for you that this may control your ascites and maybe reverse some of the damage. Same for Lynn.
Female 58 yrs
Contracted 1985
Geno 3a
Viral load 2million
Alt 55
Oct 30th, 2016 (Epclusa start date)

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #278 on: November 29, 2016, 07:16:44 pm »
Hi there:

I got results of my four week tests. I'm UNDETECTED

My liver enzymes are now normal as well.

Dr was very happy for me and said I was "rapid responder". So I wont need 8 week test. He said only test further I need now is the six-month one. Since he had seen cases where there was relapse in that time-frame. I had assumed (perhaps wrongly) that he meant 6 months after completion of Epclusa. and that he was operating on the SVR24 protocol. So i asked if I could have an EOT test and 3-month test as well.

He said I can have those as well and thought my insurance would cover those.

In retrospect, it is possible that by "six month" test he meant six months after beginning treatment? Which would really be SVR12 and not SVR24 as I had assumed. I thought it was well-established by now that the key test is SVR 12. Possibly, he is operating on the older paradigm of SVR 24. I wont see him again until late January when I'm done with the Epclusa for EOT test. So I guess I could ask then.
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Mw2324

  • Member
  • Posts: 138
Re: Starting Epclusa on Tuesday
« Reply #279 on: November 29, 2016, 07:19:17 pm »
Awesome! Congratulations Elias. He probably meant 6 months from start of treatment.
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline elias

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  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #280 on: November 29, 2016, 07:27:49 pm »
Thanks much. I sure hope he meant 6 months from start of treatment!!!

Not six months after end of treatment..

I'd really like closure with this Hepatitis C trauma and focus on healing my liver and whatever else it had messed up. I've had this most of my life and only learned of it 2-3 months ago
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline andrew j

  • Member
  • Posts: 477
Re: Starting Epclusa on Tuesday
« Reply #281 on: November 29, 2016, 10:04:12 pm »
Hi Elias,

I agree with Mw. I think he meant 6 months after the beginning of Tx.
(My specialist confused things like that a bit, too!).

... By the sound of it, you are good to go: i.e. a test at EOT, and another one 12 weeks post-treatment?

CONGRATS BTW - that's FANTASTIC news!!





« Last Edit: November 30, 2016, 03:03:27 pm by andrew j »

Offline Sparky

  • Member
  • Posts: 3
Re: Starting Epclusa on Tuesday
« Reply #282 on: November 30, 2016, 11:05:51 am »
Hello all, I haven't been too active with the forum lately. My Harvoni experience was not successful. That was my second attempt, 1st was the weekly injection with pills. So that's strike two and now  I am deciding if I am going to try the Epclusa my doctor offered to me. It's not only the third try to beat HCV but a new set of side effects which aren't really known yet.
I am thankful for the progress in medicine and hopeful for possible cure!
God Bless   
geno type 1A
diagnosed early 90's
treated late 90's with Interferon/Ribavirin no success
started Harvoni 2/26/16 viral load 3,500,000
so far so good!

Offline Strike5223

  • Member
  • Posts: 30
Re: Starting Epclusa on Tuesday
« Reply #283 on: November 30, 2016, 11:12:36 am »
Sparky - try Epclusa. No real side effects in my case except some hair loss(taking Biotin) and tendency to take naps when not engaged(and in you favorite reclining chair).

Hope it should be and easier ride and much more successful :)
Female Age 50
Hep C diagnosed 11/2007
GT 3a
Viral Load 40K+
Source unknown
AST 47
ALT 31
Epclusa start 9/28/2016

after 4 wks:                       after 12 wks:
HCV: NOT DETECTED            HCV: NOT DETECTED
ALT: 19                              ALT: 23
AST: 30                             AST: 30
Platelets 94                        Platelets 89
Serum Glucose: 279           Serum Glucose: 395

Pretreatment Serum Glucose: 105

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #284 on: November 30, 2016, 11:57:44 am »
Hi Sparky:

Theres a new HCV  drug by Gilead which I'm told due for approval soon. Its a combination of the two drugs found in Epclusa as well as a third DAA called: "Voxilaprevir"

This drug is specifically intended and tested for use in those who failed Harvoni

It was briefly discussed on this forum:

http://forums.hepmag.com/index.php?topic=4121.0

More here:

https://hepatitiscnewdrugs.blogspot.com/search?q=vox

https://hepatitiscnewdrugs.blogspot.com/2016/04/ilc2016-sofosbuvirvelpatasvir-and.html

You might try to get in touch with HHBurme here about it as he was in that trial.

Ask your doctor when approval might be expected.

At what stage in your Harvoni treatment did u learn it was unsuccessful?


« Last Edit: November 30, 2016, 02:47:22 pm by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline bluebird

  • Member
  • Posts: 44
  • Life is beautiful! No matter what...
    • https://goo.gl/images/HVZk8m
Re: Starting Epclusa on Tuesday
« Reply #285 on: November 30, 2016, 05:44:51 pm »
@ Elias, I am so happy for you! Good job! It is very inspiring!
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #286 on: November 30, 2016, 06:00:32 pm »
Thanks, bluebird.
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Mw2324

  • Member
  • Posts: 138
Re: Starting Epclusa on Tuesday
« Reply #287 on: December 05, 2016, 04:37:31 pm »
Hey all,
  I'm checking in to see how everyone is doing and to give you a glimpse of my life after epclusa. I took my last pill Thursday night and I was very nervous about what to expect after treatment. I read a lot of posts about people on other meds who had some problems. My first night off, I could not sleep. This is most likely bc epclusa was sort of like a safety blanket sleeping pill for me for 84 days. It put me to sleep and it gave me peace of mind. Without it, I'm back in Insomnia's ugly grip. However, the following day I was not very tired. Slept great Saturday night and felt good Sunday although I had a headache for the majority of the day. I'm not sure what the cause was. Slept great Sunday night and today I feel amazing. I haven't had this much energy in years. I do have some annoying heart palpitations but don't think it's from treatment. I do still drink the same amount of water now that I did on treatment, not bc I want to but bc I'm still so thirsty! Did my 12 week labs today and I'm sure it's undetected. I think this was the best decision I've ever made. I hope you all have a wonderful, smooth transition into your new life after treatment. Please keep me updated. Best of luck to you all!
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #288 on: December 08, 2016, 04:35:00 pm »
Hi Epclusa family members:

I start my third bottle of Epclusa a week from now Saturday. Sleep remains the major issue for me on this.

Mw:

 I wish the Epclusa would put me to sleep as it did for you. Hope you quickly adjust to being off that , and sleep normalizes. Insomnia is awful. I have no headaches and the fatigue is probably down to sleep deprivation. Diazepam helps only a little.

To be precise the insomnia began during the insurance denial and appeal process. But got worse, though sporadically, after I finally began the Epclusa. Hard to say how much of this is due to Epclusa and how much to intensification of preexisting sleep difficulties.

We will soon be the first on Epclusa to attain SVR outside of the clinical trials. So far no one outside of clinical trial has attained SVR-- simply because not enough time since FDA approval last summer has elapsed.

Starting about mid-December, the first wave of Epclusa SVR's "in the wild" should start rolling in!
« Last Edit: December 08, 2016, 09:38:54 pm by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Strike5223

  • Member
  • Posts: 30
Re: Starting Epclusa on Tuesday
« Reply #289 on: December 08, 2016, 06:56:43 pm »
2 weeks left until I'm done! I have been napping all day and up most of the night, which was fine when I wasn't working. :P
Female Age 50
Hep C diagnosed 11/2007
GT 3a
Viral Load 40K+
Source unknown
AST 47
ALT 31
Epclusa start 9/28/2016

after 4 wks:                       after 12 wks:
HCV: NOT DETECTED            HCV: NOT DETECTED
ALT: 19                              ALT: 23
AST: 30                             AST: 30
Platelets 94                        Platelets 89
Serum Glucose: 279           Serum Glucose: 395

Pretreatment Serum Glucose: 105

Offline bluebird

  • Member
  • Posts: 44
  • Life is beautiful! No matter what...
    • https://goo.gl/images/HVZk8m
Re: Starting Epclusa on Tuesday
« Reply #290 on: December 08, 2016, 07:53:01 pm »
I am starting my third bottle tomorrow, on Friday ( I am one day ahead of you, Elias). I am sorry to hear about your insomnia. Have you tried a camomile tea? Also I noticed if I go to bed around 8:30-9:00 pm I sleep well till 4-5pm.  If I go later, I can't turn asleep  and waking up every couple of hours. But definitely I  sleep better since I started taking Epclusa.  I had 8 weeks blood test done yesterday, but will know the results sometimes next week. Have a great evening, everyone! Sweet dreams:)
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

Offline sammantha55

  • Member
  • Posts: 20
  • geno 2b dx in 2006
Re: Starting Epclusa on Tuesday
« Reply #291 on: December 08, 2016, 08:08:02 pm »
Congrats Mw on finishing treatment, please keep us posted on how you're doing post tx, hope all goes well ,Elias, Bluebird and Strike you're almost at the finish line. Had a set back on my start date, I was notified my unit was closing and needed to  transition into another position to keep my health insurance, it was just too stressful to begin treatment at that time, now things are settling down so I'm hoping to start soon..Good luck everyone, you're posts are so encouraging !

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #292 on: December 08, 2016, 09:43:57 pm »
Quote
I am starting my third bottle tomorrow, on Friday ( I am one day ahead of you, Elias)

Ooops!! I actually start my third bottle the Saturday after this coming one. December 17. So I had to correct my own post above. Sleep deprivation is really starting to take its toll on me. Good that I'm keeping records of the pills I took. Hope I don't forget where I keep those records though
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #293 on: December 08, 2016, 09:48:19 pm »
Quote
Had a set back on my start date, I was notified my unit was closing and needed to  transition into another position to keep my health insurance, it was just too stressful to begin treatment at that time, now things are settling down so I'm hoping to start soon

But all is ok with insurance now,Samantha. Right?

Glad all is settling down. For me the insurance issues were way more stressful than taking the medicine. I know it provoked the severe insomnia and the drug is just dragging that out
« Last Edit: December 08, 2016, 10:01:48 pm by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline sammantha55

  • Member
  • Posts: 20
  • geno 2b dx in 2006
Re: Starting Epclusa on Tuesday
« Reply #294 on: December 09, 2016, 12:08:34 am »
Hi Elias, I've moved to another department within so my insurance stayed as is and isn't an issue thankfully but the stress of closing our unit and having to find another position was a lot to deal with at the time . Sorry to hear the insomnia isn't letting up, are you able to sleep during the day at all ? hope it gets easier, keep us posted.. congrats on being undetected, that's great news!!

Offline elias

  • Member
  • Posts: 285
Re: Starting Epclusa on Tuesday
« Reply #295 on: December 09, 2016, 12:43:31 am »
Hi Samantha.

Sometimes I just doze off out of exhaustion. But even more tired after that.

Hope you can get started soon on the Epclusa, now that things have eased up.

The real challenge ahead for me will be to reach a lower fibrosis level after HCV is cleared. I'm hoping that part is more under our control
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Phoenix17

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #296 on: December 09, 2016, 07:59:40 am »
Hi friends! I't been awhile since posting. Congrats Mw on EOT! I too finished, Took my last pill on Monday. I don't have any problems sleeping, and feel pretty good! I used to have lower belly pain, It;s totally gone. I still have some ankle swelling with pain in my left ankle, but it is feeling better than before treatment. I am not as tired as before either!  It feels great to be done, and it will be interesting to see how I feel once the Epclusa has cleared. Mw - keep us posted on how you are feeling. Hang in there everyone!!!

Offline rk

  • Member
  • Posts: 99
Re: Starting Epclusa on Tuesday
« Reply #297 on: December 11, 2016, 01:21:49 am »
Congrats Phoenix, I remember you mentioned ankle swelling. Did that start or get worst on Epclusa? I have some of that as well brought on by another med but Epclusa seems to make it worst. I have 20 days to go, will see if it lessens after EOT.
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline Phoenix17

  • Member
  • Posts: 48
Re: Starting Epclusa on Tuesday
« Reply #298 on: December 11, 2016, 09:50:32 am »
Hi rk- My ankle had been swelling and hurt for awhile before treatment. The swelling in my ankle went down quite a bit on Epclusa, but gets worse if I am on my feet for a long time. There is still some pain, but not as bad. You are almost done as well! Yay!

Offline bluebird

  • Member
  • Posts: 44
  • Life is beautiful! No matter what...
    • https://goo.gl/images/HVZk8m
Re: Starting Epclusa on Tuesday
« Reply #299 on: December 14, 2016, 12:56:59 am »
Hello everyone! I hope everyone is doing well and getting ready for Xmas!
« Last Edit: December 15, 2016, 07:12:52 am by bluebird »
August 2016 before Oct 14/ 4 weeks/  8weeks/ 12week
Genotype 3a.
Viral load 8 million.                <15            N/A    notdet
Comp. cirrhosis
AST        261                          90              70         50
ALT        373                         220             138        89
HCV detected                 <15 detected      NOT DETECT

 


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