Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Post Info TOPIC: Epcluser's Corner


Senior Member

Status: Offline
Posts: 218
Date:
RE: Epcluser's Corner
Permalink  
 


Thanks Tig and Allison! I know that SVR will happen in the end. When I told my daughter, she had a big smile on her face and said "It's working so well!" That along with everyone's encouragement has made me feel better.

Great to see you here Allison! Weird that you couldn't use the name you wanted. I hope you are managing the Epclusa better!

 

 



__________________
Tig


Admin

Status: Offline
Posts: 7956
Date:
Permalink  
 

Hey Liz, 

Don't sweat the 36, there are people that are detected at EOT and still achieve SVR. The days of old when an RVR was important have passed. It's nice to see it on paper but it doesn't change the high rates of success if it takes a little longer. I'll go so far as to say that were you to have the test repeated on Monday, it would be undetected. 36 is nothing... You should be celebrating and riding high on this great news! I'm thrilled for you!!!!! wink



__________________

Tig

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

Hep C FAQ

Signature Line Set Up/Abbreviations   Payment Assistance

 



Member

Status: Offline
Posts: 10
Date:
Permalink  
 

Phoenix and Razor - congrats to you both. These are huge accomplishments in your treatment. Phoenix, I am mw2324 but couldn't use that name for some reason so I changed it. Do not get discouraged, your numbers are still fantastic and you will be undetected. Not everyone is undetected at 4 weeks but still beat this in the end. 

Canuck- to give you some additional background on me, I am 30 yrs old and was infected 10 years ago. My beginning viral load was 49,190. AST 23 and ALT 31 at beginning of treatment. Liver at F0. After 4 weeks, ALT and AST are both at 19. Epclusa hasn't exactly been a walk in the park for me but it is manageable.



__________________


Senior Member

Status: Offline
Posts: 218
Date:
Permalink  
 

Thanks Ruby! It is a huge drop, but I guess my expectations were high, so it frustrates me a little. Thanks for the encouragement! I needed that today. hmm

You are right, there is a battle being won!!!

RB - That is a plain old 36. Not 36,000,000 (Thank goodness!)



__________________


Senior Member

Status: Offline
Posts: 126
Date:
Permalink  
 

Good Morning Phoenix

Don't you dare get discouraged, don't give it one negative thought! We are all different and will receive our UNDETECTED report at different times that's not to say that it's negative thing.  YOU'VE GOT THIS GIRL!!

Chin up, there's a battle being won number1.gif



__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 



Veteran Member

Status: Offline
Posts: 43
Date:
Permalink  
 

Hi Phoenix,

With such a high starting point, i think it looks good, but is your current VL 36 0r 36,000,000.

Your going in the right direction !



__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



Newbie

Status: Offline
Posts: 4
Date:
Permalink  
 

Agreed - all I know about this hep doc is that he moves from office to office, which was their explanation as to why I am unable to see him until the 19th.  I find it fishy too, believe me.  Guess I'll have to be paranoid until then..



__________________
Genotype 3a Started Epclusa August 2016


Senior Member

Status: Offline
Posts: 218
Date:
Permalink  
 

Thanks Canuck, that was awesome! Congrats RB!!!!!!

I did get my labs back this morning. Not happy that it did not come back UD. I have 36 stragglers left to contend with. Started with a VL of  22006116. I know I should be happy that it was such a huge drop, but to tell you the truth I was expecting a big fat 0. Still have 2 more months to kick the pesky 36 out!!! I don't think my doc ordered any other blood work, so I will have to wait on that. A little scared this morning to tell you the truth. 



__________________


Veteran Member

Status: Offline
Posts: 43
Date:
Permalink  
 

Hi all,

Well just had the 4 and a 1/2 week VL result. Undetected, must admit apart from being over the moon, i was a bit surprised after last weeks episode. And after having been feeling gr8, yesterday was a real bummer, brain fog, thumping head ache, fatigue, bad stomach, but hey ho on we go..

Will try to attach pre and todays VL, can anyone explain the 'Log' range for me ?

Cheers All

Happy Razor Blade



Attachments
__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



Guru

Status: Offline
Posts: 2400
Date:
Permalink  
 

Phoenix,

Here's that song (anthem) you asked for! ... I'm still looking for (by popular request) Wendy's "doggy mantra kill, KILL, KIIILLL video" ... I just love-that-dog! ... get back to ya soon on it.  wink C.

 

No, no, no - I didn't say  "Viral LOAD", ... I saa-id ... "Viral ODE" !! You know, like ... as in ... "Ode to a Virus"??

 

Begone you vile

wicked thing,

herald my war cry,

it's your death I sing!

 

Be forewarned,

you'll taste my steel!

Of your innards,

I'll make a meal!

 

I'll pierce your breast,

crush your head,

slaughter your children,

oooh how,  I  wish-you-DREAD!

 

When you're starved and bleeding,

dis-armed, eyes sloughed,

then I'll strangle you thoroughly

'til quite cold enough!

 

And when your flesh

rots and decays,

I will celebrate,

every day!

 

I'll dance on your bones,

no grave for thee,

your evil soul to

purga - to -ry!

 

Your essence will vanish

Into hell's abyss,

dust, washed to nothing,

OH - MY - BLISS!

 

I tire of you,

you creepy skum,

no right to exist,

YOUR DAYS ARE DONE!

 

The army has come!

 

(a velpa war cry!)



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



Guru

Status: Offline
Posts: 2400
Date:
Permalink  
 

Phoenix and Pablo,

You are both right, it IS VERY awesome and VERY exciting around this neck of the woods!

So nice for you Allison!! Congrats on your 4 week results. And soon, the same will follow for Ruby, Phoneix too! Allison, did you mention what your prior VL load/ALT/AST was, to compare to your newly found UND and now "normal" LFT's? Can't wait to hear Ruby's LFT's if they come tomorrow or as soon as they do. Phoneix do you think your LFT's will arrive before your PCR result does?

So much more good news to come for SO many others in the epclusian nation that I soon won't be able to remember all the names!!

I truly believe EVERYONE on these drugs are going to do perfect!

I am bit surprized and disappointed for miandre though - that does not sound right or good to me, (unusual to me), but ... maybe they are just "dis-interested" (as you say) that they did not even pre-arrange ANY blood draws or appointments for you since pre-treatment! Maybe they ARE too cheap? to order bloodwork - I just find that hard to fathom. Most folk are getting 4 week draws (LFT's and PCR). Even if your doc WAS cheap and callous enough to make you wait for bloods as long as EOT+12 weeks, did he not give you a clue that he would NOT be ordering you ANY bloodwork, or would NOT be wanting to see you until AFTER treatment was finished?? THAT situ is just weird (to me)!! I don't like your doc! Not sure if he is a general practitioner, or if he is a hep doc, but if I had seen this coming down the pipeline, I would have pushed you to find any temporary "additional" doc (any port in a storm), even a family doc, a GP, whatever, just somebody, who would have given you lab requisitions to get you "some kind" of bloodwork in the interim (preferably LFT's and PCR at 4 weeks), while you waited to see your doc again in Nov!! Brother, these docs! Don't they get it, that it is a reliefe to see any chnage to the good as you go along?

Everyone is so confident (me included), and justifiably so, that 12 weeks of sof/vel cures us ... but really!!, the stress of NO feedback is hard to take! Not fair to you - you will just have to be satisfied seeing all of us doing so well, and know, that you are too!!

Ahhh, I just looove the smell of that epclusa in the mornin!! smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



Senior Member

Status: Offline
Posts: 218
Date:
Permalink  
 

Awesome Allison! Terrific news! You are on your way to SVR!



__________________


Senior Member

Status: Offline
Posts: 362
Date:
Permalink  
 

Congrats Alison.  Being UND at week 4 correlates nearly 100% with SVR so you are most certainly going to get cured.

Miandre - liver pains during treatment (and after treatment for that matter) are common.  I've no evidence to back this up but I think your theory that this is the liver regenerating is true.  I had them during treatment and for about a month or so after in exactly the same place, i.e. below the right rib cage.

Such an exciting spot this Ecplupser's Corner at the mo!

Pablo



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



Member

Status: Offline
Posts: 10
Date:
Permalink  
 

Thanks for the support Ruby. I really appreciate it.



__________________


Senior Member

Status: Offline
Posts: 126
Date:
Permalink  
 

Bravo Allison!!!   This is such great news!!  I'm so happy for you, it's quite a touching moment really!!

You've got this!!!



__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 

Tig


Admin

Status: Offline
Posts: 7956
Date:
Permalink  
 

Mike,

Your experience with the doctor is not uncommon either. Some are constrained by treatment guidelines that say periodic liver function and blood count screenings are all that's needed during treatment. Then a RNA viral load at week 12 after you finish. Doctors that are real busy delegate some care onto nurses and PA's, who follow orders. It is frustrating to be left in limbo land, but I expect you to do well in spite of their testing protocol. It can be a anxiety filled period of time, but you should remain confident. These really are amazing times in the treatment of HCV!



__________________

Tig

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

Hep C FAQ

Signature Line Set Up/Abbreviations   Payment Assistance

 



Member

Status: Offline
Posts: 10
Date:
Permalink  
 

Thanks Tig!

__________________


Newbie

Status: Offline
Posts: 4
Date:
Permalink  
 

Wow Tig, thank you so much for offering that knowledge.... I am so grateful to hear reassurance.... I was seriously thinking the worst things! I know it may seem odd that I haven't had any blood work done, but to be honest my doctor seemed generally uninterested in my case, just told me he would work to get me on the medicine, and here I am about to get off and his office is apparently booked until the 19th of November. Frustrating!



__________________
Genotype 3a Started Epclusa August 2016
Tig


Admin

Status: Offline
Posts: 7956
Date:
Permalink  
 

Hey Mike,

The feeling you're experiencing isn't uncommon. Occasionally the supporting structure around the liver is sensitive as the inflammation subsides. The liver itself has no pain receptors. There is also a loop of the large intestine that sits in the exact same area that very often causes some discomfort during treatment. Try increasing your water intake and be sure you are eating a nutritious high fiber diet. Don't worry!



__________________

Tig

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

Hep C FAQ

Signature Line Set Up/Abbreviations   Payment Assistance

 



Newbie

Status: Offline
Posts: 4
Date:
Permalink  
 

Hi to all in the Epclusa Corner ^_^ !!

 

   I hope everyone here is doing well.  However, I came here to ask a question to you all.  I've been experiencing pain on my right side, which is the same pain I would get when I actively had Hep C, just a lot more mild, doesn't hurt but is obviously there.  I'm almost done my 3rd bottle, about 10 days left, and my treatment will be over.  I'm not able to see a doctor until November 19, which will be a few weeks after taking my last Epclusa pill.  I was just wondering to you all, has anyone else experienced this "feeling" in your right side?  Is it my liver regenerating?  I have no idea, I am just scared because I haven't had any blood work since I began the medicine and I'm worried that maybe it didn't work and I may still have it .... I've been freaking myself out pretty bad.  I don't know if maybe I have some type of undocumented illness/issue with my body that I have yet to discover... I just want to know if anyone else has been experiencing that "full" feeling on the right hand side of their torso like I have.  I feel like maybe it didn't work and they'll tell me sorry but I'm part of the 10% it doesn't work for....Genotype 3... just pretty worried, I appreciate the answers...thank you everyone and may your treatment be successful, in God's hands!!

 

Sincerely

Mike



__________________
Genotype 3a Started Epclusa August 2016
Tig


Admin

Status: Offline
Posts: 7956
Date:
Permalink  
 

Hi Allison,

That's excellent! Big congrats go out to you, woot!! This is a sure sign of great days ahead. The now normal LFT's indicate a happy liver that is on the road to recovery. The fatigue while on treatment isn't uncommon and will improve. You have a battle going on inside you and the Dragon is losing ground. Your body requires that extra energy to fight. Do your best to give yourself the extra hydration and nutrition needed to win. Recovery is sure to follow! Good luck smile



__________________

Tig

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

Hep C FAQ

Signature Line Set Up/Abbreviations   Payment Assistance

 



Member

Status: Offline
Posts: 10
Date:
Permalink  
 

Thank you Razor, I'm looking forward to hearing everyone else's great results as well!

__________________


Veteran Member

Status: Offline
Posts: 43
Date:
Permalink  
 

Excellent news Allison. Well done.

__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



Member

Status: Offline
Posts: 10
Date:
Permalink  
 

Hello, My 4 week labs are undetected. All other LFT's within normal range. Feeling tired some days but other than that, ok. Good luck to everyone!

__________________


Senior Member

Status: Offline
Posts: 126
Date:
Permalink  
 

RB

I'm so happy to hear you're feeling better, that's good news in itself!  Yes there are a few of us going for our tests and I must agree, the anticipation does feel like Christmas!!  Looking forward to hearing  everyone's results smile



__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 



Veteran Member

Status: Offline
Posts: 43
Date:
Permalink  
 

Feeling gr8 again, and its so good to see lots of us waiting for 4 week tests. Rather exciting actually.

Feels like xmas lol.



__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



Guru

Status: Offline
Posts: 2400
Date:
Permalink  
 

Phoenix,

Oh ya, the velpa anthem!! I'll find it and post it again, as soon as Wendy posts that mantra dog video again ... kill, KILL, KIIILLLL! wink C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



Senior Member

Status: Offline
Posts: 218
Date:
Permalink  
 

Let us know Allison! Waiting is hard. It seems like we are waiting for something all the time. Where is your waiting song Canuck? smile

Thanks Canuck! It will be awesome to see everyone's results. Love the quote from Apocalypse Now.biggrin

Glad you are feeling great RB.



__________________


Member

Status: Offline
Posts: 10
Date:
Permalink  
 

Thanks for welcoming me everyone! I'm genotype 2b. My viral load results are in but I cannot view them online until tomorrow morning. I'll let everyone know as soon as I can. Best wishes to everyone.

__________________


Guru

Status: Offline
Posts: 2400
Date:
Permalink  
 

Razor, 

With your prior unrewarding experience with interferon and riba, it is no surprize to feel uncertain. 

The most devastating "sides" we experience from treatment could be "fear and doubt".

It is sometimes hard to detect the other overwhelming building sides of "hope and joy". Watch out for those, they're coming! wink C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



Guru

Status: Offline
Posts: 2400
Date:
Permalink  
 

Hi Allison,

Glad to see you here! and glad you got epclusa. Wow, 31 days already! What GT are you? We will all be looking forward to hearing more from you, and on your soon to come 4 week VL! smile C.

Phoenix - you go girl!, I can't wait to see your VL, and Ruby's, and the SO MANY lucky folk here who are now on epclusa!!

I LOVE the smell of epclusa in the mornin'!! (as Robert Duvall would have put it in Apocalypse Now)!! Victory! smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



Senior Member

Status: Offline
Posts: 362
Date:
Permalink  
 

Alison - welcome to the forum.  Everyone seems to be getting Ecplupsa these days, which is great because it its a great drug.

Canuck - I love the phrase 'insult' in relation to alcohol/drugs.  That's exactly what they are!



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



Guru

Status: Offline
Posts: 1841
Date:
Permalink  
 

Razor Blade wrote:

Thanks Guys n gals for all the moral support.

As it happens, whether they're working or not i feel pretty gr8 today, infact the best day since i started.smile


 Well that there is some great news! Glad to hear it and oh yes, it's working. wink

 

JimmyK



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



Veteran Member

Status: Offline
Posts: 43
Date:
Permalink  
 

Thanks Guys n gals for all the moral support.

As it happens, whether they're working or not i feel pretty gr8 today, infact the best day since i started.smile

 



__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



Senior Member

Status: Offline
Posts: 218
Date:
Permalink  
 

Welcome Allison! Great to meet you. I am starting my 2nd bottle of Epclusa tomorrow. I will be going in tomorrow to have my 4 week labs as well. There are a few of us within a few days of each other that are on treatment with Epclusa. Except for a few headaches in the first few weeks and being tired, I am feeling really good. When you get your labs back, let us know!



__________________


Member

Status: Offline
Posts: 10
Date:
Permalink  
 

Hello everyone,

     I'm very glad to be here, I've been trying to get onto this forum for a few weeks. I am on day 31 of epclusa, waiting on the results of my 4 week labs. I have some good days and some bad days but it's very much worth it. Take care!



__________________


Guru

Status: Offline
Posts: 2400
Date:
Permalink  
 

Razor,

I concur ++ with Cinnamon Girl and Pablito. It is a fretful time for anyone going through treatment, and especially hard to find reassurances along the way, when you have been forced to do most of the heavy lifting alone! Focus on the obvious good results in front of you. You are doing a good job.

With frequent blood draws, you WILL see more fluctuations (up and down) that most people never have an opportunity to see. As you go along and see the continuing downtrending labs continue (despite any frequent looks at stalls or fluctuations) you will find more and more reassurance.

Don't fret about the constipation episode, just keep on it and prevent it. Lots of water please, for multiple reasons. It only helps everything. Downing drugs or alcohol is a worse insult to your liver in it's compromized position IMHO. Important to treat all body systems with tender, loving care.

Go have a fibroscan for fun. Feed yourself healthily, try to get more rest. Be pleased with your lab responses to the drugs thus far. It will work.

You have had a nice telling ALT/AST drop. I can't recall if you had a prior GGT to compare to, I don't think so?, but at 72, it is not very elevated (if your lab scale is similar to the North American scale of the range being up to 61 U/L for males). Sometimes GGT (never minding HCV) can be up just in response to alcohol or drug insult. You may well see a drop GGT too over time.

Focus on your obvious good response, keep treating yourself well. Your doing it! smile C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



Senior Member

Status: Offline
Posts: 362
Date:
Permalink  
 

Hi Razor

Cinnamon Girl is right: your LFTs wouldn't have come down if the drugs were fake.  They've come up a bit but they tend to fluctuate anyway and are still in the normal range, or just slightly above, which is essentially the same as normal.

Doctors feel disempowered when we go the generic route.   12 weeks is the recommended length for Eclupsa even for people with cirrhosis.  

Don't panic!

Pablo



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



Guru

Status: Offline
Posts: 5599
Date:
Permalink  
 

Hi RB,

I really wouldn`t jump to any conclusions at this point, remember that your liver enzymes have dropped quite significantly from what you posted they were at the outset (AST - 93, ALT - 81), which to me indicates that your meds are genuine and that they are working. It`s actually quite usual for some fluctuation to occur in these numbers and because you`re having such frequent blood tests you are seeing quite a variation. Wait and see what your viral load test is, and if you`re still not UND then please don`t despair!

About the dosage, 12 weeks is standard for Epclusa, so you`re on track with that, and ribavirin is only prescribed with it for those with advanced cirrhosis (decompensated cirrhosis). See this link for the full prescribing info...

Epclusa Prescribing Info

Your WBC count is a little low at 3,700 (normal range is 3,500 - 10,000) but I wouldn`t be too concerned with that either. I can imagine how stressful it must be in your situation but you seem to be staying on top of it, so well done for that.

Good luck with your VL result, try not to stress and make sure you`re drinking plenty of good quality water to help with the side effects... and to keep everything moving along... smile



__________________

Jill 

(68 yo, lives in UK)

Was Gen 3a, 

24wks Peg/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



Veteran Member

Status: Offline
Posts: 43
Date:
Permalink  
 

sorry, cant upload/ attach. But all other bloodwork ok except GGT 72 and WBC 3700 !



__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



Veteran Member

Status: Offline
Posts: 43
Date:
Permalink  
 

Day 34 update

Hi All,

Thanks everyone for your concern and support.

After last weeks episode, yesterday and today i feel pretty good again, and with the prunes and bran things are starting to move along nicely.

I saw the Head Hep C Honcho in Thailand Saturday pm, obvisually new his stuff, However, he wasnt impressed with my meds, saying he has a patient who bought meds from Bangladesh and they were duff!

I got their contact through a lady on FB in the UK (geno 3a same as me) who was undetected after 5 weeks using Darvoni (not Harvoni) sofosbuvir and daklatasvir (it was actually the first pan genotype mono therapy available, before Epclusa) . He said quality can vary from batch to batch, i pointed out this was the first batch they had made, and he scoffed again, replying that it could be unreliable. (I enclose their quality control slip, how honest/reliable not sure).

Anyway, he gave me a list of bloods to do, i went this morning and just had some of the results back, a bit pissed of, the ALT and AST have risen quite a lot AST 49 ALT 48, up by 17! :(

see attached. I know we are not doctors, but it dont look good.

Did VL today and should have result Friday, but, you know, i am not to hopeful.

The other thing the Doc said was i should be taking in conjunction with Ribavarin or taking for 24 weeks not 12, so all in all not very positive.

It makes me wonder if last weeks constipation problems have contributed to this. I was in a lot of pain, in the liver area aswell.

Ok guys n gals, let you know when i get VL result.

 



-- Edited by Razor Blade on Monday 10th of October 2016 09:12:33 AM



-- Edited by Razor Blade on Monday 10th of October 2016 09:14:55 AM

__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



Senior Member

Status: Offline
Posts: 126
Date:
Permalink  
 

FYI    My meds come in a blister pack as prescribed by my Doctor.  At first I was thinking "it's only 1 pill per day" but I have almost forgotten myself.  I have set the alarm on my phone for 7pm and with the blister pack I am certain every single day.  This helps me :)




__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 



Guru

Status: Offline
Posts: 2400
Date:
Permalink  
 

Hi again Dave z,

So, you must be at about week 2? Glad you are finding the water is helping some - do keep it up.

I know about the brain fog!!, (before, during and after treatment!) but especially dense it was (for me) during treatment, mind you, my heightened fog on treatment I blamed mostly on the VOX (I think), while on my sof/vel/vox triple. I too "forgot" to take pills, and could have also easily doubled up, as I did not start off using a pill counter box either. I was late one day - I just plain "forgot" to take a pill! (More than once) I had to labouriously empty out my bottle, and count up the pills, to ascertain if indeed I had (or had not ) taken a pill!! I had no excuse for not using a proper pill counter box, as I even had one in the house. I never did double up on a pill though (even though I had to count the entire bottle to make sure one day!!), and, I was only a few hours late one day, but it was a good lesson learned.

It is safer to use a pill counter box - you can tell at a glance what you have taken (or not). (That's assuming I knew what day of the week it was! haha I was known to forget the month, the year, my age, how to drive ... sigh.)

I don't know how many hours apart you took your 2 pills that day, nothing to do about that now, hope you drank some extra extra water, but do mention "that day" you took an extra pill to your doc when you see him, he may or may not want to add one extra pill to the end of your treatment to make up - I kinda doubt it though. Keep flooding yourself with water. smileC.



-- Edited by Canuck on Monday 10th of October 2016 03:24:43 AM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)



Newbie

Status: Offline
Posts: 3
Date:
Permalink  
 

Things seem to be getting a little better until I had so much brain fog last night I took 2 pills, put the pills in a daily dispenser thing today. Water seems to help the body a lot.

__________________
Dave


Guru

Status: Offline
Posts: 1841
Date:
Permalink  
 

I took probiotics while on Harvoni but I agree with Wendy ask your Doctor.

That said assuming they say yes forget about the store bought yogurts. The pasteurization process knocks out the probiotics.

WATER! Keep things moving. Hang in there SVR is around the corner!

 

JimmyK



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



Guru

Status: Offline
Posts: 1031
Date:
Permalink  
 

R - when you talk to your doc, also ask if you can take a probiotic. 

HYDRATE



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

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

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

 



Senior Member

Status: Offline
Posts: 126
Date:
Permalink  
 

Hi RB

You have been through so much to say the least and you have managed each and every step.  Epclusa seems to have little hurdles to jump and yes the digestive system seems to be one of them.  Everyone is different so it only makes sense that we would experience the sides to different degrees.  I have to say although I had a bit of a crummy day today, each day is different and for me has been quite manageable.  I have been on treatment (interferon/riba 2010) and the side effects were horrendous so for me what I'm experiencing is quite easy.  I do drink water, lots of water yet it seems I have a thirst that can't be quenched lol so I keep drinking water lol

There is a battle going on within us, a battle that is being won so we must keep our eyes on the prize!

You're doing great!!



__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 



Senior Member

Status: Offline
Posts: 218
Date:
Permalink  
 

Sorry you are feeling yucky RB. I haven't had constipation, I drink a gallon of water a day and it helps! Hope you are feeling better. I know it's a awful feeling.bleh

I am feeling better. I don't think it had anything to do with Epclusa. I think with my Dad's passing and all the emotional stuff, it just wore me out. Life does that to you sometimes. I need to take better care of myself. More Naps!

Poo talk is ok.biggrin  I work with little kids, so I talk about it on a daily basis. 

Thanks Canuck. You are right. We are on powerful drugs, and have to realize that sometimes the body just feels it. Most of this past month I have been feeling really good, so a few days of feeling tired and out of sorts is not too bad. Even people without hep c feel like this sometimes. I think we notice it more. I do feel better than before treatment though!

 



__________________


Senior Member

Status: Offline
Posts: 362
Date:
Permalink  
 

Well Razor, you've had quite the week.  There are more GI side-effects with Ecplupsa than the other DAAs.   Constipation is the enemy for people with HCV...our livers already struggle to clear toxins from the body so if we're, ah-hm, bunged up too then the toxins overload can feel awful.

Are you drinking loads of water?  It helps constipation and is generally a good thing whilst on DAAs. 



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



Guru

Status: Offline
Posts: 2400
Date:
Permalink  
 

Hi Phoenix and Razor,

Sorry you are feeling crumby, both in your own ways.

I am actually a little bit surprized, NOT a lot surprized, but .... just a little.

Mostly, just because I had hoped you would both breeze through this, feeling not "too" bad, at all! Or, that you might notice things, less, as you continued on. Perhaps this will still happen, a "lessening". tkflex36 and webtomass (and I think oombant) said they did really had no discernible sides!!  I wish some of our other epclusians would check in pretty soon for feedback on how they are experiencing it now. You can always ring some of their doorbells to inquire of CandaceV or Ivery maybe, and I wonder how miandre is feeling as I recall they are all further along in their courses than you two. Ruby has reported some yuk too but seems to be truckin. 

But everyone IS dif!! You have been and ARE sick, you ARE on strong meds, and it IS a very mighty war being waged inside your body. How you feel may simply be a reflection of how a poor body has to deal with it all, the toxicity of the virus actually being killed off within you and the aftermath clean-up your body is being required to deal with, and may not just sides from the drugs. 

Warning! - Razor - poo talk coming! I too had constipation troubles, you NEED to pound down the water, perhaps MUCH more than you may think!! How much are you drinking?? REALLY important, in many ways, for multiple reasons. Be "pro-active" with your water and fiber, prevent constipation with water and dietary measures. "After the fact" actions do not help much, as you found out, just makes it harder (sorry, no pun intended). Back log will, no doubt, make you feel only more yucky. Do everything you can via water and diet-wise to keep on it, control it. Your back log may indeed be telling you that you have NOT had an adequate water intake.

I know, for a fact!!, that adequate water helped me reduce my headaches, constipation and some of the yuk feelings. I REALLY regretted not drinking much more, sooner!! It is very easy to not want to drink more water, to think you ARE getting enough, you may be surprized that when you do increase it, it does help. 

I can't help you in sorting out if you have "sides" due only to vel/sof, as I took sof/vel/vox, and I am convinced (so far) in retrospect, that my yuk feeling through treatment was because of pre-existing conditions, the VOX, not drinking enough water, and how my body just had it's particular way of dealing with the inner war going on. Headaches are listed as common side affect of sof (and vel) and most daa's for that matter. I had a tough time with fatigue and other symptoms, but so I did before treatment too.

I have learned tho, that water DOES help on treatment, dilution is one solution to the pollution.

I hope during yuk periods you folk are able to knock off work and sleep/rest as the body directs. Fuel, coddle and water yourselves well. There is a nice reward coming. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)

«First  <  1 2 3 4 5 6 7  >  Last»  | Page of 7  sorted by
 
Quick Reply

Please log in to post quick replies.

Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.