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Hep C Discussion Forum -> On Treatment -> Epcluser's Corner
Post Info TOPIC: Epcluser's Corner
Phoenix17


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RE: Epcluser's Corner
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Thanks everyone for your thoughts and prayers. It is a tough time, but it will get better. Kind of like the diagnoses of hep c and then the cure. It's a shock and scary, then it slowly you begin to feel better with the help of family and friends. 

Feeling pretty good physically. The headaches are not as frequent. No other side effects to report!

Thanks again friends.



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JimmyK


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Liz I am sorry to hear this. I know the feeling of losing parents. You and yours are in my prayers.

 

Warm Regards

 

JimmyK



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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."
Tig


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Liz,

I'm sorry to hear about your Dad. You have my condolences as well. I will keep you all in my thoughts and prayers.

Glad that the name change stuck! I was hoping it would be an easy fix and it was. Sometimes they can give me fits! I have to agree that it's a nice title and is already a popular thread. I imagine it's going to be well visited due to the effectiveness of this protocol. Good stuff!

Keep the positive reports coming!! 



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Cinnamon Girl


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Hi Liz,

Oh, I`m so sorry you`ve lost your dad, I really sympathise.  Condolences to you and your family.   Good to hear you`re bearing up well and it sounds like your treatment is going great. 

Wonderful to read all your reports on progress so far, what a nice group of Epclusers we have here!

Have a good day, keep drinking the water...  smile



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

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

 

 
Ruby Red


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Hi Everyone...a great big hello to my fellow Epclusa warriors :)

I've read some of the posts and I must agree the sides on Epclusa are more than manageable.  I'm finding that anything I'm feeling comes in waves and certainly doesn't stay long at all.  Honestly I don't believe I am feeling anything new except for the headaches, I was feeling fatigued pre-treatment and as we all know just feeling yucky some days.  I must say in comparison to prior treatment (peg) this is a cake walk lol  Just knowing that I will join Club Zero very soon is exhilarating!  Whoohoo!  Wednesday I start week 2...it's hard to believe it's been almost a week after all the waiting and gobblely goop ...I'm on my way smile

Phoenix17, my heartfelt condolences, your in my prayers.

There seems to be many of us in the Epclusa Corner, we are a blessed group indeed!

It's another beautiful sunny day here, 26C /79F with the humidex we are looking at temps around 30C. 



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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)

 
Phoenix17


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Hi Ivery! Sounds like you are doing great! My only sides are a slight headache that I still get once in a while. It's only been 6 days, so I am sure it will go away. Nothing major though. Have not been feeling tired, although for the last few years I have had quite a bit of fatigue.

One weird thing though, I walked into a room at work last Friday and everything seemed a lot clearer. Kind of like when you get a new prescription for new glasses. I don't feel like my brain fog is lifting, but who knows.

Tig - Thanks for the name change! Sorry I not get back to you sooner, but my dad passed away late Saturday night. Doing OK.

 

Hope all is well for everyone!



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Ivery


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Oh yeah, hello Phoenix!  Tiger or Tide? 



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Genotype 3  f2     vl 18,216,000. Hcv 7.260.  Alt 232. Fibrosis score 0.56. Necroinfl score 0.89    necroinfl grade a-3   sot 8-17-16 epclusa
Ivery


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Ooops, I just looked at the old bottle. It was 400 myg also. Haha I m not sure what I was thinking. The old bottle of ribv was 200 mg I think. Anyways, 400my since sot epculsa. 



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Genotype 3  f2     vl 18,216,000. Hcv 7.260.  Alt 232. Fibrosis score 0.56. Necroinfl score 0.89    necroinfl grade a-3   sot 8-17-16 epclusa
Canuck


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Hey Ivery, 

I've been wondering how you were making out!! Phoenix will be glad to meet another a fellow epclusian from Alabama here, if you have not met up elsewhere yet.

Congrats on cracking open bottle #2 BTW, but, what the heck is that all about ... "first bottle 200 mg, second bottle 400 mg"!!??

In epclusa the standard dose is one pill daily of combined sof=400 mg and vel=100 mg. Can you elaborate what you mean in your post? I am awful curious!!

I remember what a distasteful start you had to get through as your "intro" to treatment, before you were lucky enough to get switched up to epclusa, but I can't understand your post, if they actually modified/changed your sof/vel dose due to your prior start of the riba based one??!! Doesn't make any sense. Maybe I am misunderstanding.

Glad tho your worst side at the moment on the good new stuff seems to be that serious sugar fix!! smile C.

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)
Ivery


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I'm on my second bottle . First bottle 200 mg, second is 400 mg.   It's a pretty normal lifestyle I'm experiencing.  Only 1 major side effect.  I crave sweets like CRAZY!!!!! And I'm a healthy eater. Candy, jelly, ice-cream what ever I can get. I try to watch it but I'm getting out of control. Actually sucking my 3 rd piece of butterscotch now. Haha. I did notice a little more tiredness since I started second bottle. But nothing extreme or  problematic. I took a nap once since I started epclusa. 



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Genotype 3  f2     vl 18,216,000. Hcv 7.260.  Alt 232. Fibrosis score 0.56. Necroinfl score 0.89    necroinfl grade a-3   sot 8-17-16 epclusa
Tig


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I believe my limited cyber skill has achieved the change you seek, Liz! Lets see if it works, lol! A new day to go with a new title... smile



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Cinnamon Girl


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My Epclusa Experience
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Hi Phoenix,

Tig can do that for you.  I agree, it has a nice ring to it! 

Thanks for starting this thread, it`s going to be very useful as a source of information for others coming along, and I`m sure we`ll be seeing a lot more people joining you in the coming weeks and months!  



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

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

 

 
Phoenix17


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I would love to change the title to Epcluser's Corner. Makes more sense. 

Tig - How can I do that?



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Canuck


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Phoenix,

So glad you, and Ruby Red, and now Ironworker are starting Epclusa all about the same time!!

Lovely to see it finally being rolled out by prescription in the U.S., and I am thrilled to see my first-fellow Canadian (Ruby Red) getting it by prescription as well!!

Just grand! You are so lucky.

Ironworker, 

You can also check out other folk here on Epclusa, by searching up their name threads "Ruby Red", Canada, "Ivery", Alabama, "CandaceV", Ohio. With you in New Jersey, and Phoenix in Wisconsin, I hope we will just continue to see many more and more lucky Epclusa recipients becoming well right across North America soon. I hope Epclusa  is now or soon to start in other countries too! I have not heard so yet.

 

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)
Pablito


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I'm calling this the Ecplusers' Corner from now on in.



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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.
Pablito


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Great to hear you've started Ironworker.   The sides are so few and so mild you won't really need to 2 weeks leave from work but the fact that you do is brilliant.



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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.
Ironworker


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Thanks tig 7:00pm sounds a good time for me. I'm going to take 2 weeks off and let the meds get into my body. God bless

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Tig


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Hey Spud Wrench (IW),

I like to tell people that the administration time is subjective. We used to take our meds based on the side effects we experienced. If you don't have any, it isn't critical. Should you develop headaches or fatigue right after taking your medication, then it comes into play. What is important is taking it at the same time daily. If you have to change times, it can be done, very slowly, with your doctors knowledge. The key to these meds is keeping a constant level in your body and that's done by proper scheduling.

As Liz mentioned, she takes hers at 7PM and sleeps through the period that side effects affect her most. You shouldn't have much in the way of side effects anyway. You may have some fatigue, headache and general malaise. Your first line of defense is water, plain old water. Drink at least a gallon per day and if you're crawling around, hanging steel, you might want to increase it a bit! Been there, done that.

Just take it easy and let your body talk to you. You have to keep in mind these are powerful medications. The better you take care of yourself, the better these treatments take care of you.  

 



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Phoenix17


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I take mine at 7:00pm. This was advice from a few on the forum. It works well for me. I think sleeping thru some of the side effects is a good thing! I do know of someone who takes it in the morning. I guess it depends on your schedule. The only side effect that i have had are a few slight headaches. You will do very well!



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Ironworker


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Hello everybody can anybody tell me what's the best time to take meds ? Just curious. Thanks and god bless

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Phoenix17


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Day 3: Still slight headaches ( yes Tig, I am drinking a gallon of water a day!) smile Feeling a bit more tired tonight than I have been. Otherwise all is well!

Tig - My daughter is keeping a close eye on me. Every night she makes sure I am drinking water!

Syd - I was a big drinker for many years. When I adopted my daughter, I pretty much stopped. Whenever i would have a drink in the last few years, it really made me feel yucky. It's a good thing I don't like it anymore! Yes, I know that best friend well.

It is strange to think that the way i have been feeling all these years will be gone. I know I won't feel like 20 again, but I also know that my body and mind will get better. 

Would love to hear how everyone else is doing on treatment!

 

 



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Sydhanrahan


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How exciting to see how quickly Pablo and Canuck have been joined by a throng of others. And it's nice that Ruby and Phoenix can compare daily notes on their journey. 

How lucky are we to have actually lived to tell the tale and get the new DAA treatments? 

(Sorry but when you've had a chronic illness for 40 plus years it takes a while to adjust to the fact that maybe your health is improving. ) I've never felt blessed before this. Also had to let go of the hand of my best friend, Alcohol. I didnt really miss her in the end as she'd been making me feel so sick whenever we got together. It's strange that I couldn't really imagine life without her, but now she's gone I realise what a bad influence on me she was! Admittedly we did have many fine times together but they were always costly in one way or another. How scary - I'm sounding like a reformed alcoholic! biggrin

Anyway back to the biz - you go girls and everyone else who's been lucky enough to get Epclusa. 

Syd



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.
Tig


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I have heard others say they can feel it working. Maybe you are? Whatever it is, I like the way it sounds! Keep up that water routine, we're watching, lol!

Once you get a week under your belt, you'll feel a bit more in tune. It takes a while for your body to adjust to these drugs, they are serious business. You may feel great, just the same, remember to save some energy for Dragon slaying. The time will go by quickly, so treat yourself right. You'll feel so much better for it. This is where I insert: Take it Easy and encourage it... smile  I'm counting on an easy ride. Good luck!



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Phoenix17


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Thanks guys! I am drinking a gallon of water a day, and I think it makes a world of difference. 

Day 2 is about the same as yesterday. Small headache in the morning, but none since. 

I know it sounds weird, but I can feel it working. biggrin   Maybe its all in my head, but that's OK. smile



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Pablito


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I feel great, thanks, Phoenix.   I was a tad disappointed after finishing treatment because I was expecting some big improvement, but once I thought it through - it's going to take time for my liver to heal - the disappointment left me.

I did notice a big improvement though after about a week on Eclupsa.  That toxic feeling I had for years disappeared. Yeah, light headaches and a slightly zonked feeling sounds about right for sides...but these should go in a week or so.

Pablo



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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.
Tig


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Hey Liz,

Sounds like we've got a good report already! Water is your best friend to ward off the side effects. The first 2-3 weeks tend to be the adjustment period and if you keep hydrating, eating well and stay compliant, you'll be celebrating in no time smile

 



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Phoenix17


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Hi Shadowfax - Yes, the water has been helping. I was surprised how easy it was to drink a gallon of water! 

I hope we do see a lot of people starting this. Hopefully it will be easier to get, and be available everywhere. 

 



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Shadowfax


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This is great! So many people starting Epclusa at the same time and I know everyone will easily support everyone else.

This protocol it is clear will pick up a lot of steam considering all the ground / genotypes it can cover.

Great news and Phoenix ... It may be the Epclusa that helped with your ankles as I would speculate that just like Harvoni, it dehydrates you and that is why water is so important. It probably got rid of your headaches as well. I know 100% with the exception of one day out of 84, whenever I started to get a dull headache on Harvoni, drinking water right away got rid of it.

Congrats to all starting this and you are on your way to slaying this dragon.

 

SF



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65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
Phoenix17


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My Epclusa meal was the best thing i have had in a long time! The only side I had today was a few tiny headaches. It was weird. As soon as I felt one coming on, it would disappear. They would last about 2 seconds. Mostly in the morning. Otherwise I felt pretty good. Slept well except for the times i had to get up due to drinking a lot of water.biggrin One good thing I noticed today is that for quite a while i have had swollen ankles. One hurts as well. (that's why I went into the doc in the first place.) Even with being on my feet a lot today, both ankles are not swollen as much for the first time in about 3 months. Epclusa??? We will see. 

Welcome Ironworker! Congratulations on the Epclusa! Keep us posted on how you are doing with it. 

Pablito - How were you feeling after a week? 

Ruby Red - Did you get it yesterday? How was your first night? 

Thanks everyone!

 



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Canuck


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Hey, hey Phoenix - how's she going? Did your delish epclusa meal sit well with you last nite? You and Ruby will be comparing menus later today!! biggrin 

Welcome Ironworker - great news, you got Epclusa too! New Jersey must be a good place to be. Nice it's being rolled out there. So far you have friends in common in Wisconsin, Alabama, Ohio, and Ontario, Canada, and it seems you will soon be getting more and more company to share experience with as we are seeing epclusa now being doled out to people! biggrin C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

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

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

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

 

(SEE UPDATES IN BIO)
Pablito


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Congrats Iron worker.

I finished Eclupsa 12 weeks ago.  In terms of side effects, they were super-mild and only lasted for about a week at the start of treatment.  I had some flu-like symptoms.  Flu-like is not the best word but it was in that ball-park...a sort of zonked feeling of being on powerful drugs.   A handful of mild headaches and some stomach cramps on one occasion.

Really nothing to worry about.  Drink loads of water and rest when you can.

Best of luck.

Pablo



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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.
Ironworker


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I've been approved pharmacy ready to ship. First have to take care of a dental problem first looking forward to treatment. Has anybody had any side effects from treatment? Would like to hear from you. God bless

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JimmyK


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The Pioneer Spirit is alive and well at HepCFriends.

You go you lil ole trail blazer!

JimmyK



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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."
wendyo


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Thanks for starting this thread Liz and best wishes for a successful journey! Looking forward to hearing how this TX goes for you and RubyRed.



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Wendy 53 y/o, DX 1994, geno 1A F1

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

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

 
Cheddy


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I can't wait to hear how it goes.  I really think we are about to put this whole virus in perspective. Dragons Be Gone!



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

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

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

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 
Tig


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Nice title for this new thread! It will be a great place for all current and new Epclusa members to meet. It will turn into a great resource going forward from here. There aren't many Epclusa w/wo Vox veterans around here because the drugs are so new. If you weren't on a trial as our group here was so fortunate to get on, these are the first applications of the protocol. I know it's a ground breaker. The researchers just continue to improve these treatments, it's amazing. If there was ever a good time to have Hep C, it's now...



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Phoenix17


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Epcluser's Corner
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Today is the first day of the rest of my life. I was diagnosed with hep c a month and a half ago. After many blood tests and a Fibroscan my doc was ready to put the pre approval in for Epclusa. I was approved and received my first bottle today. I will be on this for 12 weeks. I took my first dose at 7:00pm.

I will regularly post how it's going. 

Not much to say tonight, since it's only been a little over a hour.biggrin   

Anyone here that is on Epclusa, please let me know how its going for you. ( Ruby Red!) It will be interesting to see how the same medication works with different people. 

It's going to be awesome!



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