Hep C Discussion Forum

Thanks everyone! I received the first bottle this afternoon. I had to stop myself and waited until this evening. I wanted to take it as soon as I got it.

Ruby - So glad to hear you got yours today too!!  Yay! I have decided to take it at 7:00pm everyday. Sleeping thru whatever sides there may be sounded like a good idea. Please let me know how its going for you. 

It's been 45 minutes and I am feeling pretty good. lol !

 

 

Phoenix,

Sounds like you are timing taking your first dose before the delivery man has even turned around to leave!! I understand the fervent joy in getting that foil top peeled off and the first pill down the hatch. hee hee

Yes, unlike my regime, where I had to take my dose with food, you do not have to. Read the instructions that come with your meds of course, questions - do not hesitate to ask your doc of course. For epclusa plain everything I have read says you can pick anytime of day to take it, your doc likely told you this already (no?), priority tho is a convenient time that does not conflict with anything else in a busy day, at a time that you will not forget to take it (who'd a thunk it eh, but happens) and, IF you do get (at first) any headaches, I know Candace's husband switched his time (very carefully only as advised by his doc) from AM to PM to try to sleep over/thus avoid any feelings of "sides" such as a headache. So, pick a time, a good time of day for you, and stick with it. Be sure to wash your dose down with lots and lots of water. During your course of treatment and each day you may discover you need to drink MORE water than you expect, even though you have been told adnauseum to drink lots, I still (in retrospect, deduced that I did not always drink quite enough) and wished I had forced my self to drink a tad more. I am not a natural water drinker either! But a good side effect from being on treatment (that has lasted me past EOT+12) is that I am now still trying to make sure I drink more water (just for my good health). Trying to improve some of my bad life habits.

I do believe if people experience headaches or any noticeable sides, they will be short lived and well within tolerance, and flooding with water will help. Dilution is the solution to pollution. It should be a very easy ride for you. We had a couple guys on sof/vel (tkflex36 and webtomass) and they honestly could not discern anything they could attribute to being a side!!

Happy for you! C. (OMG - Ruby RED!!!!! You too! YAYYYYY! I'll write to you over in Club ZERO!!!)

Phoenix 17 I'm right behind you  I will be getting the Epclusa this evening, and will start tomorrow...I suppose I could start this evening lol   I've read the threads and haven't seen any answer to a preferred time (morning/night) to take it. I may have missed it tho. Have you decided?

R

Thanks Canuck! I should be getting it today! I think 7pm will be the best from what i have heard others say. I have a feeling they will just give me one bottle for now. I am very excited and nervous. Mostly excited! I can already feel the hep c leaving my body.   Well, I will be soon.

I appreciate your support! You make me laugh, and knowing that you ( and everyone here) understand, makes a world of difference.

Tuesday is now my favorite day of the week! 

Phoenix,

I can't believe you get to start your Epclusa tomorrow!! Happy Epclusa Day (day one) on Tuesday!. You're lucky gal, and I am very happy for you. What time of day did you decide upon, to tuck into your daily feast of sof/vel?? Know the feeling ... of scary and exciting and relieving, all at the same time! What a nice day Tuesday is! Did they ship you just one bottle to start - 28 pills?  C.

Liz,

EPCLUSA = SVR for all genotypes! When you're ready to start a new thread, we'll be ready to follow all the exciting progress. This is a fabulous protocol!

Hi Phoenix,

How ya doing?

I was trying to scroll down to see if you knew your sub-type. You are a GT2, but did they ever indicate to you a sub-type such as GT2a or GT2b? Also, I got it figured out now, between threads (via Jane and Phils thread) that you are indeed an F2 or F2-F3 (depending on what scales you go by) as you said your fibroscan measurement was at 10 kPa? In error I had misread you as a F0 with a kPa of 3!  I posted this yesterday: Different Fibroscan Score Charts . Also, I was wondering, did I miss you posting anywhere what your LFT's were? Did you say what your ALT, AST, etc. were? Just curious. This is where that sig. line comes in handy.

I am so glad you got the approval for the Epclusa, it won't be much longer now. I so wish it was more readily available for everyone. So far I can still only see it beginning to happen in the U.S. so this was very good luck and timing for you. Thanks for letting us know you got it in Wisconsin BTW, it may just help someone else in your State (or even in another State) just how more likely it may be for them to procure it. For Epclusa pursuers I guess, so far, Alabama, Wisconsin, and Ohio is the place to be! So many people need this regime, I wish they would hurry up and roll it out everywhere! C.

 

LOL I read the rant....you reminded me of me lol  When first diagnosed in 2007, I had no idea of Hep C.  My diagnoses came from changing docs and she did a full work up.  At first she told me that I had recently came in contact with Hep C but according to my numbers I had fought it off, she said I was very lucky.   After my head stopped spinning the questions started spewing from my mouth, what, how, what now.  Thankfully I was sent to another doctor where a viral load test was done only to find out there it was in full force.  I was then informed a lot of docs sadly do not know how to read these tests let alone know enough to send for a viral load blood test.  ( I pray that's not the case this many years later) 

Oh yes the waiting for this result and that appointment, all the while the fear was growing each day.  And that is what it was in a nutshell for me, fear!  From 2007-2010 the roller coaster ride was crazy and the more information I acquired from groups and the medical professionals, the horrible liver biospsy and the multitude of blood tests, without any investigation running on over whelming fear,  I jumped into the riba/interferon pool.  (we all know at that time there weren't any other drugs to really investigate)

Well the rest is history and now I find myself waiting again lol.  The best thing this time,  I am not letting fear run me this time around.

I can honestly say, I would have never thought I would giggle reading your rant on waiting or even being able to giggle at my own.

Thanks....I needed that!

Canuck wrote:

---

Hi Phoenix,

Welcome from me, although you probably already feel a little at home here being that you have been reading for a little while.

Glad you found this place, I sure was glad to find this community of friends!

I am sorry for your troubles, it is a life disturbing event to realize you have HCV, and must deal with it. But as the others have said - you have chosen the right time to get cured of it.

Wow, I cannot believe how lucky you are to have a family doc like that "that she went crazy ordering tests for you" and that you were able to find out you had HCV in such a relatively short time (no matter what a shock it is to a person to gain this knowledge, it is thee critical step, to know, so you can fix it). I give her full credit for being thorough!! And to you, for presenting yourself to her with health issues in the first place, in order for any of it to happen! 

Double lucky you are, as she was able to get you in to see a specialist in such a short time frame!! Really impressive, as is having other bloodwork already done, and a fibroscan result so soon! 

Just super! This is how it SHOULD be. I do hope you get any final assessments done and your drug regime of choice in short order.

I know it is of little comfort, while waiting and dealing with the inner turmoil, for someone to say to you "how lucky" you are, it was said to me too, when I was told I did rather well get to treatment only about 8 months after diagnosis!! So many have so unfairly been kept waiting, it is a horrid state to be in, and this is an event that occurs very unevenly. I just love to hear that you have accomplished so much already. You are doing a very good job, and you should try to feel good about that. It makes the waiting just a wee bit easier (kind of) if you feel like you have done everything you possibly can.

I hear ya, when you said to Tiger, I can't wait to be where you are!

It will happen, and you will feel better about things.

Hope you soon join the Epclusa crowd.  C.

 

-- Edited by Canuck on Tuesday 30th of August 2016 03:05:58 AM

---

I agree, that doctors should be able to get their patients help as quickly as they can. Unfortunately that's not the case. I am lucky to have a doctor that is on top of things. What helped is that the hep doc's office is in a hospital near where I live, so it was easy to get everything done quick.

I am dealing with this pretty well. I have had this so long that it will be weird to feel good again!

I hope to get Epclusa too. Thanks!

Liz

 

 

  

OK! 

Thought ya'd never ask (hee hee) ... so, fer what's it's worth ... take it with a grain of salt

 Waiting, waiting, waiting 

C.

I would like to hear the rant Canuck!

Greetings and welcome to the family here.

I can't help but notice your Avatar. 1st Quarter.

As you travel through the treatment period I will be interested to see if you make changes to the phase. If so, you will be at a waxing crescent before you know it and then on to the 1st Quarter of a whole new life.

Man I just went back and read that and believe a second cup of coffee is in order LOL.

 

Welcome!

JimmyK

Hi RC - Thanks for the encouragement! I do agree with you that in a way I do feel lucky to have found this out now when the medication is so good. Believe it or not I was kind of relieved to find out that my fibroscan was a 3. I know that sounds crazy, but it's a better chance to get the meds I want. 

Hi Liz,

yes we can all relate to the head spin of horror. I am like RC and although I was told I had non specific hepatitus when I was 21, I just didnt want to find out more. Not even when the blood bank called to say I had Hep C when I was 44. There was no cure in that as a single parent I couldn't afford to just take year off work coping with side effects of interferon and ribaviran. besides I loved drinking too much. 

Anyway i was forced to find out more last year when my liver finally became decompensated. like you I have genome type 2 which is supposed to be the one most easily treated. I have only found out that the virus has gone 12 weeks EOT. It is amazing. Something hanging over my head for forty something years has finally gone. I hope that with no alcohol and some exercise my liver will slowly improve. The really astounding part for me is that I have lived with depression and anxiety for my entire adult life and now, occasionally I have these jolts of joy - I suspect other people consider them normal. For me, they are a miracle.

Come and join us on this path. Try not to worry as your doctor sorts treatment for you. 

Cut yourself some slack. 

Syd

Hi Phoenix,

Welcome from me, although you probably already feel a little at home here being that you have been reading for a little while.

Glad you found this place, I sure was glad to find this community of friends!

I am sorry for your troubles, it is a life disturbing event to realize you have HCV, and must deal with it. But as the others have said - you have chosen the right time to get cured of it.

Wow, I cannot believe how lucky you are to have a family doc like that "that she went crazy ordering tests for you" and that you were able to find out you had HCV in such a relatively short time (no matter what a shock it is to a person to gain this knowledge, it is thee critical step, to know, so you can fix it). I give her full credit for being thorough!! And to you, for presenting yourself to her with health issues in the first place, in order for any of it to happen! 

Double lucky you are, as she was able to get you in to see a specialist in such a short time frame!! Really impressive, as is having other bloodwork already done, and a fibroscan result so soon! 

Just super! This is how it SHOULD be. I do hope you get any final assessments done and your drug regime of choice in short order.

I know it is of little comfort, while waiting and dealing with the inner turmoil, for someone to say to you "how lucky" you are, it was said to me too, when I was told I did rather well get to treatment only about 8 months after diagnosis!! So many have so unfairly been kept waiting, it is a horrid state to be in, and this is an event that occurs very unevenly. I just love to hear that you have accomplished so much already. You are doing a very good job, and you should try to feel good about that. It makes the waiting just a wee bit easier (kind of) if you feel like you have done everything you possibly can.

I hear ya, when you said to Tiger, I can't wait to be where you are!

It will happen, and you will feel better about things.

Hope you soon join the Epclusa crowd.  C.

 

-- Edited by Canuck on Tuesday 30th of August 2016 03:05:58 AM

Hi Liz, I got my bad news just a week before you did and am currently trying to get my fibroscan scheduled. I initially had a liver ultrasound and my doctor felt everything looked very good with no need for further testing. However, my insurance company finally got around to telling my doc that they need a fibroscan to approve treatment. The fibroscan folks said today that they haven't gotten orders from my doc's office so they can't schedule me even though I know my doctor's office faxed everything already. So I guess I'm back on the telephone carousel tomorrow.

I know some people wait years for treatment, but I am feeling all anxious that things are dragging. I can picture the virus eating away at my liver even though I know it's way too early to worry. I acquired the virus quite recently - just a year or two ago.

I hear you about getting used to drinking lots of water! I am really working on that because I have a bad habit of ignoring thirst sensations. I know I definitely can't do that when I start treatment, and it's an unhealthy thing to do anyway.

Welcome to the group; these are nice, knowledgeable, and supportive folks, and I am very glad I found them.

Hi Liz,

Welcome! So glad you've found your way to the forum. You'll meet some nice people along the way. 

This is a trying time and we all know right where your head is. Trust me, it does get better once you realize this is the best time we have ever seen for beating this. There are so many here that went through the old treatments and like myself, I'm blown away by the effectiveness of these new drugs. Epclusa w/wo Vox is one of those game changers. 

Keep us informed of your progress. You have had a look around already, if there is any information I can help you find, let me know. Relax the best you can and look forward to success! You'll be fine, I'm sure of it... 

Thanks Tiger- I can't wait to be where you are now! Congrats.