I just started a new thread in the on treatment section. We must of been on the same wavelength!
I just downed a liter of water in the last hour. The bathroom and I are going to be good friends. Small price to pay.
Tig said
Sep 13, 2016
Hi Liz,
Yeah!! Congrats on starting the journey to Hep C freedom! You're going to do great. Eat right and maintain a good hydration goal everyday. 3-4 liters of water per day, faithfully! It will keep the side effects at bay, if you have any at all.
Now that you're on treatment, feel free to start a new thread in the On Treatment section. You're no longer a New Member, you've graduated. WOOT! Any time you graduate around here, it's a good thing! We're looking forward to walking the tracks together. Lets do this!!
Phoenix17 said
Sep 13, 2016
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 !
Cinnamon Girl said
Sep 13, 2016
Hi Phoenix, how exciting for you, and I have to say it is for us too!!
I`m so pleased to see that you and Ruby Red both getting started on this wonderful treatment together, it`s the best there is and I`m sure you`ll both sail through this!
Looking forward to following your progress reports, best of luck!
Canuck said
Sep 13, 2016
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!!!)
Tig said
Sep 13, 2016
Hi Liz,
WOOHOO!!! Today's HCV D Day...the end of your Dragon charging you rent to live in and destroy your liver! Tuesday will definitely be a great reminder of your progress going forward. You'll be amazed at the ease of treatment and how fast it goes by. You are so fortunate to get this treatment.
Regarding the best time? That is really subjective. With any protocol you will react a little differently than the next person. That being said, each new protocol seems to deliver less in the way of side effects. You may not even have to worry about it. If you do end up wanting to change the administration time, it can be done slowly. Stay compliant and take your meds at the same time every day.
Now is a good time to eat a healthy diet and one very important thing, you need to drink at least a gallon of water per day. Some people experience headaches, insomnia on these DAA's. You can minimize those side effects by maintaining that hydration plan. We have a lot of experience here confirming the fact, remember that and it will be an easy ride.
GOOD LUCK!!!
Ruby Red said
Sep 13, 2016
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
Phoenix17 said
Sep 13, 2016
Thanks Syd! Tonight the night! So excited. Will update for sure.
Phoenix17 said
Sep 13, 2016
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!
Sydhanrahan said
Sep 13, 2016
Hi Phoenix,
i went awol for a week and am just prowling around seeing what's what. Sooo happy to hear that you start Epclusa tomorrow.
Canuck, Pablito and friends have convinced us that it's the best of the best. The least you deserve.
Keep us informed as you journey along toward a new health status and a new state of mind.
Hugs,
Syd
Canuck said
Sep 13, 2016
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.
Phoenix17 said
Sep 11, 2016
Thanks Tig! I will do that. Hopefully it will help people down the road that are looking to understand Epclusa a little better.
Tig said
Sep 11, 2016
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!
Phoenix17 said
Sep 11, 2016
Hi Canuck - I will put all my numbers in the sig line soon. Not sure what sub type I am. Can't find it in any of my test results. I will be starting Epclusa on Tuesday. I am both excited and nervous. More excited though! Because Epclusa is so new, I may start a new thread on how the treatment is going. More and more of us will be on this soon. I really hope they start approving this everywhere. It's ridiculous to have something that will change peoples lives, and not being able to get it.
Loopy Lisa - It is going to feel strange not having hcv in my body after having it for so long. 36 years! It will be a wonderful thing!
Ruby Red - The waiting is the hardest part. I am with you, I will not let the fear get to me either.
Thanks for the encouragement. It really helps!
-- Edited by Phoenix17 on Sunday 11th of September 2016 10:19:52 AM
Canuck said
Sep 11, 2016
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.
Loopy Lisa said
Sep 2, 2016
Welcome newbies,
I think we all remember our first diagnoses, that disbelief that something that only happens to other people in the news becomes our reality too. But that passes very fast. I was stuck in limbo as the new drugs were not available so I tried the old combo and regretted that, but I gave it a go. I am on my last week and a bit of sof/dak, that is even stranger. I am so comfortable on my meds, the idea they're finishing soon is like whoa, really, 3 months, is it enough? You'll be fine ladies, these meds are fantastic and it will become when I had Hep C, which is also kind of weird as you get so used to having it. The scans and tests we all get give a good indication idea of our overall health that most people don't get when they are healthy. But knowledge is power, and with that we have the ability to do something about it. Happy days are on there way. :D
Ruby Red said
Aug 31, 2016
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!
Phoenix17 said
Aug 30, 2016
Canuck wrote:
OK!
Thought ya'd never ask (hee hee) ... so, fer what's it's worth ... take it with a grain of salt
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
Phoenix17 said
Aug 30, 2016
Shadowfax wrote:
Phoenix17 wrote:
Thanks Tig and Tiger. I am (not so patiently) waiting for approval. In the meantime i am eating healthier, and getting used to drinking lot's of water. I do feel better now that I can talk to people who understand. Thanks!
Liz
Welcome and we are so glad you found us. We will be be here from start to finish and after and hoping that your wait is not too long but we have all been through the waiting game so we just go with the flow. Talking about flow, lol and regarding the water, you will get used to it and by the end of treatment there will be an imprint from your favorite place to relax marking the path to the bathroom with all the water we drink on treatment. It is worth it. It helps so much and is the best possible thing for side effects but I digress ....
I am practicing drinking lots of water. I may have to move into the bathroom. Small price to pay to get better!
Thanks Shadowfax!
-- Edited by Phoenix17 on Tuesday 30th of August 2016 07:43:12 PM
Canuck said
Aug 30, 2016
OK!
Thought ya'd never ask (hee hee) ... so, fer what's it's worth ... take it with a grain of salt
JimmyK - That is a good idea! I am a photographer and took that photo plus the rest of the eclipse. I will have to change it as time goes on!
Syd - You sound like me. I am taking meds for anxiety right now. It will be interesting to see how I feel once I start medication. I am glad it got better for you. I am also a single parent. There is no way I could handle the harsh treatment of just a few years ago. Feeling like this seems normal to me as I have had it a long time. You are right, having the virus out of your system is a miracle. I am trying to be patient. : )
Phoenix17 said
Aug 30, 2016
I would like to hear the rant Canuck!
Shadowfax said
Aug 30, 2016
Phoenix17 wrote:
Thanks Tig and Tiger. I am (not so patiently) waiting for approval. In the meantime i am eating healthier, and getting used to drinking lot's of water. I do feel better now that I can talk to people who understand. Thanks!
Liz
Welcome and we are so glad you found us. We will be be here from start to finish and after and hoping that your wait is not too long but we have all been through the waiting game so we just go with the flow. Talking about flow, lol and regarding the water, you will get used to it and by the end of treatment there will be an imprint from your favorite place to relax marking the path to the bathroom with all the water we drink on treatment. It is worth it. It helps so much and is the best possible thing for side effects but I digress ....
JimmyK said
Aug 30, 2016
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
Phoenix17 said
Aug 30, 2016
Canuck and Syd- I have to leave for work. Talk to you later. Thanks. You both have made me feel better this morning!
Phoenix17 said
Aug 30, 2016
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.
Phoenix17 said
Aug 30, 2016
We will get through this together Juliet! I too am not used to drinking lots of water, but it's going to be important! Since you have only had this for a few years, I am sure that your liver is pretty good. You caught this early, Yay! Hoping you get your fibroscan soon!
Sydhanrahan said
Aug 30, 2016
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
Canuck said
Aug 30, 2016
There you are RC!, I just pushed the send button and there you appeared, right before me! - like MAGIC! LIZ, listen to this guy, when he makes a promise - he keeps it! He sprinkles us all with magic stardust, now you're dusted too. RC is the epitome of patience and wisdom. Good guy to have on the end of your rope. C. hmmm, maybe I'll dredge up my waitin, waitin, waitin rant for poor Liz and Juliet in the meanwhile.
Canuck said
Aug 30, 2016
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
robertsamx said
Aug 30, 2016
Welcome Liz.
Its never too late to treat hep C. 36 years you did not know. I knew for 30+ years and hid from it. Just me and my wife. Treatment 30 years ago as you know know was brutal. It took someone with intestinal fortitude just to sign up for a really bad case of the flu for 48 months. I wasn't one of them.This is where I'm tempted to say your so lucky , that the Meds today are so good, SVR is so high.Its all true but the reality of it having a 36 year jump on you is harsh. Go at it hard and fast, kill it asap. Get the best hep Dr you can find and watch your liver closely forever. Now I know you have hep c. Now you know there are three of us pulling for you! The more you have on your side pulling for you, well you know how the game Tug of war works? Every one on this forum is pulling for you. your Goan be fine I promise you. Just ask Canuck. RC
Juliet17 said
Aug 30, 2016
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.
Phoenix17 said
Aug 29, 2016
Thanks Tig and Tiger. I am (not so patiently) waiting for approval. In the meantime i am eating healthier, and getting used to drinking lot's of water. I do feel better now that I can talk to people who understand. Thanks!
Liz
Tig said
Aug 29, 2016
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...
Tiger said
Aug 29, 2016
it will happen im on abbvie 3d it works stay strong eat healthy lots of water.
Hope you get on meds soon until then keep looking after yourself
Phoenix17 said
Aug 29, 2016
Thanks Tiger- I can't wait to be where you are now! Congrats.
Tiger said
Aug 29, 2016
Hello i only found out last Feb been on treatment for 17weeks 7to go no virus at four weeks wishing you well you can make as im.
its up to you who you tell but close family need know i feel but its you choice.
Phoenix17 said
Aug 29, 2016
I just found out that I had Hep C last month. July 20th. I am not sure the reality of the diagnosis has hit me yet. I went to my regular doctor because my ankles were a little swollen ( one more than the other) and one hurt to walk on it. She went crazy on the blood work, ordered all kinds of different things. Turns out that I was positive for hep c. Scared the you know what out of me. Went back in to talk to her a few days after I saw that I was positive. I get all my test results online. My doc is friends with a hepatologist and got me in within a week. Did more blood tests that same day, and the next week had a fibroscan (F3). Since I am Genotype 2, I asked him for Epclusa. So now I am playing the waiting game. Waiting for Ins approval.
I have figured out that I have had this for about 36 years. I am 56. I will put all the numbers in at another time.
I have been reading posts as a guest for a few weeks, and am glad I decided to become a member. I have only told my mom and my daughter so far. Not sure about anyone else as of now. It's really nice to find people to talk to who know how I am feeling.
Thanks Tig!
I just started a new thread in the on treatment section. We must of been on the same wavelength!
I just downed a liter of water in the last hour. The bathroom and I are going to be good friends.
Small price to pay.
Hi Liz,
Yeah!! Congrats on starting the journey to Hep C freedom! You're going to do great. Eat right and maintain a good hydration goal everyday. 3-4 liters of water per day, faithfully! It will keep the side effects at bay, if you have any at all.
Now that you're on treatment, feel free to start a new thread in the On Treatment section. You're no longer a New Member, you've graduated. WOOT! Any time you graduate around here, it's a good thing! We're looking forward to walking the tracks together. Lets do this!!
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 !
Hi Phoenix, how exciting for you, and I have to say it is for us too!!
I`m so pleased to see that you and Ruby Red both getting started on this wonderful treatment together, it`s the best there is and I`m sure you`ll both sail through this!
Looking forward to following your progress reports, best of luck!
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!!!)
Hi Liz,
WOOHOO!!! Today's HCV D Day...the end of your Dragon charging you rent to live in and destroy your liver! Tuesday will definitely be a great reminder of your progress going forward. You'll be amazed at the ease of treatment and how fast it goes by. You are so fortunate to get this treatment.
Regarding the best time? That is really subjective. With any protocol you will react a little differently than the next person. That being said, each new protocol seems to deliver less in the way of side effects. You may not even have to worry about it. If you do end up wanting to change the administration time, it can be done slowly. Stay compliant and take your meds at the same time every day.
Now is a good time to eat a healthy diet and one very important thing, you need to drink at least a gallon of water per day. Some people experience headaches, insomnia on these DAA's. You can minimize those side effects by maintaining that hydration plan. We have a lot of experience here confirming the fact, remember that and it will be an easy ride.
GOOD LUCK!!!
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 Syd! Tonight the night! So excited. Will update for sure.
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!
Hi Phoenix,
i went awol for a week and am just prowling around seeing what's what. Sooo happy to hear that you start Epclusa tomorrow.
Canuck, Pablito and friends have convinced us that it's the best of the best. The least you deserve.
Keep us informed as you journey along toward a new health status and a new state of mind.
Hugs,
Syd
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.
Thanks Tig! I will do that. Hopefully it will help people down the road that are looking to understand Epclusa a little better.
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 Canuck - I will put all my numbers in the sig line soon. Not sure what sub type I am. Can't find it in any of my test results. I will be starting Epclusa on Tuesday. I am both excited and nervous. More excited though! Because Epclusa is so new, I may start a new thread on how the treatment is going. More and more of us will be on this soon. I really hope they start approving this everywhere. It's ridiculous to have something that will change peoples lives, and not being able to get it.
Loopy Lisa - It is going to feel strange not having hcv in my body after having it for so long. 36 years! It will be a wonderful thing!
Ruby Red - The waiting is the hardest part. I am with you, I will not let the fear get to me either.
Thanks for the encouragement. It really helps!
-- Edited by Phoenix17 on Sunday 11th of September 2016 10:19:52 AM
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.
Welcome newbies,
I think we all remember our first diagnoses, that disbelief that something that only happens to other people in the news becomes our reality too. But that passes very fast. I was stuck in limbo as the new drugs were not available so I tried the old combo and regretted that, but I gave it a go. I am on my last week and a bit of sof/dak, that is even stranger. I am so comfortable on my meds, the idea they're finishing soon is like whoa, really, 3 months, is it enough? You'll be fine ladies, these meds are fantastic and it will become when I had Hep C, which is also kind of weird as you get so used to having it. The scans and tests we all get give a good indication idea of our overall health that most people don't get when they are healthy. But knowledge is power, and with that we have the ability to do something about it. Happy days are on there way. :D
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!
Nice!
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
I am practicing drinking lots of water. I may have to move into the bathroom. Small price to pay to get better!
Thanks Shadowfax!
-- Edited by Phoenix17 on Tuesday 30th of August 2016 07:43:12 PM
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.
JimmyK - That is a good idea! I am a photographer and took that photo plus the rest of the eclipse. I will have to change it as time goes on!
Syd - You sound like me. I am taking meds for anxiety right now. It will be interesting to see how I feel once I start medication. I am glad it got better for you. I am also a single parent. There is no way I could handle the harsh treatment of just a few years ago. Feeling like this seems normal to me as I have had it a long time. You are right, having the virus out of your system is a miracle. I am trying to be patient. : )
I would like to hear the rant Canuck!
Welcome and we are so glad you found us. We will be be here from start to finish and after and hoping that your wait is not too long but we have all been through the waiting game so we just go with the flow. Talking about flow, lol and regarding the water, you will get used to it and by the end of treatment there will be an imprint from your favorite place to relax marking the path to the bathroom with all the water we drink on treatment. It is worth it. It helps so much and is the best possible thing for side effects but I digress ....
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
Canuck and Syd- I have to leave for work. Talk to you later. Thanks. You both have made me feel better this morning!
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.
We will get through this together Juliet! I too am not used to drinking lots of water, but it's going to be important! Since you have only had this for a few years, I am sure that your liver is pretty good. You caught this early, Yay! Hoping you get your fibroscan soon!
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
There you are RC!, I just pushed the send button and there you appeared, right before me! - like MAGIC! LIZ, listen to this guy, when he makes a promise - he keeps it! He sprinkles us all with magic stardust, now you're dusted too. RC is the epitome of patience and wisdom. Good guy to have on the end of your rope.
C. hmmm, maybe I'll dredge up my waitin, waitin, waitin rant for poor Liz and Juliet in the meanwhile.
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
Welcome Liz.
Its never too late to treat hep C. 36 years you did not know. I knew for 30+ years and hid from it. Just me and my wife. Treatment 30 years ago as you know know was brutal. It took someone with intestinal fortitude just to sign up for a really bad case of the flu for 48 months. I wasn't one of them.This is where I'm tempted to say your so lucky , that the Meds today are so good, SVR is so high.Its all true but the reality of it having a 36 year jump on you is harsh. Go at it hard and fast, kill it asap. Get the best hep Dr you can find and watch your liver closely forever. Now I know you have hep c. Now you know there are three of us pulling for you! The more you have on your side pulling for you, well you know how the game Tug of war works? Every one on this forum is pulling for you. your Goan be fine I promise you. Just ask Canuck. RC
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.
Thanks Tig and Tiger. I am (not so patiently) waiting for approval. In the meantime i am eating healthier, and getting used to drinking lot's of water. I do feel better now that I can talk to people who understand. Thanks!
Liz
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...
Hope you get on meds soon until then keep looking after yourself
Thanks Tiger- I can't wait to be where you are now! Congrats.
its up to you who you tell but close family need know i feel but its you choice.
I just found out that I had Hep C last month. July 20th. I am not sure the reality of the diagnosis has hit me yet. I went to my regular doctor because my ankles were a little swollen ( one more than the other) and one hurt to walk on it. She went crazy on the blood work, ordered all kinds of different things. Turns out that I was positive for hep c. Scared the you know what out of me. Went back in to talk to her a few days after I saw that I was positive. I get all my test results online. My doc is friends with a hepatologist and got me in within a week. Did more blood tests that same day, and the next week had a fibroscan (F3). Since I am Genotype 2, I asked him for Epclusa. So now I am playing the waiting game. Waiting for Ins approval.
I have figured out that I have had this for about 36 years. I am 56. I will put all the numbers in at another time.
I have been reading posts as a guest for a few weeks, and am glad I decided to become a member. I have only told my mom and my daughter so far. Not sure about anyone else as of now. It's really nice to find people to talk to who know how I am feeling.
Looking forward to getting to know everyone!