Hep C Discussion Forum

Tig · Admin

RE: 1/15/19 Day 1 begins tomorrow EPCLUSA Journey

Hoodietree · Senior Member

I drank a full gallon (128 ounces!) every day and never got any headaches or anything. But truth be told the fatigue and anxiety were the worst side effects and they were never helped by drinking a gallon a day.

I did have a little mishap in the beginning where I thought a gallon was 64 oz (duh) but I corrected that within a few days of starting treatment IIRC.

These days Im probably drinking a Hoodie Gallon of water a day. That would be 64 oz

-- Edited by Hoodietree on Thursday 14th of February 2019 08:49:34 PM

lamassu · Senior Member

Observer wrote:
Yup consuming a lot of water seems to be an insiders trick. I am so grateful to this forum for promoting that habit.
When I was on treatment, I found that when I forgot, I would get a headache and drinking water would fix it right away.
i still drink a lot of water. And I still think it helps me feel better.
As to timing your pill...HCV is a clever, determined, mutating virus...youve got it on the run so dont give a chance.
I had alarms set on my phone for 15 minutes before and for my pill times, so I could get home from a walk, and/or eat.......every 12 hours (I was on twice daily)
i named my alarm....Eat, Pill, Heal

Based on my experience with a gallon of water a day minimizing my side effects my gastroenterologist told me he is now recommending the same to his patients on DAAs and is keeping notes, not a formal study but he sees no harm in staying very well hydrated and will also mention to his colleagues. I still drink about half to two thirds of a gallon of water a day.

tanner · Senior Member

Observer, great mantra!

5-1-18 · Guru

aweee . 'eat heal pill'

Observer · Guru

Yup consuming a lot of water seems to be an insiders trick. I am so grateful to this forum for promoting that habit.

When I was on treatment, I found that when I forgot, I would get a headache and drinking water would fix it right away.

i still drink a lot of water. And I still think it helps me feel better.

As to timing your pill...HCV is a clever, determined, mutating virus...youve got it on the run so dont give a chance.

I had alarms set on my phone for 15 minutes before and for my pill times, so I could get home from a walk, and/or eat.......every 12 hours (I was on twice daily)

i named my alarm....Eat, Pill, Heal

smile

tanner · Senior Member

Cheddy - got it!

Cheddy · Moderator

Tanner,

Yes you are posting in On Treatment. It's just easier to follow if it's a thread you started. For example: Harvoni Beans and Me was started by Iris when she was on treatment. 1/15/19 Day 1 begins tomorrow was started by Kat. Whatever title you start, we want to be able to easily know that we are following you. Example: Tanner's Epclusa Journey, or The Tanner Train, or Epclusa Underway or....

DAA is an abbreviation for Direct Acting Antivirals. In this case, Epclusa is directly acting on the the reproductive cycle of the HCV virus. Birth control for dragons, if you will.

I searched Abbreviations above. Mallani's version is extensive.

Isn't it odd that the docs and the leaflet don't say anything about water (and more)? I guess they were never actually on treatment and/or it's not part of the research and development. That's why I came here - WAY more hands on experience and a lot of heart.

I hope you have a good day today. You're adding a powerful drug to your arsenal so there will likely be varying effects. I'm glad you are diligent.

Cheers,

Cheddy

tanner · Senior Member

Cheddy wrote:
Tanner,
Well, you hit the "Everybody's Different" button. The main thing is to take it at the same time every day. Some people go with nights to sleep through some side effects, if you have any. Others are kept awake. I think it depends on the particular medication as well. Some people set an alarm to be precise. Changing the time is tricky though, as you have to make the change incrementally.
When I was taking sovaldi, I was told to take it with a little fat so I went with avocado on my toast. Tig and Canuck will probably have some "Science Guy" information to add or you can search the topic here on the site.
Tylenol is not a liver's best friend but I think that's what I used as needed. I would check with the pharmaceutical company on that. What did your hep specialist say about your DAAs and your other medications?
64 oz of water is the minimum you want to consume daily. You can add a splash of juice or or a small amount of flavored electrolytes to give some flavor if it helps. It does cut down on the side effects, especially headaches.

On another note, you have advanced to the On Treatment section so you can to start your a new thread there. I don't know what happened to Kat.
Thanks for the update. You'll find your groove in no time.

-- Edited by Cheddy on Sunday 10th of February 2019 02:37:09 PM

Thanks for the reply Cheddy.

Same time every day. No window? Does 8 AM or 8:15 AM make a difference? If so I will set an alarm. I did start in the morning the other day. It was difficult, though, to fall asleep even though it was 15 hours later.

DAAs: I read your post below but in a nutshell, is it other meds? I just posted a new subject "Supplements." (I still don't know all the lingo.)

Tylenol: started to feel a small headache this AM. Ignored it. I will only take the Tylenol if it's unbearable.

Water: I drink plain water every day (usually 2 or 3 20 oz. Camelbacks a day) so I can up that to 4. (80 oz.) I'm okay with flavorless.

I thought I was posting in the "on treatment" section. All the threads like day 1 begins tomorrow Epclusa journey, (what I'm on right now?), all aboard the vesovi train, Lil started Harvoni today, harvoni beans and me, etc.

Thanks to all about the water info. Liver specialist never said anything about it and neither does the patient leaflet that came with the drug.

-- Edited by tanner on Monday 11th of February 2019 12:37:23 PM

Canuck · Guru

Ched,

That post was kinda geared a bit to a person (who had in the distant past) been dosing herself with baking soda water while on Harvoni, then she was later on Mav as a re-treatment, so the info may appear a little lopsided. Not that many people dose themselves with baking soda water, and lots already know not to consume anything that might have an effect with their DAA treatment. The bottom line for taking any of these differing DAA's is going by what your doc says, and by what it says in the fineprint of your drug monograph (inserted in the drug package).

Tanner,

Sounds like a good decision (taking dose with breakfast) as this was your most consistently reliable (same time every day) meal time. I had to choose lunch for my dosings for similar "consistency" reasons and for reasons related to being in my trial.

Like the monograph says you can take Epclusa with or without food, but I would always take my epclusa with a mod. fat content meal, just because it may be easier on the stomache and aid in absorption of the drugs - there are monograph references to greater absorption with food, although the difference is not considered significant. Epclusa Monograph

64 oz is only about a 1/2 gal - I would strive toward drinking a gal per day - you will hear differing opinions, reasonings and advice on this - experiment and then drink LOTS, more than you might think you need! I had sides (such a headaches for one) that were prevented or helped by making sure my water intake was up to par. Water intake was very important to me in how i felt (in several ways).

Tylenol? Bottom line is to go by what YOUR doc told you to do. Perhaps drinking lots of water will help prevent any headaches you might otherwise get? - so, perhaps no Tylenol (or whatever) will even be required! : )

I am glad you mentioned your anti-seizure drugs, as i was asking about that topic of you prior. What are you on, how much and how often (if you don't mind me asking) and do you have to take more when you have had any recent seizure activity? - I was concerned about your 2 seizures of late while you were stressed waiting to start, and wondering if you have to address these differently than just taking the standard seizure-control therapy?

I am so glad you have had your start. All is going in the right direction now. : ) C.

Cheddy · Moderator

I'm copying this from Canuck's post entitled DAAs and Absorption.

RE: About DAA Absorption	Permalink Reply Quote More

Further to the original link (first posted below) ... "About DAA Absorption" (acid/alklaine balance, baking soda use, etc.) ... If you read the monographs for many of the DAA's, you will find similarities in them (whether it is Harvoni, Epclusa, Vosevi or Mav) in that various "acid reducers" PPI's can be contraindicated for their potential negative interaction with DAA's, while you are on the DAA's. H2 antagonists and many other things that affect/reduce acid (increase your gastic ph) have to be taken into careful consideration so as not to intefere with the DAA absorption - whether it be a simple as taking the DAA as recommended with a meal, or, not taking baking soda water dosing while you are on DAA's, all has to be taken into careful consideration. The Mav monograph (like Vosevi) directs you to take the dose with a meal for good reason. Starting off with the right acid/alkaline environment for the drugs to be able to be liberated and absorbed. That's my take on it anyway. The link/post below was just trying to highlight how important it is to discuss with your doc all the other things you will be wanting to consume, before you start DAA's, that's all ... Here are a couple more tidbits, "Catie" is a well known group who wish to advise folk to consider what things may affect DAA absorption ... Excerpted from Catie: When Harvoni is taken with the following medications it could potentially cause significant drug interactions: · antacids or buffered medications · medication to treat indigestion, heartburn or ulcers, such as nizatidine (Axid), famotidine (Pepcid AC, Peptic Guard), ranitidine (Zantac), esomeprazole (Nexium), lansoprazole (Prevacid), omeprazole (Losec) and pantoprazole (Pantoloc) · Talk to your nurse, doctor and pharmacist if you are taking any of these medicines. One way to manage drug interactions is to make sure that your doctor and pharmacist know about everything you are taking, including prescription drugs, over-the-counter drugs, street drugs, herbal medications, supplements or anything else. If you have more than one doctor or pharmacist, it is possible for drug interactions to get missed. If more than one doctor is writing prescriptions for you, let each one know about everything you are taking. If possible, use the same pharmacy for all your prescriptions. Harvoni monograph excerpt: Acid Reducing Agents: Antacids (eg, aluminum and magnesium hydroxide) H2-receptor antagonists: (eg, famotidine) Proton-pump inhibitors: (eg, omeprazole) Effect on Concentration - reduces ledipasvir Ledipasvir solubility decreases as pH increases. Drugs that increase gastric pH are expected to decrease concentration of ledipasvir. It is recommended to separate antacid and HARVONI administration by 4 hours. H2-receptor antagonists may be administered simultaneously with or 12 hours apart from HARVONI at a dose that does not exceed doses comparable to famotidine 40 mg twice daily. Proton-pump inhibitor doses comparable to omeprazole 20 mg can be administered simultaneously with HARVONI. Proton-pump inhibitors should not be taken before HARVONI. In the "About DAA Absorption" link below, info from MAV was used, to highlight the importance of taking a (mod to high fat) meal with MAV dosings, and what effect the food has, when taken with the MAV dose. How you will absorb the dose of MAV (in the company of a meal and the right acid/alkaline condition that that meal sets up). That's my take on it anyway. C.

Cheddy · Moderator

Tanner,

Well, you hit the "Everybody's Different" button. The main thing is to take it at the same time every day. Some people go with nights to sleep through some side effects, if you have any. Others are kept awake. I think it depends on the particular medication as well. Some people set an alarm to be precise. Changing the time is tricky though, as you have to make the change incrementally.

When I was taking sovaldi, I was told to take it with a little fat so I went with avocado on my toast. Tig and Canuck will probably have some "Science Guy" information to add or you can search the topic here on the site.

Tylenol is not a liver's best friend but I think that's what I used as needed. I would check with the pharmaceutical company on that. What did your hep specialist say about your DAAs and your other medications?

64 oz of water is the minimum you want to consume daily. You can add a splash of juice or or a small amount of flavored electrolytes to give some flavor if it helps. It does cut down on the side effects, especially headaches.

On another note, you have advanced to the On Treatment section so you can to start your a new thread there. I don't know what happened to Kat.

Thanks for the update. You'll find your groove in no time.

-- Edited by Cheddy on Sunday 10th of February 2019 02:37:09 PM

tanner · Senior Member

Hi C, thanks for asking. So far so good. A little fogginess but nothing I can't handle cuz I'm frequently foggy with the anti-seizure meds. I sure would have liked to know what meal you all took your pill with. I chose breakfast cuz it's the most consistent time. Sometimes dinner is @ 6:30 or 7:00 or 7:30 or 8:00 so that was just a bit too much variation for me to feel it should be at the same time every day.

Is drinking 64 oz. of water a day good enough?

Another question for ALL - I was told for a headache, or joint pain, only use Tylenol. (I get a lot of SI joint pain.) Then you go online and it says don't use that; use ibuprofen. Then it says there is conflicting info, but a liver specialist knows best, and it should be only Tylenol. Aaauuughghghgh!

All our welcome to add their own 2 cents.

Canuck · Guru

Tanner,

So, how did day one go? : ) C.

Canuck · Guru

Hey Tanner,

Happy day one tomorrow! What time of day/meal did you decide to take your dose?

Ahoy Kat,

I also wonder where you got to? You'll be coming up on your week 4 soon! Are your labs booked?

DandyI,

Nice you have other Epclusians to keep you company here.

You need a signature line ... this was a suggested one from one of your old posts ...

... F, 62 yo, Dx 1995, GT ___. Pre-treatment VL ___, ALT/AST ___. Fatigue, mood and GI troubles. Recent U/S done - some fatty liver - no cirrhosis. Fscore ___ ..., maybe it you could fill in your GT and any other important bits, that would be good. : ) C.

I'm not sure if any of you have noticed, read or posted on the following thread ... Epcluser's Corner , it is a is common Epclusa thread which quite a few of us doing epclusa have posted on... to post on the 'Epcluser's Corner" thread may be another option for all or some of you who may opt to post there, or you might mutually agree to continue to share a thread here, or you may opt to create an "on-treatment" thread that is uniquely yours, created and titled by you, which would be all your own.

Tig · Admin

What happened to Kat? She started this thread and then disappeared! How are you coming along, Kat? Hopefully you’re well and remembering to hydrate. Now is the time it’s most important! Check in when you can.

lamassu · Senior Member

Hi tanner,

So happy for you that you are finally starting and what a deal you got with that generic! You have the honor of being the first patient on the forum taking the US generic Epclusa. Let us know how you feel; if you have side effects fatigue is the most common one. Here's hoping you have none at all!

-- Edited by lamassu on Friday 8th of February 2019 09:33:04 PM

tanner · Senior Member

Canuck wrote:
Congrats on day one kat!
The drug company "says" you do NOT have to take epclusa with food, but that YOU MAY take epclusa with food.
I (for multiple good reasons) WOULD ALWAYS opt to take epclusa with food, and ideally, with a meal that had a moderate fat content - probably like a normal breakfast, lunch or supper (or perhaps at least at minimum a largish snack of some sort that contained some fat).
Generally, taking meds "with food" can make it easier on the stomache, and the food can ease and aid drug absorption, so, I would always opt to take my epclusa WITH food (unless something else told me I should not be).
Sounds like you are going to be taking your epclusa with a breakfast or/brunch/lunch (an AM meal)? Just remember, which ever meal you have chosen to take the pill with, stick with that same time every day, make sure you take the pill and the meal at the same time each day.
Good you are heeding the bit about the importance of increasing your water intake while on epclusa, just remember ... you can drink a lot of water but it can be over a 24 hour period, you do not have to "drown yourself" completely at pill time, it might actually feel a little uncomfortable especially if you have just had your pill with a full meal are then are also trying to down a huge volume of water all at the same sitting. Your increased water intake (while you are on epclusa therapy) can be spread out over the day. You can drink more heavily, hours before and hours after taking your pill as well, and not just at pill time.
Let us know how things progress and how you are feeling. Yay, yer doing it! : ) C.

Canuck, thank you for this info. It's helpful.

5-1-18 · Guru

so awesome tanner w00t:

after all you went thru to get them i know you will love each little pill with all your heart as they work their magic and get you cured

5

tanner · Senior Member

Lamassu - my copay ended up being $2269 for all 84 days. It's the generic.

tanner · Senior Member

Dandy and Kat - I'm here to join you now! Just picked it up - I'm starting tomorrow. smile

-- Edited by tanner on Friday 8th of February 2019 05:05:08 PM

5-1-18 · Guru

dandy!!

keep us posted as to how your journey is going, we will all be here for you

Observer · Guru

Hey dandy,

great that youre starting treatment and that youre drinking lots of water and juice to help avoid side effects and to flush the virus and meds through your system.

If you start a thread in the on treatment section, we can focus on you,your journey etc... smile

SeeTheLight · Senior Member

Hey Tanner, Here is where Tanner has been posting. I'm sure she will start an on treatment thread vehttps://hepcfriends.activeboard.com/t61707886/waiting-waiting-waiting

It will be lovely for you both to have somebody traveling with you.

SeeTheLight · Senior Member

Thats fantastic Dandy. Your the third person just started or about to start treatment today, so you will have others going through similar things. I would suggest you start your own on treatment thread now and we can all follow your journey. I was treated with Epclusa last year and achieved SVR in Oct. I will look forward to following your journey,

Dandyindeed · Member

Started Epclusa yesterday 2/6/19. Started drinking diluted grape juice to enhance water compliance. Sure wish this thread was more active with people to talk to.

SeeTheLight · Senior Member

Hi Kat, Congratulations on starting treatment. All the best with your journey. I did my 12 weeks Epclusa between May and July. I hope your journey will be easy. Its a wonderful DAA and we are so lucky to be receiving it. I hope your journey will be easy. Mine was not too difficult at all. I reached SVR 12 in October and just so thankful to have received this wonderful drug and now be cured. Go kill your dragon!!!!

Tig · Admin

Hi Kat,

Good luck on your journey! Keep pounding the water, it’s one of your best friends during treatment, us too smile Lots of great friends here to help guide you through. You WILL be successful. It’s how we roll around here!

katpanics · Newbie

Thank you for the information. So far day 2 went well! I'm not feeling very tired or nauseous as of yet. I've been spacing out the water also!

Canuck · Guru

Congrats on day one kat!

The drug company "says" you do NOT have to take epclusa with food, but that YOU MAY take epclusa with food.

I (for multiple good reasons) WOULD ALWAYS opt to take epclusa with food, and ideally, with a meal that had a moderate fat content - probably like a normal breakfast, lunch or supper (or perhaps at least at minimum a largish snack of some sort that contained some fat).

Generally, taking meds "with food" can make it easier on the stomache, and the food can ease and aid drug absorption, so, I would always opt to take my epclusa WITH food (unless something else told me I should not be).

Sounds like you are going to be taking your epclusa with a breakfast or/brunch/lunch (an AM meal)? Just remember, which ever meal you have chosen to take the pill with, stick with that same time every day, make sure you take the pill and the meal at the same time each day.

Good you are heeding the bit about the importance of increasing your water intake while on epclusa, just remember ... you can drink a lot of water but it can be over a 24 hour period, you do not have to "drown yourself" completely at pill time, it might actually feel a little uncomfortable especially if you have just had your pill with a full meal are then are also trying to down a huge volume of water all at the same sitting. Your increased water intake (while you are on epclusa therapy) can be spread out over the day. You can drink more heavily, hours before and hours after taking your pill as well, and not just at pill time.

Let us know how things progress and how you are feeling. Yay, yer doing it! : ) C.

Iris Dragonfly · Guru

Congratulations on starting Treatment aww we'll be keeping an eye on your progress.

BB, Iris

katpanics · Newbie

Thank you for the support. Today was a good day. Took meds first thing in the morning without food but plenty of water. Was feeling dizzy and symptoms went away after eating. I'll be sure to take the meds with food and water tomorrow and see if that helps. So far I feel good.

Cheddy · Moderator

Good for you Kat. You're on your way. Let us know how you are feeling. Drink lots of water, I mean LOTS of water. We're here to help you, so let us know how it

Welcome aboard.

Canuck · Guru

Hey katp,

Let us know how today (day one) on epclusa goes for you. : ) C.

lilbrownie · Member

Kat, I'm happy for you, I started just seven days ago on Harvoni so I will be on a similar journey with you in spirit. Take time for yourself, drink lots of water, and know that there are many of us rooting for you!

We can do this !!

tanner · Senior Member

lamassu wrote:
tanner,
If you can get three months of Epclusa for $1387 per month that is a deal. My three months cost Medicare $75,000 and I had to pay $6000 out of pocket. The specialty pharmacy was in my town so I drove there once a month to pick up the Epclusa rather than getting it sent FedEx.

Lamassu, I agree!

My Medicare premium is $500 monthly for an annual total of $6000, so we'll see how this works out. Don't know yet if I will have any other charges. I just know if Anthem's copay for the month supply is $1387 using Avcreedo/CVS is an incredible deal. I'm glad the Cleveland Clinic told me to call Anthem to see if I could get it cheaper through one of Anthem's preferred. It would have cost $9000 for the 12 weeks.

But we'd pay anything, right?

lamassu · Senior Member

tanner,

If you can get three months of Epclusa for $1387 per month that is a deal. My three months cost Medicare $75,000 and I had to pay $6000 out of pocket. The specialty pharmacy was in my town so I drove there once a month to pick up the Epclusa rather than getting it sent FedEx.

tanner · Senior Member

katpanics wrote:
Not sure how the next week will go as I'm starting Epclusa tomorrow. Been a life long journey with Hep C received a BT at birth. I found out I had Hep C in college back in '93. Looking forward to clearing my system and move on from this virus which has wreaked havoc on my body in many different ways over the years.

So nice to meet you Kat, and welcome to the forum if this is your first time on here. This is a good bunch of people. Very supportive and encouraging.

tanner · Senior Member

katpanics wrote:
Not sure how the next week will go as I'm starting Epclusa tomorrow. Been a life long journey with Hep C received a BT at birth. I found out I had Hep C in college back in '93. Looking forward to clearing my system and move on from this virus which has wreaked havoc on my body in many different ways over the years.

Very happy for you, Kat. I thought I'd be on it too, by this time but Cleveland Clinic wants a $3000 copay per month, totaling $9000. My insurance company said to submit it to one of their own preferred pharmacies (the one they suggest is $1387 per month) so it's moving its way through the system at this point. Please keep us posted on how you feel and any experiences you're having.

5-1-18 · Guru

great that you started your thread kat.

rest, water and paying attention to how you feel

and on the start of treatment.

when is your eot date?

i worked, so did a few others, some are retired but we all managed our treatments so we could feel the cure

please blog here on your thread so we can be with you on your journey.

5

Ashenvale · Member

Welcome katpanics - and congrats on beginning the treatment, hope your sides will be minimal and wishing you a speedy recovery from hep.

Observer · Guru

Great that youre starting treatment. Welcome to dragon slaying. smile

Do drink a lot of water and you will avoid or minimize side effects.

Canuck · Guru

Hi katP,

Welcome here.

Wonderful you got epclusa and will start tomorrow. Drink LOTS of WATER all day long please. Epclusa is an excellent drug choice for your GT2 (an excellent drug choice for any GT really)!

Powerfully effective epclusa is. You will soon be free of this virus that you have been subjected to for such a long time.

Nice you have done up some bio info, when you get a chance, you could also provide a signature line as well, and that will assist in conversations/show basic info at a glance.

This part of your bio info I mostly got ... like how "BT" stands for blood transfusion?, and, that you are 44 years of age and that you have had HCV since birth?, ... " GT 2. 44yrs, BT at Birth. VL70million " ...

... but this part of your bio info i could not really figure it all out (for sure) ... could you elaborate a bit more on these abbreviations? ... "LB 6/2011 GD 0 ST1 LB 6/98 GD 1 ST1" ...

I guessed "LB" means liver biopsy? so ... you have had 2 biopsies, one in 1998 and another in 2011? Does "ST1" mean "stage one" (as a biopsy result)? And what does GD 0 and GD 1 stand for?? Maybe the GD ones should be "spelled out in full", for clarity, in your sig. line?

Could i suggest a sig. line something like this ... "Female, 44 years of age, HCV since birth from blood transfusion. Dx 1993. Liver biopsy 1998 - results GD 0?, stage 1. Liver biopsy 2011 - results GD 1?, stage 1. LFT's ______? GT2. VL 70 million. Epclusa 12 weeks SOT Jan 15, 2019 - EOT Apr 9, 2019.

Have you had any recent fibroscans? Have you had a recent abd. ultrasounds? Do you have any recent pre-treatment LFT's (like some ALT's or AST's)?Did they finish checking your hep a and b immunity level/status?

Please do fire away if you have any questions we can help with.

Let us know how you are feeling about the start of your treatment, I hope you are feeling very good about getting the epclusa - it's very good stuff! C.

Hoodietree · Senior Member

Best wishes Kat!

katpanics · Newbie

smile Not sure how the next week will go as I'm starting Epclusa tomorrow. Been a life long journey with Hep C received a BT at birth. I found out I had Hep C in college back in '93. Looking forward to clearing my system and move on from this virus which has wreaked havoc on my body in many different ways over the years.

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