Hep C Discussion Forum

5-1-18 · Guru

RE: Newbie 2018

Tig · Admin

Hello,

When you open that section, you’ll see a selection at the top right ( kinda sorta) that says “start a new topic”. Just decide a title that suits you and go. Then it’s your own thread and we can follow your journey. Threads like the Harvoni Train, etc., are group discussion areas and all are welcome to post there. When you start a personal thread, it’s yours and we don’t permit people changing the topic or using it as their own. It’s just a unwritten rule that we encourage.

How are you doing? Glad to hear tests are good!

GoNavy · Member

Hey Tig,

Where in the "on treatment" thread do I post. Seems to be a lot of "titles" on there.

Any-whoo been busy with Mom and doctors appointments.

I got my labs back yesterday and my numbers are looking good..

Please let me know where to post and I will continue my story later today or tomorrow.

Have a Great Weekend Everyone!!

5-1-18 · Guru

yep, pill, water and rest; getting a routine and being flexible when your body says it wants to just rest.

5

Tig · Admin

The first two or three weeks will require the most in the way of adjustments. That seems to be the period when most experience some fatigue. Keep active, but take it easy as you settle in.

Keep pounding the water! If you’re peeing all the time, good. As long as you’re drinking that gallon a day and the plumbing stays active, then you’ve earned your Water Works merit badge! See how easy it was? Even your Doggo approves, look at that tail wagging, lol!

GoNavy · Member

Hello Fellow HCV Mates,

I'm been doing little besides sweating and peeing - lol... They say your body is made mostly of water, well if that's the case I should be a twig by now.. ;)

Tig, you hit the nail on the head regarding the pillow picture. Often I am the one hanging off the bed while she is all nice a comfy.. I'll move over to the other discussion soon. Today I'm just winging it.

Canuck,

lol - ya I just put 49.5 cuz I only have 5 months and a few days to go before I hit 50. Sounds like you had an Aunt with the same personality as mine. Miss her dearly - she was a riot.

I had a fibro scan and f3 is what they stated. I did have a biopsy back in 2013 and I was at stage2. I'll look for the other numbers later and post.

Sorry so short, just tired. Will write more later.

Have a Wonderful Sunday.

Tig · Admin

Hi Swabbie Mom,

Now that you have graduated, why don’t you begin a new thread in the On Treatment section? Any title will do. It helps keeps actual treatment discussions in one area. Take a look at the section and be creative! Doodle Does Epclusa? Maybe not?? Ha, ha! It’s early, my brain isn’t awake yet...

I hope you wake up this morning bright eyed and busy tailed! Of course that could be Ms Doodle in your face, lol!

Drink, Drink, Drink!

Canuck · Guru

Hey Navy,

I've been enjoying your thread, and all the back and forths now that we have all met one another, and seeing how you are off to a really good epclusa start. biggrin

Good you are drinking and peeing up a storm.

Nice job you did on your signature line, it's always good when people can do one up quite quickly, as they really assist in our conversations over time.

I am glad your dog (who has springs instead of leg bones), cooperated for that photo! Really good shot. She is very photogenic - gives a whole new meaning to "fetching", heehee.

hahahha I had to LOL (sorry), when I saw how you wrote your age, 49 ... (and 1/2)! heehee. I remember doing that when I was a kid, my Aunt did that ALL her life, she lived to be 100 years old (even)! That's a lotta half years, or in dog years ... oh never mind. Actually, at about age 36 I started counting my age by half years, again, (backward)! - it only worked for a little while. Now the old geezers like Tig and me, the only way we can cheat is if we just honestly forget how old we are, or if we fail to update our age (from year to year) on our signature lines and bio's. heehhee I caught Tig doing that last year!

So, you mentioned some significant others ... your son, your Mom, and doggy - dog goes without sayin about being a support, but do your other family members know you are being treated? Hope they can be and are a support for you too, as I know you have and would be for them.

Aside from having a good medical team around me, my partner was a fantastic support for me, as well as all the freinds I met and made here. I hope you are already seeing that we are all here for you too.

I see you wrote 'Stage 3' - so, can you tell me if that was a "Fscore", as in a "F3" score by "fibroscan" test, which might have also shown a kPa number along with it? Or, have you had a liver biopsy done in the past which "staged" your level of fibrosis involvement, or maybe you have had blood tests, like a "fibrotest" which gave you a Fscore? We are always interested in Fscore (and lab and ultrasound) results, if and when they get done and if they get repeated over time.

Looking forward to your next post, when you can. smile C.

Tig · Admin

Your fur baby sent me a text and thanked me for all the extra water we’ve been recommending. Apparently she has decided to ask before assuming anything, but asked me if I thought the included photo would be acceptable, since you’re spending more time in the BR! Of course I’m a softy when it comes to our four legged friends, so I told her absolutely, lol! Blame me, I can take it, ha, ha! biggrin

STL makes a good point, if you can get your required intake in well ahead of bedtime, you’ll be able to hopefully cut down the sleep interruptions. It’s worth a try. When you’re in there, take a swig of water and go back to bed. It takes awhile to make it through the plumbing and may help you as you wake up. Always start your day with a full glass of water. Everyone should do that anyway.

I lost my Mom last year to Alzheimer’s. She was 91 and my Sister had her at home for the last few years. I’m proud of you for doing all you can for your Mom. It’s a full time job and you’re dealing with your own life’s issues. It’s not easy. You‘re doing a great thing for her, for you and your life is enriched by all of it. You’ll find that all of this is absolutely worth the effort. There are always days when you’ll feel like you’re gonna lose it and are at the end of your rope. My sweet Grandma always said, tie a knot in that rope and hang on. The flood will recede and you‘ll be able to walk right over those problems. She was a wise lady...

I look forward to hearing from you when you have a few minutes to check in. Take care of business and family first. Your fellow Warriors will be here waiting to hear all the positive updates! Good luck is yours....

GoNavy · Member

LOL - thanks 5 and See,

Been visiting the bathroom a lot - reminds me of when I was prego with my Son. I'd be at work, have to go almost every time I got back to my desk (the bathrooms were quite far away).. My pup keeps looking at me like "not again lady".. She's my shadow, except when I visit the br.!

I had a few "twangs" last night in my legs and head, but I just reminded myself of what all of you have been posting. Today I'm a bit more tired - but am going to start moving around to shake it.

Thank you so much for sharing your journey and advise.. It means a lot.. I will try to check in and share mine as often as I can. What I failed to mention before is that I also take care of my Mother (83). She has CF, Chronic Kidney Disease and the beginning of Dementia. Not to mention she broke her hip over Christmas of 2016. So it's been quite the journey these past couple of years. She lives with me (as I wouldn't see it any other way), I enjoy having her with me, but at times it can be a challenge.. So, if I don't respond or check in often, please know that you all are in my thoughts and prayers of gratitude.

Have a wonderful weekend fellow HCV Warriors!!

SeeTheLight · Senior Member

LOL the peeing is a hassle. Like 5 I try to ease up with the water come evening only sipping when I feel the need the last couple of hours before bed. Amazes me how many times I pee in that last couple of hours getting rid of some of the buildup, but makes less trips when I'm trying to sleep so works for me. My little 7 1/2 month old pappa mini Dachshund keeps me moving plenty too, but she makes me happy and gives lots of cuddles.

5-1-18 · Guru

yep, drink water and pee are going to be the rule of the day,hahaha

sometimes i can take long drinks close to each other and other times i have to sip , or drink and wait... your tummy will tell you how to go about it. sometimes it's much easier to drink the water while standing up; i guess stuff is less squished thn when i sit.

i finally learned to drink more during the day rather than close to bed so i didn't have to get up so much.

i think having all these things to focus on actually helped me with this treatment; i guess my ocd wanted to play along .

i'm so excited for you; and yea we are so lucky to have these fairly easy magic beans to go in and do the work for us

-- Edited by 5-1-18 on Friday 22nd of June 2018 12:00:09 AM

GoNavy · Member

Yikes!! Ok thanks Tig..

I'll do my best..

Tig · Admin

3-4 liters per day should be your target. If you drink 3 and have no issues, you’re good. If you’re feeling sluggish and have headaches or increased body aches, you should bump it up. You may benefit by adding some electrolytes to your regimen, Gatorade or something similar helps. Especially if you perspire more during your walks or exercise.

Here is our guide to better hydration!

GoNavy · Member

Thank you Tig,

She is a handful that is for sure. I used to always have Border Collies, had to put my last one down in 2016. Long story short, a friends friend had pups, I took a look-see and the little fart caught my attention. She was the only girl, quiet as can be, looking at me like "save me from all the boys".. Boy did she have me fooled. She is not quiet at all, is a real go-getter and could play from sun up to sun down if one would let her. But she is a good dog, protective when need be, yet super friendly.

Back to HCV:

I sure hope that it will clear up my GERD symptoms as well. Sure would be nice to eat spicy food again without feeling like I ate a ton of rocks.

Water Intake:

What is the most and/or least that people have drank throughout the day. I don't mind water at all, in fact I'm quite used to drinking a few bottles a day. I just don't think I'll be able to down a gallon. Perhaps more into my treatment will be different. My bladder sure has gotten a few rounds in today, eissh.

Day 1:

All in all, not bad at all - it is Only day 1..

-- Edited by GoNavy on Thursday 21st of June 2018 05:49:59 PM

-- Edited by GoNavy on Thursday 21st of June 2018 05:50:53 PM

Tig · Admin

Hey Navy,

Your fur baby is incredible! I had an Aussie/Border Collie mix and I can relate to springed extremities! I also had a Standard Poodle at one time and he was amazingly intelligent. You've got your hands full, but fortunate to have such a loyal companion and I know it will be, if not already.

I can relate to the salt vs sweet thing, too. I'm both, but my preference is salty. I love spicy food and am fortunate that I can still eat whatever I want, except ridiculously hot things, like ghost peppers and the rest that shouldn't be consumed by most humans, lol. I hope you're going to see some improvement in your GERD after SVR. Things improve a lot and many people realize after the fact that HCV was impacting their lives in ways they didn't even recognize. I hear all the time, "I didn't have any symptoms" until they really don't and realize that they were affected by it. You'll see!

Steady as she goes (Navy jargon) and drink that water. Don't overdue the exercise until you know how you're going to react to these meds. It takes a couple two or three weeks for things to adjust, even with the low side effects profile, your body does adjust. These are powerful drugs, just think about what they're tasked to do. It took decades to figure out an easier way to kill the beast in a friendlier way, but the fact remains, you're taking a strong anti viral drug and it needs you to help make it work for you.

Glad you're getting the vaccinations out of the way. Well done Sailor Mom!

GoNavy · Member

Hello Everyone,

Sorry for not addressing everyone individually this time. For some reason (perhaps the crappy WI weather) has me pooped out.. I took my first dosage today at 10 am.

I am a big breakfast eater. Think I picked that up after I realized that at night acid reflux was the worst for me. The thing with me though is that I'm a "salt" rather than "sweet" lover. So it's been hard to stay away from the spicy foods, etc. But I'm "learning", usually the hard way.. lol

I am going to try and walk more often, hoping the meds don't wear me down. I have a 1.5 year old aussiedoodle who came with springs rather than bones for legs so a daily walk is a must. I also like to go hiking in Utah - usually try to go every other year. Hopefully I'll get there next year.

I did get my first Twinrix, my next shot is July 9th.

Thanks much for sharing your advise, it's highly appreciated and will be utilized.

Cheers to new beginnings!!

Canuck · Guru

Hi Navy,

Welcome here, you have found a good place to come to for questions, advice (when we are able) and/or just plain company in sharing your journey or in sharing the journey of others.

So, you start your epclusa tomorrow! YAY!, good stuff!

I hope I am not too late, but in reviewing your limited history here, and not really knowing if you are (or are not) taking anything for GERD symptoms, I would "suggest" (if possible) to consider dosing yourself with the epclusa with your supper meal (as far as timing) - for a mulitude of reasons, but I really don't know anything about you (your usual dietary requirements, or your normal eat/sleep/work time shedules, etc., etc)., so ... supper time may not be appropriate for you - but, if it is, then consider taking it at supper, or, any other meal of the day that is a "moderate fat content meal".

Dosing at the same time every day as Tig said is important, and with instruction (as far a timing) from your doc, as STL mentions (if you are any stomache meds or other meds), and of course, as we all say - drink lots of water all day long! These are the most important things to consider - so, just plan your dose-taking-time for the most reliable time of the day in which you will not be late/will not forget, and with a meal if you can, at a time that is convenient.

The epclusa monograph or the drug package insert will show that Gilead says you may take epclusa "with or wthout food" - but, I personally would opt for "with food", and personally, I would make the food a "moderate fat content meal". As Tig mentioned "with food" may well help in drug absorbtion generally (and not just with epclusa either, this can be seen with taking other drugs too), and "with food" just may make things easier on the stomache/gut as well (given your limited mention of GERD things). Another consideration is that the moderate fat content meal, especially, may have a small positive effect on the epclusa absorbtion specifically. But, with or without food, epclusa was designed to provide you ample coverage and efficacy if taken as they direct in the monograph.

I was not able to take my epclusa (and another drug) at my evening meal due to the circumstances of being in a trial, but if I had had a choice, then I think, for preference and all the reasons above, and convenience I would have opted to take my dose with the supper meal, and also testing out the theory of sleeping through any possible sides during the night. But, remember, there are quite few who have not been bothered much by sides at all while on epclusa.

Somebody here already asked you if they had finshed assessing your hep A and B immunity, I assume your doc did so?

Happy "day one" tomorrow! First pill past the lips and on to a life without this virus harming you anymore! biggrin C.

JB · Member

Welcome, Navy!

I am on day 25 of Epclusa and so far so good. I get occasional headaches, but nothing too extreme. I've had no stomach issues (knock on wood). I eat healthy meals and walk quite a bit. I've been trying to get 10,000 steps per day.

Good luck with the journey. I was also alone and scared at first, but quickly found that I'm not alone - thanks to this forum. We're all pulling for you!

JB

5-1-18 · Guru

oh yea, i ate a very small portion of cheese 3 times and that made me the worse belly ache of all things.

so i was very careful with foods ; white cake with white frosting sometimes.

experiment to see what feels best and stick to those foods

5-1-18 · Guru

hi Navy, welcome to this great forum of friends

i have gallstones so had to bob and weave when the Harvoni took a toll on my innards.

the doc and pharmacy allowed my tums as long as i followed their instructions. so that's the best thing to do is talk with them.

i only took a tums or two at work within the time limit [my limit was 5 hours before or after dose; but they say 4... so i was extra cautious and had my own regiment of many more hours before and after [as far a way as possible].

i sipped mint tea and club soda the last few weeks .. ..never drinking too much at one time.

good luck managing your sides as you go thru this life saving C-free treatment.

5

Tig · Admin

Hi Navy,

My cousin just retired as a MA Senior Chief. It’s an honorable rate, after all, somebody has to keep all those crazy squids in line, lol! We can be an unruly bunch, but those MA’s are a hoot! Back in the 70’s, I used to know where they hung out (avoided that path) because under Admiral Zumwalt, we could grow our hair out a little longer, but your son’s predecessor‘s were always looking for us extra long hairs. Ha, ha! What a great bunch of people, I loved my service time so much.

If you find your time something that doesn’t work for you, you can adjust it, but very slowly. The directions say you can take it with or without food, but it’s been shown that absorption is better with a moderately fatty meal. Your treatment will work either way, so that’s a choice. Sometimes food will help digestion, especially with your existing GERD. Just keep it in mind. As mentioned, be sure to stay adequately hydrated! You should set your alarm as a reminder to take that pill on time, too. If you experience any brain fog (forgetfulness) that alarm will save you a late or missed dose.

Did your doctor test you for Hep A and B? That should be accomplished as well. They generally recommend getting those vaccinations as well. It’s a good idea to do it. I’m sure there are other tips you’ll get along the way. We’re here to make your treatment easy and successful. We love all the success stories around here. I know you’ll be next!

Here’s some light reading, the package insert.

Epclusa Monograph

SeeTheLight · Senior Member

Hi Go Navy,

Welcome. I am quite new here also and I can guarantee the people here are lovely understanding folk, who go out of their way to help those of us new to treatment on our journeys.

I am on Epclusa. (half way through week 7) and doing very well indeed. I take my "magic bean" at 7.30 am and have very little trouble with it. I do not work any longer. I found the first few days on treatment great - felt no different. Made sure to drink plenty of water. I did have the odd not so great time a few days in in particular where found the first few hours after taking my pink diamond were good, but in the afternoon i felt a little nauseous and a strange feeling of pressure around my head. Nothing that stopped me with anything I needed to do and since that time I have had very little symptoms at all. Occasionally I get a slight headache and slight nausea and usually realise I haven't drank much for a couple of hours, so more water required. I have not suffered any fatigue.

I don't suffer with tummy problems but so long as you work out when you can take your stomach meds you should do just fine.

We are all different and these powerful drugs (super "bug bombs" as I see them - they have to be very powerful to kill these pesty bugs running rampant in our systems) affect us all differently. We are so very lucky to be being treated in the era of these powerful DAA's.

Good luck on your journey. Look forward to reading more from you.

GoNavy · Member

Thank you Tig for welcoming me to the group. I had to laugh when you said "fellow Swabbie". A term I've heard often since my Son joined the Navy. He is going on 4 years, has been stationed overseas (land) for most of his tour. He was contemplating in the beginning about being a Corpsman, but opted the MA instead. He will be done in August, coming home with a 2 year degree in toe and then off to finish the rest of his college studying in the field of Advanced Practice Nurse Prescriber. I know - I know quite different from Policing, but I'm getting used to his every changing ways.. Few more gray hairs, but getting used to it. LOL

I've decided to take the medicine in the afternoon, midpoint to see where it takes me. The good thing is that I work from home so I do have a bit of advantage that way, however I see that fatigue and brain fog can be a side effect, just home I can still do the "numbers".. lol

Thanks again - I look forward to more conversations.

PS: Thank you BOTH for your service.. My Dad is/was a WWII Vet, USS Hale..

Go Navy!!

Tig · Admin

Hello and welcome to the forum! You came to the right place and we'll do everything we can to set your mind at ease. I'd like to first start out by telling you that I too, was a member of the US Navy. I got out in 79 after 5 years as a Hospital Corpsman. My wife whom I met on active duty was also a Corpsman and we traveled all over together. It was great fun! You have every reason to be proud of your own Petty Officer, thank him for me, a fellow Swabbie! We stick together...

You don't need to be frightened of treatment. Epclusa is one of the easiest protocols there is and has little to no side effects at all. I will tell you that it's very important to drink at least one gallon of water everyday. These drugs can dehydrate you without knowing it and your body demands the additional hydration. Doctors often forget to tell new patients about that little fact and those that don't meet this requirement will often experience headaches and increased fatigue. Drink the water and you shouldn't have any of these issues. The time of day you take the pill is really up to you. Some people prefer to take it at night and sleep through any of the fatigue that sometimes accompanies administration. If you're working, sometimes that works in your favor as well. It's rare to have much in the way of side effects, so the most important thing is to take it at the same time each day.

The issue with GERD is often a problem for those of us with HCV. You may be fortunate enough to have those symptoms resolve during and after treatment. It's important to check with your doctor for instructions on when to take any medications that you might be taking to help control it. Some of them must be taken simultaneously with your Epclusa, or 4-12 hours apart. That's very important. A higher pH in your stomach can alter the absorption of the Velpatasvir component. It's an easy thing to manage, just determine how that's done. We have lots of experience here on the forum and others will be along to say hello and offer advice.

Don't worry! Tell us your genotype and any blood work results when you can. We like each new member to fill out their signature line with that information. That way we know some of your history and current treatment situation. You can see from ours what is commonly shared and there is a link in mine with directions to set it up. If you have any questions whatsoever, please feel free to ask. We're here to help you and will help in any way we can.

GoNavy · Member

Hello All,

Tomorrow I start Epclusa - scared and not sure when is the best time to take this drug. I do suffer from GERD as well and from what I've been reading the two don't mix very well.

Any advise out there on time and stomach related issues would be greatly appreciate. I can't tell y 'all how grateful I am for this forum... Make me feel not so alone on this journey.

A short version about myself:

Age 22 when I found out I had the virus.

Am going on 50.

I don't have all the lab information, but will post later.

Am proud Mother of US Navy PO2

I look forward to getting to know you all.

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