Hep C Discussion Forum

Judy S · Senior Member

RE: I'm back again, 7 years later.

Cinnamon Girl · Guru

Hi Judy, I rarely stop by here these days but just happened to look in and saw your posts! A lot of different people here now but still the same positivity and great support. And Tig of course continues to do a great job.

Very pleased all`s going well for you so far, must feel amazing. You`re doing all the right things, and nice that you`re able to enjoy a coffee too! smile

I have a little grandson now, as you can see, and I like to spend as much time as possible with him and my daughter. Life is good!

Judy S · Senior Member

Hi Cinnamon Girl; I totally remembered you the moment I saw your name! So happy you have cleared and stayed that way! Thank you, and thank you Tig, 5, and MissusB!

I took my 8th pill last; 76 left to go! Will be done Feb 2. I'm so happy about this. That weird back pain went away an hour after getting up, and haven't had any side effects lately at all! I've even started drinking a coffee daily, in addition to all the water, and still not getting that head, neck, and shoulder pain anymore! Still seems too good to be true! It doesn't feel like I'm on treatment at all, and I didn't believe that was possible for me.

Judy S · Senior Member

Thank you all for your help and advice. I've been drinking nothing but water since 3 days before starting Epclusa. I've completely cut out all diet sodas and coffee, and even stopped taking my Prilosec for acid reflux (read about interaction), my Neurontin (for hot flashes; 4 years of menopause and horrible hot flashes), and Zyrtec for allergies. I just want this pill to do its job.

Nausea has gone away, but I do take Reglan daily, for over 15 years, because I have gastroparesis. I don't think I'd be able to drink all of this water without it, lol. For a good year, I've been making lemon ginger shots in my bullet with ginger root, lemon juice, turmeric, and cayenne. But I stopped that, too, because they're spicy and I'm off my Prilosec.

We stopped work early last night and I went to sleep at midnight; was just exhausted. I was awakened at 6 am with a bad pain going across my mid, upper back. Don't know what that's about, but no sides right now, and I took the 4th pill last night. I will drink more water, and follow your advice Observer, and have 3 glasses of water with the pill. Thanks again, all of you!

Cinnamon Girl · Guru

Hello again Judy! I remember you well, and the ordeal you went through back then.

Congrats on starting on your Epclusa journey! I can imagine how nervous you must have been about starting again, but as the others have said, this time will be so different, and so much easier!

All the best of luck to you, welcome back! smile

MissusB · Veteran Member

You will be amazed at the new meds. I finished 8 weeks of Mavryet in October. No side effects. Will have 3 month post treatment labs in December

5-1-18 · Guru

hi judy,

did they do an ultrasound on your liver? do you have gallstones?

other than gallbladder pain in your back, it could be gas, esp. since you stopped your meds

Tig · Admin

Judy, the Neurontin and Zyrtec won’t be a problem at all. The antacids and those types of meds have strict limitations. It sounds like you’re being appropriately cautious and that’s great! smile

Judy S · Senior Member

Thank you all for your help and advice. I've been drinking nothing but water since 3 days before starting Epusa. I've completely cut out all diet sodas and coffee, and even stopped taking my Prilosec for acid reflux (read about interaction), my Neurontin (for hot flashes; 4 years of menopause and horrible hot flashes), and Zyrtec for allergies. I just want this pill to do its job.

Nausea has gone away, but I do take Reglan daily, for over 15 years, because I have gastroparesis. I don't think I'd be able to drink all of this water without it, lol. For a good year, I've been making lemon ginger shots in my bullet with ginger root, lemon juice, turmeric, and cayenne. But I stopped that, too, because they're spicy and I'm off my Prilosec.

We stopped work early last night and I went to sleep at midnight; was just exhausted. I was awakened at 6 am with a bad pain going across my mid, upper back. Don't know what that's about, but no sides right now, and I took the 4th pill last night. I will drink more water, and follow your advice Observer, and have 3 glasses of water with the pill. Thanks again, all of you!

5-1-18 · Guru

somewhere along the line i had to switch to pill before bedtime to sleep thru the sides...but hubs was so wired when he took his that i thot that would happen to me too..

it takes some doing to switch times but it can be done

Observer · Guru

Judy,

sorry youre having some sides...I agree with Tig and Cheddster ...increase your water...I think after a week or so, I got to the point of drinking two or even three big glasses *with* my pills...partly to remember ^ water and partly because if I didnt I would get headaches... water usually fixed those headaches too...ginger is great for tummies....

dont work too hard...

Cheddy · Moderator

Judy,

Ginger is really effective for relieving nausea. You can search here for a homemade drink or you can go with non alcoholic ginger brew at a store. I go with the double strength and have good results. It's foreign to get used to so much water, but it's true that it helps.

Carry on to the finish line. It will be awesome.

Cheddy

Tig · Admin

Hi Judy,

I'm pleased to hear you're doing well and not experiencing much in the way of side effects. You mentioned the headache and generalized yuck feeling for several hours. I want you to re-evaluate your water intake. The description you've provided, sounds exactly like those we've discussed as a possible indication that you're not getting enough water. When I say water, I mean water, not coffee, not soda or anything else, just water! Try bumping it up a little and see if those issues decrease. Very often that's all that's needed. Keep up the good work and stay the course! You're soon to be HCV FREE, WOOHOO!!!!

Judy S · Senior Member

I'm so glad that so many have been cured with these DAAs! It's actually allowing me to keep working! I took my 2nd pill yesterday evening and all I've been feeling is the same neck and slight headache and a cough. Only lasts for 5 hours. I did have a bit of nausea after 2nd pill, but it also went away. If this is as bad as it gets, it feels like a miracle. Thank you to all for the support and helpful information; it is much appreciated.

Scruffy · Guru

Hi Judy

New treatments look like walk in the park now from the posts here. There hasn't been a "one foot in the grave " post here in years.

Follow there advise lots of water.

Observer · Guru

Whooooo Hooooooo

first pill

that virus is going down!

btw in the Vancouver region we have been paying well over $1.50 per litre for gas...it snuck down to $1.39 this week but no doubt will climb again. I would love to buy an electric car and be done with gas and combustion engine repairs.... but they are pricey

5-1-18 · Guru

i know what you mean about nite and day..... i think that's why i was so scared to start harvoni, cos of the intronA shots cry

what a world of difference! , and the neck could just be normal tension

i'm glad you came and let us know how the first pill feels

5

Judy S · Senior Member

Thank you, Cheddy! I'm very positive and optimistic.

Hi 5, my pill is starting a battle . I took it at 7 pm and it's almost 10 pm. All I feel is an ever so slight neck ache. Since I didn't die within the first hour, I went to work, lol. Drinking lots of water. In 2012, I ended up in the hospital with crazy low b/p, high fever, and more, after first PegIntron injection. Night and day difference!

5-1-18 · Guru

it's 7:40 PM pacific time...... do you know where your pill is?

Cheddy · Moderator

Judy,

All the best on your treatment. Rest when you need to. This is the time to make exceptions to your wild work schedule. I wish you wellness and good cheer.

Cheddy

Judy S · Senior Member

Oh, sorry about that, Tig. Still getting used to this forum, again. Yeah, some gas prices are nearly $6, ouch. Not $9, thank goodness!

I've decided that my Epclusa time will be 7 pm, daily. I work mostly nights so seemed good. This evening will be #1, while working. I started drinking nearly a gallon of water daily, 2 days ago.

Tig · Admin

Hey 5, that’s a five, not a nine, but give it a few months and it will be... We’re around the $3.00 mark for regular, here in Florida. It’s in the mid to high $2’s as we drive through the eastern states. The gas taxes are ridiculous!

I hope you Californians get a break from this, sooner than later. smh

5-1-18 · Guru

am i reading $ 9.00 a gallon, please tell me i am not

Judy S · Senior Member

Iris, then you must be loving our gas prices, too, lol! I was in DTLA working today and I took a pic of the gas prices there; it's attached, here. And a huge congratulations on your success with Harvoni!!l

Judy, the pic format was too large, so I needed to reduce it back to an icon. Hope that’s okay? Tig

-- Edited by Tig on Sunday 10th of November 2019 09:36:51 AM

Iris Dragonfly · Guru

oh hey! I'm in L.A. too

Judy S · Senior Member

Hi 5, yes, during the week when I'm close to home I can easily take a rest if needed. On weekends, hubby (common law) and I drive an hour away to do deliveries for Uber Eats and Door Dash. It's nonstop, back-to-back orders, no break. We've doing this since Aug 2018 and usually do 30 to 38 hours straight; did 40 hours once. We go all over LA and are an hour or farther from home. Just now driving home after 29 hours. I'm tired and want to rest up for first pill tomorrow. We work as a team so I don't have to drive, he does that while I navigate and we switch off pickups and deliveries. I'll be 52 next week and he's 56 so we're slowing down a bit, lol. I've worked for the City in which I live as an Office Assistant for nearly 7 years, but the past few years I'm on-call, only. They don't need me too often, so we do the gig jobs. Congratulations to you and everyone else here who has completed tx successfully!!

5-1-18 · Guru

judy, is your day flexible enough to take a rest when you might need it? some ppl breeze thru; with your low f status it might be easier .... so glad you managed to keep that f status down this whole time

happy starting day at the end of your work week.

5

Judy S · Senior Member

Hi Iris!

I saw your name in the email notification and immediately told my fiance that I remember you, then saw what you wrote, lol.

Yes, tx is SO different, now. I am doing 12 weeks. Should be done in February. I'm an Independent Contractor so must work those hours to make a living, and hoping that staying busy will help. My pill box is set the same, so maybe I shall start Sunday evening.

Thank you and nice to see you again!

Iris Dragonfly · Guru

HEY! I remember you. Welcome back! gonna get that bugger this time!

Is there any way you can get shorter hours until you get a feel of how this will affect you? I went Sunday to Saturday, my pill box was set up that way so I went with it. what is the duration of your treatment? what ever it is, waaaaaay shorter that the old days.

Wishing you the best of luck.

bb, Iris

Judy S · Senior Member

I just picked up a 2-week supply of Epclusa. Also picked up my records that were left for me. Verifies genotype 1a and fibrosis F0-F1. Before tx in 2012, my liver biopsy showed F2. Getting real, now! I will start after this long weekend shift is over. Thank you to all for your support; could Not have done it in 2012 without this forum!

Judy S · Senior Member

Hi Observer,

That was a question I was going to ask the pharmacist today...when should I take Epclusa? I work nights, and weekends I drive an hour to LA and pull straight 28 to 30 hour shifts, then drive 1 hour back home. I used to have a huge pill case and alarms set in 2012, and also had the luxury to stay home. Now I work 12 hour days, 7 days a week, plus marathon weekends. I just don't know, yet.

Judy S · Senior Member

Thank you, Greg. Picking up today, plan to start Monday. Maybe Sunday, depending when I get back from the long weekend shift.

Judy S · Senior Member

Maybe I won't even want diet coke with all that water that I'll be drinking again? I work long shifts and at nights, so gotta figure all this out. Picking up the Epclusa and my last labs in the next hour. Lots going on now, so praying for little as possible sx this time around. The last time they nearly killed me.

Greg D · Senior Member

Hi Judy, I totally appreciate that you would be apprehensive about starting treatment again. All the very best on your fresh new start!

Observer · Guru

yay Judy...youre getting ready to slay that nasty dragon.

aspartame is pretty bad for you...(sorry) so your body will appreciate the change to water....

I was never a dedicated daily water drinker before I did treatment but I am now.
one odd thing Ive noticed is that on the odd time that I get insomnia these days...its always on days I didnt drink enough water...and I still drink a few extra glasses if I get a headache before resorting to an advil and it often does the trick.

what time of day are you planning to take your Epclusa? The other important thing (besides water) is to keep the medicine at the same level in your body so you want to be consistent. I had to take my treatment twice a day and after food so setting alarms was major and also making sure to have a pill with you in case you cant be home at *the* time.

5-1-18 · Guru

i did the short trial with the interferon, lucky for me my viral load didn't move down much and they took me off... that was a happy/sad time for me.....but yea, that was awful blankstare , the shots and the sick feeling

i suppose you will just have to see how the diet coke works out for you , i still drank my low acid coffee , diluted.

just that the water has to be a big part of tx.

pill.water and pee , you will find out how much water is best for you

5

-- Edited by 5-1-18 on Friday 8th of November 2019 04:05:51 AM

Judy S · Senior Member

Lol, gotta get back to that water routine. This time it should be easier than in 2012, when I was taking 30+ pills a day and super nauseated. I definitely won't be missing those 3 injections every week, either! Water it shall be.

5-1-18 · Guru

hhahaha on the diet coke , water, water ,water....

Judy S · Senior Member

Cheddy, thank you also. I will get started with the water routine before I start tx; good idea. I guess diet coke doesn't count, lol? It's what I drink while working, 7 days a week. Looks like I'll have to make changes.

Judy S · Senior Member

Thank you Observer and Tig. I'm still learning how to navigate this site on my phone; can't seem to reply to one individual. Yes, the old TX was horrible for me, and the Victrelis pills were like fire pills. I remember that I couldn't taste food while on those horrible, burning pills. Giving myself shots 3 times a week was not fun either. I also remember in 2012 that we were supposed to drink a gallon or more of water, daily. So I will be back to doing that again. Thank you so much for all the excellent advice and for sharing your stories. I should be picking up my prescription tomorrow and I have a huge weekend of work so I think I will start it on Monday. Thank you again and I will keep you informed. Judy

Cheddy · Moderator

Well, Judy.

These posts pretty much say it all. I can only add support. You are going to be so amazed.

Now is a good time to get started, drink water, and get through.

All the best!

Cheddy

Tig · Admin

I did the same exact treatment you went through, only 28 weeks. I’ve followed people here ever since and I can assure you, these new DAA’s are easy, with a low to nonexistent side effect profile. It can take a week or two to adjust to it. Some say they felt a little weird and had achy joints. Many relate it to taking a daily vitamin, you don’t notice much at all. We can hope!

One thing to know, you will greatly benefit from a hydration regimen of one gallon of water, everyday. I can’t emphasize how much that one suggestion will help you go through treatment, side effect free. People that don’t hydrate enough, experience increased malaise, aches and most often, headaches. Simply achieving 3-4 L (1G) of water daily, will prevent most, if not all of it. It’s a good barometer. If you start feeling poorly, first thing is be sure you’re hydrating adequately and up it if necessary.

Keep us informed, Judy. You’ll get it this time, I’m sure of it.

Observer · Guru

nice to meet you, Judy

the new treatments are so easy compared to the interferon ribivaron days, Anyone that did that treatment is so so so brave... daas are usually no more than 3 months and as long as you stay super hydrated, you should have no problems finishing treatment and getting rid of the dragon for once and all..

I have cirrhosis and had to add ribivaron to my daa (not epclusa) and I did have sides from that (low hemoglobin) but I survived the 3 months and am cured...its such a game changer to be hcvfree ...

I so agree...liver biopsies are rather awful and traumatic....doing blood tests and fibrescan are a breeze

and dont worry if your viral load is high...it actually has no bearing on successful responses to treatment...and anyways it can fluctuate quite dramatically, (mine was over 7 million at one point when I wasnt even very sick but years later it was 1/4 of a million and I was kinda getting ready to die ) its zero now biggrin

anyhoo...looking forward to your journey

Judy S · Senior Member

Thank you so much, 5-1-18!

5-1-18 · Guru

welcome back judy

all the new daa's are amazing. few sides considering they do cure us.

we will all be here to cheer you on and answer questions, you are back in the right place

Judy S · Senior Member

Thank you, Tig. Sounds very promising.

Tig · Admin

Hi Judy,

Welcome back! You should do fine on Epclusa. We’ve had several discussions in the On Treatment section. Use the search function and you should touch on most discussions. Everyone here has sailed through the Epclusa protocol.

Oh, one more thing, 100% success with the dragon slayers here! It’s good stuff.

Judy S · Senior Member

Hello,

I was on this forum for all of 2012 during treatment, and it was the only reason I held on for as long as I did. I was on the 48-week tx, with PegIntron, Riba, and Victrelis. I also had to do weekly injections of Neupogen and Epogen for the loss of white and red blood cells and platelets. I was horrible ill most of the time, and hospitalized twice via ambulance with extremely low b/p (70/50) and a fever of 103, plus vomiting, weakness to where I couldn't stand, even lost my vision for a few minutes. No viral load was detected, but I wasn't quite finished with tx. Had to stop, that last time in the hospital; it was too much for my body to handle.

I'm back now, trying to learn more about Epclusa, and how to prepare for it. After testing for resistance and many other things, he says I can't do Harvoni, and Epclusa is the one for me. I'm so glad they're done with liver biopsies and it's now a blood test. Dr says I'm at stage 1 Fibrosis; I was at 2 before first tx. Genotype 1a. I have to go in tomorrow to get copies of my labs; still don't know my viral load. Any advice would be appreciated. My dr says that knowing me, there will be side effects.

Judy

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