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Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: Phoenix17 on September 11, 2016, 09:00:14 am

Title: Starting Epclusa on Tuesday
Post by: Phoenix17 on September 11, 2016, 09:00:14 am
Hello!

I am new to this forum. I found out I had HCV about a month and a half ago. I am GT- 2, and am starting Epculsa on Tuesday Sep 13th. I know there is not a lot of information about Epclusa as it is so new. I am trying to learn as much about it as I can!
I am looking forward to meeting everyone. Going through this with people who understand makes all the difference in the world!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on September 11, 2016, 12:04:14 pm
Hello,
   I am right there with you. I will be on day 3 of epclusa today. I also have been trying to find as much info as possible,  however there really isn't any. I have decided to take my pill at night to bypass any possible side effects. Day one was ok for me, I felt an abundance of energy.  Not so much today, my body feels sore and I am feeling mild back pain. My legs are very sore. I am tired but I'm always tired. I have mild discomfort in my liver area. Hoping this is just my body adjusting. I am also very thirsty. Hope everything goes well for You! God bless.
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on September 11, 2016, 01:10:43 pm
Hi Mw - Glad to meet you! We are in this together. I am going to start this at night as well. From what I have heard from a few others is that your body is adjusting to the meds for sure. After a few weeks it gets a lot better. Drink lots of water too. About a gallon a day will help with the side effects. I have my water ready to go!  Keep me posted on how you are doing. You are on your way to beating this thing!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on September 11, 2016, 01:22:19 pm
Nice to meet you as well. This is actually my first post on the forum too. I hope we can help each other through this journey! Keep me updated on how you are feeling please!
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on September 11, 2016, 04:59:45 pm
I will Mw. You too!
Title: Re: Starting Epclusa on Tuesday
Post by: Shannon on September 13, 2016, 02:00:28 pm
I am Shannon, starting Epclusa today, waiting for UPS to deliver it. Just came from my doctor who said I am her first patient to take Epclusa. Hoping for great outcomes for all of us newbies!!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on September 13, 2016, 03:29:36 pm
Hi Shannon,
  I hope everything runs smoothly for you! I'm going on day 5. Keep us updated, I think we could all help each other since we are some of the first people prescribed. I'm eager to see how you guys are feeling. I'm having some trouble sleeping which seems to be the root of my problems, but insomnia is nothing new to me. I've been struggling with this for a while. Good luck to you!
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on September 13, 2016, 09:38:45 pm
Hi Shannon and Mw,

I took my first dose about a hour and a half ago, So far, so good. : )   (7:00pm)

Did you get your Epclusa today Shannon? I hope so! We will kick this!

I will keep you guys posted on how its going. Love to hear how you are feeling

Hopefully you will get some sleep Mw.

Happy Epclusa day!
Title: Re: Starting Epclusa on Tuesday
Post by: Shannon on September 14, 2016, 01:18:30 pm
Hi fellow Epclusa friends!! I took my 2nd pill today and so far so good. Pretty sure side effects won't show up the first day or so (if I have side effects at all). For anyone else reading these posts, I went on-line to www.Epclusa.com and they gave me a coupon for $5 co-pay for each prescription!! That is hard to believe as this makes it cheaper than my other prescription meds. Look forward to reporting back in a few days with updates. Hope everyone is feeling great!!
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on September 14, 2016, 08:24:13 pm
Glad you are not having any side effects Shannon! I had a few very small headaches today. It was weird! As soon as I felt one coming on, it would go away within about 2-3 seconds. That was it.

I have had swollen ankles for about 4 months. One hurts quite a bit. (Thats why I went to my doc in the first place). I was on my feet a lot today, and the swelling has gone down a lot. From the Epclusa? I guess we will see.

I have the coupon from Gilead as well. The full amount I have to pay for 12 weeks is $15.00. $5.00 a month! Awesome.

Good to see that we are all doing well!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on September 15, 2016, 07:54:03 am
Hello,
   Just checking in to update you guys on how I'm feeling. Unfortunately I cannot say I have had no side effects. About an hour after I take this pill, I feel like I've been beaten up. I get pains all over my back, chest, and stomach. The typically subside within an hour. I can sleep for 8 or 9 hours and still wake up feeling extremely drowsy. It's like taking a bunch of Nyquil and going to work. The fatigue lasts all day. I do drink about 4 bottles of water a day. No headaches as of yet. I also do have muscle aches and pains throughout the day, especially in my back and legs. My eyes are so heavy throughout the day and constantly burn. However, I am also still working 10 hour days 6 days a week so maybe my body isn't getting enough rest. I feel worse than I did before starting treatment but I fully expected that and am still immensely grateful to have the opportunity. I'm only 29 and hope to rid myself of this now. I have read that there is a two week adjustment period from other people's experiences. I hope you guys are doing well and getting enough water and rest! Thanks for listening.
Title: Re: Starting Epclusa on Tuesday
Post by: MommaT on September 15, 2016, 09:07:43 am
Hi Shannon! Great to hear you started your Epclusa and will love to hear how it is going! Did you take morning or night? Yes that $5.00 is amazing! Have you been able to navigate this site okay? I am having trouble I am so used to Facebook and nothing like it! I saw some others starting now or soon-I am trying to start soon. How soon do you get blood work or see a Doctor? Keep up your great attitude! Terry
Title: Re: Starting Epclusa on Tuesday
Post by: Shannon on September 15, 2016, 09:22:02 am
Hi Terry, I am taking med in the morning as I don't want to chance insomnia. I really need my sleep!! I was diagnosed in early July and it took a month to get an appointment with the Hepatologist who then referred me to the Infectious Disease Specialist who did a very specialist blood work up to find out my genotype. That blood test took 3 weeks to get back as it had to be mailed off somewhere. Once doctor prescribed Epclusa it took about another 2 weeks for approval from my insurance as they didn't approve it until doctor wrote them a letter of medical necessity. I started Epclusa on Tuesday, today is day 3. I have blood work and see my doctor every 4 weeks now. Good luck to you and keep us posted. Have a great day!!
Title: Re: Starting Epclusa on Tuesday
Post by: Shannon on September 15, 2016, 09:23:22 am
Hey Phoenix, I too am having slight headaches that only last short periods. Today is day 3 so we will see. Wouldn't that be cool if the Epclusa is helping with your leg swelling? Put your feet up my friend.

MW, so sorry you are feeling lousy. I can't imagine not feeling bad at some point as this med is strong enough to cure us!! I too am drinking lots of water. You work too much my friend. I hope this phase passes for you. Take care of yourself and keep us posted.
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on September 15, 2016, 07:55:02 pm
Hi My Epclusa fiends!
Mw- Sorry to hear that you are having yucky sides. Are you drinking enough water? I am drinking a gallon a day. It's not as hard as it seems. I have also heard that it takes about 2 weeks for the body to get used to the meds. I hope that it gets better for you sooner. I am tired too. I work 9 hours 5 days a week, have a photography business, work the nursery at church and am a single mom. No wonder we are tired!
Shannon- Glad to hear that it's going well! I take it at night, but not having a hard time sleeping at all. I was pretty amazed at the swelling too!
Momma T- How is it going? Where are you in the process?

Keep the faith everyone!
Title: Re: Starting Epclusa on Tuesday
Post by: Shannon on September 16, 2016, 08:53:41 am
Good Morning Everyone!! Checking in to see how you are all doing today. Day 4 and all is well with me. I too am working 9 hour days M-F but my kids are grown and out of the house. Most of my job is at my desk so I try to walk 3 miles a day. Met that goal yesterday but not every day this week. I Hope you all have a restful and uneventful weekend!
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on September 16, 2016, 06:58:25 pm
Hi ! Glad to hear you are doing well Shannon. I feel a little more tired today. Not sure if it's just the end of a busy week or the meds. A good nights sleep will help.
Good to see that you are walking. I am always on the go at work and walk a mile during my break. Everything helps, that's for sure.

How is everyone else doing?

Have a great weekend!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on September 16, 2016, 07:03:08 pm
Hey Shannon and Phoenix,
    Doing OK over here. Not as foggy today. I also get the slight headaches for 2 to 3 seconds and then it goes away. Keep up the exercise Shannon! Phoenix- it's probably just been a long week. I also took your advice on drinking some more water and feel better. Have a relaxing weekend everyone!
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on September 16, 2016, 07:07:50 pm
Glad to hear it Mw! Water is your best friend. Have a great weekend!
Title: Shannon checking on folks
Post by: Shannon on September 22, 2016, 01:49:20 pm
Hi my friends. Just checking in with everyone on Epclusa. Today is day 10 and I am doing just fine. Anxious to see what my 4 week labs show as my VL was 8,250,000 which is high. Hope everyone is doing well today.
Title: Re: Starting Epclusa on Tuesday
Post by: MommaT on September 22, 2016, 01:59:45 pm
Hi-I am a week in and just brain fog! Yes-I cannot wait for 4 wk labwork! I just read a gallon so I filled up a container and am going to be more accurate!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on September 22, 2016, 02:21:18 pm
Hey ladies,
    I meant to post on here last night to see how you both were feeling. I am feeling better. Glad to see everyone is in good spirits. I am see my docor in 2 weeks about my 4 week labs. I started with a vL of 55,000. Hoping to see results! I'm sure the brain fog will fade soon, it did for me! Have a good week!
Title: Re: Starting Epclusa on Tuesday
Post by: MommaT on September 22, 2016, 02:37:10 pm
Hi MW!
I am just so glad to hear you are feeling better and happy just be able to see any post from these group of people like you, Shannon, Phoenix and Somewhere in Texas.  I am just little frustrated in using site. I read stay on same thread. Oh how I feel computer challenged! Hope to figure it out! Terry
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on September 22, 2016, 07:09:12 pm
Thanks Terry! You will figure it out. If you have email notifications, you can just open your e-mail and anytime someone replies, you'll be notified and will be able to click on the link. That link will bring you right back here to this post. That's how I do it. Best of luck, I am eager to learn about your treatment experience!
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on September 22, 2016, 07:20:38 pm
Hello friends! Happy to hear from you all. It sounds like everyone is doing well. I am as well. This is day 9 for me and feeling great. Brain fog is still with me, although I walked into a room at work the other day and everything seemed so clear. Kind of like if you get new glaases after 10 years of having the old pair. Not sure if it has anything to do with the Epclusa. I would like to think so. Still a slight headache every once in awhile. Not very often though.

I am excited to get the 4 week labs back too! Take care everyone and keep drinking lot's of water!
Title: Re: Starting Epclusa on Tuesday
Post by: Shannon on September 28, 2016, 10:09:01 am
Hello friends, I hope everyone is doing well. I am on day 15 and, for the past couple of days, I am so disoriented, making mistakes at work and putting items where they don't belong. Today I feel like I cannot concentrate at all. Anyone else having this?
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on September 28, 2016, 01:33:30 pm
Hey everyone,
     Doing ok over here, ordering my 2nd bottle today. Shannon- I felt this way the first week. I was knocking stuff off counters, forgetting what I was doing. I am a manager and my employees were joking with me about me acting like I was on drugs. It did let up. Are you drinking enough water? Getting enough rest? Take care, hope you feel better.
Title: Re: Starting Epclusa on Tuesday
Post by: MommaT on September 28, 2016, 02:30:02 pm
Hi MW and Shannon
I am so glad to see posts! I have had such brain fog and confusion since starting. I am day 12 and drinking a gallon of water a day.

I just keep hoping everyday when I take my meds that once Hep c is gone-I will become clear headed and not have the pretreatment sleeplessness nights and aches and pains that get me down.

I guess everyone is different! Some people at some point feel great! I am glad no nausea, headache or stomach problems!

Hoping for the best and not giving up! 4 week blood work 10/14! YES
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on September 28, 2016, 08:48:02 pm
Hi Everyone! Day 15 and all is well. A few headaches still, but not bad. I still have brain fog, but I have had this for quite a while pre- treatment so nothing has changed in that area. Nothing worse than it was before. Still am tired, but that is nothing new as well! Otherwise feeling pretty good.

Sorry I haven't posted in a while. My dad passed away last week, and it has been a crazy week for my family. I will try to post more often.

I am excited about the 4 week labs as well!

Hope you are feeling better Shannon!
Title: Re: Starting Epclusa on Tuesday
Post by: Shannon on September 29, 2016, 01:43:33 pm
Phoenix I am so sorry to hear about your Dad. Bless your heart. Please know my thoughts and prayers are with you and your family.
My second round of pills are coming tomorrow. I am drinking a ton of water. I am still foggy in the brain and get really tired but it could be a lot worse and is only for a short period of time so not complaining. In fact I have been getting some good laughs from my mishaps. Yesterday I did my normal routine, took a shower, packed my lunch, etc. Got to work, opened my lunch and my dirty clothes were in there!! No telling what I packed in my husband's lunch lol. Thinking of you all during our treatment together. Sure is nice to have others to compare side effects with. I cannot wait to hear about everyone's blood test results. Take care of yourselves
Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on September 30, 2016, 12:49:26 am
Hi everyone of the Epclusa pioneers! You all sound like the Harvoni class of 2015! There was a group of us at the time that were having a lot of trouble getting approved but finally we were all getting our prescriptions & the sharing began. Lots of your sides sound very familiar. Clumsyness, tired some days & then extremely energetic the next, muscle aches etc. But the good news is most likely these will pass & you may not have your current stuff for the duration. I started getting a lot done early in the morning because when I took my pill I was tired for about 2 hours... then back to normal but I do suggest plastic water containers to prevent accidents! A lot of us put our stats in & dates started , 4 wk numbers etc. It would be great since you are literally the first Epclusa patients on this forum. So happy you are all on your way to be HepC free!
Title: Re: Starting Epclusa on Tuesday
Post by: Philadelphia on September 30, 2016, 05:12:03 am
So sorry to hear of your father's passing Phoenix.
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on September 30, 2016, 07:27:17 am
Hey everyone,
    Today is day 21 and I'm feeling sluggish and tired. I'm happy to hear from everyone. Phoenix,  sorry about your father. I lost my dad 3 years ago so I understand your pain. Shannon, that is funny! At least you can make light of the situation!  Rosie, thanks for your encouragement and support, I'll keep everyone updated when I get my labs next week. Have a good weekend!
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on September 30, 2016, 08:29:09 am
Thank you for thinking of me during this time. I appreciate it!

Shannon you made me laugh with your story! I don't have the clumsiness, but the brain fog and fatigue are still there. I had both of those prior to treatment, so its really not too different.

I can't wait to see everyone's 4 week labs!
Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on September 30, 2016, 10:08:45 am
Pheonix17, so sorry for your loss. You are in my thoughts & prayers.
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on September 30, 2016, 10:45:55 pm
Thanks Rosie! It is a difficult time. It will get better as time passes. Kind of like being on treatment.    :)
Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on October 01, 2016, 12:12:07 am
You are so right.when I found out I had hepc back in 2009 there wasn't a treatment for my genotype yet.I lost my sister,my dad & my father in law all in a month.I was so depressed I thought I was next. I still get weepy thinking about this cure...it seems surreal.
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on October 03, 2016, 02:17:01 pm
Hey everyone,
    Just checking in to see how everyone is. I feel increasingly tired and fatigued no matter how much sleep I get. I'm just not feeling well and my job is causing a lot of stress and pressure. I made a mistake at work and am feeling really bad about myself. I'm trying to cope the best way I can but I really have no support besides my fiancee who does not have hep c so he doesn't really understand. Hope everyone is feeling good. Thanks for listening.
Title: Re: Starting Epclusa on Tuesday
Post by: rk on October 03, 2016, 03:03:12 pm
Please don't beat yourself up. I do not profess to know what you are going through since I will be starting the same treatment this week. However I will be going into it much the same as you. I'll only have one person to talk to on occasion so I am sure it will be lonely. Try to stay strong, the finish line is the goal and your number one objective is to cross that line. Try to cheer up it will get better. I will probably need it myself and hope I am as brave as you and the other veterans. Rod
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on October 03, 2016, 03:09:11 pm
Thanks for the support Rod. Wishing you a great and easy treatment!
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on October 03, 2016, 06:45:47 pm
Hi Friends,
Tomorrow I will be starting week 4 of Epclusa. The time has gone by so fast so far! I am feeling pretty good. Some of my joint pain is gone. I still feel tired, but it's the same as before treatment. The headaches from the first few weeks are gone too.

Next Tuesday I will go in and have my 4 week labs done. Excited and nervous to see what they will be!

MW - Sorry you are not feeling well. Keep on going my friend, you will be glad you did.

Hi rk- Welcome to the forum! To keep the side effects at bay drink lots of water. i drink a gallon a day. It really helps. Keep us posted on how it's going for you.

How is everyone doing?
Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on October 04, 2016, 12:52:00 am
Hi Mw2324 & Rod, I hope you will find all the support you need right here. I have no idea how I would have gotten through this without the wise people on the forum. I did need more rest at the beginning but as time went on I had a lot of energy & went on mad streaks of productivity. The Hepc was knocked out in the first 3-4 weeks. Think of your body working overtime during that phase. It sounds silly but the time goes by before you realize it you are cured! I wish you could stay home & rest all you want but don't be hard on yourself at work. We are here for you so anytime you feel like no one understands...type away & we will jump in!
Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on October 04, 2016, 01:51:37 am
Hi Pheonix! Just read your post. Congrats on that first month & upcoming labs. I'm sure you will be even happier when you see results & it's great news. I found that by the end of the first month I was completely used to my routine & drinking water ,resting & trying to be as normal as possible. I just could not tell people at all  so being on here was magic. We were all on the same train... encouraging each other.
Title: Re: Starting Epclusa on Tuesday
Post by: MommaT on October 04, 2016, 09:20:19 am
Hello fellow Epclusa Aventurers-

Hi Phoenix-I am so sorry to hear of your father's passing. I lost my father right after being diagnosed. I know my father and yours are proud we are fighting this disease.

I am so excited you are in your 4th week!  (make sure lab includes VL, i read some who didn't get it) I am 3 days behind you starting EPCLUSA my 4 wk Labs are 10/14! Is it possible to see a clear that soon???? I have such hopes every day I take a pill.

hi MW-Please take heart and don't beat yourself up. I really think it is the Hep C that makes things hard to rebound from. I have taken to writing notes to compensate for brain fog! I mean like BRUSH your teeth-SHOWER-EAT!

Shannon I loved your story!-I bet you are double checking your lunch, boy are you full of surprises! I know ....Terry, brush your teeth! lol

I really cannot make sense of this year! Well, as I sit here with stitches on my nose (basal cell) feet that are tingling from... What is Tarsal Tunnel Syndrome?? went on vacation and came right back husband hospitalized 2 90% blocked major arteries/ Stents.  Oh and you have Cirrhosis... the good kind!

Well, I am still fighting! I do hope to look back and have a good laugh and be free of Hep C and maybe have a clear thought!

PS I brushed my teeth!

Thank you all for being my support-if it wasn't for this site I think I would Lose it entirely!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on October 04, 2016, 05:50:12 pm
Hey Terry and everyone,
     Hopefully one day we'll all look back on our treatment and laugh at the little things. Hope your husband is feeling better.  Terry -at least you are brushing your teeth! It's awesome that we are all starting this together, all in relatively the same time frame. I know you ladies are looking forward to your 4 week labs and I am eager to hear everyone's outcome. I made my lab appointment for Monday, I start my second bottle Friday. I want to thank you all for being supportive! Thanks everyone.
Title: Re: Starting Epclusa on Tuesday
Post by: rk on October 05, 2016, 12:03:29 am
Since most Epclusa members post here I have a question that seems related to most treatments. If you take a morning dose do you drink water into the night? If you take a nightly dose do you drink water into the early morning? Do symptoms like being tired, ache, brain fog etc in general last all day; whether you take a morning or evening dose?  I need to decide whats best for me. I am retired & not really pressed to do much of anything day or night. I am up probably up three times a night due to prostate issues. I would like a little more clarity if you will please? I am due to start this Thursday or Friday. Epclusa is being delivered tomorrow 9/5/16

Thanks Rod
Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on October 05, 2016, 05:34:17 am
Hi Rod, I already finished my treatment with Harvoni  this year but what I gathered from the forums was that everyone is different & it was all over the map when they would choose to take the meds. For me personally I took @ mid day. I was sharp in the morning & wanted to get all the things done before I got kind of tired or needed to take it easy. You may not get headaches like some of us but the water seems to ease that. Sipping small amounts throughout the day helped me. I was taking large amounts at the beginning & changed that pretty fast. I heard a lot of people taking it at night because they worked & some taking first thing in the morning too. Good luck to you ...rosie
Title: Re: Starting Epclusa on Tuesday
Post by: MommaT on October 05, 2016, 07:04:35 am
hello everyone!

Thank you Mw-you are so right!-I have to be happy for what I can do! And ease up on myself-especially the forgetfulness. Thank you for asking, my husband is doing good and is back to work. I cannot wait for news of you labwork! Fingers crossed!

Welcome Rosie and Rod!-  I think timing of taking meds all try individually. I can see taking at night and drinking is a good question! Someone here have taken at night. I was most worried my stomach issues history so to wait until 10am. Well after coffee and good breakfast. I didn't want to take any antacids to interfere. As for symptoms mine are Brain fog, I drink from time I get up until I go yo sleep-little throughout day in sips.Keep a gallon Jug on kitchen counter and I like it!

I feel no different and have same chronic pains and health issues I did before treatment -and try to continue to take care of them. I am not sure if it is Epclusa or just stress but I do panic once in a while. That is where this site helps me. Just to know I am not alone. Good luck and I am so happy you will be starting treatment soon! You will figure what works for you! I wish I knew about prostate but sounds like you get up in the night! I fall asleep but get only 4-5 hours even before treatment. Benadryl acts like a charm!

Terry
Title: Re: Starting Epclusa on Tuesday
Post by: rk on October 05, 2016, 01:32:19 pm
Thanks Rosie & MomaT, it seems like sipping may be a better way to go. I think I drink a gallon now except quicker and not quite as spread out. I keep 2 gallons in the fridge but most of the day drink filtered tap from a 20 oz glass. I'll start keeping track, thanks again. Rod
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on October 06, 2016, 08:07:22 pm
Hello Friends!
Momma T- Thanks for thinking about me. Yes, I do believe our Dads are cheering us on and are going to be right there through everything!
I am getting my 2nd bottle tomorrow, and am going in on Tuesday for the first months labs. Can't wait!
I take my meds at 7:00 at night. I do drink a gallon of water a day. I have 4 separate liter bottles. I drink one before going to work, one at work before lunch, one in the afternoon and one at night. It works for me as I have not had any side effects except a few small headaches in the first few weeks. I don't drink water in the middle of the night, but I do get up to go to the bathroom a few times.   :)
Thanks to everyone here! Your support means the world to me!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on October 07, 2016, 02:17:29 pm
Hey everyone,
    Hope you all are well.  I have some moderate brain fog today but pushing through. I start my 2nd bottle today and also saw my doctor and did the 4 week lab tests, now just waiting on the results. My doctor is not too knowledgeable on epclusa, as I am his only patient on it. So thank God for you guys or I wouldn't know what's normal and what's not. And thank God for Google, lol. Have a great weekend!
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on October 11, 2016, 07:20:18 pm
Hi Friends - Just checking in to see how everyone is doing. I had my 4 week labs today, so we will see soon how everything looks. Starting my 2nd bottle tonight as well.
I hope everyone is doing well!
Mw - What are your lab results? I am sure they are awesome!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on October 12, 2016, 05:55:48 am
Hello everyone,
    4 week labs are in...Undetected. ALT and AST decreased to 19 for both. Everything else is normal as well. I'm sure all of your tests will be great also. Keep the hope going.
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on October 12, 2016, 07:38:20 am
Great news Mw! Glad to hear it.
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on October 12, 2016, 11:15:57 am
Thanks Phoenix! You're up next.
Title: Re: Starting Epclusa on Tuesday
Post by: rk on October 12, 2016, 01:56:39 pm
Mw

I'm glad to hear the great news. You seemed kind of concerned about the melatonin. I was going to tell you my nurse said it was not just me, it interferes with absorption. I did not want to stress so I waited, good for you.

Phoenix, send us more good news
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on October 12, 2016, 03:20:37 pm
Rod,
   Thank you for all your information and help. Since last week, I have taken nothing for my insomnia in fear of contradiction. So you really helped me. Thanks again.
Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on October 12, 2016, 05:05:58 pm
MW! Great UNDETECTED news! look at those liver enzyme numbers too! Most healthy people would love those #19's. You are well on your way. so happy for you!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on October 12, 2016, 05:12:28 pm
Thanks so much for the support Rosie!
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on October 12, 2016, 06:52:29 pm
Thanks! Had my labs done yesterday, just waiting for results!
Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on October 12, 2016, 11:14:33 pm
Me, the feeling I get from hearing another person has "slain the dragon" is euphoric ....Even though this is 4 weeks results my Dr. told me the percentage of patients that have your numbers speaks volumes on your positive outcome. These drugs are incredible. I was undetected @ 4 wks. also & I think I kind of settled down & just knew everything was gonna be alright! Phoenix , we can't wait to celebrate with you in a few days!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on October 13, 2016, 03:43:15 pm
Momma T and Shannon, how are you ladies doing? Phoenix, any word on your labs yet?
Title: Re: Starting Epclusa on Tuesday
Post by: MommaT on October 14, 2016, 09:32:17 am
Hi MW
 I just saw you got a CLEAR at 4 week! YEAH! What labwork script did you get? Mine is just HCV RNA Quantitative PCR. I hope it shows ALT/AST cause mine is crazy high! Thank you for all your encouragement! I really am all over the place emotionally and love the time of day like now-I can feel and think straight-until I take the Epclusa! I will see Dr Thursday and call Gilead today how to adjust time-Just wish I had started at night!  My only reasoning was concern over my stomach upset which I tend to get easily and taking no other meds with the Epclusa. I think they would all be approved so I  may have screwed up cause..... I would rather sleep through this if possible!

Keep up the good vibe-you are so encouraging. We will beat this thing! Oh love the Brain fog is the Good killing Hep C ! Never thought of it that way!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on October 14, 2016, 10:10:52 am
Hey Momma T,
   The hcv rna quantative pcr is only going to be viral load. For your other tests like liver enzymes, you would need the liver panel done. My doctor ordered 3 tests. But maybe your doctor only wants your viral load right now. Yes, they will better inform you on how to change your time but I know it can be done. The fog will lessen soon. I am still tired sometimes but that's just the medication I suppose. Keep on pushing!
Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on October 14, 2016, 12:23:43 pm
Re: changing your time .....HepC team told me that you can change time by moving about an hour a day till you get to goal time. Hope this helps. I did this & it worked out great.
Title: Re: Starting Epclusa on Tuesday
Post by: MommaT on October 15, 2016, 07:57:58 am
Hi Rosie!

I take the epclusa at 10am. Thank you for your inputl-so hour to hour is what Gilead said. I wonder what that means. I hope it is hour later each day? Like waiting to 11AM then 12pm 1pm 2pm 3pm 4pm 5pm 6pm 7pm 8pm-that would take (easy 10 days to adjust) Or very hard 9am 8am 7am 6am 5am 4am 3am 2am 1am 12am 11pm 10pm 9pm 8pm-(that takes 2 weeks) Would mean taking it backwards throughout night!
Hope to figure out soon! Just wish I could do it in a day! Have good weekend Rosie!

Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on October 15, 2016, 10:15:00 am
Hi Momma T. Yes, you are right . It is a pain if you are making a big change but that's what I did  to change to noon  from early morning. I was waking up so energetic & wanted to use my new found surge to get some stuff done before I went down into the "rabbit hole" for a few hours! I would get pretty dizzy & sluggish for about 2 hours & then slowly get with it again. Also something to remember.... our body is working so hard the first part of your treatment to kill the bad cells that it's no wonder we are exhausted. I did not feel tired the whole time . It gets better! I had a nurse that was working for my specialty pharmacy that counseled me on the time change issue. It would be interesting to ask about  Epclusa too. Have an awesome day EPCLUSA WARRIORS!
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on October 15, 2016, 06:25:50 pm
I started epclusa yesterday, today is a second day and no any side effects so far...I even wondered to myself if drug is really working... ;D I hope this condition will last to at least half of the 12weeks treatment.  I am taking pills around noon, because first part of day I should be way focused on my job, which  gets easier in the afternoon, and I can leave in case of sickness or dizziness occur. Eating healthy as always( no junk/fast food at all), drinking 2-3 liters a day ( almost a gallon). Staying optimistic, because good mood and positive attitude  will help me to get rid of this monster!
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on October 15, 2016, 07:20:08 pm
Sounds all good, Bluebird.
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on October 15, 2016, 07:30:29 pm
Keep us updated and best wishes Bluebird!
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on October 15, 2016, 09:29:13 pm
Hi Friends - Welcome Bluebird! You have found a great place to be!
I had my 4 wee blood work last week. My VL started at 22006116. At 4 weeks it is down to a mere 36. It's not UD, but it's close! At first I was not happy that it was not a big fat 0. But, it's a huge drop!
Congrats Mw on your UD!!!!
Keep it up everyone, we are doing great!
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on October 15, 2016, 09:39:42 pm
My VL was 18 at 4 weeks, Phoenix (Harvoni) - down from 1.1 million at the start.
(... Must put some stats up!).

I was UND at EOT, and then again at 12 weeks post-treatment (Yay!!!).

... Lots of people still seem to have a bit at 4 weeks.



Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on October 15, 2016, 11:15:04 pm
Thanks Andrew! It's not a big deal to have a few stragglers, as long as they are gone at the end!
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on October 15, 2016, 11:59:07 pm
Indeed.

Title: Re: Starting Epclusa on Tuesday
Post by: rk on October 16, 2016, 02:10:04 am
Phoenix & Andrew,  Both of you were down to just a few. It kinda makes me wonder how they were missed. How did they hide and escape sudden death? lol I think they stay holed up, and fight to the end. Its like an inner body WWII. ha ha ha
Obviously I am easily entertained.   
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on October 16, 2016, 09:37:00 am
I will find them, Rk. Their days are limited! I am the HCV sniper and they will go down!
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on October 19, 2016, 09:49:55 pm
Good evening to everyone!

 It is so exciting ( especially after long day at work) to read positive comments about  your treatment going well. I am happy for everyone who got negative  blood results just 4 weeks after the treatment has been started. It is amazing! It has been almost a week since I started taking epclusa. No any side effects yet. I hope the drug is stronger than a virus, because i feel absolutely no changes... just like i am taking a vitamin pill.  Does anyone else experiencing the same?
 I  am so glad this site exists:)
Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on October 20, 2016, 12:03:33 am
Bluebird is kicking ass & taking names! SOOOO HAPPY for you!
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on October 20, 2016, 07:36:25 am
Hi Bluebird - Congratulations on completing your first week! I am in week 6. There were a few headaches in the first couple of weeks, but feeling good ever since. I have noticed a change in how I feel. For the better for sure! We are taking powerful drugs, so it is working!
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on October 20, 2016, 07:46:27 am
Hi Phoenix! Good job! I noticed some changes too, like an  elevated energy level. If I felt tired for last couple of months, couple days after I started Epclusa - I feel not being tired after10 hours shift. Honestly, sometimes I force myself to get into a bed to rest( thinking it should be a part of treatment, not to overwork yourself). I think it could be an indication that virus count slowly, but surely drops. Not sure, but I like to think that way! Have a fantastic day, everyone!
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on October 20, 2016, 07:55:24 am
Thanks Rosie! Lol! We are going to kick ass and take names together!!!
Title: Re: Starting Epclusa on Tuesday
Post by: KimInTheForest on October 20, 2016, 09:49:21 am
Good luck to all of you on the new drug Epculsa! Wonderful to see this thread.

kim
Title: Re: Starting Epclusa on Tuesday
Post by: MommaT on October 20, 2016, 12:15:22 pm
Welcome Bluebird!
I am so happy you started Epclusa and have no side effects! That is GREAT!

Hi Kim! Welcome to our group and sure you can give us some great input!

We all started this Epclusa Adventure together with all different experiences! I am so thankful just knowing I have the support from these great people on this forum!

Thank you All!
Title: Re: Starting Epclusa on Tuesday
Post by: rk on October 20, 2016, 01:07:16 pm
Hi Bluebird,

I started a week earlier than you. At first I had some brain fog but it is very minimal now if at all. I also had an abundance of energy the first week but it is minimal now as well. Now I feel fairly normal and I hope it continues.
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on October 20, 2016, 05:49:52 pm
I am glad that you are doing fine. Since we have started almost at the same time, we can check our results at the end of the treatment. My dr has never told me that I have to do blood test in the middle of the treatment.  I may call in the couple of weeks and ask her about it.   ;) have a great evening!
Title: Re: Starting Epclusa on Tuesday
Post by: MommaT on October 20, 2016, 08:16:50 pm
Hello Everyone!
I saw my Dr today and good news is my Viral Load is less than <15! She said Hep c still detected but, that she expected from the Cirrhosis.  She totally went through my file and alleviated alot of my fears of some of my oddly high numbers.

My meld score is a 6. If I get through this I wonder if Compensated Cirrhosis is reversible? I don't drink or smoke and eat really well. Next week I am half way through
and see the light at the end of the tunnel.

Today was a good day! Keep up the good fight! I know it feels like a Roller Coaster!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on October 20, 2016, 09:28:23 pm
Hi MommaT

I've read a scientific report showing compensated cirrhosis was reversed in a significant number of those who cleared the virus. Not as high a percentage as those regressing from F2-->F1 for example. But seemed significant percentage. It does take some time from after the virus is cleared. Which in your case is obviously headed there

I hope I could find the report. I'll link to it if I do

Unfortunately, reports of fibrosis/cirrhosis regression do not give lifestyle factors which influence the success of regression. But I'm sure hoping its more than just a matter of genetics or luck. I too am very interested in such regression, because I'm F3

I'm also hoping that with so many more clearing this virus than ever before, there'll be intensive interest n research on fibrosis/cirhosis regression.

I'm waiting  a few more days before starting the Epclusa, because I'm having a bout of  horrific insomnia, and waiting for that to settle some before embarking on that journey. Will definitely keep you posted.

-elias
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on October 20, 2016, 09:36:27 pm
Congratulations, MommaT! Baby steps.. Slowly, but surely you are getting there. Don't loose the hope. I have the same expectations from treatment too and same hope!!!!!!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on October 20, 2016, 09:41:50 pm
Hi again, Epclusa Family:

To: MommaT:

In the meantime , heres one link of cirrhosis regression. Though its not the one I had in mind which gives more statistical detail and charts..The one i had in mind was a presentation at a recent Liver Conference.

There's another such conference coming up -I think in Boston-early this November. So hopefully, more on all this will come forth

But for meanwhile:

http://www.medscape.com/viewarticle/839337_3 (http://www.medscape.com/viewarticle/839337_3)

Congrats on your four week victory
Title: Re: Starting Epclusa on Tuesday
Post by: elias on October 20, 2016, 10:32:10 pm
Anna Maria Crissien's report at AASLD Conference 2015 :

http://www.hcplive.com/conference-coverage/aasld-2015/qa-with-ana-maria-crissien-from-scripps-green-hospital-studying-regression-in-liver-disease (http://www.hcplive.com/conference-coverage/aasld-2015/qa-with-ana-maria-crissien-from-scripps-green-hospital-studying-regression-in-liver-disease)

Worth looking at the actual report if youre stickler for details. Cant find it yet
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on October 20, 2016, 10:39:01 pm
Awesome Momma T! Great news indeed. We both have a few pesky ones to get rid of. I started with a VL of 22 million and after 4 weeks its down to a mere 36. I am sure in the next few days it will be long gone for both of us if it's not already!

You are right about feeling like a roller coaster!
Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on October 21, 2016, 04:45:51 pm
Hey Momma T! I know there are some very wise people on here that know about cirrhosis . I had a fibro score of F3 & was told that it would take quite some time to heal & have a better score. But on my 24 week final appointment @ Mayo Clinic they were celebrating my score which went to F1! You sound like you have all your lifestyle choices perfect so don't be surprised to get a better c # too. Asong as you feel good those numbers are just that ...
Title: Re: Starting Epclusa on Tuesday
Post by: rk on October 21, 2016, 11:17:48 pm
bluebird,

Sure we can compare results but at the end we should both be undetected! You can enter your labs in the sig file at the end of your profile. I imagine your doctor will order at least 1 lab before end of treatment just to make sure all is well. I get my first lab results next Tuesday. My vl was low to start. Do you know your results from when you started? If you do not know ask, it should be available.
Title: Re: Starting Epclusa on Tuesday
Post by: elias on October 22, 2016, 10:14:48 pm
Hi:

I just took my first Epclusa!!

Proud to be joining this little Epclusa family here. And thank you Phoenix for starting this thread.

I spoke to my GI and he said that once virus is cleared, many regress a few levels on the fibrosis scale.  Some even back to normal. Because the liver is the most self-regenerating organ. Intuitively , I feel there are concrete things we might do to improve those odds of healing. So hope to learn more about this. Thank you Rosie for confirming this liver "self-regenerating" concept a few days ago.

My GI scripted me some low-dose diazepam , since I fear anxiety and insomnia the most. but this group will help me more than the benzo. Hope I wont need it.

It's been an incredible journey so far. This little group is kinda making history, because we're "first generation" to be taking this wonderful medicine.

I'm hopeful, though a tad nervous. Happy to be joining you all

Will keep you posted

~elias
Title: Re: Starting Epclusa on Tuesday
Post by: rk on October 22, 2016, 11:02:47 pm
Hi Elias, welcome to the family. My doc said the liver heals but never mentioned by how much. I imagine that is individual. Were similar with anxiety & insomnia. I mellowed out after I started. My regular doc gives me a script for diazepam but my Hepatologist said try to avoid.

I am on my third week. When I started my brain felt buzzed about an hour after a dose. It was really brain fog setting in. Then after 10 days or so I do not notice anything after a dose. My thought process seems fairly normal. I suppose we are pioneers to epclusa however the ones before us are the real pioneers. I'll give them a nod, I would not have wanted to be in their shoes. Best wishes to you and everyone.   
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on October 22, 2016, 11:31:17 pm
@rk- added my numbers...
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on October 23, 2016, 09:18:51 am
Congratulations Elias on your first dose!! I know it feels so good to start treatment. You are well on your way! Keep us posted on how you are doing.
Title: Re: Starting Epclusa on Tuesday
Post by: sammantha55 on October 23, 2016, 03:18:14 pm
Elias, congrats on starting your first dose, keep us posted on how you're doing, I'm right behind you in about a week .
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on October 23, 2016, 05:03:49 pm
Hi Elias,

I only noticed on Thursday that you had been approved for Epclusa!
These threads can be weird like that, can't they?

... Of course, I was over the moon!

I am so pleased that 'the system' worked for you as it should, and hope (of course) that you have a smooth and uneventful ride through treatment.

Best wishes,
A.
Title: Re: Starting Epclusa on Tuesday
Post by: elias on October 23, 2016, 08:30:09 pm
Thank you , Phoenix, Samantha, Andrew

I did have some symptoms last night a few hours after I had taken my first Epclusa.

They werent anything new, just more intense forms of things already bothering me prior to all this. Things like hyperaccusis, meaning sounds seem louder than they actually are.  Same with visual stuff..I'm in general prone to it. Hard to say yet if these minor things are placebo/nocebo effects. There are also some positive effects. I slept really well last night and many hours. Feel more energy today than in long time.. Someone noted I seem much better. Still too early to tell.

Andrew said:

Quote
I am so pleased that 'the system' worked for you as it should, and hope (of course) that you have a smooth and uneventful ride through treatment.

The system did work. But probably because for years the HCV advocacy movement had taken on the  insurance companies and were prevailing in the courts. So kudos to all who laid that foundation.

I'm using this little biofeedback gadget-Resperate- which slows down your breathing to help with insomnia. Its a bit overpriced, because its marketed to lower blood pressure. But can be used for other issues. Too early to tell if its helping  me with the psychological type symptoms.

Will keep you posted
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on October 23, 2016, 09:21:46 pm
I was full-blown symptomatic for years, Elias - incl. anxiety (of course).
Sleep was shallow, fitful and patchy for all of those years.
Vulnerability.

As treatment progressed, my sleeping got better, and now, 5 months post-treatment,
I'm sleeping like a baby - albeit, an aging and slightly wrecked baby!
Hopefully the same might happen for you?

P.S. I lost touch with you a bit there.
I had hoped your approval would be reasonably straight-forward?!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on October 23, 2016, 09:33:56 pm
Andrew:

The approval in my own appeal case was straightforward. Took only~ 3 days!!

My point was that they might not have gone along with the appeal so readily had there not been an overall climate of courts ruling in favor of patients in such cases. And for that I thank the advocacy movement.

I dont think my chronic insomnia is due to Hep C. I can think of many early life events that had brought it on , but dont know for sure. Since I've had the virus most of my life
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on October 23, 2016, 10:07:02 pm
Yes - I got that.

... Well then - just hoping that your sleeping gets better.
Insomnia: It's a bad business.

Thinking of you,
A.


Title: Re: Starting Epclusa on Tuesday
Post by: elias on October 23, 2016, 10:18:32 pm
It's not just insomnia, Andrew. Its a lopsided circadian rhythm whereby my natural tendency is to be up all night and im always tired in the morning.

If it should turn out this might be some obscure symptom of HCV and it resolves as liver heals some, this would be quite an added boon.
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on October 23, 2016, 11:28:25 pm
Yes ...

Is your condition understood in the medical world?
Title: Re: Starting Epclusa on Tuesday
Post by: elias on October 24, 2016, 12:08:58 am
well, it does have some medical name: "Delayed Sleep Phase Disorder", but that doesnt mean they really understand it. many treat it with melatonin and/or special type lamps. i simply find ways to work around it
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on October 24, 2016, 12:16:17 am
Yeah ...
Title: Sos, forgot to take epclus at noon
Post by: bluebird on October 24, 2016, 07:58:24 pm
What should I do?  Scared!!!! Does anyone know?
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on October 24, 2016, 09:21:46 pm
Don't know what time it is in the U.S.
I'm in New Zealand.

The liner notes that come with the meds will tell you.

Harvoni: I think it was take if you are within 18 hrs of yr. normal dose, otherwise wait, and take at your regular time [tomorrow].
Epclusa - I'm not so sure.

If you haven't got time to ring Gilead (or it's outside of hours) and you're say 8 hrs or so late, I'd be inclined to just take it now, and resume normally tomorrow.

Not gospel - but a reas. good guess, I think.
Title: Re: Starting Epclusa on Tuesday
Post by: elias on October 24, 2016, 09:30:03 pm
Bluebird:

From Gilead Onward Program:

"Make sure to talk to your Hep C Specialist if you have any questions about treatment. You can also talk to a live nurse 24/7 at 1‑844‑4‑EPCLUSA (1‑844‑437‑2587). "

So, it seems their nurse counseling is 24/7. They will ask you for lots of information, but well worth it in questions such as "missed dose
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on October 24, 2016, 09:38:06 pm
That's good advise, Elias.

(If you can't get through):

Bluebird - I've just checked two sources.

It's the same as for Harvoni (again - your liner notes will confirm this)

i.e. take if you are within 18 hrs. of yr. normal dose, otherwise wait until tomorrow's regular dose.

If my calculations are correct, you are now 9 1/2 - 10 or so hours late?
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on October 24, 2016, 09:51:26 pm
Just received my epclusa in mail today! Now what? Do I take at night? Or another time of the day? How do you drink water all night?
Title: Re: Starting Epclusa today
Post by: Pepperann on October 24, 2016, 09:58:58 pm
Trying to figure out how to post in this forum!
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on October 24, 2016, 11:12:55 pm
Pepperann,

There is an initial or first page for this forum. It lists all the main subject headings (e.g. 'I just tested positive for Hep C ...', 'Considering Hep C Treatment', etc. ...).

Click on one of these subject headings, and another page will open up, with all the posts for that subject
(you will of course have seen one of these pages already) ...

At the top of the page is a paragraph headed 'Welcome'.
At the bottom of this para there are a few small boxes you can click on.
One of these is highlighted in blue, I think it is: 'New Topic'.
Click on that!

(Hope this makes sense?!) ...
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on October 24, 2016, 11:45:18 pm
Thank you, guys, for advises. I posted it while on the phone with Gillead and briova( special pharmacy). I think I had a panic attack. Right after I finished my dinner suddenly I realized that I forgot to take a pill around lunch time, at work. It was so not like me, because I organize my day before the" magic" pill and after. I provide enough water last me till noon, and literally wait the time I will take this pill, then I go to lunch. Well, the weirdest part is not that I forgot to take it at 12, but I haven't thought about it after 12 at all. Normally, when I take epclusa I am trying to focus on my Condition and I notice if any changes or side effects occurs, but somehow not today.  Maybe it was what you call "brain fog"? Anyway, first thing I did called to Gillead and got a nurse, who was reading me an instruction on epclusa and it's side effects. I tried to stop her several times saying that I know all about it, but I need to know should I take it now( 6 hours delay) or wait till tomorrow noon? She said " I understand" and continued reading general info about epclusa. At the end she said she can't answer my question and I need to contact my doc or a pharmacist.i called briova rx and pharmacist told me to take it immediately ( 6.5 hours)delay. He also said an interesting thing that for the first 30 days delays like mine don't really matter, but try to avoid it in the future, after the first month of taking it. I am going to set an alarm in my iPhone, I feel like can't rely on my memory anymore...
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on October 24, 2016, 11:56:56 pm
Phew!!

... Now I can relax!!

Title: Re: Starting Epclusa on Tuesday
Post by: rk on October 25, 2016, 02:44:40 am
bluebird, I'm glad you got that handled. I would suggest to start a ritual of sort to make sure it does not happen again. Have something that leads up to taking the pill then check off that you took the pill. What ever you like. Personally have a small amount of yogurt or a banana then take the pill. Immediately after taking the pill I put a check mark on my calendar. Sometimes I may forget if I took a med but the check mark proves I did. Most med's I rely on memory but not epclusa. I prefer to think there is no room for error. I do not want to redo a course.

One may get answers using onward, may, however listening to their disclaimers is a test of patience. Good luck with that
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on October 25, 2016, 09:40:55 am
Thank you, RK!  I definetely will change something for not to repeat my mistake :D
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on October 25, 2016, 04:41:03 pm
Bluebird,
    I agree with rk. I take mine immediately after or before dinner, whichever comes first at 530pm. But sometimes I go over and over in my mind, "did I take my pill?" Lol. Or another idea could be to get a weekly pill container for everyday of the week and set it out where you can see it. That way you can be sure you took it everyday and if you forget you'll see it and remember. You could put it near your toothbrush or something. Or set your phone alarm like you said.
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on October 25, 2016, 07:54:58 pm
Pepperann,

I haven't noticed any posts from you.
... Maybe my instructions weren't that good?

Again - It's Go to the 'Subject Heading' board; click on the subject you want to post to (in your case it might be 'On Hepatitis C Treatment'.
... When that page / screen opens up, you'll [of course] see all the posts for that subject.
(You must have done this already in order to get in here!).
About 1/3 of the way down the page (at the bottom of the blue 'Welcome' paragraph at  the top of the page (and above the list of posts for that subject), are some small icons.
One is highlighted in blue: 'New Topic'.

... Don't know if that's any better than my first attempt?!

Anyway - in answer to your question:

It doesn't seem to matter when you take your Epclusa, AS LONG AS YOU TAKE IT AT THE SAME TIME EACH DAY.
... 'With or without food' ...

Some people seem to prefer taking these meds with food (It seems to dampen down any slight queasy feelings that may come up).
So it's up to you: Breakfast-time, with lunch, or dinner.
It used to be recommended to take DAAs (this class of meds) first-thing, with breakfast - but lots of people prefer lunch, or dinner time.
I used to take my meds (Harvoni) at night, with dinner (9 p.m.)

Without food is also OK  ...

Expect to feel thirsty - and drink however much water you want to (within reason, of course!) ...

(Everything you need to know is in the liner notes that come with the meds) ...

Hoping this helps.
Post again if you need to.

Best wishes,
A.
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on October 25, 2016, 08:31:12 pm
Hello to everyone! You know what is funny? First thing I do after work( while cooking dinner ) is checking this site, on how are you doing and some new posts. We really became a family here, because we learn from each other. I noticed a lot of moderators here are more knowelegable than some Drs., because of personal experience they have gone through and constant updates with new research. But here is what  I was wondering about-Have you been told to be on special diet or have restricted foods since you were diagnosed with hep c and fibrosis/cirrhosis.? My doc told me I can eat anything I want, And no alcohol ( which I don't drink anyway), but I did my own research and found that diet is very important. For example, if you have damaged liver you should be avoiding salty foods, snacks, butter, sweets, cakes,red meat, fries, bacon, white bread and etc. I have a list on the fridge, if someone is interested I can post it here. I followed it for last month and lost ten lb. ( I weight now 108). I would like to hear your opinion about foods! Have a great eve!
Title: Re: Starting Epclusa on Tuesday
Post by: rk on October 25, 2016, 10:25:33 pm
I did my own research and found that diet is very important. For example, if you have damaged liver you should be avoiding salty foods, snacks, butter, sweets, cakes,red meat, fries, bacon, white bread and etc. I have a list on the fridge, if someone is interested I can post it here. I followed it for last month and lost ten lb. ( I weight now 108). I would like to hear your opinion about foods! Have a great eve!

Bluebird

We should be avoiding them anyway but saying & doing can be two different things. Diet effects more than the liver but I get your drift. For the most part I do fairly well although I tend to overeat. Loosing 10 lbs in a month though is dedication especially for your size. I walk & exercise a fair amount and I am still working on the first ten lbs. :(  I am doing better) Glad to hear it is working for you.
Title: Re: Starting Epclusa on Tuesday
Post by: elias on October 25, 2016, 10:27:18 pm
Quote
My doc told me I can eat anything I want, And no alcohol ( which I don't drink anyway), but I did my own research and found that diet is very important. For example, if you have damaged liver you should be avoiding salty foods, snacks, butter, sweets, cakes,red meat, fries, bacon, white bread and etc. I have a list on the fridge, if someone is interested I can post it here. I followed it for last month and lost ten lb. ( I weight now 108). I would like to hear your opinion about foods!

Hi there, Bluebird:

I too am very interested in this. More broadly, in the larger issue of changes we can make even now to help our livers recover from fibrosis/cirrhosis after treatment .

Seems this often does happen anyhow, once the HCV is cleared. But to varying degrees. and unfortunately not all improve. So are there things we can be doing to optimize this healing? Intuitively, I think so.

Diet, exercise, stress reduction. Hopefully. We won't find as much scientific studies on this as on  more quantifiable epidemiology. Lifestyle changes are a bit harder to quantify and study than e.g. success rates in clearing the virus are. So it would be good to have a section on this within this forum. Hopefully, both those knowledgeable in this as well as those who  have had personal success in healing their liver to lower fibrosis/cirrhosis levels would offer advice on this?

By the way, the dietary changes you mention are some of the ones I'm  undertaking now. Those are part of the approach to insulin resistance.  I have mild case of that. So maybe diet for liver healing is along those lines? But there's probably much more to it . And exercise is leading component as well.

I'd rather focus on healing the liver after HCV  than on viral loads. Though I'm afraid obsessing on the latter is somewhat inevitable now. I'd love to learn more about these issues.
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on October 25, 2016, 11:57:51 pm
Listed below are the cure rates for genotypes 1, 2, 3, 4, 5 and 6.

The results below included patients who were treatment naive and treatment experienced

Epclusa for 12 weeks – no ribavirin in patients without cirrhosis or with compensated cirrhosis

Genotype and cure rates:

Genotype 1:  98% -(323/328 pts*);  Genotype 2: 99.5% (237/238 pts); Genotype 3: 95% (528/553 pts); Genotype 4: 100%  (116/116 pts); Genotype 5: 97%-(34/35 pts); Genotype 6: 100% (41/41 pts)

*Genotype 1a cure rate = 98% (206 of 210 patients); Genotype 1b cure rate = 99% (117 of 118 patients)

Epclusa plus ribavirin for 12 weeks in patients with decompensated cirrhosis:

Genotype        Cure Rate

1a        94% (51/54 pts)

1b        100% (14/14 pts)

2          100% (4/4 pts)

3          85% (11/13 pts)

4          100% (2/2 pts)

Note:  no genotype 5 or 6 patients were included in the above study of decompensated cirrhosis patients.
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on October 27, 2016, 12:44:09 am
Thank you Andrew & Bluebird,
For the help & the welcome! I was on my cell phone and now on my 1pad. The desk top is easier. It is nice that there are other people with gen 3a. I went to see my Dr. To get a liver check up in August 2016 and he said that the drug we have been waiting for is here. It is time! I was denied  treatment twice and appealed, it was over turned pretty quickly. So fast I was on the phone last week and it was on my front door step on Mon Oct 24th. I thought I might have to get legal council as I have heard some people have gone that route and that is why it is making it easier to be approved and not makings all of us wait until treatment is critical. My cognitive has been effected for about 8 years. It was like I smoked a dube and everything was on the tip of my tongue. So frustrating and embarrassing. Everything was a thingy ma jig! I thinking about taking my dose at 7pm. Enough time to snack and drink
Lots of water. Thinking of taking 1st dose November 1st. I feel like I have been waiting so long that I need to mentally prepare myself. Anyone else go through this? I pretty much felt like a zombie on Monday when I received epclusa. Stressed me out sooooo but I on the other hand feel very grateful. I wonder what life after hep c is like. I work like a crazy person and then have to rest. I have good energy then hit a wall. My Dr. Says I will feel better after treatment. I have heard very few comments on this. Anyone have any story's To share?
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on October 27, 2016, 01:56:38 am
I have lots, Pepperann, but for now -

Yes - I was all adrenally when I got my meds, and had to take a couple of days to sort-of reorient myself and prepare for the fact that I'd be starting treatment ...

Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on October 27, 2016, 07:25:03 am
You are welcome, Pepperann! I took my first pill right on the next day I received it after a long battle with an insurance co and a specialty pharmacy. I felt like I couldn't wait any longer, because my liver is in trouble! I was mentally prepared to any side effects! But I have no side effects, and 13 days passed with no symptoms which makes me happy. I noticed that I have more energy now than before I started treatment, but still trying to not to overwork myself. You need good rest, healthy diet and positive attitude. Now, when we have it- what are we going to loose? Fight for now! What would be life after? I was told by my Dr that they will be monitoring my health 2 years after the treatment of hep c even if virus will go undetected. To be sure it is completely gone. I assume I will be staying on diet to the rest of my life, since I already have beginning of cirrhosis and want to live longer. Say Goodbye to French fries!
Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on October 27, 2016, 01:39:38 pm
Hi Pepperann, can I relate! I worked so hard last year to try to get Harvoni...when it arrived I was scared to take my 1st. dose. You read about all the sides & dread getting on with it. Every day you wait HepC is duplicating their evil cells. Everyday you wait to calm down is ok too. I sat on my bed & cried .I was so afraid because they gave me anti nausea meds too & I was dreading throwing up. It all was part of my journey & yours will unfold in the way it is going to go. I had no nausea & never took those meds. I had brain fog but HepC gave me the brain fog not Harvoni. I have been following the new meds & they are running very close to what my group last fall was experiencing. Head aches if not hydrated & tiredness followed by lots of energy as the disease was getting killed. I had terrible rashes before all over my face & now my skin is flawless. I cannot believe that HepC did that too! I trust that you will start in your time & do fabulous because we are all proof that this does not define us...it's just a small chapter. Stay strong...you got this!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on October 27, 2016, 08:36:13 pm
Thank you for being there ,
and responding to My post Bluebird & Rosie!
I am really looking forward to hopefully loosing the brain fog and fatigue!
I quit eating gluten, dairy, and red meat 5 years ago. Funny though I still eat French fries, little bit of sugar and a lot of coffee. I drink apple cider vinegar in my water.
Take a multi, probiotic, & silymarin (milk thistle) at bed time. This kept my numbers in check until this last vist my viral load doubled. So glad to finally have another way out of this devastating virus. I will keep you posted on how I'm feeling on the first couple
Of days!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on October 27, 2016, 08:43:34 pm
Hi Mw,
I am going to take your advice with 7 bottles for everyday of the week. I will dole out once a week! Great idea. Otherwise I can see me counting the whole bottle out when I'm not sure whether I took the pill or not!
Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on October 28, 2016, 12:57:55 am
I also kept a log of how I felt every day & when I took my pill . It's neat to see how coping & sides seem to  get better as you go along. I put a slash on the calender too every time I took my pill. Sounds like I was thinking I may forget! It worked out fine though as I had found a kitten that was run over the same day I started Harvoni. She was living but not thriving so we kind of went through this together. The noon hour worked for me so I could get things done in the mornings. I didn't stress on the water too much. I just sipped throughout the day.
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on October 28, 2016, 01:28:10 am
A calendar,
X the days down. That is a great idea!
Thanks Rosie!
Title: Re: Starting Epclusa on Tuesday
Post by: rk on October 28, 2016, 02:59:42 am
That's what I do. Take a pill then immediately put a check mark in the upper right corner, just for epclusa. For another med I take mid day I store it in small aluminum capsule. They are small and hold several pills. I got them on amazon if interested  https://smile.amazon.com/gp/product/B00SFIRJK8/ref=oh_aui_detailp
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on October 28, 2016, 08:14:08 am
I do it to! The special pharmacy sent me a pocket book with a calendar where I record the time of taking pill, a note and side effects in case if they occur. It is very handy! I just finished my 2 week! Happy ;)
Title: Re: Starting Epclusa on Tuesday
Post by: elias on October 28, 2016, 10:13:34 pm
Hi Epclusa family:

Finished first week of Epclusa.

Only difficulty so far was with sleep, as feared. Nothing new, but  somewhat more severe than usual. I often just lay there trying and sleep doesn't come. Holding off on taking the diazepam just yet. I've had some worsening of sleep even before starting Epclusa, during the havoc of the insurance dispute. So much was riding on that, and it threw me off.

Other than sleep, which is pre-existing issue, side effects are even less than taking an antibiotic!!

======================

Question about refills and specialty pharmacies:


Is the four week refill from time it was filled by pharmacy, or from time you actually started taking it? There was one week gap in my case. So much hoping its from time it was first filled. That's one week sooner, and so less risk of missing a dose in case the process takes time. Anyone know?
Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on October 28, 2016, 11:27:39 pm
My specialty pharmacy was awesome about all the details. While you still have plenty of pills you should call to confirm you need the week ahead. Mine were sent from about 100 miles away so they overnighted them each time. There are some nice sleep teas @ the health food store. I tend to be a night owl & when I am trying to get back to a regular sleep cycle I drink a cup of camomille tea or blend. Works every time!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on October 29, 2016, 12:27:28 am
Hiya Rosie:

The secretary in dr's office who works with insurance and pharmacy did say to call ~7 days before needing new bottle. But it wasn't clear if she meant 7 days before the 4 week mark of the prescription having being  filled or seven days before I actually run out. The former option gives me more leeway. And less anxiety.

It's sent to dr's office where I come to pick it up

Also: not clear if they need that 4 week viral load test before issuing new bottle. Because that would cut it way too close.  So I sure hope one isn't conditional on the other. Wasn't told that it was. Just anticipating ...

====

Thanks for suggestion about herbal tea. I'm afraid my sleep is too disordered for chamomile to do much. Its great that works for you
Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on October 29, 2016, 12:38:09 am
The specialty pharmacy just deals with you & the medication. Your Dr. will be the one doing the labs & you will be already into your next bottle before you know results.... for me that was about 4-5 days I think. They will send it to you ahead if you let them know of your concerns. I was so forgetful I was glad they were on top of it.
Title: Re: Starting Epclusa on Tuesday
Post by: elias on October 29, 2016, 01:42:32 am
Thanks much, Rosie..That would greatly simplify the logistics

PS: I notice you went from F2-F3 to F0

I'm very interested if people who achieve this had done anything special to facilitate this such as dietary changes, exercises, etc --aside from having the HCV cleared. I'm hoping there are things we can do to improve the odds and its not just up to chance.

(I'd like post this topic on more general section of this forum. But cant find one here on  post-tx healing in general)

Thanks again:

-elias
Title: Re: Starting Epclusa on Tuesday
Post by: rk on October 29, 2016, 02:08:34 am
Hi Elias,

I am reasonably sure the pharmacy goes by date issued. I started two days after issue. Then I called to give them 10 day lead time. They placed a reorder two days prior to my call so they went by the issue date. Its in your best interest to call on date issued. I posted this earlier but I guess it did not complete.

Rod 
Title: Re: Starting Epclusa on Tuesday
Post by: elias on October 29, 2016, 02:35:08 am
Thanks Rod

I'll call them a few days in advance of date issued and alert them I guess the "few days in advance" the secretary meant refers to that earlier date.

Was more than a week's gap with me between date they filled it and date I actually began the medicine, which is why I fret. But this way, makes it less risky in terms of missing dose(s)
Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on October 29, 2016, 11:56:54 am
Hey Elias, yes the Fibroscan from my final checkup @ Mayo Clinic was a total shock to my Drs. & me too. They had told me from the beginning that it takes a very long time for the liver to slowly heal from this disease I had for so many years. I was ready to just see the result not getting worse that F3. They could not find anything & we were high fiving for sure. I think as far as taking things during my tx. I kind of slowed down on supplements because of my fears about getting the heaves but always did  a standard daily vitamin with all the essentials including Vit.D. I tried to abstain from all the whites...like sugar flour & starches . There is a great liver diet on the forum that you could check out. If I locate it I will come back with where it is on here. Have a great day!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on October 29, 2016, 06:48:01 pm
Thanks, Rosie. Remarkable story. I've seen from the signatures of a few others here that they've had similar recoveries after HCV was cleared. I do wonder if there might be things one can do to help that along?

Haven't really found section on forum this fits into yet. Or maybe it ought to be created?
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on October 29, 2016, 08:44:20 pm
Welcome Pepperann! Congratulations on getting Epclusa. I noticed that you are taking quite a few supplements. Be sure to talk to your specialty pharmacy to make sure that you can take those with the meds. There are a lot of over the counter medications and supplements that interact with Epclusa. I just called and asked them about what I was taking. You can also ask them when to call and order a new bottle. Mine has been 7 days before I need a new one.

I am on week 7 and doing great. No sides except for a few headaches during the first couple of weeks, and if I don't drink enough water. I took my first dose the same day I got it. Too excited not to!!

I started t a VL of over 22 million and at week 4 it was down to just 36.

I am sure you will do well! 
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on October 29, 2016, 09:36:19 pm
Thanks Phoenix,
Yes my Dr. Said the same thing. I was taking those before to try and stay healthy. Now I'm barely taking a multi-vitamin.thanks for the info on re-order I will make a mental note on that! I was going to start last night and came down with the respitory flu. Husband is real sick and going to walk in clinic. I just have a dry cough. Anyone else have experience with being sick while on treatment?
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on October 29, 2016, 10:52:33 pm
Hi Pepperann - I have not been sick since starting treatment, which is amazing since my daughter had a bad cold and sore throat just last week. I work with young kids, and they have been sick as well, so I'm not sure why I haven't gotten anything, Knock on wood.  : )  You could always check in with the pharmacy and let them know what's going on. They will be able to tell you what you can take for anything while on treatment. They could tell you weather to start while you are sick or not. There is usually a 24 hour number to talk to someone. I have talked to them twice and were very helpful. I hope you fell better and get started on treatment soon!!!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on October 30, 2016, 12:25:15 am
Thank you Phoenix,
I was going to start Nov 1st but it seems after reading everyone's comments the side effects cannot be any worse than the episodes of fatigue I'm feeling now! I appreciate being able to read everyone's comments and it is nice to know that others are going through the same thing. I'm thinking I want to start tomorrow if I'm feeling better and I will take your advice and call the pharmacy. Feeling grateful today!
Title: Re: Starting Epclusa on Tuesday
Post by: Rosie13 on October 30, 2016, 01:14:38 pm
Grateful is the theme through out all this. Amazing new drugs, Doctors that are with us not against us, all the brave people who participated in the trials, our families . I had to leave off insurance companies even though they have learned we are a pretty tough & persistent bunch! Have a great Sunday!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on October 30, 2016, 04:28:13 pm
Thank you Rosie,
I have decided to start today at 7 instead of waiting till Nov 1st. Cold and all!
I will report any side effects for anyone who is just staring or is interested. I noticed a lot of people who were previously posting have waned a bit.  I hope because they are feeling good and living their life! ! Would love ❤️ to hear an update on how you guys are doing as I notice a lot of people read but do not post and some of us are behind you so we are curious!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on October 30, 2016, 05:29:50 pm
Hey Pepperann,
  I think it's a good idea to start now. I am on week 8. Sorry if I haven't posted as much, I'll be more proactive! I love reading everyone else's thoughts and feelings. I'm in week 8 and feeling pretty good. Last week was my first good straight week so I think I'm finally in the light at the end of the tunnel! Although my labs were undetected at 4 weeks, I was still feeling crappy some days. Mainly tired and worn down. I am still thirsty as ever though! I will not miss that when this is over! I hope everyone is well and wish you the best of luck!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on October 30, 2016, 05:40:43 pm
That is great news Mw!
Thanks for sharing. I'm on the countdown.
4 hrs to go!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on October 30, 2016, 05:43:11 pm
It'll go smoothly. I've done alot of research and reading and I have not found anyone who couldn't manage. You may get a few sides but nothing too crazy. I feel a lot better now than before. My energy is better. Keep us posted!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on October 30, 2016, 05:46:56 pm
Thank you Mw!
 I will! Glad to hear you are feeling better!!!Do you feel different
Kind of better? More energy in a different way or does it just feel normal?
 
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on October 30, 2016, 06:32:25 pm
I think it's probably a normal amount of energy. Before treatment my main side effect from hep c was extreme fatigue 24/7.  I also work 60 hour weeks so that contributes as well. I had pretty bad anxiety from being exhausted all the time. I was dizzy a lot and had insomnia as well. I just wanted to lay in bed all the time, I even seriously contemplated leaving my job bc I couldn't handle it with my energy level. Now that I feel my energy level increasing, I feel like I'm finally getting my life back and I'm overcome with gratitude. I have little to no anxiety and haven't taken a sleeping pill in 5 weeks. I feel good at work and feel better in my relationships with family and my fiancee. I was too tired for anything before, even a simple conversation. I actually feel normal! And it is awesome!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on October 30, 2016, 08:14:29 pm
Mw that is the greatest thing I've heard yet!!! My best friend did the old treatment and she never reported anything that positive. Did you have brain fog?
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on October 30, 2016, 10:26:50 pm
Hi All - Peppeann,  I am glad to see that you have started!! Keep us posted on how you are doing. I am at the end of week 7 and doing great. I still feel tired, but not as much as I was prior. I do have brain fog as well. It was pretty bad, but I do feel like it's a tad better. Having this for about 36 years, I thought how I was feeling was normal. It's great to be able to be on this treatment and start feeling better. Its going to be my "new normal" and it's awesome! I am very grateful. Some of us have had this for a long time. We are taking powerful medications and it will take some time for our bodies to heal. But heal we will!!!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on October 30, 2016, 11:38:09 pm
Thank you Phoenix for your support and everyone else. A lot of great information!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on October 31, 2016, 07:50:17 am
Pepperann,
   I wouldn't say I had significant brain fog before treatment.  I had days where I would do silly things or wouldn't be able to convey my thoughts effectively but I think that was caused by extreme exhaustion.  During treatment,  yes I did.  The first 2 or 3 weeks I felt like I drank a bottle of nyquil before work. It was terrible. But I haven't had a day like that in about a month. I think my body had a hard time adjusting.
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 01, 2016, 02:16:35 am
Thanks Mw,
Wow, I am shocked how great I feel 2nd day of taking Epclusa
Cold and all. I decided to take dose at 7pm. Could not fall asleep until 2am
Usually asleep by 11-11:30. Not sure why maybe because of cold. I thought I would feel crummy. I'm thinking the epclusa might be better taken earlier In the day. Mid morning. I'll have to see how I sleep tonight. It seems to give me energy. To soon to tell.
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on November 01, 2016, 04:46:49 am
Pepper and,
   Congratulations on starting! I hope everything goes great for you!
Title: Re: Starting Epclusa on Tuesday
Post by: Philadelphia on November 01, 2016, 06:52:50 am
For some people it takes a little period of experimenting to find the ideal time to take their meds. If you find they keep you awake, you can gradually move the time you take them to the morning and vice versa.

It's all about working out what works for you.

I used to put my tabs into a little old lady pill dispenser so I could see at a glance if I had taken them. I also set an alarm on my phone. Never missed a dose in 6 months because of those checks.
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on November 01, 2016, 12:13:19 pm
On my 5th week of Epclusa, GT-3. Don't even know I'm taking anything! - no side effects(maybe a few more naps ::)
Just got 4 week lab tests and the Hep C Virus is UNDETECTABLE already :o
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on November 01, 2016, 05:13:20 pm
Awesome news Strike5223! Congratulations!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 01, 2016, 06:40:46 pm
Hi folks

Been having really rough 3 days. Couldnt sleep. Then pain in different places. Seems I have a  bad cold, though I rarely get those. Hard to sort out what are side effects from what's my own insomnia and pain here

 Was hoping not to take any Aleve while on Epclusa, but called Dr's office and was told it wont affect the treatment. I really ought to take the Valium prescribed for anxiety/insomnia.  Was holding back on that too. But same dr prescribed it. Gilead said there's no known counterindication, and if same dr prescribed it, I cold go ahead and use it. If sleepless tonight, I will take some. No sense just suffering
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on November 01, 2016, 06:47:29 pm
Elias,
  Sorry to hear you are having a tough time. I also suffer from insomnia. Not sleeping is so horrible, especially when your body really needs it. If you feel comfortable taking the pills, take them. You need your rest. Your immune system needs it as well. Sleeping heals the body. Hope you feel better.
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 01, 2016, 07:36:12 pm
Thanks strike for sharing! That is great news!
So far so good. Elias I have cold to! I was told by the epclusa hotline to take
Ibuprofen. I'm with Mw, if your in pain take the pain med unless your afraid it is a slippery slope. Try the ibuprofen first. Sorry your in pain! Makes a cold that
Much worse! Hope you feel better fast!!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 01, 2016, 08:02:38 pm
I just wanted to share something I noticed after 2 days of takin epclusa. I have had this cold or flu that is isolated to my throat area. Dry cough and horse voice. I don't really feel feverish but took my tempature. I could not believe my eyes my temp was 98.6! My temp for the last 5 or 6 yrs has been 97.2-97.8! I was obsessed at the time to find out why my tem was 97.2 most of the time and finally gave up and attributed it to hpv and low thyroid. Also notice today that my second frozen shoulder is 98% thawed!!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 01, 2016, 08:25:17 pm
yeah. i took the aleve. still hurts some but better.

id have thought id have a high fever given how i feel but temp is normal. also have bad cough. ill assume cough medicine is ok to take.

 several things hurting at once and not enough sleep makes it worse. very hard to tell whats from epclusa and whats stuff i  had a while back thats being activated.

PS:
Aleve (Naproxen) is same family as Ibuprofen. so both are NSAIDs. I  only use it for very bad pain. I never needed anything stronger
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on November 01, 2016, 08:56:32 pm
I am glad to see you started Pepperann! It will take a few weeks for you body to get used to the meds. Everyone is different, so go with what is best for you. These meds are amazing aren't they? Nice to hear your shoulder is feeling better!
Elias - Be careful on taking over the counter medication. There are a lot of drug interactions with Epclusa. I haven't needed to take anything for a cold or other virus' that are going around, but I am sure the pharmacy can tell you what is Ok to take. Hope you are feeling better!
Congratulations Strike! Awesome news.
How is it going Mw? Week 8 starts for me tonight and feeling pretty good! Still tired and brain foggy though. It is getting better week by week. Onward we go!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 01, 2016, 09:00:13 pm
Hi Elias sorry your not feeling well. Right there with you! (Bad cold) My husband had been sick for 2 weeks went to clinic for the cold/flu on Sun
With dry cough and hoarse voice. After 1 day of med prescribed by Dr he was back to feeling normal. No antibiotics. My friend told me it doesn't go away for ever! So here I am at the walk in clinic.My cold just getting worse day by day. Acted like I just had touch of it and literally now my voice horse, raspy, and gone!Elias you should go get looked at to.
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 01, 2016, 09:02:07 pm
Nice to hear from you Phoenix!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 01, 2016, 09:18:17 pm
I had called Gilead about Aleve. They said there is no known adverse interaction between that and Epclusa. But they cannot say whats ok to take or whats not, because that would be giving medical advice. And they cannot do that. So I called my drs office and receptionist asked dr . Was told its not problem in terms of Epclusa.

NSAIDs are not the best thing for your liver, but seems thats not an Epclusa issue, but broader question of liver health. It does worry me in terms of the larger scheme, because the stronger prescription pain meds  would be overkill for me and there's issue of developing a tolerance
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on November 01, 2016, 10:05:23 pm
You are right about Gilead Elias. I am talking about calling your pharmacy, specialty pharmacy's usually have a 24 hour line that you can call and talk to a pharmacist. They can give medical advice an what interacts with Epclusa.  I have done that with a few medications I am on just to be sure.
I hope you guys are feeling better! It's getting to be that time of year for colds and flu. Take it extra easy if you can!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 01, 2016, 10:16:35 pm
Thanks much Phoenix:

I dont think my  specialty pharmacy has that 24/7 service.

Thing is that their information on this would most likely have its source in Gilead's data. So I called them

I cant imagine pharmacies have independent information about drugs so newly released, other than Gileads database
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 01, 2016, 11:41:39 pm
Hi Elias,
Just got back from the Doctors. Viral bronchitis! Who knew? On z pack for 5 days.i don't even have a runny nose, just dry cough and hoarse voice. Just sharing in case you have same symptoms.
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 02, 2016, 02:08:27 am
Hope you feel better soon, Pepperann.I once had that. The zithromax is in case of bacterial complications , i think.My symptoms are a bit different, but who knows.

The aleve helped me a lot.  But still going on very little sleep
Title: Re: Starting Epclusa on Tuesday
Post by: rk on November 02, 2016, 06:18:40 am
Hi all,

I see most of you are having some health issues. May I join in? I have a sharp pain in my right ear. Thought it was infected, went to specialist and was told no infection it may be a pinched nerve in my neck. I can not take NASIDs it lowers plates and last check mine are at 88,000. Have to live with it or find another way to possibly reduce inflammation. Like some sleep is an issue especially tonight. To hell with it i took a Valium. Starting to feel more relaxed will finish this and hope sleep comes. I have another problem to but I forgot time being what it was, oh well. Other than that I feel fine and doing fairly well as I am near the end of my 4th week. I remembered what it was, diarrhea symptoms I'll need more plugs. ha
Ok enough of my rant, have a good week all. Elias and Pepperann, don't fret most issues are short lived. I just happen to have more than one and the ear pain is not hep c related. My luck tends to run that way.  Night all - Rod
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on November 02, 2016, 07:56:44 am
I am not sure how they get their info Elias,but it's their job to know everything they can about the drugs they supply. I just feel better getting their advice!
Glad you went to the dr Pepperann! Feel better soon.
Whatever it takes to get sleep rk. I had a few short bouts with diarrhea too. Haven't had any in a few weeks though. It will pass!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 02, 2016, 09:15:38 am
Youre correct, Phoenix. They should know bout this the best.  I did call the specialty pharmacy about it. Both the Aleve (Naproxen) and Diazepam are ok with Epclusa. No interference at all. Thanks for the suggestion. It did put my mind at ease about it.

I'd very much prefer not taking the Aleve unless I really need to. Seems a whole bunch of things came on together: insomnia, TMJ, pelvic pain, and a horrid cold. Might be the stress of it all driving this. So stress reduction techniques, once this all lets up some...Hope that happens soon. I also need to look into mild painkillers easier on the liver than Aleve. Sad because it works so well for me and no side effects.

I do think the dramatic intensification of the insomnia may well be a side effect of the Epclusa. But being stressed out is likely playing a role, for myself and a few others here having symptoms
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 02, 2016, 10:20:43 am
Rk wrote:
Quote
Thought it was infected, went to specialist and was told no infection it may be a pinched nerve in my neck. I can not take NASIDs it lowers plates and last check mine are at 88,000. Have to live with it or find another way to possibly reduce inflammation

Hi Rod:  Is platelet reduction via NSAIDs transient for during time one is taking it , or does it remain low? I read that Acetomenphen (Tylenol) has similar effect.

 NSAIDs also messes with liver enzymes some. Not sure of degree to which Also not clear is that's transient for while taking it. I  was taking Aleve (Naproxen) during kidney stone pain and it caused spike in liver enzymes, prompting the GP to look into HepC

Please keep us posted if you learn of pain relief tx which can be taken prn and is non-addictive (as Aleve is). Or PM me on it if you prefer. I don't think Tylenol works for me unless to I go to high dosages, which causes problems
*************

I'm thinking that Epclusa might intensify issues or symptoms we already have more often than it creates new ones. So if one already has insomnia , it will make it more pronounced. If one has some tendency to muscle pain, it might intensify it. This might account for the clusters you and me are finding as well as others. Might be worth considering. Hope you feel better and r deeply sedated by now
Title: Re: Starting Epclusa on Tuesday
Post by: rk on November 02, 2016, 01:41:10 pm
Hi Elias

I am not sure of all the risks using NASIDs. Also we deal with compromised compared to normal functions. My nurse said Tylenol in moderate doses is fine. I do not remember how much but I never approach that amount. Aleve however was not ok in any amount. Lynn K on the forum may have better incite, as I recall her platelets was low as well. I think Epclusa and similar med's probably play a role in this as well. I questioned my nurse about essential oils. For the most part they are considered safe. That is my next avenue since I have several on hand. I made up a small amount of oils with ant-inflammatory properties. That plus additional range of motion neck exercises. Just started but have no ear pain yet. Will see, yes I think Epclusa may share some of the effects. I don't dwell on things not in my control. I try to find ways to work around my issues. I slept little but it was sleep and it will get better. In general I get sleep but wake early and feel unrested. That can go a day or three, then I may get a good nights sleep. I've read a lot on the subject and practice good habits related to sleep. Its trying but I either deal with it or seek help from a specialist. Just more to pile on, glad I do not have to work and deal with these issues.   
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 02, 2016, 06:45:59 pm
Hiya rk:

Yes. I have read that tylenol is preferable. There's aricle by Lucinda Porter on this:

https://www.hepmag.com/blog/harvoni-and-headache-1 (https://www.hepmag.com/blog/harvoni-and-headache-1).

Up to 1,000mg/dose and a max of 4,000 mg/day.Unfortunately, tylenol helps me little if pain is intense such as with TMJ

Something may be not good for the liver, yet have no known interference with the actions of Epclusa. Such is the case with NSAIDs. Conversely, something may be completely harmless to the liver , yet interfere with Epclusa. For example your everyday antacids , such as Tums. So I'm glad i got that straightened out. I dont take Aleve too often, but when I really need it , I do. My platelets are a bit lower than average, but not terrible. They range between 149 and 190. (I do wonder if that lower number was on account of Aleve at the time)

Thanks for the idea about essential oils!!! They are expensive if taken as supplements.. Wondering if increasing the daily intake via diet might help though. Was going to do that anyhow as part of health program, but the severe insomnia threw me for a loop. So my "health program" was put on back burner.

I finally got some restful sleep. Thanks to our little yellow friend diazepam. Still it took me hours to fall out. Might try shifting that time I take the Epclusa and see. Or as some here say, that side effect may just be transient. its amazing what a difference one night sleep can have. And i only got 5 hours-if that much. I take diazepam only as acutely needed. As with Aleve. I might ask GP for a med specifically for sleep if this continues

For non-severe  "aches n pains", daily stretching exercises are of course the best. I rarely take anything for those.

Thanks for referencing essential oils. I should look into those
Title: Re: Starting Epclusa on Tuesday
Post by: DS on November 03, 2016, 09:00:07 am
Hi there,

I have good news about Epclusa.

I'm 25 and I was diagnosed with genotype 2 in May 2016and started treatment in the U.K. in August as I managed to get treatment approved by my workplace health insurance (still amazed by that)

Anyone starting Epclusa should understand this is a miracle drug. In two weeks I was undetected, I've lived a normal life even been able to have the odd drink here and there once or twice a week (no binge drinking whatsoever). I've had to change nothing about my life whilst on treatment. I had the occasional headache and a bit of fatigue which I noticed whilst exercising at the start but thats it! I believe the mind is a powerful thing and having been diagnosed out of the blue with such a serious illness puts you in a very strange state of mind where you are convinced 80% of the time that you are ill and any pill you take has an impact on you. I honestly believe (and so does my doctor who is a professor of hepatitis at a very renowned university in the U.K.), unless you are at a very late stage of liver disease Epclusa should have no real side effects if you stay away from ribavirin.

Believe in the drug's amazing curing ability and you will get through it without a problem. I have 6 days left of treatment, with another 3 months to wait for confirmation of SVR12. I would be surprised if it's a bad result though, it would make me the first person in history with genotype 2 to not have been cured on Epclusa treatment!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 03, 2016, 11:22:24 am
Thanks for encouragement, DS

It is indeed a possibility that some of the side effects are driven in parrt by  sense of vulnerability. Especially among those recently diagnosed. Suddenly, i had learned I had some potentially fatal disease, which i likely had all my adult life. At same time, i learn theres this magic bullet recently approved, only several months before i was diagnosed. just as precipitously, i learn that my insurance refuses to cover it. Then unexpectedly I learn that I won on appeal. So my entire system was geared to cataclysmic thinking. This may very well amplify mild symptoms. So far all my sides effects are intensifications of symptoms of issues I've had in the past and have
overcome. or issues I experience only very mildly.

Nonetheless, sleep deprivation is sleep deprivation and harmful to health . and the pain is very real and needs to be addressed regardless .

===============

PS: Im curious what your starting viral load was? Since you managed to clear it to undetected at only two weeks..

elias

Title: Re: Starting Epclusa on Tuesday
Post by: DS on November 03, 2016, 11:41:11 am
Sorry to hear about your troubles. Sleep deprivation is no laughing matter and it is highly likely that it is not caused by Epclusa. Whatever it is caused by it should be resolved so you can rest and relax. At the end of the day, your body is being cured and fights off the virus over a period of 3 months so rest and relaxation should be looked forward to and enjoyed! The professor said that mild side effects like headache and fatigue in the first few weeks are due to your body releasing low levels of interferon (like you do when you have a cold) as it fights the virus which is prevented from replicating by the drugs. So headache and fatigue in the beginning shows you that the drugs are working!  But in general if you look at studies done without ribavirin the side effects are very mild and anything more serious is probably due to something else. 

My viral load in May was 9.5 million, no fibrosis whatsoever and an ALT of 56. Ultrasound totally normal. With the new drugs your viral load has no impact on the effectiveness of the treatment. Back in the day of interferon injections there was some evidence that higher viral loads were more difficult to treat. Not anymore! Your body either responds or it doesn't...
Title: Re: Starting Epclusa on Tuesday
Post by: rk on November 03, 2016, 12:50:06 pm
Hi DS

For those of us that waited for a milder cure Epclusa is the answer. I went into this hoping for mild side effects and that's what happened. Today is 28 days, I finished my first bottle. After a 12 day blood test I to was cleared of the virus. It was an early two week test.

I am genotype 2 and have lived with this for several years. As an older male my doctor suggested I wait for a milder cure. As I went thru final testing Epclusa come out in June. I have a great doctor and he promised me Epclusa. With me at F3 he eased my mind with the cure rate.

At 25 and your best years ahead I wish you a long and prosperous life. Hopefully in your life time Hep c may become a simple immunization.
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 03, 2016, 03:50:28 pm
Thank you DS
Great news. Cannot believe how good I feel! So glad you are feeling great to!!!
Thanks for sharing!
Title: Re: Starting Epclusa on Tuesday
Post by: wsv3424 on November 03, 2016, 06:57:33 pm
so glad you guys are here to talk to and encourage others . Such a blessing for all.
Fixing to take my 1st dose epclusa and will advise as going thru process. Looking so fwd. to being well again.
Muscle cramps ,leg and arms back muscles are real demons ,perhaps epclusa helps w/this.
If I can help anyone w/encouragement I'm available mostly 24-7 .
thank the man above for a wonder drug we can use to correct our mistakes or faults or just being irresponsible far too long.
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on November 03, 2016, 07:01:59 pm
Welcome wsv. Keep us updated on your progress and remember to drink lots of water! I start my 3rd and last bottle tomorrow. I can try to help with any questions. Congratulations!
Title: Re: Starting Epclusa on Tuesday
Post by: wsv3424 on November 04, 2016, 01:53:24 pm
1st dose,uneventful , but today headache minimally annoying but I can deal w/anything if it will cure me .
I'm so thankful just for this gifted opportunity dont know how to accept it really.
NEVER  been given anything in my 65 yrs.
congrats to all and God bless!
look fwd. to 2nd dose at 7 this pm.
Title: Re: Starting Epclusa on Tuesday
Post by: wsv3424 on November 04, 2016, 01:55:12 pm
Pepperann, so glad hearing how epclusa has you feeling !!
how long have you been taking ?
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 04, 2016, 06:18:33 pm
Hi Wsv,
I started not to long before you! Not sure what happened to the rest of my post
Nov 30th Sunday . I feel great. Web if you are getting headache could be an indicator that you need to drink more fluids.  If your not a big fan of water try and get anything healthy for you. Plain tea even!
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on November 04, 2016, 07:18:17 pm
Welcome Wsv! Glad to hear that you started Epclusa! I am on my 8th week and feeling pretty good. I did have headaches during the first couple of weeks. Didn't bother me though. They would come and go really fast. Very weird! The only time I get them now is if I don't drink enough water.
3rd bottle Mw! Awesome. I start mine on Tuesday. Yay!
Blessings everyone!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on November 04, 2016, 07:20:53 pm
Hey Phoenix,
  How are you doing? I am well, still a little tired. We are almost at the finish line! It's almost over. Good to hear from you.
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 04, 2016, 09:18:38 pm
Hi Wsv,
I was writing a post to you earlier and it disappeared when it I went to post it. Did something wrong not sure what, then had to go. It looks like Phoenix had headaches to. I guess common.  I think I read that some people thought drinking more water helped. If you are like me and don't like drinking water, try a squeeze of lemon.
I think epclusa helps with ligament and joint pain to what degree I have no idea but I had 2 frozen shoulders with one fully thawed out when I started treatment, and the left one still painful to where I could not lift arm high enough to shave without propping arm up the wall and stretching it barely enough to access and very painful. I noticed 2nd day of taking Epclusa that my arm is almost able to fully extend and I can definitely hold my arm up by itself to shave!! I made a comment on here earlier that my Doctor said I would feel better after treatment. I may get more tired as the treatment progresses but for now I feel great bronchitis and all. I probably should of waited till my cold was over. Doctor felt the eplcusa may have lowered my immune system. There is a nasty bronchial flu cold going around Seattle and everyone has it. Stay away from sick peole,wash your hands, and no touching the face!
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on November 04, 2016, 09:34:35 pm
Doing well Mw! I am still tired too. In fact took a nap today. ;D  2 down, 1 to go!!
Yes Pepperan water helps A LOT! You should be drinking as much as you can. It does help with the side effects, as well as keeping things moving. I think in the end, Epclusa will help with joint pain. I have had pain in different areas. Knee, shoulder, now ankle. The ankle swelling went down during the first week of treatment, but the pain is still there. I also had lower stomach pain, which has just about gone away. Fatigue and brain fog still hanging around, although it does feel a bit better. Glad to hear your shoulder is better!!
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on November 05, 2016, 06:15:03 pm
Happy Saturday to Epclusa Family!

  I didn't post for a while, because there was not much going on since I started taking Epclusa. No side effects! Noticed that I am not tired anymore as I used to be for last several months before I was diagnosed. Increased level of energy. Next Thursday I am starting my second bottle  which I already received( my specialty pharmacy is on the top of things, they call me ones in a while to check how I am doing, and they initiated the refill without me calling them).  I noticed that most of you posted blood test results during the treatment ( 4,8,12 weeks), but here is a thing - my doc never told me that I should have it done too. Yesterday, I called to a clinic and left a message wondering if they can give me a referral for blood test  to track my viral load and the rest, because I am concern, and only after that medical assistant contacted me, apologies that she forgot(?!) to call me earlier ( 2 weeks ago)...It just another situation which makes me think we have to keep our eyes open and take care of ourselves.

About the positive side effects. When I was walking/running down the stairs I always felt a little pain on my knees. I had it for last year or two. Week after I started taking Epclusa I noticed that pain was gone. I asked myself if it could be from the drug I am taking, but now I am sure IT IS since you all have noticed it too. P.S. Gilead probably will take it to consideration and perform new research. It reminds me a history of development of Viagra when originally it was targeting to treat high blood pressure and angina pectoris, but side effect completely turned it to different direction:):):) ) It also could be from increased water intake and limiting (almost excluding) salt from my diet.  I changed my diet completely despite I was always eating healthy, I eliminated a lot of goodies I was enjoying a lot.

I wish you all to have a nice weekend and enjoy life as we supposed to.. no matter what!

Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on November 05, 2016, 07:09:29 pm
Glad you are doing so well bluebird! Yes you do have to be a advocate for yourself. Not just with an illness, but with everything. Especially now though, as it is so important!!
Title: Re: Starting Epclusa on Tuesday
Post by: wsv3424 on November 05, 2016, 08:05:07 pm
well all, I'm taking 3rd does now and must say all is exceptional so far , yipee!
so darn good seeing the positives here from all of you folks, gives me a warm feeling [or is that just the warm urine running down my left leg] I'm 65 after all and the past couple years felt every bit my age. NEVER  did I ever even think of age ,felt ageless and blessed to have each days sunshine on my face . My mom made 99 and would be here today if not for incompetence at the hosp . Another glaring need we face today where you go to the hosp to die, wth right?
Never having a cold or flu my entire life to be struck w/hep c and this super-fatigue syndrome accompanying it slapped me around real tuff that I did blood work complete and about fell out watching the dr. say hep c.
Now ,once again I've been blessed w/meds that from all I see w/you great folks is positive outlook is in my future hopefully and I will get to play w/grankids etc that I crave and miss bigtime.
Thanks for all and thanks for yall :)
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 06, 2016, 09:51:34 pm
Hi Wav
I feel very grateful that is for sure. Congratulations on getting on epclusa! My best friend was so sick for a year while on treatment that I cannot believe I am on my 8th day with so far no side effects! I hope the same for you!
I have a question does anyone know when to take medication on daylight savings? I suspect the same time but hour difference?
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 06, 2016, 10:01:03 pm
Hi Pepperann:

If u wanna stick to the exact time, you'd actually take it an hour earlier than usual. So say u usually take it 6PM , you'd take it at 7pm. Since that's 24 hours after the day before the clocks were set back n hour.

But i think being an hour off is not a big deal
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on November 06, 2016, 10:53:54 pm
I just took mine at same time. An hour or so shouldn't make a difference. i'm not perfect and don't always take at exact time :-[
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 06, 2016, 10:55:00 pm
Thanks Elias & Strike,
Decided to take it at the same time 7pm when I get home from work. I figured what you said 1 hr should not make that much of a difference.
Thanks
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on November 07, 2016, 12:03:12 am
Hi Pepperann,  I am agree with you  to start taking pill an hour earlier starting today, because of time saving. I used to take around noon, now around 11 am.  Maybe it is not a big difference, but I like to keep 24 hours difference strictly. Good night and sweet dreams to everyone...
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on November 07, 2016, 05:50:22 pm
I shifted the time I took Harvoni by 1 hour with daylight saving, so that I could keep taking it with dinner.

I did it over three days - moving it by approx. 20 mins. each time.

Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on November 07, 2016, 08:51:24 pm
@andrew- good idea!  Today I have a blood test for viral load. Can I eat or drink water before it? I forgot if I did or didn't before. Please, someone let me know! Thank you!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 11, 2016, 12:47:33 am
Hi Bluebird,
Yes you can eat and drink before viral load test. Not suppose to eat or drink before glucose (urine test), which determine's if you have diabetes or not. I think there is also another blood test that they don't want you to eat or drink anything before but I don't remember what blood test it is. Please share the good news cause I'm a 2 weeks behind you!
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on November 11, 2016, 05:17:52 am
Pepperann,you were right, no fasting needed for viral load count in blood. My results will be available next Tuesday or Wednesday( I scheduled an appt. with my virusologist). Recently I noticed I am issuing a problem with a sudden chest pain, it comes after lunch or dinner and feels like a burn in the upper chest ( between breast, not under the ribs). At that moment my heart rate was 130b per hour.I had it twice in the last two  days  for 15 min before it went away. Another thing - every day after finishing dinner I feel that my food has a hard time to reach the stomach, I have heartburn and  burp which I have never had in my life. I am not sure if it is because of pill,  struggling liver or something else. Despite a smaller portion I normally eat, I go to bed feeling my food still didn't pass the throat. Does anyone else has to deal with it?
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on November 11, 2016, 06:18:47 am
Your ALT and AST are quite high; liver may be struggling to keep up. Looks like you are due for your tests soon; I would wait to see if those are going down. I have been getting a burning also, but drinking/eating something seems to help. I take Pantoprazole for acid reflux, but can not take it for 4 hrs before/after Epclusa.

If it is gas related, you could ask your dr for Simethicone 80mg. About $3 for 90 tablets.

Hope you feel better and good luck on your tests!
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on November 11, 2016, 08:02:34 am
I have had a few bouts of acid re flux while on treatment as well. Never had it before starting Epclusa. It hasn't been anything I can't handle, so I am going to wait it out until EOT. Talk to your doc about it. I am sure you can get some relief!

Keep us pasted on how your VL numbers!

No fasting required for the Viral Load test.
Title: Re: Starting Epclusa on Tuesday
Post by: Lynn K on November 11, 2016, 09:41:00 am
Take a look at table 2 on page 7 of the Epclusa prescribing information sheet you should have received a copy with your prescription here is a link to a PDF

https://www.gilead.com/~/media/files/pdfs/medicines/liver-disease/epclusa/epclusa_pi.pdf?la=en

There are very specific instructions about how to take Epclusa with acid lowering medicines.

Table 2 Potentially Significant Drug Interactions: Alteration in Dose or Regimen May Be Recommended Based on Drug Interaction Studies or Predicted Interactiona
Concomitant Drug Class: Drug Name
   Effect on b Concentration
         
Clinical Effect/Recommendation
 
Acid Reducing Agents:
  ↓ velpatasvir
 
Velpatasvir solubility decreases as pH increases. Drugs that increase gastric pH are expected to decrease concentration of velpatasvir.
 
Antacids (e.g., aluminum and magnesium hydroxide)
    Separate antacid and EPCLUSA administration by 4 hours.
 
 H2-receptor antagonistsc (e.g., famotidine)
   H2-receptor antagonists may be administered simultaneously with or 12 hours apart from EPCLUSA at a dose that does not exceed doses comparable to famotidine 40 mg twice daily.
 
 Proton-pump inhibitorsc (e.g., omeprazole)
  Coadministration of omeprazole or other proton-pump inhibitors is not recommended. If it is considered medically necessary to coadminister, EPCLUSA should be administered with food and taken 4 hours before omeprazole 20 mg. Use with other proton-pump inhibitors has not been studied.

Strike 5223

Pantoprazole Is in the class of medicines called proton pump inhibitors please check with your doctor to make sure you are taking your Pantoprazole correctly while taking Epclusa
Only antacids like Tums or Rolaids for example are taken by separating the dose of antacid from Epclusa by 4 hours before or after

I believe you should be taking Epclusa with food 4 hours before Epclusa as in the description for omeprazole or other PPI medicines

Please check with your doctor about acid reducing medicines and Epclusa
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on November 11, 2016, 10:06:44 am
Thank you, Lynn, Phoenix and Strike for sharing. I will ask a doc next Wednesday, but till then I may cut my "bird meal"( I eat often, but smaller portions) especially after 6, and see if it helps. I just worried if it is a heart problem getting added to everything I already have. A while ago Lynn was surprised that they never requested an endoscopy test for me. Maybe I should insist on having one... Let's see! I will post my first results for sure!!!
Title: Re: Starting Epclusa on Tuesday
Post by: KimInTheForest on November 11, 2016, 03:20:09 pm
Hi Bluebird. I didn't take Epclusa. But I did have some major heartburn experiences on Harvoni. (And both drugs have Sovaldi/sofosbuvir in them.) I have never had heartburn before, so the first time (around midnight) I thought I was having a heart attack and was wondering if I could safely drive myself to Emergency. That's how bad and alarming it was. But it was heartburn. Episodes continued intermittently throughout treatment and a bit beyond but finally disappeared.

You can google lists of foods that are particularly bad for causing heartburn/acid reflux and try to avoid those. I think chocolate and peanuts are on the list.

kim
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on November 11, 2016, 03:45:33 pm
Lynn K

I was advising of that fact in my post: "I take Pantoprazole for acid reflux, but can not take it for 4 hrs before/after Epclusa."

Originally I stopped taking it, but dr wanted me on it due to previous varices, so I take Epclusa at noon, and Pantoprazole after 5 pm.

Simethicone does not contain the ingredients that interfere with Epclusa:

Ingredients
Active Ingredients
Simethicone
Inactive Ingredients
Dextrose
Sorbitol
Stearic Acid
Sucrose
Maltodextrin
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on November 11, 2016, 06:03:18 pm
Hi Kim , thank you for reply and advise :) :) I just checked the list of 23 food cause a heartburn and happy to say that I don't eat any of these except tomatoes and walnuts. I gave up on most foods I liked before and chocolate is one of them along with an ice cream, sour cream, deli cheeses from Costco, seafood, cookies, any tipe of baking, fries and many others :( First time when I experienced a heartburn was right after lunch  - I had a veggies soup and tomatoes were one of the main ingredients in it. The second time I had heartburn was after I ate walnuts (1/2 cup). The most important thing is:
"To alleviate acid reflux, don’t lie down for the first 2 hours after you have finished your meal. In fact, standing up or walking around can help gastric juices flow in its right direction. Similarly, while sleeping, you should keep the upper body elevated by putting a book underneath the mattress."  I am guilty to admit that I went to bed 20 min after I finished dinner to watch tv or read online ( not to sleep yet since it was only 7 pm). I need to change this habit,  I used to walk before time saving switch, now it too dark:) well, I am glad that it is still manageable and less likely is a heart attack. Thank you for reading :)
Title: Re: Starting Epclusa on Tuesday
Post by: KimInTheForest on November 11, 2016, 06:07:01 pm
That's great that you only have 2 foods on a list of 23 you have to omit or be careful with, Bluebird. And yes - that part about not lying down for 2 hours after you eat is really important.

Good luck with it! :)

kim
Title: Re: Starting Epclusa on Tuesday
Post by: Lynn K on November 11, 2016, 06:18:51 pm
Thanks for the info Strike just want to make sure people are checking in with their doctors as this issue of acid reducing meds is so important to get right.

Yes I forgot simethicone is not an acid reducer only a gas reducer

Hope everyone is doing great :)
Title: Re: Starting Epclusa on Tuesday
Post by: circe801 on November 12, 2016, 02:18:11 pm
hey, all.  today is my third day on epclusa.  oddly, i feel pretty good so far.  maybe better than usual.  i can only hope it continues.
genotype 2a, low viral load, little fibrosis.  was diagnosed in 2009 and am unable to tolerate any of the older treatments due to a history of depression.
pretty sure my insurance only approved this because of my darling GI doc who pushed for me by telling them that i have a dual diagnosis of both HCV and sarcoidosis.  must've worked, because here i am being treated.

i'm sure you've all been counseled, but in case anyone forgot--
if you take meds/vitamins/supplements containing calcium and/or magnesium, take at least 4 hours before or after your dose.
eat, and if you eat processed/fast food, please consider not doing it any more.  that stuff isn't good for healthy people, let alone us.
STAY HYDRATED--no soda, please--it's full of either HFCS or artificial sweetener (depending on whether regular or diet poison).  seltzer is fine.  limit the caffeine (coffee, tea)--it is dehydrating.  if you must drink it (like my one cup in the AM), drink extra water (or whatever non-caffeinated, non-HFCS fluids you're using for hydration).

glad we all have this forum.  being able to commune with others in the same situation is a blessing.  will report back after my 4-week bloodwork--which will actually be 3-week as my doc will not be in the office on my 4th.

congrats to those who've finished their course and have continued
SVRs, and luck to all of us who are in the midst of treatment!!!
peace & health to all!!! 
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on November 12, 2016, 02:33:57 pm
if you are craving a soft drink, I have just tried Pepsi 1893 and I love the ginger cola! Also a regular cola available. NO HFCS/sweetener: just REAL SUGAR :)
Title: Re: Starting Epclusa on Tuesday
Post by: circe801 on November 12, 2016, 02:47:07 pm
hi, strike5223--i don't often drink soda, but when i do, it's ALWAYS 1893 ginger!!!  i don't have it more than one every couple of months, because if i did, i might drink it more often.  i don't even do throwback pepsi any more...
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on November 15, 2016, 04:14:39 pm
Hey everyone,
    Just checking in to see how everyone is doing. I have 17 days left of treatment and am counting down! I am still tired and have some pains here and there but I'll admit I don't drink as much water as I probably should. I hope everyone is doing well. I'm looking forward to see how I feel after treatment. I'm hoping I get my energy back. Best wishes to all.
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 15, 2016, 04:27:16 pm
Hi Mw and all on this thread:

Symptoms same all along. If im rested, im ok. But all too often I'm not.

I dont have specific side effects, such as headaches, etc..But I do have much the same discomforts and pains I normally get when i  lose sleep. Only it gets amplified about 10-fold now that I'm on Epclusa (3 1/2 weeks so far)

I can't say for sure the Epclusa is causing those sleep difficulties in the first place. I was oddly beginning to have much of this about a week or so before even beginning treatment.

I'm more stressed  than usual lately because im worried about my upcoming 4-week test. And need to brace myself for possibility i wont be UNDETECT . I see several here weren't UNDETECT at that milestone.

I do wonder why they even test at 4-weeks in the first place? Since little conclusion can be drawn for such results at that early milestone?
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on November 15, 2016, 04:42:59 pm
Elias,
     I can relate to the well rested issue. I feel like when I'm more tired, I feel worse in terms of back pain. I also have sleeping problems. On epclusa, I am able to fall asleep easily but I wake up around 3 am every morning and it's difficult for me to fall back asleep. I have to get up at 4:45 am so I'm losing precious zzzz's. Obviously I feel worse when I'm tired so this is an ongoing losing battle. As far as your 4 week labs, it's OK if you aren't undetected. You will be at the end of 12 weeks. This test doesn't mean much . It's the 12 svr tests that are important. Don't stress! You'll do great!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 15, 2016, 04:47:47 pm
MY GI had said last month this 4-week test is a must and that i will most likely be UNDETECTED then.

My viral load is kinda high (1.6 million) . So how was he able to say that? And why is it still given altogether?
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on November 15, 2016, 04:54:07 pm
From what i've seen on this post, most people are showing undetected at 4 weeks.

The 4 week test is done to see if the treatment is having an effect on the viral load;
8 weeks provides more progress info, 12 weeks(EOT) will show final results of treatment to determine if additional/different tx is needed.

My doc is not doing an 8 week test, but others do
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on November 15, 2016, 05:00:10 pm
Elias,
  You very well may be undetected. It is possible. But because you have a high vL, it may not be completely gone but there will be a drastic improvement. Don't be discouraged though, it is working. I honestly feel that I know more about epclusa than my doctor, by doing my own research. Maybe your doctor has seen it happen before or maybe he just isn't that knowledgeable. I'm not sure why they even do it, maybe for insurance purposes and to make sure there is progress. I know I saw a post saying they were thinking about doing away with 4 week tests because it can be stressful and discouraging. But I know you will see great numbers. This is a really great drug.
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on November 15, 2016, 05:05:12 pm
Strike,
  My doctor is also not requesting an 8 week test, which is fine with me. I have the order for the 12 week eot test already so I won't see him again until after that. But you're right, some do have more frequent tests.
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on November 15, 2016, 05:49:53 pm
My Hep doc did my colonoscopy yesterday, so I got in a few questions. I do not think they should do away with 4 week because it indicates whether the drug is effective, and could change/add treatment.
Title: Re: Starting Epclusa on Tuesday
Post by: Lynn K on November 15, 2016, 06:10:43 pm
Really the only use of the four-week on treatment test is to confirm patient compliance because the only reason you would still be strongly detected with a high viral load is if you weren't taking the medicine  as prescribed.  Otherwise the 4 week on treatment test results really don't mean much at all. Everyone taking treatment as prescribed will either be not detected or have had a hugh reduction in viral load or just barely detectable but neither result relates to the important test result the 12 week post treatment test for final SVR
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on November 15, 2016, 06:23:57 pm
Thank you Lynn K. for your knowledge.
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on November 15, 2016, 07:13:06 pm
Hi All!  I am starting my 10 week of Epclusa. 3 more to go! I had my 4 week VL and will not get one again until 12 weeks EOT. My Vl at the start was over 22 million! At the 4 week mark it was down to a mere 36. No zeros added to that, just plain 36. If you are not undetected at 4 weeks, don't worry. I am not worried. I am sure it is long gone. Now to get rid of this sinus infection......    ;D
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on November 15, 2016, 07:14:29 pm
Almost there Phoenix...
Title: Re: Starting Epclusa on Tuesday
Post by: rk on November 15, 2016, 08:31:40 pm
Hello all, my doc did a 2 week vl which was undetected and again at 4 weeks, same results. The next vl test is shown at 12 weeks. I do labs and liver imaging next week. Plus I am scheduled to do labs every two weeks. I will be thoroughly investigated before this is over!

Elias, ease your mind. Like my doc said, even though you are undetected, it takes 12 weeks. In that time the remaining virus, if any, will be cleared. I am half way there.

Soon two more will be cured. Phoenix & Mw, it should  be very happy holidays. Mine will be a happy new year. ;D  My best to all cured and going to be.

Rod

Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on November 15, 2016, 11:28:05 pm
Congratulations, RK! It is an exciting news! Very soon you will be cured and forget all about it. I just got my test results ( labcorp posts it online) and I have an apt with my dr tomorrow.  All my numbers are in the range, except Alt and AST are still high. Viral load is less than 15 ( surprise, I had 8 mill), but hcv rna says detected! S*** I Will give you details tomorrow after the appt. Could my test result be not accurate? good night  everybody!
Title: Re: Starting Epclusa on Tuesday
Post by: Lynn K on November 16, 2016, 01:55:45 am
Not everyone will be not detected on treatment, the important thing is you have had a significant reduction of viral load. The only test that matters is the 12 weeks after treatment has ended the SVR12 test

You are doing great good luck the rest of the way to beating hep c
Title: Re: Starting Epclusa on Tuesday
Post by: rk on November 16, 2016, 11:03:45 am
Hang in there Bluebird, like Lynn says not everyone will be undetected at 4 weeks. I'll bet if you had labs done again today it would show undetected. The remaining time is  like a cushion to make sure the body is cleared. As an example my starting VL was 2940 very low but a lot more than your 15. After 12 days mine was cleared.
Your doing fine, cured is in the near future.
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on November 16, 2016, 11:17:28 am
Hey Lynn K,

When should you get a new toothbrush/razor. I am using a different toothbrush since starting tx - do I need to use a new one after?
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on November 16, 2016, 03:53:23 pm
Bluebird,

From what you have put up, and written, it appears that you have a very small amount of virus left at ... 4 weeks, is it?
That's why the RNA test still says 'Detected'.
It's not unusual.
You have nothing to worry about.
It's the general trend / huge drop they're looking for at 4 weeks.

Strike,

I was fussy about keeping my toothbrush clean, and religiously soaking my razor(s) in bleach.
I wanted to do everything I could to maximise my chances.
For me, it was: 'Better safe than sorry'!

Lynn wasn't anywhere near as concerned, I don't think.

Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on November 16, 2016, 03:59:45 pm
Thank you, guys, for support! I just came back from the appt. and Dr. said the same thing  as you about a Viral Load reduction. She sees  a tremendous drop, replication of virus is in control already, but still it will take another couple of weeks  or so to see "undetected". High enzymes confirm that my liver has an inflammation, but again, it has been only 4 weeks of taking epclusa at the day they draw my blood. All is well!  I hope, you are doing fine too!
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on November 16, 2016, 04:10:49 pm
Yes.
You're doing fine, Bluebird!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on November 16, 2016, 04:22:59 pm
Bluebird,
   You have made great progress! Congratulations on your numbers, you should be proud. Keep up the good work!
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on November 16, 2016, 06:07:42 pm
Thank you, guys! You are so sweet! I wish everyone to win and help to others if they will be in our shoes. :) :) :)
Title: Re: Starting Epclusa on Tuesday
Post by: Lynn K on November 16, 2016, 06:09:21 pm
Hi strike

Yeah I just changed my toothbrush at the recommended by dentists interval of 3 to 4 months. I made no special changes regarding personal hygiene products. I still have the same fingernail clippers and did not bleach anything.
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 17, 2016, 01:31:17 am
Congratulations Bluebird!!!
Title: Re: Starting Epclusa on Tuesday
Post by: MommaT on November 17, 2016, 05:53:44 am
Hi everyone!

Just checking in and hope everyone is progressing well! Time will fly if you keep busy
and not let stress get in the way! I have changed taking my Epclusa to 6pm and it is helping with the brain fog! I am feeling much better and taking care of my other health issues-in Physical therapy this month and keeping up with work out of home Business.

The great news is my 8 week VL test HCV-Non Detectable! That really gives me a Boost. I will be done 12/9/16! Cannot wait!

Time flies if you keep busy and live you life! My best to all you Brave people! You should be proud of yourselves and give yourself a pat on the back!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 17, 2016, 10:58:34 am
Hi everyone,
Some reason I had an open post and would not let me erase so I thought I would share an update. I am ecstatic I started treatment and surprised how good I feel despite having a viral cold the whole time! I am sooo glad I found this forum. It has been a relief and comfort that someone else can share their story and progress as I gage my own! It is so positive to hear all the great success story's and progress reports!! Anyone just who is just starting epclusa, just want to share that my experience so far so good! Despite everyone being sick around me for weeks i finally caught a bronchial virus.I typically don't get sick and if I do it's short lived.I was debating whether to start taking Epclusa Despite having a slight cold. I already waited a week and decided to go ahead and started the epclusa. Then my husband ended up catching viral bronchialI bug aka (whooping cough). Well I ended up catching his bug on top of my cold! I went to the Dr to get looked at to see what I had.(viral bronchitis) The Dr. Said that the epclusa is a strong drug and can lower the immune system. He put me on z-PAC (antibiotics) Never got the body aches just a dry obnoxious hack. Especially at night. I had to take cough medicine at night to sleep. I ended up taking the whole bottle! That is unusual for me since I will barely take an aspirin. So anyone who has a slight cold may want to wait or discuss with Their Dr. Before starting . Been sick almost a month!
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on November 17, 2016, 01:50:38 pm
Awesome Momma T! So glad to see you doing well!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 17, 2016, 05:46:20 pm
Quote
The great news is my 8 week VL test HCV-Non Detectable! That really gives me a Boost. I will be done 12/9/16! Cannot wait!


Excellent news MommaT. Congratulations on that UNDETECT!!

I'm trying to fret less about my upcoming 4-week vl test next week. Based on what Lynn had posted above and on your 8-week results after low detection at 4-weeks
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on November 17, 2016, 07:04:51 pm
Great numbers MommaT and Bluebird! You are on your way!!
Don't worry Elias. Even if you have some stragglers at 4 weeks it's not a big deal. The only one that counts s the 12 week after treatment.
Pepperann - I have a yucky sinus infection so I know how you feel. Coughing all night is not fun! I am prone to sinus issues, it's not a surprise but still.....
Hang in there everyone!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 17, 2016, 10:51:32 pm
Thanks all for hopeful words

Phoenix: I have bad cough too from after that nasty cold. Hot soup is helping. Might try some honey too
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on November 17, 2016, 11:40:03 pm
Congratulations, Momma! Very proud of you! @ pepperann, I am very sorry to hear about your struggles and fight with viruses. I wish you and husband to get well and speedy recovery! Don't give up! slowly, but definitely surely you will feeling better very soon! Fight!
Title: Re: Starting Epclusa on Tuesday
Post by: MommaT on November 18, 2016, 06:39:03 am
Thank you!
 Bluebird, Elias, Phoenix,MW and Pepperann!

I appreciate that I have a forum I can voice and get a high five! I told only close family and.... YOU ALL!

I will share that there is a shift when in my mind, think ingI am not contagious! I know Lynn would say WAIT the test is in SVR12 and 24-don't go crazy! lol

This is not going to rule my life-I am feeling on top of it now and count the days. Also looking forward to maybe shocking Dr with a reversal of Compensated Cirrhosis so soon I will be thinking of anything I can eat,  supplement and continue water. What you say Lynn?

I sure hope Epclusa did not hurt my immunity. I feel no aches and pain that weren't already seen from MRI -I do have Arthritis and sleep problems. I stopped all vitamins and stomach antacids so far so good.

Pepperann Hang in there I know exactly how hard Sinus Problems are! It'll take time Lots of water! I shower extra long!

Elias try not to stress you are like me I think-it is my way and give yourself a mental break! I know my sleep is totally crazy, but always was so good days and no sleep days!

Fight the good fight! I have such respect for you all!
Hoping for All -Positive hopeful thoughts!
Title: Re: Starting Epclusa on Tuesday
Post by: Lynn K on November 18, 2016, 10:57:23 am
Hi MommaT

Yup 12 week test. I mean even for those folks who take the EOT test and are not detected they still stress until the 12 week and if they get any additional tests after that stress waiting for that one as well I know I did.

DragonSlayer was detected at EOT and 4 weeks post EOT but went on to be SVR 12 it is unusual but can happen I think at least one other person had that experience but Paul was the first we knew of. I can't to begin to imagine the stress he had when that was going on.

As far as healing our livers my thoughts are the best we can do is if we have too high a BMI we should lose some weight as being overweight contributes to having a fatty liver which in not good for liver health and healing. Other than that just eat health like everyone should. I have see it said that a heart smart diet like the American Heart Association recommends is also a liver smart diet.

So really no special magic just do what everyone should do lose excess weight, get some exercise and eat your vegetables just like ours moms told us.  :)
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 18, 2016, 11:22:17 am
Thankyou Momma T!! So nice to hear your great news! Thankyou Bluebird, Elias, Phoenix, Mw, strike,Andrew,Lynn,& everyone who has shared on this forum! It is so exciting to have a cure. My good friend did the interferon for a year. Shots to the stomach! Severe flu like symptoms, half her hair fell out. This terrified me of this possible toxic solution! I was fortunate enough to be able to wait till something better came along.My ligaments were starting to tighten in my legs, hips & arms. Not arthritis but sore muscles like I worked out real hard.(Before treatment) I felt it was the Hcv settling in my body. Anyone else experience this? Or is it just old age. My 82yr old mother does not have this. Seems to be subsiding. I think drinking the extra water helps (probably just dehydrated! I have great energy and have been working everyday from home office. So even the cold has not got me down! I am hypersensitive to everything. Smells, food allergies etc. so I thought for sure I would have some side effect. Just amazed how good I feel.I can honestly say I have had no side effects what so ever except one 5 second cramp in my liver! That's it. I immediately guzzled water and it went away. Anyone else experience a cramp in their right side below rib cage? Also anyone having any side effects with the epclusa? Just wondering if anyone knows how toxic or possible side effects that may show up after treatment? 64 dayz to go & counting!!
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on November 18, 2016, 01:05:27 pm
My heart stopped for a moment, I swear. I went on COBRA eff 11/1 which, in the world of insurance, means complications!
Same insurance, different ID number, everything else the same. No one thought to tell me they need a NEW PA(what's up with that?) Went to the dr's office because I never get calls back in a timely manner and gave them the information to do immediately; need 3rd bottle Wednesday!
They told me they would take care of it and it is ok if I miss a day or two of the pills.

Wish me luck!!(darn insurance companies) :)
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 18, 2016, 04:03:10 pm
Thanks Lynn, for reiterating about the 4-week and even later vl tests..

I guess its understandable to want that UNDETECTED badge sooner. And to stress if many get that and you yourself don't. But I'll try to keep balanced perspective. It will be very difficult though, given my temperament


Quote
So really no special magic just do what everyone should do lose excess weight, get some exercise and eat your vegetables just like ours moms told us.

There remains some questions for me as to "complementary medicine" and its potential role in this. I've used traditional Chinese medicine for most my ailments much of my life. It worked well where Western medicine has not. Possibly because much of those were stress-related, involving mind-body interactions.

I realize that complementary medicine was  been woefully ineffective in clearing HCV.  But I remain open-minded  as to potential role for this once the HCV is gone. As well as what complementary medicine has to offer in the way of stress reduction.  I'm thinking along the lines of acupuncture and healing exercises such as tai chi etc...  I'm not thinking in terms of some magic supplement coming out of a bottle.

Perhaps some of the more reasonable alternatives can now be revisited?

Theres also the potential role of new pharmaceuticals for regressing fibrosis/cirrhosis. I know there's research going on in this area. And we may get a glimpse into this from the presentations at that liver meeting.

Hopefully, those wont cost $1,000 a pill. But who knows..
Title: Re: Starting Epclusa on Tuesday
Post by: Lynn K on November 18, 2016, 11:24:01 pm
Personally not a believer in alternative medicine but if you want to partake of course entirely up to you. Just be cautions with any supplements as some have detrimental effects on the liver.

I haven't seen anything about medicines to help with regression of fibrosis dotaste woud be news to me
Title: Re: Starting Epclusa on Tuesday
Post by: rk on November 19, 2016, 01:26:12 am
My heart stopped for a moment, I swear. I went on COBRA eff 11/1 which, in the world of insurance, means complications!
Same insurance, different ID number, everything else the same. No one thought to tell me they need a NEW PA(what's up with that?) Went to the dr's office because I never get calls back in a timely manner and gave them the information to do immediately; need 3rd bottle Wednesday!
They told me they would take care of it and it is ok if I miss a day or two of the pills.

Wish me luck!!(darn insurance companies) :)

I wish you luck Strike, lots of luck. From the start its imperative you alert the doc's office to any insurance change,  however they should have noticed this as well. I would try to expedite this & shipping. Maybe a day or two might be ok. That is a maybe I would not take. I question how they know, they may assume missing a day or two may be ok. Or someone missed a day and got lucky. Who knows, try to put them in your position, possibly a re-do, loss of time, not to mention the stress. I hope you lose no days or a day at the max. Lots of luck with that. rk
Title: Re: Starting Epclusa on Tuesday
Post by: MommaT on November 19, 2016, 08:10:15 am
Hello Everyone!

So sorry Strike! Squeaky wheel gets greased! Call Call everyone-Insurance, Pharmacy-I never relied on the Dr's go to girl. She was overwhelmed and promised me no guarantee of even getting..... Epclusa. They all would be silly to drop you this far in the prescription!

Pepperann-I lived for years just fine and suddenly everything ached, my hair falling out and the brain fog plus sleep disturbances-hurt everywhere! This was before treatment. My numbers were crazy high,so it was time to do something! Smells drive me crazy still-like when I was pregnant-getting nauseous -it is the liver saying no! I am good on this med at 6pm. No side effects other than what I already had! So yes I am like you!

Elias-I do believe in alternate therapy. First though, it cannot hurt so watch out...... too much of anything! I was taking Milk Thistle and any exercise/teachings- that makes you feel balanced I think you should do! Just getting and never stopping an exercise habit is good for everything and stress is so much a part of liver disease!

my 2 cents lol Have great weekend and never stop being hopeful!

Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on November 19, 2016, 02:42:49 pm
Thank you, rk and Momma. Going straight to office was the way to go. She took care of it and my medicine will be delivered Tues. Definitely follow up on anything regarding tx.
Colonoscopy good - the usual 2 benign polyps.
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 19, 2016, 02:56:40 pm
Glad to hear the insurance thing was resolved, Strike.

I do get panicky near refill time, because I fear if there's possibility of them messing up, they very well might. But so far, first refill went smoothly. I got my second bottle about ten days in advance, just to allay my fears

Wouldve been really stupid of them to cover the expensive Epclusa and leave a gap like that mid-treatment!
============

Lynn  and MommaT

When I use "complementary medicine" I dont ingest anything at all. No herbal remedies. Mostly meditative type exercises based on traditional chinese medicine. I know for many this includes herbs, but was long ago advised by an acupuncturist-MD to avoid all those. Much of it is really a mind-set.

I'll keep my eyes on latest research from meetings and such about fibrosis -cirrhosis regression. I'm hoping its not just pure luck and genetics.
Title: Re: Starting Epclusa on Tuesday
Post by: Lynn K on November 19, 2016, 06:38:36 pm
The primary consideration for cirrhosis regression is severity of liver damage. The more damage the longer it will take to repair if repair is even possible. For those with very advanced  cirrhosis bordering on decompensated to fully decompensated it will be more difficult to have improvement in my thinking.

I have some edema and a small amount of ascities for which I have been taking a duretic since 2008. I later developed esophageal varicies that needed to be handed so that indicates I have some portal hypertension not sure whether I will or will not experience improvement haven't really see any indications so far that is going to happen for me.
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 20, 2016, 12:41:53 am
Wow Lynn,
Glad to hear you've finally Are free! What a journey! Glad you beat this thing! I hope you heal beyond your wildest dreams! You deserve it! Sorry you have to deal with the side effects! You have a great attitude, heart ❤️ and Thanks for being here and sharing!
Title: Re: Starting Epclusa on Tuesday
Post by: Lynn K on November 20, 2016, 01:02:40 am
Well really what I have are symptoms of liver cirhosis technically speaking side effects are a secondary effect, especially an undesirable secondary effect of a drug or therapeutic regimen.

So like when you have a cold the cough or runny nose is a symptom as opposed to a side effect

But thanks for the good wishes and same back at you :)
Title: Re: Starting Epclusa on Tuesday
Post by: rk on November 20, 2016, 07:07:57 pm
Going straight to office was the way to go. She took care of it and my medicine will be delivered Tues. Definitely follow up on anything regarding tx.

Way to go Strike, I thought my comment may have been to late. My adopted rule is Medical and really any aspect of life is my responsibility. After being let down many times over the years if I don't follow up it may not happen. That is, any time it seems something can go wrong. If I don't and it happens I only have myself to blame. The medical profession is far from perfect. 
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on November 22, 2016, 11:23:02 pm
Hello Everybody! Happy Thanksgiving to you and your families! I have to wish you ahead ( sorry about that) since we are leaving tomorrow to a different state to get together with a family for TG dinner and etc. Here is what I am wondering about: does any of you changed a diet after you got diagnosed with hep c and/or cirrhosis ? I thought I was always eating healthy and only because I am not fond of "fast food" ,but you will be surprised even choosing to eat home cooked food was not enough healthy for me. I also used to like smoked fish, deli cuts, different type of  salami, seafoods, cakes, ice cream  and etc... I like to bake, but the best "cake" for me was a slice of fresh bread with unsalted butter and jam on the top of it. Lol.. I said good bye to all of these gourmet food, to sweets, to variety of pickled vegetables, to butter I used to like, to glass of wine. The funniest thing is despite my love to sweets I have never been overweight and stayed slim or average all my life. The reason I eliminated a lot of " goodies" is because it is suggested by doctors from different countries: ones you got cirrhosis, you have to stay on healthy diet to the rest of your life. If someone is interested, I can post the list of foods good and not really for healthy liver. I am not sure if it going to heal my liver and decrease the stage from F4 to F3,2,1, but it is my goal! You never know!  Best wishes to you and Enjoy the holiday:))))
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 23, 2016, 12:12:51 am
Happy Thanksgiving to you, Bluebird:

The good news is that most, even those with advanced fibrosis or cirrhosis do regress.

It may take longer (at times even 2-3years) if its more advanced.

Here's one of many such reports:

http://www.natap.org/2015/AASLD/AASLD_71.htm (http://www.natap.org/2015/AASLD/AASLD_71.htm)

I'd be interested in such a list of foods if you have one. But I do think there are many other factors involved in terms of degree and pace of improvement. I do wish to  learn more about how to improve one's chances.

I've seen blood glucose control mentioned as a co-factor in improving fibrosis level. Most specifically, Type 2 diabetes. But I think insulin resistance ( a lesser, earlier from of diabetes as well) in general may be a factor. Though I forgot where i had read that.  Conversely, improvements in fibrosis/cirrhosis lead to improvements in insulin  resistance as well. So this could prove quite an interesting dynamic. There's much more to insulin resistance, metabolic syndrome, and T2 diabetes than diet alone.

There are also about ten or so pharmaceutical agents being studied in early trials as possibly reducing advanced fibrosis. Most, though by no means all , are being studied in terms of NASH. But they may conceivably offer similar benefits for those who have cleared HCV. So this might be the new frontier in the battler with Hep C.

Would be good if we had a special section on this forum dedicated to liver health, fibrosis/cirrhosis regression, lifestyle factors, new drugs on the horizon for it. etc..
Seems it doesn't matter much how the virus was cleared in terms of regression

Happy Holidays again
Title: Re: Starting Epclusa on Tuesday
Post by: Lynn K on November 23, 2016, 01:58:36 am
So reading the report it looks like what I have read previously that odds of regression for those with cirrhosis is about 50/50 after 2.5 years post treatment.

All I know is my Fibroscan increased post treatment. My pre tx Fibroscan was 27 and my 1 year post was 33.

But my platelet count did improve from pre treatment levels of about 90 to post treatment 110.

Will be interested to see if I have any improvement next February when I have my regular annual testing at 21 months post treatment. I sure am hoping for some good news.
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 23, 2016, 03:04:02 am
Best wishes, Lynn:

For cirrhosis the median time to see improvement is actually 3 years. Total for group was 2.5 years. But if you look at graphs, the improvements continue years after but slower. Seems different researchers r finding different patterns for regression.

Were only getting little tidbits so far of co-factors involved and if we can do much to improve odds
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on November 23, 2016, 08:03:02 am
Elias, The key word "improvement" and link to the article gives me hope that it is possible! I will do anything from my side to help my liver to recover and resist any future damages to it.  I really want to see Lynn's results in February , I know you are a strong person physically and mentally, and it could help too!  I will translate couple of articles I read after the holiday( or if I have time before the end of this week) and open a new discussion, I will let you know. It will be nice to hear people's opinion about it! Have a great day, guys!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 23, 2016, 11:32:26 am
When I found out about hvc exposure I read everything I could get my hands on. My gastroenterologist wanted to put me on treatment right away but at that time my levels were low. I found myself a naturalpathic Dr. That specialized in the hvc. He found out that I had anemia and attributed partially to people who have virus their digestive systems change the way they digest and assimilate food even develop food allergies! Some things hard to digest are red meat, some grains (gluten) some people dairy, peanuts, sugar. All these things can cause some inflammation. What I have found in all diseases, that certain foods aggravate. So it seems for all disease and longevity of life span it is important to eat a healthy clean diet. Paleo diet is a good place to start. Eating the foods you love that are not the best for you should be in moderation or as a treat. Paleo diet is good one to look at. Also most Dr can refer you to a nutrisionist that can get you set up and usually be covered with insurance. Once your body is use to eating clean it is easy! The initial step and set up is the hardest part.
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on November 23, 2016, 12:23:11 pm
Starting bottle #3!! Will be done by X-mas; what a present :)

No 8 wk tests, tho :(
Title: Re: Starting Epclusa on Tuesday
Post by: Lynn K on November 23, 2016, 02:28:41 pm
Congrats on starting last bottle!

Testing not really needed nothing should change your liver enzymes look like normal range and you are not detected.

All you need now is the 12 week post test for the virus to say you are cured!

I did notice your platelet count is low have you been diagnosed with cirrhosis?
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on November 23, 2016, 03:49:44 pm
yes, they have said I have cirrhosis. They are waiting to see if it will improve after tx. I have not had a biopsy done since 2008 (F0-1). I have also heard that my gallbladder has a lot of crap in it(unofficial) and dr mentioned my spleen briefly.

I guess we'll tackle that later; hope I have some insurance then. (COBRA now)
Title: Re: Starting Epclusa on Tuesday
Post by: Lynn K on November 23, 2016, 04:54:20 pm
Yeah I was told I have some gall stones and later had a few gall bladder attacks (not fun) so had my gall bladder removed.

Probably your spleen is enlarged which is a consequence of cirrhosis raising portal vein pressure causing the spleen to enlarge and sequester platelets which is why we have low platelet counts.

Do you have any problems with lower leg/foot swelling? If you do that is edema. I have edema and some ascities. I have been taking a duretic spironolactone to help with that. Have you had an upper endoscopy to check for esophageal varicies? Have you been vaccinated against hep A and hep B  and also the pneumonia vaccine? When I was diagnosed with cirrhosis my doctor had me get those vaccines right away and also the upper endoscopy. 

Do you get abdominal ultrasound and AFP blood test every 6 months to monitor for early signs of HCC?

Do you know your MELD score?

I hope you are seeing a doctor associated with a liver transplant center? Not because you need a transplant just yet but because that type of doctor and facility are best to follow patients like us with ESLD (end stage liver disease)

Hope you get your insurance worked out soon
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on November 23, 2016, 05:20:05 pm
I have ascities, but no other swelling. I have been taking spironolactone for years.

I was in the hospital three times with bleeding esophageal varices. Last EGD was MUCH improved (Aug) and no varices. Entered rehab and they over-medicated me. rehab stopped phenobarb and switched to ativan.(i requested ativan in the first place, had never had phenobarb for seizures). Was admitted to hospital with hepatic encephalopathy; I have been taking lactulose for ammonia

My dr is part of an hepatitis c clinic in columbus. I have been vaccinated for A and B, but appear to be a non-responder to B(non reactive after 2 series and a booster) I had a pneumonia shot and flu shot this year.

AFP is 9-10; Had an ultrasound twice this year(in hospital and by doctor) but not every 6 months

"Do you know your MELD score?" - I don't know what this is
Title: Re: Starting Epclusa on Tuesday
Post by: Lynn K on November 23, 2016, 05:46:39 pm
The Model for End-Stage Liver Disease, or MELD, is a scoring system for assessing the severity of chronic liver disease. ... This score is now used by the United Network for Organ Sharing (UNOS) and Eurotransplant for prioritizing allocation of liver transplants.

https://en.m.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease


https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/

My MELD is 7 it was8 the lowest score is 6

On the Child Pugh score I am a Child A

https://en.m.wikipedia.org/wiki/Child-Pugh_score

In medicine (gastroenterology), the Child-Pugh score (sometimes the Child-Turcotte-Pugh score) is used to assess the prognosis of chronic liver disease, mainly cirrhosis. Although it was originally used to predict mortality during surgery, it is now used to determine the prognosis, as well as the required strength of treatment and the necessity of liver transplantation.

http://www.hepatitisc.uw.edu/page/clinical-calculators/ctp





Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on November 29, 2016, 12:37:56 pm
Strike,
 congratulation on your last bottle! I hope this helps with your health all around. Wow, it is sad the damage the hcv causes. The misery of not feeling well. On the upside you will be rid of this once and for all! I have noticed we have the same genotype 3a. I was told it is not as common and until now finally have something that works on most of the genotypes. I am hoping that for you that this may control your ascites and maybe reverse some of the damage. Same for Lynn.
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 29, 2016, 07:16:44 pm
Hi there:

I got results of my four week tests. I'm UNDETECTED

My liver enzymes are now normal as well.

Dr was very happy for me and said I was "rapid responder". So I wont need 8 week test. He said only test further I need now is the six-month one. Since he had seen cases where there was relapse in that time-frame. I had assumed (perhaps wrongly) that he meant 6 months after completion of Epclusa. and that he was operating on the SVR24 protocol. So i asked if I could have an EOT test and 3-month test as well.

He said I can have those as well and thought my insurance would cover those.

In retrospect, it is possible that by "six month" test he meant six months after beginning treatment? Which would really be SVR12 and not SVR24 as I had assumed. I thought it was well-established by now that the key test is SVR 12. Possibly, he is operating on the older paradigm of SVR 24. I wont see him again until late January when I'm done with the Epclusa for EOT test. So I guess I could ask then.
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on November 29, 2016, 07:19:17 pm
Awesome! Congratulations Elias. He probably meant 6 months from start of treatment.
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 29, 2016, 07:27:49 pm
Thanks much. I sure hope he meant 6 months from start of treatment!!!

Not six months after end of treatment..

I'd really like closure with this Hepatitis C trauma and focus on healing my liver and whatever else it had messed up. I've had this most of my life and only learned of it 2-3 months ago
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on November 29, 2016, 10:04:12 pm
Hi Elias,

I agree with Mw. I think he meant 6 months after the beginning of Tx.
(My specialist confused things like that a bit, too!).

... By the sound of it, you are good to go: i.e. a test at EOT, and another one 12 weeks post-treatment?

CONGRATS BTW - that's FANTASTIC news!!





Title: Re: Starting Epclusa on Tuesday
Post by: Sparky on November 30, 2016, 11:05:51 am
Hello all, I haven't been too active with the forum lately. My Harvoni experience was not successful. That was my second attempt, 1st was the weekly injection with pills. So that's strike two and now  I am deciding if I am going to try the Epclusa my doctor offered to me. It's not only the third try to beat HCV but a new set of side effects which aren't really known yet.
I am thankful for the progress in medicine and hopeful for possible cure!
God Bless   
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on November 30, 2016, 11:12:36 am
Sparky - try Epclusa. No real side effects in my case except some hair loss(taking Biotin) and tendency to take naps when not engaged(and in you favorite reclining chair).

Hope it should be and easier ride and much more successful :)
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 30, 2016, 11:57:44 am
Hi Sparky:

Theres a new HCV  drug by Gilead which I'm told due for approval soon. Its a combination of the two drugs found in Epclusa as well as a third DAA called: "Voxilaprevir"

This drug is specifically intended and tested for use in those who failed Harvoni

It was briefly discussed on this forum:

http://forums.hepmag.com/index.php?topic=4121.0 (http://forums.hepmag.com/index.php?topic=4121.0)

More here:

https://hepatitiscnewdrugs.blogspot.com/search?q=vox (https://hepatitiscnewdrugs.blogspot.com/search?q=vox)

https://hepatitiscnewdrugs.blogspot.com/2016/04/ilc2016-sofosbuvirvelpatasvir-and.html (https://hepatitiscnewdrugs.blogspot.com/2016/04/ilc2016-sofosbuvirvelpatasvir-and.html)

You might try to get in touch with HHBurme here about it as he was in that trial.

Ask your doctor when approval might be expected.

At what stage in your Harvoni treatment did u learn it was unsuccessful?


Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on November 30, 2016, 05:44:51 pm
@ Elias, I am so happy for you! Good job! It is very inspiring!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on November 30, 2016, 06:00:32 pm
Thanks, bluebird.
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on December 05, 2016, 04:37:31 pm
Hey all,
  I'm checking in to see how everyone is doing and to give you a glimpse of my life after epclusa. I took my last pill Thursday night and I was very nervous about what to expect after treatment. I read a lot of posts about people on other meds who had some problems. My first night off, I could not sleep. This is most likely bc epclusa was sort of like a safety blanket sleeping pill for me for 84 days. It put me to sleep and it gave me peace of mind. Without it, I'm back in Insomnia's ugly grip. However, the following day I was not very tired. Slept great Saturday night and felt good Sunday although I had a headache for the majority of the day. I'm not sure what the cause was. Slept great Sunday night and today I feel amazing. I haven't had this much energy in years. I do have some annoying heart palpitations but don't think it's from treatment. I do still drink the same amount of water now that I did on treatment, not bc I want to but bc I'm still so thirsty! Did my 12 week labs today and I'm sure it's undetected. I think this was the best decision I've ever made. I hope you all have a wonderful, smooth transition into your new life after treatment. Please keep me updated. Best of luck to you all!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on December 08, 2016, 04:35:00 pm
Hi Epclusa family members:

I start my third bottle of Epclusa a week from now Saturday. Sleep remains the major issue for me on this.

Mw:

 I wish the Epclusa would put me to sleep as it did for you. Hope you quickly adjust to being off that , and sleep normalizes. Insomnia is awful. I have no headaches and the fatigue is probably down to sleep deprivation. Diazepam helps only a little.

To be precise the insomnia began during the insurance denial and appeal process. But got worse, though sporadically, after I finally began the Epclusa. Hard to say how much of this is due to Epclusa and how much to intensification of preexisting sleep difficulties.

We will soon be the first on Epclusa to attain SVR outside of the clinical trials. So far no one outside of clinical trial has attained SVR-- simply because not enough time since FDA approval last summer has elapsed.

Starting about mid-December, the first wave of Epclusa SVR's "in the wild" should start rolling in!
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on December 08, 2016, 06:56:43 pm
2 weeks left until I'm done! I have been napping all day and up most of the night, which was fine when I wasn't working. :P
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on December 08, 2016, 07:53:01 pm
I am starting my third bottle tomorrow, on Friday ( I am one day ahead of you, Elias). I am sorry to hear about your insomnia. Have you tried a camomile tea? Also I noticed if I go to bed around 8:30-9:00 pm I sleep well till 4-5pm.  If I go later, I can't turn asleep  and waking up every couple of hours. But definitely I  sleep better since I started taking Epclusa.  I had 8 weeks blood test done yesterday, but will know the results sometimes next week. Have a great evening, everyone! Sweet dreams:)
Title: Re: Starting Epclusa on Tuesday
Post by: sammantha55 on December 08, 2016, 08:08:02 pm
Congrats Mw on finishing treatment, please keep us posted on how you're doing post tx, hope all goes well ,Elias, Bluebird and Strike you're almost at the finish line. Had a set back on my start date, I was notified my unit was closing and needed to  transition into another position to keep my health insurance, it was just too stressful to begin treatment at that time, now things are settling down so I'm hoping to start soon..Good luck everyone, you're posts are so encouraging !
Title: Re: Starting Epclusa on Tuesday
Post by: elias on December 08, 2016, 09:43:57 pm
Quote
I am starting my third bottle tomorrow, on Friday ( I am one day ahead of you, Elias)

Ooops!! I actually start my third bottle the Saturday after this coming one. December 17. So I had to correct my own post above. Sleep deprivation is really starting to take its toll on me. Good that I'm keeping records of the pills I took. Hope I don't forget where I keep those records though
Title: Re: Starting Epclusa on Tuesday
Post by: elias on December 08, 2016, 09:48:19 pm
Quote
Had a set back on my start date, I was notified my unit was closing and needed to  transition into another position to keep my health insurance, it was just too stressful to begin treatment at that time, now things are settling down so I'm hoping to start soon

But all is ok with insurance now,Samantha. Right?

Glad all is settling down. For me the insurance issues were way more stressful than taking the medicine. I know it provoked the severe insomnia and the drug is just dragging that out
Title: Re: Starting Epclusa on Tuesday
Post by: sammantha55 on December 09, 2016, 12:08:34 am
Hi Elias, I've moved to another department within so my insurance stayed as is and isn't an issue thankfully but the stress of closing our unit and having to find another position was a lot to deal with at the time . Sorry to hear the insomnia isn't letting up, are you able to sleep during the day at all ? hope it gets easier, keep us posted.. congrats on being undetected, that's great news!!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on December 09, 2016, 12:43:31 am
Hi Samantha.

Sometimes I just doze off out of exhaustion. But even more tired after that.

Hope you can get started soon on the Epclusa, now that things have eased up.

The real challenge ahead for me will be to reach a lower fibrosis level after HCV is cleared. I'm hoping that part is more under our control
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on December 09, 2016, 07:59:40 am
Hi friends! I't been awhile since posting. Congrats Mw on EOT! I too finished, Took my last pill on Monday. I don't have any problems sleeping, and feel pretty good! I used to have lower belly pain, It;s totally gone. I still have some ankle swelling with pain in my left ankle, but it is feeling better than before treatment. I am not as tired as before either!  It feels great to be done, and it will be interesting to see how I feel once the Epclusa has cleared. Mw - keep us posted on how you are feeling. Hang in there everyone!!!
Title: Re: Starting Epclusa on Tuesday
Post by: rk on December 11, 2016, 01:21:49 am
Congrats Phoenix, I remember you mentioned ankle swelling. Did that start or get worst on Epclusa? I have some of that as well brought on by another med but Epclusa seems to make it worst. I have 20 days to go, will see if it lessens after EOT.
Title: Re: Starting Epclusa on Tuesday
Post by: Phoenix17 on December 11, 2016, 09:50:32 am
Hi rk- My ankle had been swelling and hurt for awhile before treatment. The swelling in my ankle went down quite a bit on Epclusa, but gets worse if I am on my feet for a long time. There is still some pain, but not as bad. You are almost done as well! Yay!
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on December 14, 2016, 12:56:59 am
Hello everyone! I hope everyone is doing well and getting ready for Xmas!
Title: Re: Starting Epclusa on Tuesday
Post by: Lynn K on December 14, 2016, 03:11:05 am
There are many causes of mildly elevated liver enzymes other than hepatitis c. Have you asked your doctor for their thoughts about the reason you liver enzymes continue to be still somewhat elevated?

http://www.mayoclinic.org/symptoms/elevated-liver-enzymes/basics/causes/sym-20050830

"Causes
By Mayo Clinic Staff
Many diseases and conditions can contribute to elevated liver enzymes. Your doctor determines the specific cause of your elevated liver enzymes by reviewing your medications, your signs and symptoms and, in some cases, other tests and procedures.

More common causes of elevated liver enzymes include:

Certain prescription medications, including statin drugs used to control cholesterol
Drinking alcohol
Heart failure
Hepatitis A
Hepatitis B
Hepatitis C
Nonalcoholic fatty liver disease
Obesity
Over-the-counter pain medications, particularly acetaminophen (Tylenol, others)

Other causes of elevated liver enzymes may include:

Alcoholic hepatitis (severe liver inflammation caused by excessive alcohol consumption)
Autoimmune hepatitis (liver inflammation caused by an autoimmune disorder)
Celiac disease (small intestine damage caused by gluten)
Cirrhosis (early stages of liver scarring)
Cytomegalovirus (CMV) infection
Dermatomyositis (inflammatory disease that causes muscle weakness and skin rash)
Epstein-Barr virus
Gallbladder inflammation (cholecystitis)
Hiatal hernia
Hemochromatosis (too much iron stored in your body)
Hypothyroidism (underactive thyroid)
Liver cancer
Mononucleosis
Pancreatitis (pancreas inflammation)
Polymyositis (inflammatory disease that causes muscle weakness)
Toxic hepatitis (liver inflammation caused by drugs or toxins)
Wilson's disease (too much copper stored in your body)

Causes shown here are commonly associated with this symptom. Work with your doctor or other health care professional for an accurate diagnosis."
Title: Re: Starting Epclusa on Tuesday
Post by: elias on December 15, 2016, 06:02:07 am
By my calculations, the first wave of patients taking Epclusa--outside of the clinical trials-- should be reaching SVR 12 about this time!!!

It was first approved here in USA by the FDA on June 28, 2016.

Wish there were a clearinghouse which records how many of those prescribed did reach SVR 12. So we can know if "real world" results matches up with those in the clinical trials. The success rate in those clinical trials were amazingly high. Lets hope its the same afterwards
Title: Re: Starting Epclusa on Tuesday
Post by: Rich1957 on December 15, 2016, 06:31:49 am
Well it's been a minute since I 've been on here . Finished my tx of Epclusa / ribavirin on 10/12. Got my Nov results and everything is great. Going back on 12/21 for my next round of bloodwork. That will be 10 wks after tx. Seems like all I want to do is eat since I finished treatment. But I am feeling fantastic. Hope everyone has the same results as I have. Best wishes to all and a Merry Christmas.
Title: Re: Starting Epclusa on Tuesday
Post by: elias on December 15, 2016, 07:32:04 am
Awesome Rich!

Seems you're riding in on that "first wave" i spoke of above...
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on December 15, 2016, 07:42:05 pm
Will be done next week 8) I'll let you know!
Title: Re: Starting Epclusa on Tuesday
Post by: Karmarain78 on December 29, 2016, 03:44:00 pm
Glad I found you guys I have been reading the comments and have a little different situation I started took one pill 3 days ago  and of all time went to jail for a very old traffic ticket just got out and have been freaking out about missing all I can do is pick up where I left off. Does anyone think this will effect the treatment?
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on December 29, 2016, 03:55:54 pm
Karmarain,
  If you only took one and are now going to resume after 3 days I think you'll be fine. If it was the middle of your treatment it would be a different story. I wouldn't worry about it too much. One pill isn't going to make a huge impact on the outcome, in my opinion.  Best of luck to you!
Title: Re: Starting Epclusa on Tuesday
Post by: Karmarain78 on December 29, 2016, 04:48:13 pm
Thank you so much for replying  I don't really understand all teams yet, but under your comment on your status is it saying after 4 weeks you were undetected?
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on December 29, 2016, 04:52:02 pm
Yes,  I need to update it. I was undetected at 4 weeks. I finished treatment on 12/1. I was undetected at 12 weeks with normal liver panel. I'll take the 12 week svr test March 1st.
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on December 29, 2016, 07:17:14 pm
Finished 12/21 - got lab draw 12/27.  Anticipation!
Title: Re: Starting Epclusa on Tuesday
Post by: Karmarain78 on December 29, 2016, 09:42:40 pm
Awesome thank you for explaining that to me and congratulations to both of you
Title: Re: Starting Epclusa on Tuesday
Post by: sammantha55 on December 30, 2016, 12:47:56 am
How is everyone feeling post epclusa tx ,any residual  side effects .Congrats MW and strike for making it to the finish line  .) hope you're doing well and good health continuing into 2017..
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on December 30, 2016, 09:25:34 am
Sammantha,
   I feel good, no side effects after treatment for me. I sleep better and I'm still tired often but that may be caused by other things. I feel more energy overall, but no problems caused by Epclusa. Did you start treatment yet?
Title: Re: Starting Epclusa on Tuesday
Post by: Ineedsleep on December 30, 2016, 12:31:06 pm
Hi I have been on epclusa for almost 4 weeks and I am having horrible side effects I can't figure out how to work this site can someone help me get started with this group is really need to talk about this with other who are going through this to.
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on December 30, 2016, 12:40:12 pm
Ineedsleep,
  Sorry to hear about your side effects. You can start your own thread by clicking on new topic on the main page, once you select the "on treatment" forum.  Then other people can comment. You can receive email notifications when someone responds. And to reply you just respond like you just did.
Title: Re: Starting Epclusa on Tuesday
Post by: Ineedsleep on December 30, 2016, 12:51:01 pm
Hello my name is christina. I am almost 4 weeks through my epclusa.  At first I was fine. Then I got bronchitis and was really sick. Ever since I got that cold my side effects got bad. I can't sleep. I am having horrible anxiety and a always feel like I'm going to have a panic attack. I went 5 days with no sleep and since I am having such bad anxiety my hair is falling out.  I lost 10 pounds and am only 100 pounds. I am scared and need support to finish this medicine. I want to be cured so bad.  My gastroenterologist is away till Tuesday.  I spoke to the doctor on call about my side effect and they were not helpful at all . He told me I should not be feeling like this and to stop the epclusa.  I do not want to stop it so I am trying to get through it.  I need a buddy here that I can talk to , so I can get through this. Can someone help me.  Also I am having trouble figuring out how to use this forum.  I have never been in any forums before. 
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on December 30, 2016, 01:11:04 pm
Christina,
  I completed 12 weeks of epclusa on 12/1. Welcome to the forum. I think possibly your anxiety can be causing your sleepless nights. I've been there.  Your sleep is very important right now. I would suggest you talk to your doctor about taking benadryl or another sedative he can prescribe that will be safe for your liver and treatment.  I took melatonin and benadryl on treatment and I slept because of those medications. However, there are medications that can mess with the effectiveness of Epclusa so check with your doctor or pharmacist.  About the doctor who told you to stop taking it, I wouldn't do that. Unless it's medically necessary for you to  stop treatment,  I think you should try to control the effects first with something for sleep or anxiety that your doctor approves. Call your pharmacy and see what they recommend. My pharmacy gave me more guidance than my doctor. Try some benadryl before bed. What time are you taking the pill? Have you had any blood work done to see if you are detected or undetected? What condition is your liver in? Feel free to private message me on the forum if you need someone to talk to.
Title: Re: Starting Epclusa on Tuesday
Post by: Ineedsleep on December 30, 2016, 02:50:10 pm
Thank you so much for getting back to me.  Yes I have anxiety medication and prescribed sleeping meds but it seems they are not as effective as they were prior to starting.  I was totally fine for the first 3 weeks and slowly started to feel worse.  My anxiety is so bad my hair is falling out.  My skin is very dry and I lost about 10 pounds in a month . I don't want to give up.  I am just scared. This all started around the holidays. My doctor is away till Tuesday so I am trying. Yeah they have not asked me to come in or anything. I am going in January 3rd to give blood so they can check my levels . I want to find out my viral load and get all the information I see on here. My doctor never gave me any information about my levels. I am only 31 and would like to put this past me . I hope the side effectso don't get worse. Also I have no appetite, I am trying to gain the weight back that I lost.  This is just very hard for me. I am so thankful to have been given the medicine. I need to get through it. I find the pharmacy helpful also. I have been getting strange feelings in my stomach almost like butterflies or nervousness.  I'm scared to call the doctor again because I think they will tell me to stop the medication. Did you have any side effects like mine.
Title: Re: Starting Epclusa on Tuesday
Post by: skpp930 on December 30, 2016, 02:58:00 pm
This medicine has about killed me, I've had every side effect you can think of. Don't let people tell you it's in your head. I've been on it nine weeks. The epclusa will not let anything help me as far as getting through the side effects. I feel been taking clonzapam and now when I take it, it just makes it worse. Everything is reacting bad to it. I'm about done with it. It has started doing things to my brain now. I've been to the ER twice, 2 emergency clinics. One doctor told me all my mucus organs in my body are inflamed. Urinary tract burning, bladder and stomach burning, now my brain is messing with me. My doctor thinks I'm crazy. I'm about done. I don't know if I can be cured in 9 weeks, I've been none detected both times, normal blood. I'm just fixing to take my chance. I dread the withdrawals and pain I'm gonna be n from what this medicine has done to my body
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on December 30, 2016, 03:01:19 pm
Well maybe see if the pharmacist can recommend anything for your stomach. My side effects were mainly, chest and back pain, being tired and I had insomnia in the very beginning.  I've struggled with anxiety and insomnia before treatment,  not so much now. I actually haven't taken a sleeping pill in weeks. Your doctor had to do bloodwork on you in order for you to get the meds so ask him next time you speak with him. It would be good for you to know. On Jan 3rd, I'd ask your doctor to run some extra tests to check everything, since you are feeling this way. I think if you could get your anxiety level down, you'd feel better. Again, I highly recommend you call the pharmacy that gave you the medicine.
Title: Re: Starting Epclusa on Tuesday
Post by: sammantha55 on December 30, 2016, 03:04:36 pm
Hi MW, not yet, still training in my new job and it's stressful at the moment but am planning to get going around April, that's my plan, I'm getting a full health work up before starting including cardiac which will follow through after new year, so glad to hear you're doing well, you'll sail into the new year hep free , what a great way to start 2017.. thanks for checking in , your posts are helpful..
Title: Re: Starting Epclusa on Tuesday
Post by: elias on December 30, 2016, 03:10:38 pm
Hi Christina:

I am almost finished my 10th week of Epclusa. I have severe insomnia too. And panic attacks as well

It actually began before the Epclusa when I found out I had HCV and the bizarre way  i got it. But it worsened on the Epclusa. Sometimes better, sometimes worse. So its been variable.The doctor prescribed diazepam. It does help some but not as much as it used to. So what you're experiencing isn't only you. It's likely a combination of real side effect of med and anxiety about the treatment.

I looked at the journal articles of the large scale Phase III studies on Epclusa. Seems about 10% do report insomnia. But the placebo group report about same.  So it is listed as a side effect, but a bit unclear..

It is not grounds for discontinuing the medication!

I joined a gym and vigorous exercise helps some too. But sometimes I'm even too tired to get there.

In terms of appetite, if you feel you can't eat, try soups and healthy juices. Until that settles down some.

I got my 4 week on treatment viral load results a month ago. I was undetected, and the doctor was happy for me. My sleep got better some after that. And a bit less panic too. You're supposed to get the 4 week on-treatment test , to make sure youre taking the medication properly. So maybe ask for that test. You might get an emotional lift when you learn your viral load has gone down dramatically, if not gone altogether

-elias

Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on December 30, 2016, 03:14:16 pm
Skpp and Ineedsleep (and Christina),

Are you drinking plenty of water - and eating a bit of something (preferably healthy)?

Exercise can help, too, as Elias says.

Title: Re: Starting Epclusa on Tuesday
Post by: skpp930 on December 30, 2016, 03:16:36 pm
I'd have to put a water hose in my mouth to drink anymore, not everyone is lucky with these side effects
Title: Re: Starting Epclusa on Tuesday
Post by: skpp930 on December 30, 2016, 03:18:25 pm
Who can exercise this sick? I use to walk everyday, ride my bike, now I've been stuck in this bed for 9 weeks
Title: Re: Starting Epclusa on Tuesday
Post by: elias on December 30, 2016, 03:22:08 pm
Can you get a buddy to take long walks with you? Or go to the gym?
Title: Re: Starting Epclusa on Tuesday
Post by: skpp930 on December 30, 2016, 03:22:58 pm
I had to take a sick leave, my co. Don't do paid either. Healthy, Im a material handler for a construction Co. 2x4, plywood, everything you can imagine for bridge building. I was in good health except for having Hep c. Now I feel like I'm dying from this epclusa
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on December 30, 2016, 03:27:18 pm
Skpp930,
  How are you sleeping? I found that when I didn't get at least 9 hours of sleep, my side effects intensified.  Just a thought.
Title: Re: Starting Epclusa on Tuesday
Post by: elias on December 30, 2016, 03:37:40 pm
Skpp930,
  How are you sleeping? I found that when I didn't get at least 9 hours of sleep, my side effects intensified.  Just a thought.

Exactly same here, MW!!! With little sleep, everything hurts. With enough sleep, all is well
Title: Re: Starting Epclusa on Tuesday
Post by: elias on December 30, 2016, 04:40:37 pm
Who can exercise this sick? I use to walk everyday, ride my bike, now I've been stuck in this bed for 9 weeks

There are exercises one can do even while bed-ridden until u get better. I'm thinking of Qi-gong and things like that. they have modifications such that those can be done while infirm..

As far as drinking lots of water. I found too much of that disrupted my sleep, as Id need to go pee all night long. I changed to hot spiced cider. I think its just as hydrating (not sure but i hope so..) and its much easier to do.

I do have sense of burning or dryness of my skin. And especially burning eyes sensations. Might be hydration issue, sleep deprivation,  or some side effect. Not sure..
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on December 30, 2016, 05:59:27 pm
Apologies Skpp. I hadn't quite realised that your side effects were so bad.

Your body is going through a huge transformation.

We are hoping that you can hang in there - but you don't want to be actually harming yourself.
You've got - what - three weeks to go?

Some people had a similarly bad time on Harvoni.
These drugs cause - or can cause 'mitochondrial' damage, apparently.
It's just a newly emerging field of inquiry [because these drugs haven't been around for long].

The Harvoni sufferers contacted Gilead, and the FDA, to let them know what was  going on.
To be sure - they will be looking into it.

That's hardly of much comfort to you now, of course.

I'm really sorry you are suffering like this.

Hopefully others will chime in soon who know more about this stuff than I do.

Title: Re: Starting Epclusa on Tuesday
Post by: Ineedsleep on December 30, 2016, 08:14:41 pm
Drinking lots of water can't drink more I can't pee all day long non stop.  Exercise is hard when I can't even leave the house I am in pain and can barely take care of myself right now.  I just need to sleep and make the anxiety stop .  Taking all kinds of anxiety meds medication to sleep.  Nothing is really helping.  I'm scared I will end up dedicated to all thee pills while trying to fix this.  I don't know what to do . Almost half way through. If I continue to feel this way i can not go on and it bothers me so bad as I feel I am not being strong enough.  I just need someone to talk to . It helps to know it's not just me.
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on December 30, 2016, 09:05:43 pm
It's not - or shouldn't be, a matter of how strong (or not) you are.

Lots of people are scanning these boards, and thinking about what you have written - even if they haven't posted yet.

We are with you.
Title: Re: Starting Epclusa on Tuesday
Post by: rk on December 31, 2016, 12:21:44 am
I just need to sleep and make the anxiety stop .  Taking all kinds of anxiety meds medication to sleep.  Nothing is really helping.  I'm scared I will end up dedicated to all thee pills while trying to fix this.  I don't know what to do . Almost half way through. If I continue to feel this way i can not go on and it bothers me so bad as I feel I am not being strong enough.  I just need someone to talk to . It helps to know it's not just me.

I would not want to see you or anyone give up on treatment. Only then if its medically necessary. Obviously you'd have to start again and maybe with a combination of drugs.

I would try to be creative. Review with your pharmacy & or doctor everything you are taking. Gilead has a 24 hour help line called Onward as well. Its possible there is an interaction with the anxiety med's. I'm familiar with with lack of sleep and the effects. I read a lot on the subject and the most useful was to have a daily routine. From a wake up time, no naps and a set bedtime. Things like diet and exercise all play a roll.

It took time but it kept getting better. Now its OK, not good or poor. Something you might consider is behavioral health or Hypnotherapy. I saw a hypnotherapist for something unrelated and he worked with Lupus patients. They need all the help and will power they can get.

Just trying to throw a few things in your direction. Its sort of a detour, if you will. Your mind is so engaged with issues you seem to be at a stand still. Stay strong and finish.

Before I started I imagined some bad circumstances. I also enforced that clearing the virus was my number one priority. Fortunately for me it was smooth ride. I expected the worst and got near the best.

I wish you good luck, its in your corner.  Rod

Title: Re: Starting Epclusa on Tuesday
Post by: skpp930 on December 31, 2016, 05:35:37 am
I'm so tired of people playing down what I'm going through. Do you think I want to die? I've called Gilead 4 times, the speciality pharmacy 10 times. I've done everything possible. Did you ever think maybe people's bodys have different reactions. I'm glad you are getting through with yours, and no it's not the anxiety meds. I stopped them, the epclusa wouldn't let them work anymore. I've tried everything. I just hope I get my mind back. This has been a nightmare. You know also, if people had a doctor that tried to help them and listen, that would help alot
Title: Re: Starting Epclusa on Tuesday
Post by: skpp930 on December 31, 2016, 05:38:40 am
This epclusa wouldn't let anything else work that I took with it. When you come to the conclusion that your rather deal with Hep c than take a drug to save your life, that should tell you how bad the side effects are
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on December 31, 2016, 03:13:01 pm
It may help if one of you folks experiencing unpleasant side-effects from Epclusa starts a new thread (for example, in the 'On Treatment' section).
That way you will attract in other sufferers (including those that are, or have experienced adverse reactions to Harvoni) ... and people who may have helpful advise or resources to share.

Only a limited number of people will be following this thread.

P.S. I'm so sorry you guys have to deal with this shite.

Title: Re: Starting Epclusa on Tuesday
Post by: KimInTheForest on December 31, 2016, 09:58:17 pm
Very sorry to hear about all the problems & side effects you are having from Epclusa, Christina and Skpp. I believe you. I know it is not "all in your head." It's true that everyone does react differently, and some people seem to have loads of problems on drugs that others tolerate with few to no problems.

Christina: regarding weight loss and no appetite, I had the same problem on Harvoni+ribavirin. I lost a lot of weight and was skinny to begin with. My advice: even if you can't get the calories in you that you need, be sure to get good nutrition. Smoothies are a good and easy thing to chuck down you several times a day when meals don't appeal. My smoothies have banana, carrot, berries (if I have them), a little kale, 1 tbsp flax seed, a raw egg (free range), good quality yogurt, and some kind of good organic fruit juice for extra liquid. Other people here were recommending store-bought protein drinks. I didn't like those because label had lots of chemicals. I'd rather just eat real food.

ativan/lorazepam can help with anxiety and is pretty benign for short term use.

lots of people here used benadryl as sleep aid during treatment. i did not find it helped me much. but gravol (for motion sickness) did help put me to sleep.

in general, most people's side effects with these drugs disappear shortly after they finish treatment. so hold that thought in your head and let it pull you through the finish line. do everything you can to make it to the end because at least you will then be free of Hep C.

good luck!
kim
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on January 03, 2017, 02:20:54 pm
Wow on the intense side effects of the epclusa!
It sounds like Skip & Ineedsleep you are severely allergic to something in the epclusa. Also wonder if something else is going on in your body that you are not aware of! They just came out with a better version of treatment that is suppose to be released soon that you may fair better. I am allergic to everything and would be seriously freaking out if I was having close to anxiety attacks, hair loss or not being able to sleep after one day let alone 5. If you have insurance you may see if you cannot get some answers through a blood panel work up. This is not normal! I hope you two feel better and get some answers and piece of mind! I have 20 days to go and not one negative side effect. My Dr. is PO'd at me because I have not gone in for my 30day blood test. Having the genotype 3a and hearing of people not clearing it out of their system in the first 30, I put out of my mind. I feel in hindsight though,  I should of made that a priority for others that are genotype 3a. Going to get my blood drawn now! I will keep all of you posted with my results & Happy New Year to everyone!
Title: Re: Starting Epclusa on Tuesday
Post by: Ineedsleep on January 03, 2017, 02:29:56 pm
I went for my 6 week blood today and don't know the results yet. I am so mad at myself for starting this. I was healthy other than the hep c. I have prescribed medso for anxiety and sleep.  It's just so hard. I can't even run my business.  I don't know what to do.  This is crazy.
Title: Re: Starting Epclusa on Tuesday
Post by: skpp930 on January 03, 2017, 04:40:33 pm
Yeah, I just got back from the crazy gastro Dr. I've been seeing. He still doesn't believe anything I tell him about how sick I am and is sending me back to work tomorrow. I'm still so mixed up I don't know how I'm gonna do it and keep my job. That medicine messed up my mind.
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on January 03, 2017, 07:57:39 pm
Well, I made it through. Last pill 12/21. Results are in for 12 week labs:
HepC - undetectable
AST - 30
ALT - 23
Alkaline Phosphatase - 252
Bilirubin - only slightly above normal

I believe there may be a gallbladder issue, although I have had no problems

However, we seem to have a problem...Serum Glucose - 279(i even fasted) I was prediabetic before treatment (125) What now?!?

And any hair loss issues went away immediately after starting Hair, Skin and Nails(Biotin)
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on January 04, 2017, 07:40:00 pm
Yay congratulations Strike!!
I am right behind you. Went through my pills and must of ate 2 pills in one night. Dang anybody else do this?Looking back I think I remember the night. I had a slight headache the next morning and contributed it to not enough water! Should I worry about it? Its past tense now. Anyone know? Last day 1/22/16
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on January 04, 2017, 08:41:53 pm
You're doing 12 weeks, aren't you Pepperann?
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on January 04, 2017, 08:54:48 pm
Hi Andrew, Yes I am on the 12 week plan. I Started October 30th and my  end date is Jan 22nd, 2017.      :)
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on January 04, 2017, 08:59:08 pm
You have nothing to worry about, then.

... You wouldn't have if you were on 8 weeks, either - but 12 is of course safer.

Have a nice day!

Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on January 04, 2017, 09:05:29 pm
Hi Andrew,
Are you talking about taking 2 pills in one night? are you thinking it would shorten my treatment thus maybe not being effective. I was thinking taking 2 pills in one night might be toxic and might hurt an organ or something.Do you know anything about that? :o
Title: Re: Starting Epclusa on Tuesday
Post by: elias on January 04, 2017, 09:16:56 pm
Hi Pepperann:

I wouldn't worry about that double dose. It was some time back, and you were ok, except for some mild headache next day. I have fear of doing same thing or forgetting so I put check mark next to list of days on index card

As for shortening treatment, I agree with Andrew here. Its one day less than 84.

In official medical report I've read "non-compliance" was defined as missing 7 or more doses. It's of course best to not miss any or double-up. But I'm sure it's not all that uncommon
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on January 04, 2017, 09:18:38 pm
I agree.

Meds are designed to have a bit of slack in them.
The pharma co's know that people forget doses, inadvertently take two at once, or are late etc. sometimes.

Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on January 04, 2017, 09:37:40 pm
That is good news and makes sense. Thanks you two!   ;D
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on January 05, 2017, 01:13:54 am
Skpp,

How did you get on at work?
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on January 05, 2017, 06:22:52 am
Hello! I haven't posted for a while since there was not much going on to report. Today is my last day of taking epclusa, my last pill is in the empty bottle, in the middle of the table as a reminder of a long journey. Actually, three months were not bad at all- the only thing I issued was do not forget to take a pill. Despite I was taking it at the same time and set an alarm on my phone, I had delays in time twice. But it is over now! I hope it is! Yesterday I had my 12 weeks blood test and have another week to wait till I will know the results! I am pretty nervous and anaxious to see the results, but no matter what is ahead of me, I know the first step is over, and without your help and support, dear people from all over the world, it would be more stressful, and more sad and painful road to take. Thank you for being a great support! I wish everyone and each of you do not give up, do not stop taking medication. I will post results next Monday.
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on January 05, 2017, 10:45:17 am
Congratulations Bluebird!
I am curious as well but it looks like your 8 week check you were clear? Nice! Right behind you!
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on January 05, 2017, 02:08:41 pm
Pepperann,

Just rounding out the above:
I found some material from Gilead ('Epclusa Product Monograph') which seems to take a pretty laid-back approach to overdose.
i.e. essentially watch patient, and check vital signs.
Some patients during trials were exposed to 1200 mg of sofosbuvir, and [others to] 500 mg of velpatasvir - and they were all fine.

Bluebird,

What a sweet message. Thank you!
... and best of luck with your results!
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on January 05, 2017, 03:24:42 pm
Pepperann, for some reason my Dr. didn't  order test for viral load and virus count with my 8 weeks blood test, so I don't know what my numbers could be back then.  I need to reduce my ast and alt. If they won't drop to a needed range, I am in a big trouble, whichmeans that Drs. need to find another cause... Oh, well. Right now I want to believe that this is over! And everything is fine! And I wish you and everyone good luck and speedy recovery! What a journey...
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on January 05, 2017, 07:28:18 pm
Hi Bluebird,

My doctor did not do labs at 8 wks.  week 12 results were pretty much the same as 4 wks;
hepc undetected
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on January 05, 2017, 07:55:58 pm
Has any one else had a problem with Glucose?
Title: Re: Starting Epclusa on Tuesday
Post by: elias on January 05, 2017, 08:57:47 pm
I didn't have problem with glucose.  Actually, my glucose level was way lower- 78
after 4-weeks since starting Epclusa.  I was pleasantly surprised, but I will ask to retake the basic metabolic panel after this is all over. To make this isn't a fluke.

It is strange coincidence that my glucose level prior was about same as you report here ~101--105. If i were you, I'd ask to repeat that after some time has passed since Epclusa because the jump to the 395 reading in so short a period seems odd.

Could it have been that the 105 reading was a fasting level. And those 2 higher readings while on Epclusa were after a meal or sugar drink? I know vl testing does not require fasting

 Might be worth reporting to FDA if this is a side-effect of Epclusa. Not been reported so far as far as I know

 HCV viral clearance is often associated with improvements in glucose tolerance
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on January 05, 2017, 11:24:21 pm
Thanks, Elias! I hope I don't end up diabetic after all this :}
Will get a fasting glucose as soon as I get my new insurance in place.
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on January 05, 2017, 11:34:31 pm
My glucose serum before treatment was 106, but dropped to 95 while taking epclusa. Let see where it is now next Monday...
Title: Re: Starting Epclusa on Tuesday
Post by: elias on January 05, 2017, 11:42:07 pm
Quote
Thanks, Elias! I hope I don't end up diabetic after all this :}
Will get a fasting glucose as soon as I get my new insurance in place.

I doubt it. clearing the HCV generally improves insulin resistance, hence glucose readings.  I'm still curious if those 200--300s readings were fasting levels? My hunch is that no

Bluebird wrote:

Quote
My glucose serum before treatment was 106, but dropped to 95 while taking epclusa. Let see where it is now next Monday..

I'm curious how it holds up next week. I'm concerned bout insulin resistance and glucose, because of family history. Quite possible those 100+  levels (just bit borderline..) we had were driven by HCV and with luck may go down and stay down after it clears


Title: Re: Starting Epclusa on Tuesday
Post by: rk on January 06, 2017, 01:12:24 am
Today is my last day of taking epclusa, my last pill is in the empty bottle, in the middle of the table as a reminder of a long journey.

Hello Bluebird, congratulations! I did similar except I set all 3 bottles out. Not sure why but I kept them. I kept track on a calendar and checked off each day at 8 am. That way if I thought I may have missed a dose I could count days and pills. In the three months I was late one day by 80 minutes and another by an hour. My 12 week test was negative as expected, its been that way since day 12. Yes its great to have others here for support. It means a lot, for some here options are/was limited.

Its funny how this thread attracts Epclusa users. It was started by Phoenix 17, then Mw2324 started & chimed in. Then MommaT chimed in I believe she started earlier. Then Andrew j, then I come in after about a month. If memory serves me Bluebird you was a week later , then Elias etc. If I missed someone sorry but we are among the first to take Epclusa on this forum. I did not think I was going to qualify for epclusa. But I have a good doc with an excellent staff.

Anyway good luck, its more of a formality, the real test comes in another 12 weeks. 
Title: Re: Starting Epclusa on Tuesday
Post by: elias on January 06, 2017, 01:37:46 am
Quote
If I missed someone sorry but we are among the first to take Epclusa on this forum.

We're actually among the first to take Epclusa on this planet!! Outside of those clinical trials, of course. .. Phase IV as it's often called. Or "Out in the wild"

A new wave of SVR's should start rolling in quite soon
Title: Re: Starting Epclusa on Tuesday
Post by: janice973 on January 06, 2017, 05:08:43 pm
Christina/skipp-- I took sovaldi/riba and came off treatment because of the panic attacks it gave me.... I think the sides I was really having were dizziness, racing heartbeat, and this would send me to the re in a full blown attack. Do you think you're looking into that stuff like I was? And being super aware of everything? I regret stopping treatment because now I have to do it all over again with epclusa. Once I stopped, my viral load went crazy into the millions. I hope if I take xanax everyday I won't have those issues.
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on January 10, 2017, 05:17:24 pm
Hello my friends,
 
 As you remember I finished treatment (3 months of Epclusa) on January 5, and just got my blood results. NOT DETECTED!!! The drug really works!!! Thanks to Gilead, but special Thanks to you, my friends, for support, for being always available and ready to give an advise at any time of a day, for being compassionate and kind to each other.  Having an opportunity to share  your problem with others and get a support worth more than money could buy. I haven't told to any of my friends or relatives of sickness, my problems and pills I was taking for last several months. I just didn't want to... It was hard to keep it to yourself and only here I was getting all answers without being judged. You were my friends, my family for last three months and I really wish you to slave the dragon asap and back to your routines. I still have elevated ast and alt, but these numbers are not as scary as used to be and it is a matter of a time. My liver was "boiling"under a virus target for a long time (~27 years since my blood transfusion), now it needs time to "cool down". I will post my 3 months "after treatment" results, hopefully I am done with one problem for now! For now, everyone stay positive, magic drug plus your diet and healthy life style will bring you to a rose field again:)
 Yours, Bluebird( bird of happiness).
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on January 10, 2017, 05:31:42 pm
Right back at ya Bluebird!  Wishing you a healthy, virus free life of blessings!  Keep us updated!
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on January 10, 2017, 08:29:32 pm
This is good news, Bluebird!
We're rooting for you. You know that!

Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on January 10, 2017, 10:57:55 pm
Thank you, MW and Andrew!!!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on January 11, 2017, 01:40:23 am
Congratulations Bluebird & Mw!!!! This treatment is amazing and even if you don't clear the virus in the first 30 days it eventually clears! It seems to take longer with the genotype 3a. I'm so glad to hear you are viral load 0!!!! This is most awesome news and thanks for sharing your experience and journey so others have something to Guage and look forward to! I wish all of you many healthy years!!!!
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on January 11, 2017, 08:15:04 am
Thank you, Pepperann !

 You are just two weeks behind me, please, let me know your final results! We are both gene 3a... Wish you the best!!!
Title: Re: Starting Epclusa on Tuesday
Post by: andrew90 on January 11, 2017, 09:29:19 am
i have about 15 more days till EOT! Genotype 3a was still detected at 5 weeks! hoping my 12 is undetected. awesome guys!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on January 11, 2017, 10:25:31 am
I finally  went yesterday to get my first blood draw. I dread having my blood drawn. They call me a humming bird. Have to use a child's needle, heat pack, and tourniquet etc. can be up to 5 try's yesterday was only 2. Where I'm going with this is the excuse why I have not gone in to get a blood draw so late in treatment. Really no excuse but hoping for a good out come! Felt physically good during treatment except was sick with the typical flu and colds going around. Unusual for me. I will post my my results as soon as I get them!! The other reason is with Andrew, Bluebird, & Strike all 3a like me, not clearing in 4 weeks I put it out of my mind to my Dr's dismay. I feel physically great and have been to tired in the past to excersize! Looking forward to being more physically active! 10 days to go!
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on January 11, 2017, 06:29:39 pm
Pepperann,

10 day is nothing! it feels so good to get stress away from remembering of taking a pill. I am pretty sure you will be undetected at the end of treatment just like me, but I had 8 mil to start with.. I have tiny veins like you and I always ask them to use a "butterfly", and it goes painless and "spotless". I think because 3a is uncommon genotype in the USA ( most common is 1a) they didn't do a lot of research on people with this type of gene, because they didn't have them available. I am a Caucasian woman, but I got this Asian type 3a through  a blood transfusion. (go figure...). Anyway, good luck to you!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on January 12, 2017, 12:36:15 am
Thanks Bluebird!
I'm hoping I'm undetected! Blood transfusion for me to. I ask for the butterfly but my veins are deeper. I just have to drink tons of water! Looking forward to being more active. Use to enjoy hiking, tennis and skiing. Haven't had the energy last couple of years. Been healthy but the virus was escalating starting liver damage. So grateful to to be on the forefront of treatment! My energy level is so much better than before treatment. I am so looking forward to putting this sadness behind me. When I first found out I had hcv I was devastated, and isolated myself. I went from social to partial recluse! It stole a little bit of my thunder and I was tired! I changed my diet to support my liver and that seemed to help with the inflammation but not stereotype. I told very few people close to me. As time went on I healed emotionally and this treatment is just the icing on the cake!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on January 12, 2017, 12:56:53 am
Andrew , Bluebird, Strike, MW, I will post my blood test as soon as I get it.
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on January 12, 2017, 01:00:20 am
Fingers crossed 8)
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on January 25, 2017, 01:22:48 am
Wow finally got my blood work back today! Non-detected! Hallelujah! Just finished last day of treatment on the 1/22/17. My alt and ast liver functions are normal! Great to finally have this monkey off my back!
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on January 25, 2017, 01:46:36 am
I am grateful for my health today and also for everyone who shared on this thread!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on January 25, 2017, 01:55:41 am
Congratulations Pepperann on finishing treatment n being undetected!

I finished over a week ago.  I have appointment for viral load at EOT+4 weeks.
Title: Re: Starting Epclusa on Tuesday
Post by: Strike5223 on January 25, 2017, 09:11:26 am
Congrats, Pepperann!

My doctor does not do 12 EOT, he does 6 months. He wants to be certain it is really cured. In the meantime, my sugar remained at 395 even 10 hours fasting,

Going to doctor today for insulin - I hope this is a temp side effect of Epclusa that will go away. :'(
Title: Re: Starting Epclusa on Tuesday
Post by: Pepperann on January 25, 2017, 06:13:23 pm
Well that sucks! I hope it passes soon. On the upside there are amazing articles on the metformin (used for insulin resistance) and how it adds years to your life for other reasons.
Title: Re: Starting Epclusa on Tuesday
Post by: andrew90 on January 25, 2017, 06:36:18 pm
Wow finally got my blood work back today! Non-detected! Hallelujah! Just finished last day of treatment on the 1/22/17. My alt and ast liver functions are normal! Great to finally have this monkey off my back!

Great news! i just finished and had my blood drawn today hoping for UnDetected!
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on January 26, 2017, 11:03:48 am
Congratulations, Pepperann! I am happy for you! Stay healthy and happy!))))))
Title: Re: Starting Epclusa on Tuesday
Post by: bluebird on January 26, 2017, 11:07:16 am
Andrew, congratulation on finishing your treatment!!! I am pretty sure your blood test will show " undetected" like mine and pepperann - we all gene 3a, and first 4 weeks test showed "detected". Good luck and will be waiting for your posted results!
Title: Re: Starting Epclusa on Thursday
Post by: curlygirl on April 12, 2017, 12:41:27 am
Hello,

I am starting Epclusa on Thursday.  If anyone still writes on this forum, because it said no one has written on this for 60 days....but if people still write on this, any idea what time of day would be good for me to start taking my dose?

Thanks so much!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on April 12, 2017, 12:56:42 am
Hi curlygirl

I finished Epclusa. Was told it didn't much matter the time, as long as you take it same time every day--more or less.

A few do get insomnia as a side effect. So some of those shifted the schedule to take it earlier in the day. it isn't hard to do that shift, as long as you do it gradually.

Seems most didnt get insomnia from it.

Best wishes with this
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on April 12, 2017, 01:26:03 am
Hi Curlygirl - and Welcome!

Most people seem to prefer taking these meds. earlier in the day - either with breakfast or with lunch, because they can boost energy (as Elias indicates by making reference to insomnia).
The meds. have a dehydrating effect - so it's a good idea to drink plenty of water while you are on treatment.

Best of luck!

A.
Title: Re: Starting Epclusa on Thursday
Post by: rk on April 12, 2017, 02:35:19 am
Hello,

I am starting Epclusa on Thursday.  If anyone still writes on this forum, because it said no one has written on this for 60 days....but if people still write on this, any idea what time of day would be good for me to start taking my dose?

Thanks so much!

curlygirl,  I started taking it at 8 am for that reason. I had some sleep issues but I think its more of an individual thing. If you have sleep issues I would suggest taking it in the am. When I started I was a bundle of energy, it clearly was better for me to take in the am. Another side effect is brain fog, for me it was in the first two weeks. That happened more after taking it and less as the day went on. It effected a clear train of thought. For me it basically went away. I did not have any other side effects.
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on April 12, 2017, 06:23:32 am
Curlygirl,
  I work alot so I chose to take it at 5pm. It did not give me energy. It was like a sedative for me and put me to sleep. So it's best to decide what works best for your schedule.
Title: Re: Starting Epclusa on Tuesday
Post by: curlygirl on April 12, 2017, 01:21:36 pm
Thank you all SO MUCH!  I'm still not sure if I should start when I wake up or maybe 4:00pm, 5:00pm or 7:00pm?  I'm a vegetarian, try to work out several times a week and try to be healthy.  If I pick a time, for example 5:00 pm and I don't like it, am I allowed to switch to the morning?

 I don't usually have problems sleeping.  Some people say it makes them SO tired and some say they get energized.  I understand everyone is different but it's so confusing (and scary).

My blood pressure has always been 110/60 or 80.  Recently it's been between 155 - 169/110.  Guess I'm freaking out inside.

I keep telling myself it's going to be fine.  I'm trying not to live in fear.

Thank you Andrew, Elias, rk and anyone else I missed for your support. Very comforting and much appreciated!  Tomorrow's the day - YIKES!
Title: Re: Starting Epclusa on Tuesday
Post by: curlygirl on April 12, 2017, 01:28:01 pm
Sorry I missed you Mw2324. It was like a sedative for you - interesting.  I wonder if I should take it before bed?  I have no clue when to take this.   I can't change the time at all? Ugh
Title: Re: Starting Epclusa on Tuesday
Post by: rk on April 12, 2017, 02:17:24 pm
I have read on this forum that a person or two changed the dosage time by an hour each day. They did so to change their dosage time. I doubt an hour or so makes a difference. Epclusa has a program called onward to help. Also the pharmacy or doctor should be able to answer those type questions. So relax try not to get so worked up. Think positive, you know what is best for you. If its not you'll cross that bridge later.
The positive is you are going to be cured and get on with your life.
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on April 12, 2017, 02:24:51 pm
Yes, you are able to change your time by moving it forward or backwards an hour each day. So if you pick one and don't like it, you can just change it.
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on April 12, 2017, 05:43:05 pm
... It really doesn't seem to matter.
What matters is that you remember to take it at the same time each day (and try not to move it in the latter part of the treatment).

... Maybe 5 p.m would be good ... or lunchtime? - so you can easily move it backwards or forwards if you want or need to?

Anyway - I was taking Harvoni, not Epclusa - so I should probably just tune out of this!

There's nothing to be afraid of - really there isn't ... and there's lots of support here if you need it, as you can see!
Title: Re: Starting Epclusa on Tuesday
Post by: Florida67 on April 14, 2017, 02:11:49 pm
Hi I am also getting ready to start with the Epclusa treatment. 
But curious to know if any of you have had Hep B in the pass?

As in 1973 I was diagnosis with B and if you read the paperwork in the envelope it states...........WARNING.....if you have had Hep B or carry the virus, talk with your doctor.  The risk of the hep B virus becoming active is raised with this drug.  A few times, this has led to very bad liver problems or and here comes the punch line.....death............bingo........

Talk about scare to start..........

I would appreciate any and all input as it is Holy Friday and no doctors in sight....

I like some of you am learning how to navigate around this forum.

Thank you all and good luck to us............

Title: Re: Starting Epclusa on Tuesday
Post by: elias on April 14, 2017, 04:12:47 pm
Of course its wise to talk bout this with your prescribing physician.

But since you're panicking bout it, have a look at this symposium podcast . Just to help put that in perspective. The participants are top level researchers in the field:

http://hosted.medipix.com/aasld2016/ (http://hosted.medipix.com/aasld2016/)

The part dealing with Hepatitis B co-infection is I think towards the end of the podcast. ~58:10 . It goes on for a while there..
Title: Re: Starting Epclusa on Thursday
Post by: curlygirl on April 14, 2017, 05:57:23 pm
Hi Everyone  - I tried to log on yesterday but was having difficulty.  Anyway, I took my first Epclusa pill last night at 7:00pm.  I felt a little heaviness in my head and started yawning around 8:30.  I figured great, no problem sleeping tonight.  However, I went to bed around 10:00pm and could NOT sleep at all.

This morning I called my doctor and my pharmacist.  I asked if I could take my pill today at 10:00 am since I've only taken one pill so far.  They both said YES.  So I took my second pill this morning at 10.  I've been feeling great.  No pains, no brain fog - it's been a great day.  Hopefully it will continue like this.

Good luck to each and every one of you!  Thank you ALL for your support and kind words.  Talk soon ( if this let's me log in - lol) XO
Title: Re: Starting Epclusa on Tuesday
Post by: Gaj on April 14, 2017, 08:09:46 pm
Hi Florida67,

Here are a couple of blogs from Lucinda Porter regarding HBV reactivation to add to your reading as well.

https://www.hepmag.com/blog/hepatitis-c-treatment-put-risk-hepatitis-b-reactivation

https://www.hepmag.com/blog/hepatitis-c-treatment-and-risk-of-hepatitis-b-reactivation

A basic summmary is that you will need HBV antigen/antibody tests to determine whether you are currently at risk of reactivation. Should that apply in your case then you will need regular monitoring (or possibly HBV suppressing medication) during HCV treatment to ensure early detection should it occur. It is important that you discuss this with the doctor who prescribed you Epclusa before commencing treatment.

While I understand this may be worrying for you, please keep in mind that the number of occurrences that triggered the FDA warning was relatively small in proportion to the numbers treated and now we are aware of it appropriate measures can be put in place to avoid the risk of this happening in your case.
Title: Re: Starting Epclusa on Tuesday
Post by: elias on April 27, 2017, 04:21:41 pm
Hi Epclusa Family:

I am Not Detected at 12 weeks after completing Epclusa. So I have achieved SVR-12

I'm mostly concerned now with lowering my high fibrosis score. Even if only by one level...

Sleep remains a serious issue as well. Insomnia is chronic thing with me. But was much exacerbated when I learned I had HCV. Went through the roof during the Epclusa treatment. And seems to  be dragging on months after completion of the treatment.
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on April 27, 2017, 05:22:18 pm
So awesome Elias! I'm so happy to read this. I hope you find a balance with your insomnia.  I know how that feels.
Title: Re: Starting Epclusa on Tuesday
Post by: rk on April 27, 2017, 06:57:46 pm
Good to hear ELias, now that's history. I am F3 like you and my doc told me my liver was doing good. In time perhaps we will reach F2. I am not real concerned, if I take care of my self then let time take care of the rest. I do hope you find inner peace and start sleeping better. I've dealt with it for years, kept an open mind and found things that help. Most of mine is mental but at least now going to sleep is seldom a problem. Waking up thinking about something, well that's a problem and I am probably up for the day. I deal with it, eliminate the problem and get on with life.

All those nights I spent laying and thinking are over. If it happens now I get up and do anything but think, get on the computer, play games, clean house, exercise etc. I wait for my body and mind to say hey lets get some rest.
Good luck Elias, maybe its time to make Insomnia your # 1 priority.

 
Title: Re: Starting Epclusa on Tuesday
Post by: elias on April 27, 2017, 07:36:08 pm
Thanks much, Rod and Mw:

I had tried melatonin 3mg in attempt to normalize circadian rhythm.

I was very foggy for two days after. Didn't do much to prevent waking where I couldnt back to sleep after. Was thinking of giving it another shot, but maybe try starting with lower dosage. I then happened to come across some medical literature saying melatonin can help with the liver. So that made me more interested in it. I posted about this elsewhere on forum recently. But no answers there yet

 Thing is 3 mg is a low dosage already. Not sure if  lower than that would do much
Title: Re: Starting Epclusa on Tuesday
Post by: rk on April 27, 2017, 11:00:46 pm
Elias, I suggest your think about long term. I've never read melatonin can help the liver. However I have read long term use is not suggested and can cause other problems. Develop good habits like a consistent routine, a restful environment, your bedtime routine, diet especially late, early exercise, don't go to bed if not tired etc.
I've worked on that and more over the years and I am by far better. I may take a melatonin or Magtein on occasion but definitely not regular. I was going to see a sleep specialist when I worked but I retired and have a relaxed schedule. That and I had time to study the right direction. It gets better if its a priority.
Title: I kicked hepatitis C!
Post by: Ikickedit! on April 29, 2017, 06:37:27 pm
I was diagnosed with hep C genotype 3  just over 19 years ago through routine labs with other screenings.  I received a blood transfusion in 1984 and also got a tattoo in the same era, putting me at high risk.  More than 29 years have passed and 3 attempted treatments with interferon and ribavirin without success along with horrible debilitating side effects, including a bout of ischemic colitis which almost ended my life.  I started having trouble with my spleen due to the virus as well as being in stage 2 liver disease (very minimal alcohol consumption throughout my entire life).  This past August my Dr. talked me into treatment with Epclusa, assuring me that the side effects were minimal compared to the previous treatment options.  SHE WAS RIGHT.  I started in October with a viral load of 788,000.  By week 8 the viral load was still detectable but less than 100.  I experienced insomnia, exhaustion, brain fog, body aches, and dizziness.  After two weeks the dizziness subsided but the other side effects continued.   Compared to the extreme side effects of previously offered treatments, these were very tolerable.  I used over the counter B-12 for exhaustion and melatonin for insomnia.

I am now 12 weeks post treatment and the virus remains undetectable.   After 30 years I am CURED.  The insomnia I have suffered with for more than 20 years is gone, what I thought was arthritis is now gone, my brain fog is gone, and for the first time in more than half of my life I am feeling like a normal human being.  Even the brittleness of my fingernails and toenails is disappearing. 

For all of you starting and continuing treatment while suffering side effects, please be optimistic.  This twelve week treatment is wonderful when compared to the 48 week treatments previously offered.  I honestly believed that I would only survive another 10 to 15 years due to liver and spleen disease.  BTW, my spleen is already returning to normal.

You can make it through this.  I have been through hell over the last 19 years and survived.  Epclusa treatment has given me a future.
Title: Re: Starting Epclusa on Tuesday
Post by: elias on April 29, 2017, 07:47:31 pm
Hi Rod:

Basic changes in "sleep hygiene" have unfortunately never helped me over the decades. I've tried them all. If i'm stressed out, little will help

Hi there, Ikickedit!

Congratulations on reaching SVR. And on the resolution of symptoms. I was hoping for the same for me. I completed tx with Epclusa in January and reached SVR in mid-April. I'm more fatigued now than ever. And sleep isnt getting any better. Possibly even worse.

I had HCV since age 12 . Got it under bizarre circumstances. Which I never could put behind me.  My memory of those is now becoming more vivid, And i cant seem to stop those

Would you elaborate time-frame that your symptoms subsided in relation to EOT and SVR?

Might  it just be it's taking my system longer to re-adjust?

Title: Re: Starting Epclusa on Tuesday
Post by: Ikickedit! on April 30, 2017, 10:58:51 am
Insomnia is caused by the medicine and the virus.  It has only been in the last few weeks that I have begun sleeping normally.  I ended treatment January 19 and it has taken about 9 weeks to return to normal sleep. I was surprised by this as I have struggled with insomnia for 20 years.
Title: Re: Starting Epclusa on Tuesday
Post by: elias on April 30, 2017, 11:21:53 am
I completed treatment mid-january as well. Hopefully, it just comes down to needing more time to adjust. At least  that gives me some hope. My insomnia's been lifelong. But then again i  i got the virus at 12
Title: Re: Starting Epclusa on Tuesday
Post by: Jorah on April 30, 2017, 07:07:37 pm
Congratulations Elias !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  I know you were due mid april.
Same to you Ijustkickeit good to hear...



Hi Rod:

Basic changes in "sleep hygiene" have unfortunately never helped me over the decades. I've tried them all. If i'm stressed out, little will help

Hi there, Ikickedit!

Congratulations on reaching SVR. And on the resolution of symptoms. I was hoping for the same for me. I completed tx with Epclusa in January and reached SVR in mid-April. I'm more fatigued now than ever. And sleep isnt getting any better. Possibly even worse.

I had HCV since age 12 . Got it under bizarre circumstances. Which I never could put behind me.  My memory of those is now becoming more vivid, And i cant seem to stop those

Would you elaborate time-frame that your symptoms subsided in relation to EOT and SVR?

Might  it just be it's taking my system longer to re-adjust?
Title: Re: I kicked hepatitis C!
Post by: Jorah on April 30, 2017, 07:20:38 pm
Thanks for sharing Ikickedit, I started Epclusa 2 weeks tommorow. Good to hear you did well, So far I'm doing ok with the sleeping, I didn't sleep a couple of days because I felt wound up, maybe because I just started and was nervous about the whole situation. I'm also 3a. I get some nausea in the morning when I take the pill with food so I chew on some ginger to try and get rid of it. I started doing ok, then I get some days I feel shitty its not steady, maybe soon it will better.
I get scared with a lot of stories of people not doing well after treatment so far it seems more with Harvoni than Epclusa , but maybe because Epclusa is newer. But maybe we don't hear from those doing ok...

I was diagnosed with hep C genotype 3  just over 19 years ago through routine labs with other screenings.  I received a blood transfusion in 1984 and also got a tattoo in the same era, putting me at high risk.  More than 29 years have passed and 3 attempted treatments with interferon and ribavirin without success along with horrible debilitating side effects, including a bout of ischemic colitis which almost ended my life.  I started having trouble with my spleen due to the virus as well as being in stage 2 liver disease (very minimal alcohol consumption throughout my entire life).  This past August my Dr. talked me into treatment with Epclusa, assuring me that the side effects were minimal compared to the previous treatment options.  SHE WAS RIGHT.  I started in October with a viral load of 788,000.  By week 8 the viral load was still detectable but less than 100.  I experienced insomnia, exhaustion, brain fog, body aches, and dizziness.  After two weeks the dizziness subsided but the other side effects continued.   Compared to the extreme side effects of previously offered treatments, these were very tolerable.  I used over the counter B-12 for exhaustion and melatonin for insomnia.

I am now 12 weeks post treatment and the virus remains undetectable.   After 30 years I am CURED.  The insomnia I have suffered with for more than 20 years is gone, what I thought was arthritis is now gone, my brain fog is gone, and for the first time in more than half of my life I am feeling like a normal human being.  Even the brittleness of my fingernails and toenails is disappearing. 

For all of you starting and continuing treatment while suffering side effects, please be optimistic.  This twelve week treatment is wonderful when compared to the 48 week treatments previously offered.  I honestly believed that I would only survive another 10 to 15 years due to liver and spleen disease.  BTW, my spleen is already returning to normal.

You can make it through this.  I have been through hell over the last 19 years and survived.  Epclusa treatment has given me a future.
Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on April 30, 2017, 07:51:13 pm
It does take time for some of us to adjust (Elias) - yes ... esp., I think, if one has other issues to deal with.

I am 11 months post-Tx (Harvoni).
Like others here, I still seem to feel tired a lot (see threads in the 'Post-Tx section)
I was full-blown symptomatic for the best part of twenty years, and I certainly knew something was wrong for another twenty before that.
... That's forty years - my entire adult life!

... So part of the adjustment is psychological, I think.

Like you Ilickedit - my sleep has improved since finishing Tx.
The chronic anxiety I was experiencing has slowly melted away - I think because there is now way less physical and psychological stress.

For many of us it seems to be a process of slow and gradual improvement.
We've been through a huge - a profound transformation.

Congrats, BTW - both of you!

Elias - I'm so pleased for you.
I was there when you first came on board here (Do you remember that? - when you were trying to get the Eplclusa?).

... And Ilickedit - I can so relate to your story.
Like you - I am so relieved ... so much happier than I was.

Take care - both of you - and

Best wishes,
A.


Title: Re: Starting Epclusa on Tuesday
Post by: andrew j on April 30, 2017, 07:53:15 pm
Oh - and you too, Jorah!
Title: Re: Starting Epclusa on Tuesday
Post by: elias on April 30, 2017, 08:00:02 pm
yeah andrew. i do remember u from that roller-coaster period.

thanks
Title: Re: Starting Epclusa on Tuesday
Post by: Jorah on April 30, 2017, 08:13:50 pm
Did the Epclusa give you heartburn/reflux Ikickedit?

Insomnia is caused by the medicine and the virus.  It has only been in the last few weeks that I have begun sleeping normally.  I ended treatment January 19 and it has taken about 9 weeks to return to normal sleep. I was surprised by this as I have struggled with insomnia for 20 years.
Title: Re: Starting Epclusa on Tuesday
Post by: Ikickedit! on May 02, 2017, 04:43:47 pm
I had heartburn a couple of times but was warned that heartburn meds can reduce the effectiveness of Epclusa.  I drank tons of water which helped.
Title: Re: Starting Epclusa on Tuesday
Post by: Jorah on May 02, 2017, 05:24:06 pm
Oh - and you too, Jorah!

Thanks Andrew...
Title: Re: Starting Epclusa on Tuesday
Post by: elias on May 08, 2017, 06:16:17 am
I'm about four months after EOT now

Achieved SVR by April 14. But continue feeling fatigue and insomnia. Other symptoms of depression too. On rare occasions, I do get enough sleep, i feel much better. So I'm focused on sleep disorder at the moment. It did get much worse on the Epclusa. And continues to be worse from before treatment. But in one form or another insomnia is something i had most my life. i also had HCV most my life and didnt know

Tried just bout anything. All home remedies I heard of Last failure was Melatonin. Side effects even after low dose (3Mg) takes me days to recover from. Home remedies just dont work. My dr wont prescribe more than 1 month mild sedative, because he fears it'll be habit-forming.
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on May 08, 2017, 07:27:44 am
Elias, when you take melatonin, how much are you taking?
Title: Re: Starting Epclusa on Tuesday
Post by: elias on May 08, 2017, 07:59:36 am
hi Mw

thanks for answering so soon.

a few years ago was maybe 5-10 mg . felt hungover next day..so tried lower dose of 3 mg this time. it went ok  only one out of 3 times i took it. so more often than not ill be a real mess next day.. was advised on other section of this forum to not split tablets as they r time release. might  look for even lower dose. read somewhere that optimal dose is actually 0.3 mg --which is one tenth of what i last took.but cant seem to find that low a dose anywhere. I think i might be able to get handle on my life in i had enuf sleep
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on May 08, 2017, 08:26:34 am
Ok, I'm asking because when I take it, I take about .3 mg or .5mg. I have 1 mg tablets that I split into thirds. I bought those at a vitamin store, like a GNC. I usually  feel ok. Maybe a lower dose would be better?
Title: Re: Starting Epclusa on Tuesday
Post by: elias on May 08, 2017, 04:15:54 pm
Yeah. i do see  1 mg tablets at Amazon.

On a thread I started about melatonin and fibrosis, Gaj advises that if the tablet is time-release to not break it.

https://forums.hepmag.com/index.php?topic=4843.0 (https://forums.hepmag.com/index.php?topic=4843.0)

 But cant tell if the ones I see on amazon r time release or not.

Does the melatonin help you much , Mw? How often do you take it?
Title: Re: Starting Epclusa on Tuesday
Post by: Mw2324 on May 08, 2017, 05:12:32 pm
Yes it does help me. I do not have time release ones. I take them probably 3 or 4 times a week.
Title: Re: Starting Epclusa on Tuesday
Post by: Ikickedit! on May 17, 2017, 07:04:10 pm
I use melatonin 12mg quick release and 6mg of time release.  However, the best remedy is morning exercise.  I do this when I have time.  Good luck.
Title: Re: Starting Epclusa on Tuesday
Post by: Ikickedit! on May 31, 2017, 09:05:14 pm
I had an upswing in menopause symptoms and had trouble sleeping again.  I thought deeply about this and realized that when I ended treatment I also ended the use of Prozac.  I immediately started back on 10mg per day, taken in the morning and I am sleeping normally again.  My doctor explained that low dose Prozac regulates your seratonin and allows a normal sleep pattern.  High doses can cause insomnia.  Talk to your Dr. but good luck.