Starting Epclusa on Tuesday

[rk]

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.

 

[elias]

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

[rk]

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.

[Ikickedit!]

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.

[elias]

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?

[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.

[elias]

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

[Jorah]

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?

[Jorah]

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.

[andrew j]

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.

[andrew j]

Oh - and you too, Jorah!

[elias]

yeah andrew. i do remember u from that roller-coaster period.

thanks

[Jorah]

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.

[Ikickedit!]

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.

[Jorah]

Oh - and you too, Jorah!

Thanks Andrew...

[elias]

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.

[Mw2324]

Elias, when you take melatonin, how much are you taking?

[elias]

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

[Mw2324]

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?

[elias]

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

 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?

[Mw2324]

Yes it does help me. I do not have time release ones. I take them probably 3 or 4 times a week.

[Ikickedit!]

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.

[Ikickedit!]

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.