Zepatier Diary & DiscussionUpdated
About to start Zepatier and would like to hear from others who are taking it or have taken it.
-How's it going?
-Did it work?
-Would you do it all over again?
-How are you feeling?
OK so it's Saturday, February 24, 2017, and I'm taking the first pill of zepatier. I've read all about the older drugs and harvoni, and the possible side effects and long-term effects, so I know what I'm getting myself into.
I'm F0, my liver enzymes are in the 30s...viral counts in the millions with 1a...I don't know how long I've had this virus for sure, and that worries me... I'm in my late 50's, and only recently found out I had it.
But then again, I've been feeling tired a long time and I'm wondering if that's because my body & liver are constantly dealing with keeping this pathogen at bay.
I'm curious to know what it will feel like to have less of it circulating in my blood. And hence I'm starting the treatment with this absolutely brand new drug called Zepatier. Since I cannot find any posts that follow the progression of taking the stuff online (some people say they are starting it or they finished it, but they don't give any details), my goal is to let other people know my experience so they may decide if it's something they want to try.
Honestly, I feel like a human guinea pig. My doctor says "we just don't know ", saying that it's just too new of a drug, when I asked about long-term risks or long term SVR success. When I called Merck they just read me exactly what you can find online and all the pamphlets.
But as long as I've held off taking that first pill, out of fear of the unknown, Something inside of me also wishes I didn't have this virus in my bloodstream anymore... and so I've decided that I'm going to take a chance in at least stopping it from replicating inside me & see what that feels like. And so the journey begins. I'm optimistic and yet I'm realistic.
Anyone who's been through this or is going through this Zepatier treatment, please feel free to write on here...it would be nice to have some support partners.Thanks.
Day 2 of Zepatier. No real side effects. I'm taking it in morning. Slept very well overnight. A wee bit nauseous immediately after taking it, but only for a few minutes. During day, I felt fine. Was able to drive, do normal errands. Actually feel energetic, like on caffeine. Had runs the first day 2x, nothing today. (Sorry if TMI, but I want others to know how it goes).
Will update again in a few days.
Day 4, only difference I've noticed is a couple of small itchy bumps developed on my face, and that's unusual for me. I put some Benadryl on and it stopped the itching. I've read in some articles that most all DAA will cause some dermatological incidences, and aren't serious unless they cover a large percent of your body.
Other than that, energy level is actually pretty good. No nausea, no diarreaha, no headache. Drinking lots of water. Sleeping good. Don't feel bad. Hope this helps others with their search on this med. I'll update again soon.
Day 5, starting to have headaches that come and go.
Not terrible ones, but you know they're there.
Tonight's the first night I'm having trouble with insomnia. Fell asleep ok, but woke up and can't seem to go back to sleep. Try to read, then turned out the light, but mind & body feel overly energized. Slept 2 hours, up three now.
Other side of face broke out also in a bump.
Still, want to be rid of this liver disease, so will push on.
Well, on day 7, I decided to stop treatment.
For me, it was too strong.
A normal sized person will probably be able to handle the headaches & insomnia better.
But I am very short & thin, and for me, the headache & insomnia after day 4 became too strong and unacceptable.
I hope others will continue where I left off and share their experiences. I'm sure there will be many positive ones.
To the companies who make these wonder drugs, please consider making the pills available in different doses. One size does not fit all, sadly.
Update! Went to have the 4 RNA quantitative blood work done, even though I had stopped the Zepatier after day 7. Do you know my ALT & AST Scores were half of what they had been, and my viral count went down from being in the Millions to under one thousand! So this Zepatier does work. If I get a 12 week count done, I'll update again at that time.
I know by discontinuing the pills, the virus could keep growing again.
I would like to answer to Tracy5. First thank u to share your experience with us. Pls excuse me for my poor english I'm french. I begun the traitment le 2nd of march and I confirm it's hard. I have headaches, insomias and Intense muscle and joint pain. I wanted to read some expérience to know if some other persons have these Side effects. I am also small and thin but I want to continue to finish with the virus. I would like to share more but it's difficult to me in english. Take care of u Tracy5.
Helene, thank you for your answer!
I am happy to hear you will continue abd finish the medication, despite the side effects.
I regret I did not. :(
Please write again soon.
Hello Tracy. Thank you for sharing your zepatier-experience here. I'm sad you had to stop treatment. Hope you are doing fine and can treat successfully later on.
I'm a 48 year old Nowegian girl. Hcv 1a for 25 years. Treated with interferon, ribaverin & victrelis in 2012/13 for 28 weeks. Sadly relapsed, and it was a horrible treatment. Had to have 2 bloodtranfusions. Now the 10th of March I starten 12 weeks of Zepatier. Didn't feel anything until day 3... for about 2 - 3 weeks I felt really tired and weak. Had a couple of headaches...but now for the last weeks I feel much better! Almost like normal! Sleep well and have my energy back!
This treatment is so much raser than the old interferonbased!
Take care, love from Kirsti.
So I went for a 8 week viral count test and it had gone up from the 700's to over 6 million again.
Taking the Zepatier for one week did make the count viral count go down, but since I couldn't tolerate the side effects, and stoped taking it, the counts way back up again.
And I have been feeling nauseas, brain- foggy and tired since stopping the drug.
Its as if my body is having to fight the virus all over again.
I am concerned about this and hope it's not doing worse harm to my liver.
I almost wish I didn't start the drug at all. It just messed up my body chemistry and was too strong a dose for me.
I just took my first dose of Zepatier last night. My eyes have been burning this afternoon. Has anyone experienced this while taking this drug?
Yes, I felt the dry eyes too. I had to buy moisturizing over the counter eyedrops. During the first week I took Zepatier.
Please keep taking this med. I'm in my 60's and have 10 days left. I will be so relieved to get this virus behind me! Years ago someone close to me died of Hepc liver failure. You do NOT want to go like that! It was horrible and tragic. The meds we have today will cure it. Sadly it wasn't available for him. The side effects we have are nothing compared to liver failure. Good luck
Hi I'm just coming into my 4 week . I didn't really know how i would feel or how I'm meant to feel. My expectations are to rid myself of hep c 1a. I feel like my body is being squeezed all over and burning up. I constantly feel very drained . Its all I'm doing is just concentrating on the treatment making notes as i go along and then will do the same when I've finished.i feel it would be more helpful for people starting treatment that a group or somewhere you could go just to talk how you are feeling because its not only about hep c its other things that you have going on as well. hep c impacts on everything and sometimes it just nice to talk and meet others that are feeling the same.I not wanting to put other off its more support would be good. I feel hep c can isolate you and also really mess with your head. Jacqui
If I had more support when I first started taking it I may not have quit taking it after a week.
I agree we need more people talking about it who are taking it. Please anyone reading this and is taking Zepatier, please post how you are feeling side effects, anything, thank you.
It would make people feel they are not the only ones who are not feeling quite right while taking the treatment.
I know if I had some support I might have kept continuing to take it.
Even though some of the side effects like headache and insomnia were unbearable.
I'm done with the 12 weeks. I see the Dr my follow up in a few days. Anyone taking this please don't quit ! I started going to a gym while I was taking it and that helps with the fatigue and state of mind. I really just wanted to sleep all the time but I fought thru and went to gym. I feel good! Many symptoms have gone away.
Re: Tracy5 (# 1)
Hi, I was diagnosed with Hep C in '95. I tried a drug then called Interferon A which didn't work and caused severe depression. I vowed never to take it again and decided to just live with the virus.
I'm now in my late 50's and have just started (3 weeks ago) Zepatier. It made me quite sick in the first week but now I'm getting used to it and apart from headaches I have no noticable side effects over and above those that come with hepatitis.
So' here's hoping. Good luck with your treatment.
Re: Dredre (# 11)
My eyes were dry. I used moisturizing eye drops hourly. I'm going to do my 3 month post treatment blood test soon. Everything is much better! If you feel itchy take vitamin D3 it will help and finally eliminate the itching. Don't quit
Hi everyone. I would like to know more about the side effects of Zepatier as I will be starting on it tomorrow for the first time.
Re: Monica (# 19)
Mine were pretty mild. I started going to the gym before I started the meds and continued 3 days a week. I wanted to try and stay ahead of the fatigue. The first month I did take naps which isn't usual for me. I continued to work. Take some vitamin D3 it helps you feel better.
Most Recent Replies:
I am finishing my 8th week of ZEPATIER with no side effect.
Only within the first week ( or two ) I was feeling tires and some headaches. Now, there gone.
For me it is not the drog who concerns me, it's the fact that I have ( and had before the treatment ) this awful brain fog, in a way daily tasks seems so difficult to be handled.
Other than this, I am OK.
I will go through it till the end as I am F4 and I cannot leave it uncured.
Each person will have a different experience with a drug.
Yes, this drug can cure Hep C.
The adverse side effects were intolerable for me. But maybe not for you.
I guess each of us must weigh the risks Vs the benefits. We all have different stages of Hep C.
One person could sail through it ...
Some will have joint pain and age 10 yrs from it afterwards.
Or develop liver cancer anyway, even with the virus gone.
I've noticed only two people posted updates on thier experience with it.
Where are the hundreds that are trying it or have finished it?
Where are their stories?
I'll check back in a few years, maybe by then we'll have a bigger picture.
Yes I would do it all over again. My last blood test I was virus free. I’m about to do another test and expect it to be also virus free. The cure rate is 97%. If you have ever known anyone who has died of liver failure you will complete the meds. The side effects are NOTHING compared to dying of this disease. Stay strong !
I was diagnosed 20 years ago with hcv 1a. I have lived with it this long with minimal side effects! But I have babies and wanted to rid myself of this disease so it wouldn't take me away from them earlier than necessary! A doctor suggested Zepatier and here I am 4:30am after the 5th dose and I feel yucky but not yucky-yucky. I had moderately severe stomach cramps/diarrhea about an hour ago. Then I felt a strong urge to vomit while all that was going on! My face was flush and I almost felt like I was going to pass out. I am.hoping and praying this passes but I feel the cramping and yuck coming back :( This just makes me sad because I NEEDED to be able to do this with little no side effects!
Ill keep ya posted.
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