Epclusa Ruined My Life (Page 6)

Has anyone experienced severe anxiety, constant crawling feeling in body after epclusa treatment. Its like my brain and body aren't working right anymore? I had terrible side effects. Finished in January, now it's June and feels like I'm still taking the poison.

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Ok. I am now 14 months after epclusa. If I would have known how it was going to react my body and the side effects I might have chosen another course. I have ringing in my ears so badly 24 hours a day that it's driving me insane. I can't sleep without sleeping aids. I am exhausted all of the time I have no energy. I just don't know why they didn't tell us before we were giving. It, all the side effects

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Re: Lou (# 100)

Ok. I am now 14 months after epclusa. If I would have known how it was going to react my body and the side effects I might have chosen another course. I have ringing in my ears so badly 24 hours a day that it's driving me insane. I can't sleep without sleeping aids. I am exhausted all of the time I have no energy. I just don't know why they didn't tell us before we were giving. It, all the side effects

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Re: Lou (# 98)

Hello lou. Merry Christmas. I am now 16 months past Epclusa and feel horrible like you. The ringing in my ears is so bad. I cant sleep well.
My toes are numb. Im exhausted all of the time. So many things they didnt tell us. Hope you are far from the awful fires. Its on the news all the time. Be safe. Thinking of you.

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Re: Kathleen (# 103)

Great to hear from you. Yes, as usual I'm having similar reactions as you. It's been about 13 mths for me since I finished treatment. Numb toes and fingers, lot of pain in knees, ect... I'm not sure if I was having trouble keeping my eyes open in the day time usually when relaxing. I also experience body jumps or jerks. I've dropped so many coffees and tea. Luckily it doesn't happen whilst driving, although I get extremely tired and try to not drive. So far I've been to neuropathic specialists and the answer I seem to get is that it must be nerve damage. No one seems to want to blame the treatment. Yes, fires have been bad. I'm not too far from some fires. Smoke is the worst thing, having to close windows/doors and not getting any fresh air. Plus the hot weather is a pain. It was christmas day yesterday and we had the first good rain in months. Great gift! Anyway Kathleen, please take care. Don't hesitate in messaging if you feel like comparing or talking about our issues. Happy christmas to you. Hope 2020 is good.

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To anybody considering up epclusa, please read on. Do not expect your doctor or your PA to tell you the truth about epclusa or the side effects. They are motivated by kickbacks for ordering this medication. In 2018 in California I was determined to have Hep C and cirrhosis of the liver from a blood transfusion. I took a epclusa religiously for 90 days and it was the worst experience of my life. I almost lost my sanity. I have ringing in my ears 24 hours a day 7 days a week, I've gained weight, I can't sleep well, I have pain in my joints and all of these things never occurred before the 90 days on epclusa.

If you continue reading you will see. Over a year-and-a-half conversations between people on this forum that are expressing their fear and regrets about epclusa. Please reach out and ask many questions. Use the internet, but use this site because this site is dedicated to people that have actually taken at epclusa. Not somebody that has a read about it or heard about it through another. Please be aware there is no quick fix and that it will change your life in many ways. Good luck and I hope you find a cure.

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Re: Lou (# 104)

My thoughts are with you. The horrible fires are just unbelievable.
The loss of animal/human is hard to accept.
Im sure with your health issues from epclusa that you are suffering.
Please know that people all over the world are watching snd wondering how to help.
Take care and rest and drink water.

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Re: Kathleen (# 106)

Thanks Kathleen, kinda good to know there's somebody who understands, I really think seasons are changing, it's 1.30am might try get bit of sleep ,usually sleep couple hours then I'm awake again..take care ok

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Re: Kathleen (# 105)

The lack of evidence based information is horrifying. I would gladly go through labor again rather than feel like this every day, ongoing. I wish I’d never started it (I stopped just yesterday after 6 weeks). I feel betrayed. If I’m ever offered a 90+% cure rate miracle drug again especially if it’s been on the market for only three years I will fall over laughing and I will do much more research.

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Re: KB (# 108)

Kb so sorry for you.
We are supposed to trust those in charge of our lives.
Their words are empty because they have used up their words making deals with big pharma.
I was so shocked to know I had hep c and cirrohis that I was more than willing to believe anything that was said.
When I started epclusa I was one of the early pstients as epclusa was way new on the market.
It cost kaiser over one thousand dollars a day for ninety days.
I took them religiously.
Never missed a dose. But I felt like poison wasd runn through my body and had no control of how i felt.
No one told me how God awful it would be. Was going to quit every day because life at that time was too much to live.
But kb you really need to talk to doctor to start again where you stopped.
We are strong . warriors for epclusa. We cant stop after sixty days. Please start it again. There is a reason for a full ninety days. It will not go away. May feel better but it wont last.
Please talk to someone. Im with you. We are too sick to quit meds.
Be strong. I am a 72 year old woman and i made it through.
I know you can do it. My thoughts are with you.

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Re: KB (# 108)

Sorry you are not feeling well,I'm 13 mths Poste tx still feel so exhausted,numbness nausea aches pains nearly went dead,the liver clinic always same answer ,oh never heard of that before,( crap) no support only lies ,I felt better pre tx, now I'm suppose to have heart test, like what's the point ,my immune system is stuffed ,was fine pre tx,survived yrs in s.e.asia feeling great now ,IV tried to do right thing and I'm stuffed.im 66.

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KB (# 108) hi it was nice to hear from you. I just want to say coming deeply from my heart that I think that it was probably a bad idea that you stopped the epclusa yes it makes you feel horrible because you're taking chemotherapy. It makes you feel awful but I came through on the other end after 12 weeks and I have no more hep C I have a 0 viral load. What happened to me was I had a blood transfusion 40 years ago and they didn't check for hepatitis so I had hepatitis for the last 40 years without knowing about it and it turn into cirrhosis which is killing me. I just was not informed about epclusa nobody really told me much about it and almost 100% of everything I learned I learned on the internet and through this form. I just strongly please you no talk to your doctor and get back on and I don't want you to turn out like me you know I'm I'm dying and it's not finding it could have been a voidable so do what your doctor tells you to do and talk to your doctor very soon and start again. My thoughts and prayers are with you and I hope that you can stay strong and get over the fear and just go in and get done I'm here for you anytime you want to talk

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Re: Kathleen (# 111)

Thanks for the support, it helps.. I’ve spent at least 10 hours since I originally posted researching Epclusa. I submitted a report of my experience with the FDA. My doctor has encouraged me to switch to Mavyret for the next 4 weeks. After researchering that I have agreed to try, even though I’m continuing to experience the Epclusa side effects. I’m still skeptical but time will tell.

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I feel like I’m standing in front of an impenetrable wall of glass and my life is on the other side.

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Re: KB (# 113)

Totally understand.right thru treatment I had no support ,3 week completely loss hearing in right ear my GP put me on a steroid for 10 days luckily hearing came back,told the liver people who talked me into doing Epclusa,all they could say was "never heard of that before " there favourite saying, I think they should have insisted I stop treatment after hearing loss ,but oh no keep taking the DAAs you will hardly notice them,!!! Yeah sure that's why I'm a total mess exhausted every day numb feet fingers bloated stomach leg Edema,what a wonder med.

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Re: Lou (# 114)

Oh yeah, I love that they say that they’ve never heard of these symptoms before. Urg. They ask “now was this during the Epclusa?” And, “you’re not taking it now (I’ve only been off for three days) but you still feel like this?” Oh for crying out loud. For years I’ve been going to medical teaching university with a stellar reputation. I’m happy with my usual team, it’s only the hep c doctor who seems clueless. Going to my regular primary care provider today because I’m concerned about going on Mavyret AND I need to keep repeating my stories because they’re real and they’re serious. I can’t believe the advice “hang in there” is all they got. eye roll.

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Re: KB (# 115)

Yes. I have talked to a group of attorneys who what will be looking into the trial test of epclusa and their effect on other people. They've all lied every person I know of in this form and personally who I'm gone to the doctor for Pepsi or cirrhosis and they're taking it closer have the most horrible side effects. They say they seem to think it's cool that it gets rid of the hep C within a very short. Of time to give you a viral load but they're not concerned about the effects that leaves on the people that have lived through it and will have to suffer these problems for the rest of our lives. They will be held accountable. I'm not sure how this will all play out but it's necessary for the people on this forum to be on board because it has ruined our lives and we all need to stick together. I hope you find something but I'm not sure that they will switch you from the closer than Merrick and that fat so good luck but I really hope that you decide to start taking the epclusa again as there is a light at the end of the tunnel with the epclusa. But that's the only good side. Good luck to you and please feel free to write me back anytime.

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Re: KB (# 113)

Kb don't wait to long to make a decision. I totally get what you are saying. Taking Epclusa for 12 weeks was hell. I was so sick. No energy. Could not sleep. Felt like I was being poisoned. I had to learn to take it early in the morning so the "feeling" would mostly be gone in 12 hours or so. So my pattern was to wait until it worn off a bit before showering/eating. Dont get me wrong...without Epclusa I would have been worse.
Its how they all lied and did the Potomac two step about its products ability/side effects. Take care. Be strong.

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Re: Kathleen (# 117)

Hi Kathleen, I've been trying to work out how we can (all the victims that is) put our heads together and try and get some action against these people who have caused so much pain and loss by telling their lies to a minority group like ours. I feel somebody should have to pay for our loss. Why should they be able to walk over us? So many of us end up with the same symptoms, more than just a coincidence I think. I don't think a lot of us have a real lot of time, meanwhile, they are getting rich with their wonder drug. Anyone have any ideas? About time our voices were heard. I'm in Australia and reckon there's people all over the world going through the same thing, at least we can try maybe. Just isn't fair. I felt so much better pre-treatment.

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Re: Lou (# 118)

Thats the thing. They know we are on borrowed time...know we will die before they are held accountable. Im not afraid of death but I just want people to know the truth. My Epclusa cost $1000.00 a day for 90 days. It was an investment that will never be paid back by long and healthy life. I thought maybe they read these messages and would respond. My energies are put in faith that the attorneys looking in to my cause will do SOMETHING. Meanwhile you and I and others have to fight every day for some part of a life we lost to this God awful drug. Take care Lou. Im with ya.

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Re: Lou (# 118)

File a report. I did last week. No need to get a group together. The more people the more attention it will get. You can also file a report at Gilead. I haven’t yet but I plan to. Right now I’m in the hospital with a serious lung abscess and infection. I’ll be here for a few days. It may have nothing to do with Epclusa (the 10 or 12 doctors who’ve already seen me aren’t commenting). Even if the timing is just a coincidence it’s left such a bad taste I’m not going to pursue the alternative Mavryt. That “viral load” (a lot of my other numbers went down too but they weren’t supposed to) is like a prize to doctors they don’t really research the side effects. Or understand how hideous it felt and how no one can objectively see the whole picture, whatever that is. I wonder if they’d let their own kids use it?

accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.home

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