Epclusa Ruined My Life (Page 10)
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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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Re: Kathleen (# 127)

Hi Kathleen, I can totally relate to what you are saying feeling ,it is really hard to get motivated ,plus I get exhausted so easy,what really annoys me is if I complain to the liver people over here they always have same answer,"oh I never heard of that happening before" so frustrating ,I really think we are not alone in all of this ,I'm nearly 70 and thru the years I have had to deal with all kinds of people ,some good some not so good ,but with this last lot of so called professionals I feel like I have been used as a guinea pig a bit ,I am very thankful to be rid of virus ,but I feel we could have been told about side effects we might get being older then a lot of people doing tx,IV always been worried about the high viral load I carried around for yrs usually over 9 million ,I had teeth work done and my VL went into 20mills my dr said the anti biotics and flu vaccines may elevate my numbers ,my GP said maybe I shud start thinking about doing tx but she wasn't real keen for me to do it as I was feeling ok considering age ect,anyway imentioned my VL to liver dr,he said don't worry bout VL ,just do the tx think how great you will feel ,kinda makes me think maybe a bit more investigating should be done on some people especially like us who have other complications ,hope I'm making sense it's early morning over here ,this hot weather seems to make my feet swell a bit more then usual plus some days can hardly keep eyes open ,that new virus sweeping the world doesn't sound very good does it ,I really feel sorry for the young kids who have not experienced much of life ,must be a worry ! I don't like the idea of some of these so called world leaders making decisions for us,if anything bad was to happen they probably have there own underground bunkers with all the mod cons ,I don't know how they sleep sometimes ,they can be very selfish mean ,any way my friend Kathleen try not to feel bad ,I know it's hard not too,I'm just glad I watch tv listen to radio ,world's strange place ,I might go make a coffee..peace take care.

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Re: Kathleen (# 127)

There are many of us who are suffering horribly from these anti-virals. They may be a miracle cure for some but for many of this has been life altering in a very bad way. I now have a 24/7 headache for 5 years now, neuropathy, decreased lung function, joint pain, chronic fatigue, tinnitus, none of which I had before taking the drug and all appeared in the 12 weeks I took the drug.

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Re: Lou (# 123)

Lou. Hi. I'm writing you to let you know I am feeling do down. Like life is nothing. Epclusa has ruined what little life left in me. Its difficult to want to go anywhere. Everything is a chore. Can you identify? I just need someone to understand how my thought process is going. You and I have been there for each other and you have been a Godsend to me. I think of you evety day and hope your struggles lighten. I know we are stuck in this place and no one understands. I wish pharma would get what we ate saying. What would you think about me contacting one of those big television conglomerates and asking them to do a story on all of us that are being tortured after treatment and nobody cares. I wonder if that's something that big farmer would finally wake up and acknowledge us for? I'm not suicidal I don't mean that I just mean that I feel like life holds nothing joyous for me in the future. I take a every day as it comes and I push myself to cook and clean and do my makeup and my hair and put a smile on for everybody but that's not what I feel inside I hurt and anguished and I just feel like the company's don't care they just don't care. I hope this finds you well and I hope your lungs are getting a little better. I've seen on the news that the fibers are dying down and what a phenomenally hellish charred Earth has left you there. All the babies all the animals everything gone for what? I think of you and I pray for you and I wish you well and hope to hear from you Lou

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Re: CathyD (# 124)

Hello. Yes the negative side effects are still occuring and in june it will be two years since Epclusa. My hair fell out a lot. Came in thin and dead feeling. Ringing in my ears are so bad I Finally Friday went in and got hearing aids to see if we can block out that the horrible ringing I have in my ears. But it doesn't. I have joint pain I can't sleep my teeth have gotten dad and I had beautiful teeth at 72 and it's just a never-ending. The bad thing is that I contacted you lead they refused to acknowledge I exist and I've talked with my nurse practitioner and the doctor and they all say that the side effects could have anything to do with it and I've told them both and put on their big person pants and come to this webpage this forum and check it out and they won't. So it's obvious that quite a few people are getting paid off at the expense of our health and wellness. I'm dying anyway my hep C then the cirrhosis had a blood transfusion and 78 which started hep C which I didn't know about that turned into cirrhosis and now I'm dying from stage 4 cirrhosis. I never drank and I never did any drugs. And still they refuse to respond or to be responsible in any way for how I feel. I don't know what we can do I contacted attorneys and none of them are willing to take on big Pharma because it would be costly and take many many years and they said probably I'd be dead before it even went to court. So I don't know what we all can do except for to voice ourselves loudly on this site and I hope that people that are on it or getting ready to use it ask a lot more questions than we did and get a lot of lot more information than we were given I wish you the best of luck Cathy D and if you want to talk or ask any sessions I'm always here. Take care, sleep well and drink plenty of water and make sure to take up close at the same time everyday.

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Epclusa and Harvoni both have sofosbuvir. Many have reported neuropathy and nerve issues although that is not one of the MOST common side effects. That has been a side effect reported to the FDA from day 1 for those taking these anti-virals.

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Re: Katherine (# 4)

Hair loss happened post treatment or at least that is when I noticed it. Too many other things were happening while on Harvoni.....irregular heartbeat, high PB, neuropathy, lung issues......

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Re: KB (# 120)

Good luck kB from Australia. I'm also on antibiotics for a lung infection, waiting for them to hopefully clear my chest, having late onset asthma plus smoke from fires, also a heatwave here doesn't help much. Take it easy. My thoughts are with you.

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Re: KB (# 120)

So sorry you're in the hospital. Are you going to finish your Epclusa? Oh God what have they done?
I have a doctors appointment in two days because of tbe 24/7 ringing in my ears since Epclusa.
There are so many things they have ruined.
Please fight hard to get well.
Thinking of you.

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Re: Kathleen (# 119)

Thanks Kathleen, means a lot to know you're there!!

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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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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: 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: 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: 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: 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 (# 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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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: 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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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: 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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