Epclusa Ruined My Life (Page 2) (Top voted first)

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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My husband took epclusa and finished last year it has been a total NIGHTMARE from start to long after finish. He’s practically disabled and from the looks of these comments he’s far from alone. Have any of you thought of doing a class action lawsuit? Will it make you feel physically better? Of course not. But this is completely UNACCEPTABLE!!

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Re: Susie (# 6)

I've had every test done there is, doctors don't know anything about this medication, and they told me they didn't. Even Gilead couldn't tell me why I was having this reaction. I had to be put on Klonopin to take, my insides and body was shaking so much. It felt like I was burning up inside from my brain down. No one did anything to help me, they thought I was crazy, except one E.R. Dr. He called the gastro Dr. that prescribed it and told him I needed to be taken off of it, and the gastro Dr. said no and that I was making it worse than what it was. I was the 3rd patient he had given it to. The other 2 didn't have a problem, so I shouldn't either. He was a monster. I went through a living hell and am still in it. Can't remember, can't think straight still feel Crawley inside, especially in my brain, they have me on Xanax now. After the treatment, I tapered off of all the benzos, my brain was so messed up, I didn't even know who I was, anymore, how to get to places I'd been to many times, I totally lost my mind. I've stopped benzos, and alcohol before, never had any of these horrifying feelings. I had to go back on Xanax to be able to function. This medicine epclusa damaged my nervous system, I don't care what anybody else says, I felt it doing it when I took it. I finished treatment the last of January 2017, my hair is falling out more now than after I finished treatment. I'm still having to live with my daughter. I hate Xanax, don't want it, I want my brain back I had before epclusa. When this Xanax stops working, I'll have to be put in a place to be taken care of because of my mind. It's the only thing keeping me calmed down, and if I don't take it I hear music in my head over and over everyday. I'm scared I'm slowly losing my mind. I feel like epclusa burned it up. And to top it off got denied disability. Something needs to be done. None of these doctors are gonna blame the Hep c medicines, they are going say our Hep c did this to us, but it didn't, the medication did it.

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Re: Katherine (# 4)

My hair loss was not right away. I started noticing it more post treatment along with the nerve pain in my scalp. The hair loss and scalp nerve pain came together. I think the peak of my symptoms were post treatment. My end treatment date was August 13, 2017 but the symptoms increased after that and peaked from December 2017 through April 2018. They started to subside and then would return. So I would think I was getting better only to be disappointed when the symptoms would return. For the past 2-3 months the nerve/tendon/muscle pain and hair loss has diminished. I'm hoping that this is the end of it. I still have tendonitis in my hand/arms and neck pain with repetitive use but I have been dealing with that since before Epclusa treatment. I can happily say my quality of life this summer in comparison to last summer has improved. I hope the Eplcusa side effects never return again. I have been using guided imagery audio for healing/depression/anxiety etc. I have found that to be very helpful. You can find many guided imagery and meditation videos on youtube. I highly recommend "Belleruth Naperstek". She has guided imagery and affirmation audios on many subjects. Give it some time and try to think positive. Best of luck to all!

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Re: Lou (# 51)

Did u chat with your doctor about the patch?. I don't think smoking while taking a clusa is a good idea. Especially with your COPD. I don't mean to harp on you but liver damage is nothing to play around with and being on epclusa is a gift and something you should take very seriously. The side effects from the occlusive are harsh and they make you want to quit but the outcome is me. I have a life now although I am looking forward to a transplants somewhere down the road I have a life right now and I can get out and I can do things. The side effects from eclusa are a small price to pay for taking them. I have never smoked nor drank but if I had a chance to be given my life over again with epclusa I would definitely give up all things like that for a chance at a life. I'm not going to California until next month I'm still in Tennessee.. I really hope that you read my words and understand I'm coming from a true and genuine Place worrying about your health. There comes a point in life when our priorities have to be straight. I'm not sure what inhaling 700 chemicals in your lungs does to make you feel better. But trust me you'll feel better without those chemicals in your body. Please don't take this the wrong way or think that I'm being cruel. I just want you to look at what the gift has been given to you and to take it seriously and maybe someday we can meet because you'll take all of this seriously. Your friend Kathleen

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Ive finished my 12 weeks of epclusa at the beginning of June of 2018. I'm feeling okay. The medication made me feel like I was being poisoned everyday but I guess that was the point. They didn't tell me about all the side effects like being a woman losing a majority of my hair. Being depressed. Feeling like all the life was gone out of my body. Feeling no hope Joy or happiness. I have cirrhosis of the liver stage 4 caused by the hepatitis C being undetected for almost 40 years. If it wasn't for inclusa I probably wouldn't be alive right now. Every side effect outweighs the alternative. I would just say ask your doctor every question you can think of about what to do while you're on at clusa like for sleep for depression for listeners for hopelessness. Good luck to all of you

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Re: Katherine (# 4)

Hi Katherine,don't know if you remember me,I also did the treatment,how are you feeling now?it has been a while since I've been able to get on line ,I am almost 12 MTHS poste treatment ,I have few numbness problems in fingers feet, tend to get edema in feet legs at times,plus joint pain in knees very painful, I don't know if it's from tx or just an ageing thing! but I don't like it, IV had no support from liver clinic that started me on tx,IV rang them ,all they say is tx wouldn't cause problems,so when I go to my local Dr try tell him about my pain issues,he just rings liver clinic an repeats there claim that tx has no long term side effects,I have appointment with neurologist ,probley 10 nth waiting list unfortunately,anyway hope you are going ok with your issues,it's been hard winter here for me not sleeping very well,not looking forward to the heat of summer a
mth away,you have been getting extra hot weather also as with europe,seasons sure are strange ,take care .

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Re: Katherine (# 4)

Hi Katherine, with my post treatment problem s besides the numb fingers toes edema ,joint pain in knees an shoulders plus anxiety,I feel really exhausted I'm bit worried that this tx has given me heart problems, of course the liver people with all there no support don't believe Epclusa could do this,I really felt better before the treatment .hope you are ok.

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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 (# 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: Emmy (# 265)

Sorry to hear that !the time does pass, it's been a few yrs for me, can't say I feel much different, but who knows maybe I would have got sick if no treatment was done, I didn't get any support at all, just same old line "oh we've never heard of that happening before" I'm in Australia where are you.? Good luck any ?s

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Re: Chris (# 267)

Really understand what your saying I also did epclusa ,I could never get a straight answer from epclusa people ,I think it has damaged me big time ,in fact think I felt better pre treatment ,very worried about covid after taking epclusa my immune system isn't good take care ok ,

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Re: Jason (# 273)

Jason ,I think we are stuffed,it's the old. catch 22 we try to do the right thing and crap happens same ol story ,to many lies from drs pharmacy ect I'm in Australia no help at all my dr gets info from liver clinic omg.

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Re: Jason (# 281)

I can totally understand what you're saying. I'm in Australia. If I mention to my Dr about all the crap symptoms I've gotten ever since I got talked into doing this treatment, he just says "oh epclusa wouldn't cause that", plus he gets his info from the local liver clinic - omg, they're the ones pushing exclusively! I've met some pretty shady people over the years, but exclusively gilliard wins hands down. Reach out to me if you want to compare notes.

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Hello, Barbara! How are you? Has there been any change?

Those are not normal side effects of this medication according to recent FDA reports. They typical include nausea, dizziness, insomnia, depression, and diarrhea.

Are you on any other medications? Do you take any supplements? Do you drink a lot of sugary, or caffeinated beverages?

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Yes I started with hand/arm pain about a month after starting treatment. Now I am three months post treatment and the pain has now been nerve pain in my hands, lower legs, hands, arms and scalp and hair loss. Also intense anxiety at times.

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I have experienced those same symptoms. I am 4 months post treatment with no improvement.

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Re: Suzanne (# 2)

I just started taking this medicine and I have a question... Was your hair loss experience right away or over the course of treatment? Thank you

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Re: Skpp930 (# 5)

That is similar to what I am feeling. Have you tried to treat symptoms with supplements or dietary changes? What does your doctor say about it? I am anxious to find a way to feel better.

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Re: Skpp930 (# 7)

So sorry to hear about all the suffering you are going through. I have been listening to guided imagery and healing hypnosis videos on youtube. It helps some when I'm feeling very anxious or need to calm down to get to sleep. My biggest complaint is the nerve pain mostly in my scalp and neck also forearms, feet and lower legs. It just flares up out of nowhere. I have been on some pain pills and a small amount of xanax in the evening to help with sleep. I'm thinking about getting treatment at a chiropractors office that specializes in neuropathy. There are many new modalities but it is very expensive. They want over $6,000 for 42 treatments. My brain also feels very forgetful and I lose words in conversations. I'm also very weepy all the time. I'm so tired of feeling this way but I won't give up. I see this passing at some point. I can't accept this.

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Re: Verwon (# 1)

I have been on epclusa for eight weeks and three days. In the first two months I felt like I was poisoned. Had hep c. After three weeks my viral load was zero. I have stage four cirrhosis and will take total of twelve weeks. This is the first week that I have felt (normal). I.e. not feeling like I wanted to die. I hope next four weeks are like now. Stay on course. Dont miss a dosage. There is light ahead.

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