Epclusa Ruined My Life (Page 15)
(Newest replies 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.

REPLY

REPORT

Re: Kathi (# 23)

Great reading your message ,hope you are starting to feel bit better! Why do drs an nurses say tx on this drug is so easy ireally dont know how they can say only very mild side.effects ,i have read so many people having terrible time ,that is why with my age 65 and my new diagnosis of copd emphasemia plus myVL of 8 mill geno 3 ,dont like my chances of not getting sick ,no way is my dr gonna come see me if im sick i feel as if we are guinea pigs .plus im 65 now how much longer can i have anyway with copd ect dont want to feel worse then already do.anyway hope you are ok good luck mate.

REPLY

Was this helpful? 0

Re: Lou (# 22)

Hi lou. Sorry you are going through this. I will tell you what ive experienced. I started epclusa feb 29th 2018. Within days i was bed bound. I felt like i was being poisioned. I kept telling my n.p. and she made light of it. After 3 weeks i was delirious and going to my appointments without memory of it. My family had to help bathe me. Feed me and make sure i took it. After going on the acoustic Forum I realize I was not alone on that Chris has only been out since 2016. At that point I felt that I was a guinea pig for the company and that they were not going to tell me the truth. I've been off epclusa since May 29th and I'm still very ill my body hurts my memory is shot I have pains in my arms of my hands and my feet and I still can't sleep. I had to go on Ambien the whole time I was on epclusa because sleep would not come. I had nightmares over and over again and we're just a miserable human being. I now have a zero viral load but I also have non-alcoholic cirrhosis of the liver stage 4 which cannot be cured so I don't know what my next step was.. I wish you the best and I hope to hear from you on the Forum and to everybody else out there Scott and Kathleen have a blessed day.

REPLY

Was this helpful? 5

Hi ,hope you are feeling bit better !its all strange ,hard to get info here in australia ,im supposed to start epclusa next week im 65yr old male prob got infected 70s geno 3 VL into millions fibroscan still f1 ,7.6 score,just been diagnosed with copd (short of breath sometimes ect trying to quit cigs ) also on opiate for pain managment daily so constipation is common already evan before starting tx .what annoys me is the hep nurse is so sure i will handle tx with only very mild side effects like how does she know whats gonna happen as i already feel like crap with my lung problems maybe im paranoid i dont know ,i dont feel hep sick atm and i dont want it to start because people tell me its a wonder drug what if it isnt ?as you seem to be finding out .really hope your feeling better ,if u have time let me know how its all going for you .i feel like maybe im too old to do tx who knows how long life span is when you grew up in the 70s ect.thanks hope your ok.

REPLY

Was this helpful? 0

Re: Bonnie (# 20)

Hi bonnie. Yes I too went to cannibis store while on epclusa.
It helped a little. I have now been off of epclusa since May 29th 2018 and had to move to Tennessee where cannabis Medicaid medically or otherwise is illegal. I feel like I'm in a fog. I can't remember things I've had to cut my hair almost all the way down to nothing because it keeps falling out. I'm confused I feel alone and I feel like no one really understands what I've been through on epclusa and what it's done to me. I pray for you and I will continue to pray for everybody because God help us we need help

REPLY

Was this helpful? 1

Re: Skpp930 (# 8)

I took Epclusa for three months last summer and I am still having severe anxiety and insomnia, muscle pain, mental fog, fatigue. Doctors are useless and always have been. I didn't even bother to go back. I was abandoned during treatment and had to ask my naturopath for help. I now take CBD oil (find one with 250mgs in the bottle and take 1/4 dropper on the tongue. Don't swallow right away, roll it around for 90 seconds then swallow), Bach Flower Essence which really works (I use 1/2 dropper full as often as I want and also roll it around on the tongue). I also take L-Theonine 200mgs at night (an amino acid), Melissa 1.5 gms at night (an herb also known as lemon balm, and it comes in capsule form), Taurine 200mgs am and pm, (another amino acid), magnesium 800mgs at night, and I stopped eating meat, dairy, and wheat but still eat lots of eggs, butter, veggies, potatoes fruit, brown rice so i'm not going hungry). I take Turmeric for pain. All of this has helped a lot. You should be able to find everything except CBD at any grocery store or herbal shop. If cannabis is legal in your area, it is here, you can find CBD at any pipe shop. CBD is not available on Amazon so don't confuse hemp oil for CBD oil, it's NOT the same thing. The listing must say "CBD" and give the milligram per bottle to be considered true CBD oil. But there are CBD oils available from private websites and it's not horribly expensive. Cannabis also helps a lot if you use a pure indica strain but go slow. I really hope this helps you find relief. MDs never help with side effects. They are useless in my opinion. The regimen I listed has stopped most of the anxiety and insomnia. Pain is still an issue but all of the supplements I listed helps it from being unbearable. If you can only afford one thing, I would choose the CBD oil. If you can afford to, I would see a naturopath for guidance. But you can do all of this by yourself too.

REPLY

Was this helpful? 3

I have just finished 12 weeks if epclusa may 28th. I have started losing my hair. I have pain in my knees and shoulders. The joint pain just started. If I would have been told of all the side effects such ad ferling poisoned and totally being unable to stay out if bed I might have looked at other options. My hep c is at zero viral count but my stage 4 chirrous is still with me.
I guess its a death sentence but lost almost three months of my life in a daze. I would warn others to check options. Best of health to all of you.

REPLY

Was this helpful? 9

Re: Verwon (# 1)

Hi Barbara. I have not experienced nerve sensation. What I have experienced is a restlessness and the inability to sleep longer than four hours at a time. I spent my first eight weeks of epclusa in bed. I would call my n.p. and she would act so surprised when I would say I felt like I was poisoned. I could not function. I felt like i was in a fog. I had no energy. Everything was a chore - i.e bathing/walking. No one prepared me for what was to happen. I have hair loss. I have changed. I am no longer full of life. I have a zero viral load but just completed epclusa may 29th. I wont be tested for viral load or progression of cirrhosis stage four until August. I am going to lobby for physicians to have mandatory sessions with patients to explain what is to come. I wish you the best.

REPLY

Was this helpful? 5

Re: Skpp930 (# 8)

Hello skipp930. I also have has some hair loss. I just am so beyond belief that my doctor, the pharmacist, nor my nurse practitioner told me anything about epclusa. Other than the fact that it would get rid of my hep C. I feel like they did not explain anything well in the pamphlet provided at the pharmacy concerning all of the devastating side effects it had. I still can't get over the fact that I just found out it's a black box medication. I feel that everyone on a epclusa is a guinea pig. I hope you get some relief feeling better soon. I hope that the people on this forum can inform people and make them have educated decisions about what they need to do for their health. Good luck skip.

REPLY

Was this helpful? 7

I'm happy to share that my hair loss has stopped and I believe it is growing back. Also my nerve pain in scalp is gone. I still have minimal nerve pain in my shins, and forearms that come on with stress but is much better than before. No more tendonitis or hand pain unless I use my hands repetitively for too long. I am about 10 months post treatment. I am much better than I was six months ago. It's been a slow come back though. Still hoping for more improvement and getting back to normal

REPLY

Was this helpful? 2

Re: Kathleen (# 13)

My viral load was 0 in the first month! Yeah, it got rid of hep c and killed a lot of other stuff my body needed in the process!

REPLY

Was this helpful? 2

Re: Kathleen (# 13)

I hope it stays that way for you. God be with you.

REPLY

Was this helpful? 0

Re: Kathleen (# 10)

I am one of the fortunate ones to receive epclusa treatment. The first eight weeks were brutal. No one told me how devastating the medication was. There were werks at a time where I was not able to function. I am today on ninth week and now feel like Ive made it through to the other side. The internet and forum helped me to become knowledgeable about epclusa. Will not know if my cirrohis has improved from stage 4 for many months but my heo c viral load is now zero. It's a great medication but please read all you can to be totally informed. I could not sleep. Got ambien for that. Don't be shy about calling drs office to tell them what you are experiencing or feeling. Don't miss any doses and drink lots of water.

REPLY

Was this helpful? 0

Re: Kathleen (# 10)

I pray for your sake you're right. It's been a little over a year, I'm still the same. A lot of people that didn't have any trouble when taking it are now. I'll pray for you. It totally ruined my life, my job, my brain, my body, everything. I wish I knew what feeling normal felt like for 1 day. It never got better when I took it, just worse and worse.

REPLY

Was this helpful? 4

Re: Verwon (# 1)

All of this was due to epclusa. It's been a little over a year, still haven't got my hair back, and no, I eat healthy. Still have to be medicated, still no memory, still wake up with body parts like they are vibrating. I wouldn't advise anyone to take this poison! If you went through it with no problems, just wait, they will start up. Many have said they didn't feel anything during treatment but they do now. I'll never feel a normal day again. All I can say is, when god is ready to take me, im more than willing to go, to get out of this nightmare!

REPLY

Was this helpful? 6

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.

REPLY

Was this helpful? 0

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.

REPLY

Was this helpful? 0

Re: Skpp930 (# 7)

And I've done everything about my diet, but nothing changes it! This stuff kills a lot more than Hep c.

REPLY

Was this helpful? 6

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.

REPLY

Was this helpful? 1

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.

REPLY

Was this helpful? 0

Re: Suzanne (# 2)

My hair is falling out more than before. This anxiety is different than regular anxiety. It's like your mind and body are not able to relax anymore. I know it has damaged something in my brain that controls gaba, or something that calms you down. I feel like my mind is slowly going away.

REPLY

Was this helpful? 6

I was on Prozac (fluoxetine) for about 8-9 years starting when I was about 14 years old. I'm 23 now and for about th...

25 REPLIES

I had mild psoriasis on my scalp, elbows, and a few on my legs. Within three days of being given an intramuscular inject...

3 REPLIES

I have been on prozac for the last two and a half years and it has ruined my life. Since taking prozac I have lost my jo...

4 REPLIES

I am 19 years old and I have been on Vyvanse for 3 years now. I started out with 50mg and it was amazing. I could stay f...

3 REPLIES

I took Topiramate for seven days. On the eighth day I had pressure that went up to 60 and 70 in my eyes and ended up in ...

6 REPLIES

Hi there, I have a strange question that i cant find the answer for. I took Tramadol/Zydol for around 7 months for back ...

2 REPLIES

Hello. I am 16 months post epclusa and feel worse than when I started. I was a server for over 40 years. Full of energy....

156 REPLIES

Has anyone taken Epclusa and experienced back and leg pain? I already have 2 herniated discs but it seems that since I s...

33 REPLIES

Is there anyone out there who has taken Epclusa? I'm fixing to start treatment and would like some feedback. ## When...

31 REPLIES

Beginning January I completed 3 months of Epclusa, n now am every day dealing with foot,ankle and lower leg swelling. Wh...

17 REPLIES