Epclusa Ruined My Life (Page 14)
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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 (# 43)

Yes they gave me something to help sleep and try an stop my anxiety issues ,i asked if any chance of getting tested about the 4th week but she basically told me to stop worrying no need to get early Viral load test as it wouldnt tell them anything !! I found this bit hard to understand as i thought it would tell you if the treatment is working ,to save taking another 8 weeks of treatment that may be knocking my immune system about,,who knows now i feel like its too late to stop so i may as well keep plugging on.!! Now the trouble seems if my dr doesnt understand anything he rings the liver clinic ,and they just tell him treatment is easy very few side effects and everything is just in my head maks it hard to not feel isolated ,i think you are right about $s being involved its like they know everything and anything you read on internet is just not true ,i have read so much about problems associated with treatment..the liver nurse evan told my dr that loosing my hearing in right ear could be caused by a clot in my brain rather then by eclupsa .probley caused by cigarette smoking thats why they put me on 4 steroid drugs a day i was suppose to take them for 10 days, hearing has come back so i didnt need to take 10 days of them..my stomach swelled up plus dizzy spells an feet swelling ,oh well just gotta hope for the best..but yes guinea pig i can relate too i think..hows life in Alabama sounds like great place are you near missisippi river (hope spelling right ) do you enjoy music i find it calming sometimes...i think we hear more about your politics then ours...its all boreing .take care hope i made sense ,just had anti anxiety med...try an get some sleep great talking to you.

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Re: Lou (# 42)

Hello. Have waited to hear from you. I'm not surprised that they said the ringing in your ears was not from the epclusa. You see they only get money if they sell the product and they don't want to hear about side effects. Like I told you before it has only been out for a little over two years and it's too soon for them to know long-term long lasting side effects. So they would rather keep us as guinea pigs and keep his ignorant to what the drugs can really do. You figure anything. Is a poison and I had to come to terms with that. I am very glad that you made it 33 days you're a third of the way through and that's a good thing. The side effects on having now or that I have had hair loss and I'm pretty sad..? Did you get anything for sleep if not? Right when you can. Peace be with you lou.

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Re: Kathleen (# 41)

Hi Kathleen,hope you are going ok ,i thought i would check in see how you are going ,im on about day 33 now i guess the days are slowly going actually going pretty fast ,every time i think iv had enough of this med i think about how you got through it.!! I had a hearing issue couple weeks ago ,loud ringing in ears ,of course my liver nurse had never heard of this happening mmm next day no hearing in right ear, saw my dr he doesnt know much about hcv told him what happened.he ended up ringing the liver clinic must of told him that these meds have very few side effects and would not effect my ears ,so he believed them and i probly just worry too much he thought. Ended up sending me to have hearing test they reported my hearing was just about not there in right ear,i was put on a steroid med for 10 days, after 4 days my hearing has just about come back thank God ,,i stopped taking the steroid tablets after seven days didnt like the side effects from them so thats all good now i was feeling pretty nauseas yesterday but seems to have passed thankfully,i got some relaxant tablets yest think they are working a bit ( dont think iv ever relaxed ) lol family trait.so its 7am Fri morning so far i feel ok .nearly summer time here now which means mowing grass ect people in my street are addicted to riding there grass cutters an mowing there grass i cant stand the noise plus i look at the grass here and i think bugger it im not going to make myself sick mowing grass its just not my major worry,we dont talk to neighbours much anyway ,been living here over 8 yrs and know about 2 people.anyway Kath hope you are feeling ok an happy...take care Lou

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Re: Lou (# 40)

Hello lou. As much as epclusa changed my life negatively i didnt stop. The big picture was that end of 90 days my hep c would be gone. And it was. I know you are dealing with copd also Which i did not have. The real deal is that i chose epclusa over sure chance to die. By the time you and i found out we has hep c it had donr great damage to us. I decided 90 days of poison were worth my living. I was told for sure not to take any supplement like valurian root. Lions mane or any of those worthless products. If they really worked they would be priced so high that we could not afford them. You need to ask for xanex and/or ambien to help you through. The pa you are seeing seems do be lumping you in with all orher patients. Epclusa has only been in the market since 2016 and they dont know all of rhe side effects yet. Please srand up for your rights as a patient and demand individual treatment. You are not bothering me. I want you to know that the medication works. Ninety days are a small price to pay fir a chance at prolonged life. Im glad i stuck with it and i know you will be too. Please Dont stop taking it. Im praying for you Lou.

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Re: Kathleen (# 38)

Hi Kathleen, hope im not annoying you ,im on day 7 today last friday i had ringing in my ears ,i told liver nurse said dhe haf never heard of that happening, ha ha.!told me to go lay down..anyway its monday today 3 days later ,went to my dr today told her about ear ringing episode told me to try valerium herb mmm i know that wouldn't do anything she said if doesnt improve she will prescribe me something next week she only works one day a week ( great. i dont think ) anyway i drove home i live 15 miles out of town?bout 1 hr ago i realised i cannot hear anything at all in my right ear im a bit freaked out as iv never had ear.problems before started pills .tried ringing my dr but gone away for a week ,oh well i just dont know if i should take anymore have app with liver dr on fri. see what he says. kinda already know ! Do u know if u can just stop taking pills or are they in system for good ? Sorry to hassle you i know you have your own probs its hard to find someone who understands .take care my friend..my thoughts are there with you.

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Re: Kathleen (# 38)

Dear Kathleen ,what you said really makes sence ,the liver nurse made a point of telling me she wss a liver expert...mmm no way would she accept that the pill could have caused ear ringing she was actually little bit rude about ,thought $might be involved ,i told her what am i supposed to do if ringing doesnt stop she said dont go to er go to bed..wow doesnt make me feel like i have any back up.unfortunatley i prob picked up virus about 40 yrs ago back in 70s.thanks so much for prayers ,i am also praying for you ?please try an stay pos as possible ,you are not alone even if im down under..lol

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Re: Lou (# 37)

Hello lou. Did not realize you were down under...

I had ringing in the ears. I also dealt with a physician's assistant. She down played all of my concerns. It's big pharma. If patients complain to them and quit program, they report it and all lose money. The biggest concern was I felt like I was poisoned every day after first week. I could barely get out of bed. I need help for everything. I have prayed for you and hope you have a better go of it. I've been off since may 29th. I feel more normal now. Still exhausted but I had a blood transfusion in 1979 which caused hep c which caused cirrhosis of the liver.

I'm in stage 4 now. So I'm not going to bounce back. At some point if fortunate I will go on transplant list. Right now holding my own. I never drank or did drugs except for pot. I will always come to this site to hear from you my friend in arms. Rest. Take pill same time every day. Drink lots of water. Ask for sleepers if you need them. God bless.

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Re: Kathleen (# 35)

Hi Kathleen, hope you are feeling ok. It was great to read your advice. Well, I'm on day 5 of rx, not going too bad till today. Did you ever experience ringing in ears? I have had constant ringing in ears since this morning. I rang the liver clinic, the nurse I've been dealing with assured me it would not be from epclusa and to go and lay down... I found this a bit strange, as nearly every thing i have read mentions tinnitus (ears ringing). Anyways, I hope you are staying strong. Oh we are surrounded by bush fires here in Australia ATM. Very smokey just to top things off. Stay well.

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Re: Kathleen (# 35)

Thanks, I appreciate your thoughts, will keep in touch hopefully..

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Re: Lou (# 34)

Oh lou. I am so relieved you are going to start Epclusa. My last day was may 29th 2018. I actually made it through. Please make sure to get sleeping meds. Your whole sleep pattern will change. You may experience depression and fatigue. Tell someone when you aren't (feeling right). Don't carry the burden alone.

You are going to feel like you have been poisoned. No one told me. When you take the plunge try to do it early mornings so it wears off by bedtime. Rest rest rest. Even if you aren't asleep, rest in bed. I know you can do it.

No smoking or drinking. Dedication is what you need. I hope it helps with your copd. Let us know how you are doing. God bless

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Re: Kathleen (# 30)

Thanks Kathleen ,iv decided to take the plunge this weekend will take first tablet saturday i think ,i tried drinking heaps of water yest but felt and looked bloated big time ,was practice run as iv been told heaps of water helps with side effects i hope.i also have been diagnosed with copd ( emphasemia ) nurse told me treatment may help my condition shortness breath ect like who really knows ?anyway really hope you are feeling better thanks for your reply it helped me make decision...

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Re: Lou (# 32)

So glad you are going to take Epclusa. The reason I think that they don't tell us about all the bad side effects is because Eoclusa has only been around since 2016. I believe that with any drug that the first few years are guinea pig years. We are the guinea pigs. I will say that you have to be very dedicated to take pill at same time EVERY day. I found that early morning was best for me because it made me feel so badly that I wanted it ti wear off by bed time. Make sure you get sleeping pills before you start. It really changes sleeping. Be well. Let our forum know how you are doing.

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Re: Kathleen (# 28)

I really think i would be doing it pretty hard trying to cope with copd (emphasemia )plus treatment epclusa im 65 yrs old with breathing problems viral load very high,thats a lot of virus to get rid of in 12 weeks ,you sound like you have had hard time hope you improve real soon ,why do we get told side effects are very mild ?my VL numbers went up after flu vacc they said flu vacc would not cause increase so i better do the treatment!but iv heard it can increase numbers then go back down .God bless you good luck.

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Re: skpp930 (# 11)

Wow that message sounds so typical. I am in australia. I keep getting told there are very little side effects. I'm 65 yrs old prob had hcv since 70s. I am still f1 fibroscan 7.2 but I do have high viral load 20 mill, went up drastically after having flu vaccine but liver nurse said vaccine would not affect viral load. I have been told that it could do it... Anyway they have got me ready to start epclusa tomorrow. I really do not know if it is worth doing at my age, as I feel not too bad considering I've had it since 70s (great yrs). I also have recently been diagnosed with emphasemia which isnt much fun at all. Anyway, would love to hear your opinion as I'm supposed to start treatment tomorrow. I'm really confused. Hope you are feeling better. God bless.

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Lou (# 30) --

Lou. I think the outcome is better than not taking Epclusa. Its true it is brutal. You must have a great support system. I was totally out of it for 6 weeks or so. Felt like I was poisoned every day. I could not sleep. Dr gave me ambien. That helped. I am 70 and did not think I could make it through the rabbit hole but I did. I lost a lot of my hair. I have hand and wrist pain but I have zero viral load. Try it and if you cant do it at least you gave it your all. I am two and a half months post. Life is good. I wish you the very best.

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Re: Kathleen (# 18)

I'm suppose to take first day of treatment tomorrow. I'm 65yrs old and dont think my body will handle this treatment. My liver nurse says it has very mild side effects but i have heard different. I'm already struggling with emphasemia and just dont know if i shud start. I feel like im getting pushed into doing it. Hope u are ok.

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Re: skpp930 (# 11)

Why does big pharma not respond to all of our comments? I feel like my life will never be the same. I was deprived if any dangerous side effects. My hair has fallen out. My aches are constant. I wish I could post everywhere how awful it has been. God be with you all.

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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: Suzanne (# 2)

Hi Suezanne. I'm 65 yr old geno 3 suppose to start tx next week. I've been diagnosed with copd recently, with breathing problems trying to quit cigs. I dont think my body would handle epclusa. I suffer from anxiety already plus normal aging problems. I dont feel too bad considering my age. I think I may be better just leaving as it is, I dont drink and try and live healthy. Your opinion would be greatly appreciated. I do hope your feeling better. Thanks.

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Hi Barbera , iv been reading about your epclusa episode, how are you feeling now ?reason i ask is iv heard a few negatives about epclusa im suppose to start next week not sure what to do as iv just been diagnosed with moderate copd ( coughing shortness of breath ect )im 65yrs old and dont feel sick from the hep yet just tiredness normal ageing things i guess! Dont know if my body is ready for another powerful drug yet freezing cold in oz atm ,probley got infected back in the 70s .i hope your going ok now looking foreward to hear how your tx went.thanks

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