Epclusa Ruined My Life (Page 3)

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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.

303 Replies (16 Pages)

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41

Re: Lou (# 40) Expand Referenced Message

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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42

Re: Kathleen (# 41) Expand Referenced Message

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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43

Re: Lou (# 42) Expand Referenced Message

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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44

Re: Kathleen (# 43) Expand Referenced Message

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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45

Re: Lou (# 44) Expand Referenced Message

Actally tennessee. Quality of life after Epclusa is better. They dont check viral load until you finish. I was checked after eight weeks because I had issues and by week eight my viral load was zero. Epclusa works... Its just getting through to the other side that sucks.. I am so frustrated at the lack of care and concern patients recieve when making inquiries about the drug and effects. So proud of you for sticking with it. Just a thought..cigarettes are poison too. So if you still smoke, this might be time to chuck them in a bonfire and do a quitting ritual. We have been gifted a wonder shot at nrw life. Never smoked but had blood transfusion in 1979 before they checked for diseases. Thats how I got hep c that turned into stage 4 cirrohis. Untreated for 39 years. Life has no guarantees for me but I would not want to put any unneeded poision in my body ever. Stay strong Lou. You can do it. Drink scads of water. If you feel like resting...doing nothing, its your body telling you it needs it. The after effects are worth living for. You and I are blessed to have this opportunity. Seize the day my friend. We are bonded through this. Stay strong.

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46

Re: Kathleen (# 41) Expand Referenced Message

Hi Kathleen, just a check in to see how you are feeling? I hope the storm over there was not too bad for you. Anyway, sunday night here, gotta see a hearing dr this week to see how things are going. Main thing im getting is nausea every few days plus depression as usual. I think thats normal anyway. Anti-anxiety meds seem to make me sleep better. I hope you had an ok weekend and hope you have a few friends or support to talk with. I find the older I get my support seems less lol. Anyway, great being able to talk about my problems with you..take care.

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47

Re: Lou (# 46) Expand Referenced Message

Hello. Im far away from the storm. The hurricane has taken its toll. Devastation. I had depression on Epclusa. It has carried over since I finished May 29th. Unfortunately I had to move from California to Tennessee five days after stopping med. My gastroenterologist plays down my depression. He said I should have no side effects. I still need sleeping meds. My wrists hurt and my shoulders. Never hurt before. I am moving back to California at the end of October. Have no support system here. Yes, we lose people as we age. Less to be close to. I still hope my health will level off but my hep c caused cirrhosis stage four and there is no cure. Only thing will be as I get sicker I will be able to have a transplant. I do feel Epclusa saved me. I know it will for you too. Stay strong Lee.

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48

Take Epclusa on time. It works.

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49

Re: Kathleen (# 47) Expand Referenced Message

Hi Kathleen, I really hope your depression is not too bad for you! Im feeling bit the same, i used to think winter time was easier for me with breathing issues now i think winter and summer are both a bit painful, we've had forest fires lately they warn people to keep doors windows closed that makes it very stuffy especially now its starting to warm up, hard to find happy in between lol, when the fires stop they start burning sugar cane? Thats a bad health hazard plus smells sickly sweet kind of thing (healthy living) ha ha. its 1.30 am now woke up coughing almost gives you a panic attack te to close windows for a while!!! California sounds nice for you. When i was a little kid davey crocket was my hero lol..how do you get to california bus, train? Anyway Kathleen really hope your feeling bit better, i think slow deep. Breathing helps with depression and getting back to sleep, i might give it a try ok...take care of yourself thinking an praying for you...

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50

Re: Lou (# 49) Expand Referenced Message

Epclusa and depression go together. It's not bad now. Just feel fatigued. The hardest part for me is sleeplessness. I never smoked so no breathing issues. Copd sounds scary. I have never been into drugs or alcohol. So finding out I had hep c and cirrohis was extremely scary.
The side effects are not nervous system damage but definitely affected my joints. Others say epclusa did the same damage. Driving back to California. It's 2000 miles. Take care. Take medicine the same time every day. Drink lots of water.

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51

Re: Kathleen (# 50) Expand Referenced Message

Hope you enjoyed your drive ,the scenery must be beautiful ,one day i may get to see it ,silly me tried a quit cig patch yesterday i forgot to take it off at night ,felt sick all day yesterday dont think they go with epclusa very well ! Day 41 today felt so horrible yest its hard to take today but i will ,once again theres no one to get back up here in aust if not feeling well.how are you ?i guess you must be tired from driving so far ! try take it easy hope you are feeling happy being in california.

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52

Re: Lou (# 51) Expand Referenced Message

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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53

Re: Skpp930 (# 7) Expand Referenced Message

I'm in australia. I lost hearing in my right ear on my 2nd week. I'm lucky my dr put me on the prednisone steroid drug which saved my hearing. Of course the liver clinic said epclusa doesn't affect hearing..crap...no feedback, no help. I think it's all $$$. On the 8th week I felt like throwing out pills due to depression and anxiety. Bo side effects they said...mmm.

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54

Re: Kathleen (# 10) Expand Referenced Message

Hi Kathleen. I hope you are going ok. My phone has been out of action. I'm on my week 8 now and i think i've been getting depression, anxiety, copd. It seems worse and i feel like giving up. My dr is useless and the liver clinic wont even answer my calls. No help whats so ever..its raining here now & that makes breathing worse. I wonder if its worth it. Sorry just having bad night. Hope you are staying strong.

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55

Anybody else taking harvoni or epclusa tx with emphasemia or copd? I'm on week 8 and feel so exhausted. I feel like stopping the pills. I'm 65.

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56

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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57

Re: Kathleen (# 56) Expand Referenced Message

Hi Kathleen ,how are you going ?hope you are well sorry iv been out of touch ,finally finished epclusa bit of a rough ride last 10 days ,anyway my feet ankles puffed up my local dr was a bit concerned about my kidneys ect.so i had blood test it showed my alt ast s in normal range but iv always had very low cholestral 2.4 ect now it is 5.0.iwould epclusa make it rise do you think ,?i cant see my dr for 2 weeks to ask her, and i was in so much shock seeing alt ast results i didnt get around to asking her about cholestral prob just normal ,i cant ever remember seeing my alt ast s in normal range.starting to get hot over here now,the fires in California look so terrible hope you are safe and not feeling too bad !just thought i wud let you know that i finished tx ..thinking of you please take care

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58

Re: Lou (# 24) Expand Referenced Message

Hello lou.
You should be done with epclusa by now.
Its been 5 months since i funished my epclusa.
My side effects are widening.
My wrists and shoulders hurt.
I have shooting pain in my legs.
My hair is so thin.
So many side effects we were not told to expect.
My hep c viral load was zero after one month but too much scarring in liver.
Im terminal with no check out date.
I never drank or did drugs.
Its just a toss of the dice.
All I can say is do all yoy can to stay strong. Dont take this medication and get healthy without realizing what a blessing and gift you have recieved.
Lou made it to California.
Hopefully my health will mellow out for awhile.
Good luck to you all. Take meds same time everyday..as if your life depended on it.

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59

Re: Kathleen (# 58) Expand Referenced Message

Hi Kathleen hope your not feeling too.bad ! I v been finished tx about 1 mth dont feel real great ,nausea seems to be with me often,my dr had me do blood tests most numbers looked ok i think i have a copy here wih me alt ast in normal range first time in.yrs still dont know about VL gotta wait 2 mths for that ! Iv noticed i have a blotchy rash on my forehead ,went to see liver clinic on fri to show them , but guess what they were having annual xmas party so cud not see any one..also we had heat wave conditions last weekend 104 deg i felt so bad dont rember it having such an impact on me,i have 2 fans going all day just felt exhauzted put feet in cold tub of water ,feet legs puffing up ,i went into town next day booked into motel with air con try an get energy back ,i noticed room had strange odour but too tired to keep driving .i put air con on went strait to sleep ,anyway i woke up in morning with worse chest constantly coughing ect i went to a dr she said temp was ok bp ok ect dont need anti biotics !!im still coughing yuk up !no one here knows anything i dont think any way been a week tomorro she said may have picked up germ from dirty air con i just hope its not my immune system stuffing up .got to see my dr on mon be interesting get her opinion.maybe hope your enjoying calif. and feeling bit better ..your in my prayers

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60

Re: Lou (# 59) Expand Referenced Message

Hello.
I have not had swelling or much pain.
Mostly exhausted all of the time.
Epclusa is in realm of so new that I feel we are guinea pigs.
I will probably die before all side effects occur.
California on fire for month.
Don't know if my lungs hurt from fire or side effects.
Congrats for doing 3 months
On Epclusa.
Hell of a thing.

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