Epclusa Ruined My Life (Page 6) (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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Re: Kathleen (# 89)

Hi Kathleen. I agree since taking Epclusa my health has gone downhill. Even my toenails have gone strange. What annoys me is when I mention to my GP (3rd GP in 4months) about any symptoms I have, like sudden asthma, numbness, breathless, ect, he always says same as the liver clinic, never heard of Epclusa causing that side effect. He seems to get all his info from the liver clinic (epclusa) people. I don't like this steroid inhaler he put me on, twice a day plus ventolin when needed. Once again I seem to share things you experienced smoking ect, I'm just glad we had our youth in the 60s 70s, and not these days, when the world seems to have lost its innocence, and I liked the music then. lol. Take care, stay away from the fire smoke, the thought of summer scares me, hot days nights, smoke everywhere. Oh well could be worse, I like that saying "youth is wasted on the young these days"

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Re: Kathleen (# 89)

Hi Kathleen, hope this message finds you happy and going ok. I don't like troubling you, but I would be interested to know if the puffers they prescribed for you were steroid based? I'm on this one called pulmicort turbuhaler twice a day for asthma. I read where it can cause infections and lowers immune system. I just don't think this could be good after taking Epclusa DAAs. I really don't want another infection. My silly Dr has forgotten to give me asthma meds. I never even knew or was told that I had asthma as well. Maybe the treatment brought it on. I just don't know plus I don't think my Dr cares or knows much about treatment or asthma. He said some people get it over 65yrs old. I also read where your not supposed to just stop taking the steroid med, but it doesn't seem to make much difference with my breathing. I've been on it for 3 weeks. My Dr is gone on holiday again or I would ask him if I would get bad feelings if I just stopped taking it. He told me I need something for my asthma because I was using my ventolin too much. He didn't seem to understand that if it's smokey you need to use the puffer more often. Anyway Kathleen, sorry to take your time. No one around here understands.

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Re: Lou (# 91)

Hello.

You are NOT wasting my time. Yes my inhalers are steroid based.

I never smoked but since Epclusa my lungs have been easily irritated. Last bout took almost six weeks to get better. I went to hospital and they ordered steroid pills and the inhaler. Not sure if they were effective or time just ran its course.

Did you get your flu shot?

I am soooo paranoid about going to public places. About touching items at stores. I know it sounds weird but since my hep c/ cirrohis i have changed how I shop. People go out sick and don't care if they get others sick. Also I know that it's not good to be on any steroids for a long period of time.

Seasons changing here. Got down to 48 degrees yesterday morning. No complaints. Love the cold.

Take care and keep me posted.

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Re: Bonnie (# 20)

Hi Bonnie,I'm in Australia,I can totally relate to how you feel,I'm 65 and have survived fine till now,I did epclusa treatment 11mths ago ,i had bad side effects during treatment ,they have never gone away ,now some days legs ache so much can't walk totally exhausted numb fingers toes ECT, virus gone so far they say,I don't think I will ever feel well again ,the liver people who basically pushed me into doing treatment oh they were so nice,lol ,have been totally no help at all, no support at all,my dr knows nothing about treatment or the virus and gets all his info from the liver clinic in our small town,they tell him there's no way Epclusa could do these things to me.i just feel like a guinea pig,IV just been prescribed a steroid inhaler for asthma twice a day,it doesn't seem to agree with me Edema legs abdoman nausea ,I read that you shouldn't take it budesonide pulmicort turbohaler if had liver problems,I don't know what to do,dr said I was using my Ventolin too much,but I had no choice due to fires in my area,I have no faith in western medicine good luck to you, please any ideas appreciated.

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Re: Kathleen (# 10)

Hi Kathleen, hope you are doing ok and not getting too many nasty effects from treatment. Summer is just starting over here and I can't cope when it's too hot. I'm not sure if I told you since doing treatment I've had asthma. I'm on Ventolin puffer when having trouble breathing; also a preventer inhaler called ultibro once a day. It's supposed to make you breathe easier but I really don't know if it's doing anything. I just take it. When the fires were happening here the smoke in the air made me use my Ventolin more than usual to assist breathing, (panic attacks make it worse). Anyway, he said I'm using Ventolin too much and prescribed me a steroid puffer called pulmicort turbohaler with budesonide in it. Sorry for raving on but your one person who seems to understand. Anyway, I did some reading and saw a warning about liver problems and budesonide should not be taken, something about the immune system doing it hard then the steroid budesonide weakens the immune system and causes infections, ect. I just feel like stopping it, but it says on the packet don't stop this med cold turkey. I've only been taking it for 6 weeks, I don't need any infections, and my breathing hasn't really improved since starting it. My dr's gone away again and there's no one who understands. I'm a guinea pig. Take care of yourself. Write back anytime if you feel like talking.

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Re: Kathleen (# 92)

Hi Kathleen hope you are going ok,starting to warm up over here I guess it's the opposite where you are!well latest with me is my dr thinks my shortness of breath isn't responding to the inhalers I'm on,so IV now got to see heart specialist and do a stress test think that's what he called it,oh well the game keeps going on,I really don't like getting out of breath so easy,they will probably suggest stents ect tried telling my dr I didn't really have these problems pre epclusa ,I could tell he didn't really believe that treatment could cause this.i kind of hope they can treat me with meds rather then operating ,what's been happening in your life ,?hope you are going ok,I don't think I will ever get used to the heat here,the liver people assured me after treatment I will feel so much better lol,really glad I'm older and experienced life a bit and not a young kid getting these symptoms ,it's so hard to find someone from liver clinic interested in Poste symptoms ,
Take care of yourself.

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Re: Lou (# 95)

Hi. Yes glad heat is gone BUT all over California fire had erupted. Millions of people without power. Thousands of lost their home. Businesses are gone. And the sky is thick with smoke I live in a little town called Carmichael California which is a suburb of Sacramento. All around us is fire on the interstate by the airport near San Francisco downtown Los Angeles and up in the hills going east towards Lake Tahoe on fire. I just don't understand how this keeps happening and why are Forest department does not do more offseason to prevent these horrendous fires. Yes I too am still struggling with after epclusa. My life has changed. Before I knew I had hep C and cirrhosis my life was better than it is now. I was working although it was difficult because I didn't know why I was so tired all the time. At least I could function. It takes me so long to get ready to do anything and like I have to think about it two or three days ahead of time to get up enough energy to want to leave the house. I was very active I worked until three years ago and now my life just sucks. I'm sorry you're having so much trouble with your breathing and I hope they find a cure not a cure but some way to help it get better and stabilize. I just don't understand why your doctor and my doctor and other people's doctors are so hard wire to not believe that epclusa is the Devil in Disguise. I hope you get some relief from the Heat and I hope to hear from you soon Epclusa sucks.

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Re: Kathleen (# 18)

Take c 60
It really works I did harvoni for five days and stopped because of what your describing. It was terrible.

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Re: Kathleen (# 96)

Hi Kathleen,hope you are ok,we have really bad fires not far away,plus slot of dust getting blown in also, definitely not good for my breathing,it's so hot not even summertime yet,have to keep doors windows closed so don't get any fresh air ,I really don't know how I'm going to survive summer,since doing Epclusa I feel so exhausted have trouble walking very far without nearly collapsing,I had to go see my dr yesterday to see if he could help me with my numbness aches in joints anxiety ECT ,was a waist of time all he could say was you must be feeling good getting rid of virus,I said no way I wish never done it never felt so bad!all he could say was treatment wouldn't cause any problems,I felt like screaming WAKEUP,he didn't even notice that I have put on heaps of weight around my stomach so much that I feel unbalanced always scared having a shower that I will fall over ,also been getting body jerks or leg jerks often every day all he could say was probably nerve damage ! Now he has made appointment for me to see heart specialist on Monday to do a stress test,have you heard of these ?I'm not looking forward to going on a treadmill till I nearly collapse to see if heart is going ok,I'm really stressed about stress test ,,it's midnight here Friday temperature is still in 90s fans going flat out ,Carmichael sounds like ok place ,it quite large compared to where I live, population 2,800 ,,,take care Kathleen

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Re: Lou (# 98)

It's great to hear from you. We also have wildfires everywhere here too. I was thinking that I also gained weight just in my stomach since Epclusa. My ears ring all of the time. My liver specialist is so unplugged from my symptoms that I am changing my health care plan. No one wants to talk about how dangerous Epclusa really is. Im sure they get kick backs from pharma. I am exhausted just going out to shop. I feel weak and useless now. Not myself any longer. Please take care.

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Re: Skpp930 (# 8)

Hi Skpp30, you are not alone. I'm 12 mths past tx Epclusa. I have numb toes/fingers, nausea near everyday, pain in my knees make it hard to walk. I have sudden asthma. Never had it before tx. My dr has me on corticosteroids which have bloated me so much it feels like my stomach is pressing on my lungs which means shortness of breath. Oh I wish I never did their tx. It cured the virus but wrecked my immune system. Scared to see what happens next! You're right. All the so called experts say tx wouldn't cause this, the hep C must have. I'm 66 and felt ok pre-treatment. Now I'm a wreck. Take care. Write me back if you need support against Gilliard.

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Ok. I am now 14 months after epclusa. If I would have known how it was going to react my body and the side effects I might have chosen another course. I have ringing in my ears so badly 24 hours a day that it's driving me insane. I can't sleep without sleeping aids. I am exhausted all of the time I have no energy. I just don't know why they didn't tell us before we were giving. It, all the side effects

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Re: Lou (# 100)

Ok. I am now 14 months after epclusa. If I would have known how it was going to react my body and the side effects I might have chosen another course. I have ringing in my ears so badly 24 hours a day that it's driving me insane. I can't sleep without sleeping aids. I am exhausted all of the time I have no energy. I just don't know why they didn't tell us before we were giving. It, all the side effects

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Re: Lou (# 98)

Hello lou. Merry Christmas. I am now 16 months past Epclusa and feel horrible like you. The ringing in my ears is so bad. I cant sleep well.
My toes are numb. Im exhausted all of the time. So many things they didnt tell us. Hope you are far from the awful fires. Its on the news all the time. Be safe. Thinking of you.

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Re: Kathleen (# 103)

Great to hear from you. Yes, as usual I'm having similar reactions as you. It's been about 13 mths for me since I finished treatment. Numb toes and fingers, lot of pain in knees, ect... I'm not sure if I was having trouble keeping my eyes open in the day time usually when relaxing. I also experience body jumps or jerks. I've dropped so many coffees and tea. Luckily it doesn't happen whilst driving, although I get extremely tired and try to not drive. So far I've been to neuropathic specialists and the answer I seem to get is that it must be nerve damage. No one seems to want to blame the treatment. Yes, fires have been bad. I'm not too far from some fires. Smoke is the worst thing, having to close windows/doors and not getting any fresh air. Plus the hot weather is a pain. It was christmas day yesterday and we had the first good rain in months. Great gift! Anyway Kathleen, please take care. Don't hesitate in messaging if you feel like comparing or talking about our issues. Happy christmas to you. Hope 2020 is good.

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Re: Lou (# 104)

My thoughts are with you. The horrible fires are just unbelievable.
The loss of animal/human is hard to accept.
Im sure with your health issues from epclusa that you are suffering.
Please know that people all over the world are watching snd wondering how to help.
Take care and rest and drink water.

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Re: Kathleen (# 106)

Thanks Kathleen, kinda good to know there's somebody who understands, I really think seasons are changing, it's 1.30am might try get bit of sleep ,usually sleep couple hours then I'm awake again..take care ok

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Re: Kathleen (# 105)

The lack of evidence based information is horrifying. I would gladly go through labor again rather than feel like this every day, ongoing. I wish I’d never started it (I stopped just yesterday after 6 weeks). I feel betrayed. If I’m ever offered a 90+% cure rate miracle drug again especially if it’s been on the market for only three years I will fall over laughing and I will do much more research.

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Re: KB (# 108)

Kb so sorry for you.
We are supposed to trust those in charge of our lives.
Their words are empty because they have used up their words making deals with big pharma.
I was so shocked to know I had hep c and cirrohis that I was more than willing to believe anything that was said.
When I started epclusa I was one of the early pstients as epclusa was way new on the market.
It cost kaiser over one thousand dollars a day for ninety days.
I took them religiously.
Never missed a dose. But I felt like poison wasd runn through my body and had no control of how i felt.
No one told me how God awful it would be. Was going to quit every day because life at that time was too much to live.
But kb you really need to talk to doctor to start again where you stopped.
We are strong . warriors for epclusa. We cant stop after sixty days. Please start it again. There is a reason for a full ninety days. It will not go away. May feel better but it wont last.
Please talk to someone. Im with you. We are too sick to quit meds.
Be strong. I am a 72 year old woman and i made it through.
I know you can do it. My thoughts are with you.

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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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