Epclusa Ruined My Life (Page 4)

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 (# 60)

So glad you're feeling a bit better, the fires look so bad....every year around here there's usually a fire, and yes, it really effects lungs badly. Plus people with ride on mowers, leaf blowers, etc all do us harm i think. Just wish i could shake the coughing, a lot of flowering trees does not help....

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Re: Skpp930 (# 7)

I totally agree. I'm 2 mths past. tx edema in legs, nearly went deaf, nausea, depression, and they told me no side effects... mmm$$$$

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Re: Davoe (# 62)

Hi. I finished my epclusa june 5th.
It was a hell of a ride.
Felt poisioned evety day (duh). Considering that I was being poisoned. I was not told by my Physicians the side effects that would come with epclusa I'm not sure it would have changed my mind about taking it but I was very poorly informed. Even going on the internet I did not know of all the side effects that could happen and it's been eye-opening to see all the things that have changed in me since epclusa. I am a woman I had beautiful hair I know do not have very much hair it is very thin it won't grow back very well and as far as nerve damage I'm not sure my spine hurts all the time now and that's never happened before and my shoulders hurt. I did have pain in my hips but that is gone. It's been a long struggle to get over epclusa and to get a clear head and to try to look ahead to the Future. Tell me what happened with you and how you were feeling I'm very interested to know

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Re: Skpp930 (# 7)

I hope you are feeling better now. I get final blood test done on Friday. I'm 65yrs old - I agree with what you said. I did not feel to bad before treatment started. I've had side effects. Nearly went deaf in right ear, had to take a steroid to get hearing back. Anxiety, nausea, edema are just a few. Oh - recently numb fingers on right hand, numb toes left foot. Weird thing is every time I mention these symptoms to nurse at liver clinic they say never heard of that happening before. I don't believe it, they have been no support at all. Not even a phone call. I'm starting to think the whole thing was a waste of time. Hope your condition has improved. I'm a bit worried that my Dr doesn't really know anything about these new meds. Please let me know how you are. thanks

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Re: Kathleen (# 13)

Hi Kathleen, got my results back and I'm cured apparently, very pleased, but now I seem to have numb tingly fingers on one hand and a couple of toes, but worried this may get worse. Have you heard of this before. Hope you are going ok. I've had brain fog often plus family dramas lol. Take care.

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Re: Davoe (# 65)

I di not have numbness. I have fatigue beyond belief.
I just saw new gastrointestinal dictor two days ago. He seemed surprised that 5 months post epclusa I still feel so tired. Having another ultrasound next week.
I also have cirrohis frim bloid transfusion so I am not sure of your illness.
I know that doctors do not tell us all side effects.
I have had to be an online detective to learn.
I hope you talk to your doctors about symptoms.
We are guinea pigs for hep c meds.

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Re: Kathleen (# 66)

Thanks Kathleen, yes I know wat u mean about being GUI ea pig

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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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Are there any elderly say over 60yr olds who have finished hepatitis c treatment, and now have aching joints exhaustion, numbness ,edema ect, would like to hear from anyone who may have experienced these symptoms ,or is it just me.thanks

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It's now 12 MTHS since finished epclusa treatment stopped virus so far ,but I feel worse now then pre treatment exhausted all the time nerves are buggered numbness hands and feet ,if I had a choice I would not touch treatment and don't depend on any support from liver clinics or drs.

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Epclusa has ruined my life. I took it from the second month in 2018 to 5th month and 2018. I had hepatitis C and cirrhosis. I feel worse now than before I took the medication. Xclusive has Zapped my strength. My will to live. I'm exhausted all the time. I have become reclusive. And I have no quality of life. I was never told before taking epclusa that I would have reactions like this. What I would call the physician's assistant and say I felt like I was being poisoned she would downplay it and just tell me to get more rest. I don't think I want people to know how dangerous this drug is especially with it only have been on the market for less than two years when I started taking it. Please be careful study all your options and make a choice with more than one position on what is best for you. I am 71 years old and my life is over and I owe it all and feel it's all because of aepclusa

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Re: Davoe (# 70)

Epclusa is poison. Im 71 and it ruined my last good years. I am going to lobby for the future of a Kousa in my home state of Sacramento California. I am recently seeking attorneys and spokespeople please be wary above clusa it is the Devil in Disguise

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More people need to speak out.
I am one if many hundreds that have serious problems after epclusa. It's a new product that followed harmonee which was fairly new also it is made by the same people. It is an awful product that makes you feel like you're being poison 24 hours a day for 90 days at the cost of $1,000 a day to feel that way. I have never been so sick in my life and I have been off of epclusa for 14 months and I'm sicker now from the residual of epclusa than when I started. Every time I would talk to a doctor or a nurse's position about my symptoms they blew me off like it was nothing. Either they were ignorant or they were being paid to try this product on us being guinea pigs. Please try anything before you try epclusa. I am 71 years old and I'm looking forward to death as a relief from the effects of epclusa. I write often and I've had never had a reply from anybody from Pharma asking me how I feel or giving me any explanations or any hope

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Re: Davoe (# 68)

Yes i remember you.
Am saddened that you also have dire problems.
There seems to be a complete lack of care or concern from the makers of epclusa. They deny deny deny. And we die. I don't know what else to do my life is ruined I didn't even know I had hep C or cirrhosis until I had testing done from the time I took the inclusa the first month in January of 2018 to now my life has gone downhill. I have so many medical problems. I hope there's a future for you and a bright one at that

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Re: Kathleen (# 63)

Hi Kathleen,it's now about a year since e treatment ,I'm 66 yrs old ,I can't say I feel very well exhausted all the time,numb fingers on one hand some toes numb, I felt ok pre treatment,what have I done to myself,no one understands or cares just waiting to see what next problem will be!,if it was back in the 70s, I would.know exactly what to do.i feel like a guinea pig , please let me know how you are going really interested.

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Re: Kathleen (# 74)

Hi Kathleen, sorry you aren't feeling too good atm, I feel so similar as you, I must have spoken to the liver Dr for maybe 5 minutes, he assured me how wonderful Epclusa is with very few side effects, I'd like to see proof of surveys done on people and what age people were who were tested, even the nurses I talk to at liver clinic all say the same thing exactly "oh treatment wouldn't cause those problems your having, I've never heard of that happening before", well all they have to do is get on Google or Facebook and look up Epclusa side effects. If I can help in anyway please let me know, it's about time gilliard aimed up an took responsibility, at least showed a bit of support, I'm sure we are not alone. Please take care, thanks.

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Re: Lou (# 77)

Hello my friend.
Yes pharma shoulf be held accountable.
Seriously you and I and many others were some of the first group on Epclusa.
The cost was1100 dollars a day.
For 90 days.
We got no response frim anyone at Gilead.
I am totally exhausted every day.
I have ringing in my ears 24/7.
I am no longer with kaiser medical group. I list total faith in them and they do not care.
Im sorry you are suffering.
Lets stay in touch and support each other. Ir means so much to me. Take care. Kiss a rou for me.

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Re: Kathleen (# 78)

Thanks for reply,yes I agree it does help to have someone to compare with ,just starting to warm up over here ,I don't like heat much plus humidity always high ,this is just a short message oh by the way how are your feet ? lol I had to some shopping today always seem to get puffy plus toe nails gone bit wierd numbness seems worse in hot weather , yep gilliard has some explaining to do I think, great hearing from you please take care try to kick back ok, might be bit hard to find a room but. Any good ideas or have a yak anytime .

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Re: Kathleen (# 78)

Hi Meant to say bit hard to find a kangaroo atm.just a brief message how are your feet? mine get puffy in the heat which is just starting toe nails bit wierd.take care

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