Nervous System Damage From Epclusa (Page 2)

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Barbara Says:


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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21
Kathleen Says:
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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

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22
Lou Says:
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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.

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23
Kathi Says:
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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.

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24
Lou Says:
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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.

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25
Lou Says:
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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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26
Lou Says:
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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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27
Susie Says:

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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28
Kathleen Says:
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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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29
Lou Says:
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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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30
Kathleen Says:
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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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31
Lou Says:
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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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32
Lou Says:
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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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33
Kathleen Says:
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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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34
Lou Says:
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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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35
Kathleen Says:
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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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36
Lou Says:
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Re: Kathleen (# 35)

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

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37
Lou Says:
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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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38
Kathleen Says:
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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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39
Lou Says:
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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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40
Lou Says:
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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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