Nervous System Damage From Epclusa

67 Replies Updated



Conversation Starter

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.



Showing Replies 1 - 20 of 67 RSS Feed


Page of 4    Next Page     Sorted By:
1
Verwon Says:

Hello, Barbara! How are you? Has there been any change?

Those are not normal side effects of this medication according to recent FDA reports. They typical include nausea, dizziness, insomnia, depression, and diarrhea.

Are you on any other medications? Do you take any supplements? Do you drink a lot of sugary, or caffeinated beverages?

REPLYSHAREREPORT
Was this helpful?      0  
2
Suzanne Says:

Yes I started with hand/arm pain about a month after starting treatment. Now I am three months post treatment and the pain has now been nerve pain in my hands, lower legs, hands, arms and scalp and hair loss. Also intense anxiety at times.

REPLYSHAREREPORT
Was this helpful?      0  
3
Susie Says:

I have experienced those same symptoms. I am 4 months post treatment with no improvement.

REPLYSHAREREPORT
Was this helpful?      0  
4
Katherine Says:

Re: Suzanne (# 2)

I just started taking this medicine and I have a question... Was your hair loss experience right away or over the course of treatment? Thank you

REPLYSHAREREPORT
Was this helpful?      0  
5
Skpp930 Says:

Re: Suzanne (# 2)

My hair is falling out more than before. This anxiety is different than regular anxiety. It's like your mind and body are not able to relax anymore. I know it has damaged something in my brain that controls gaba, or something that calms you down. I feel like my mind is slowly going away.

REPLYSHAREREPORT
Was this helpful?      1  
6
Susie Says:

Re: Skpp930 (# 5)

That is similar to what I am feeling. Have you tried to treat symptoms with supplements or dietary changes? What does your doctor say about it? I am anxious to find a way to feel better.

REPLYSHAREREPORT
Was this helpful?      0  
7
Skpp930 Says:

Re: Susie (# 6)

I've had every test done there is, doctors don't know anything about this medication, and they told me they didn't. Even Gilead couldn't tell me why I was having this reaction. I had to be put on Klonopin to take, my insides and body was shaking so much. It felt like I was burning up inside from my brain down. No one did anything to help me, they thought I was crazy, except one E.R. Dr. He called the gastro Dr. that prescribed it and told him I needed to be taken off of it, and the gastro Dr. said no and that I was making it worse than what it was. I was the 3rd patient he had given it to. The other 2 didn't have a problem, so I shouldn't either. He was a monster. I went through a living hell and am still in it. Can't remember, can't think straight still feel Crawley inside, especially in my brain, they have me on Xanax now. After the treatment, I tapered off of all the benzos, my brain was so messed up, I didn't even know who I was, anymore, how to get to places I'd been to many times, I totally lost my mind. I've stopped benzos, and alcohol before, never had any of these horrifying feelings. I had to go back on Xanax to be able to function. This medicine epclusa damaged my nervous system, I don't care what anybody else says, I felt it doing it when I took it. I finished treatment the last of January 2017, my hair is falling out more now than after I finished treatment. I'm still having to live with my daughter. I hate Xanax, don't want it, I want my brain back I had before epclusa. When this Xanax stops working, I'll have to be put in a place to be taken care of because of my mind. It's the only thing keeping me calmed down, and if I don't take it I hear music in my head over and over everyday. I'm scared I'm slowly losing my mind. I feel like epclusa burned it up. And to top it off got denied disability. Something needs to be done. None of these doctors are gonna blame the Hep c medicines, they are going say our Hep c did this to us, but it didn't, the medication did it.

REPLYSHAREREPORT
Was this helpful?      0  
8
Skpp930 Says:

Re: Skpp930 (# 7)

And I've done everything about my diet, but nothing changes it! This stuff kills a lot more than Hep c.

REPLYSHAREREPORT
Was this helpful?      1  

9
Susie Says:

Re: Skpp930 (# 7)

So sorry to hear about all the suffering you are going through. I have been listening to guided imagery and healing hypnosis videos on youtube. It helps some when I'm feeling very anxious or need to calm down to get to sleep. My biggest complaint is the nerve pain mostly in my scalp and neck also forearms, feet and lower legs. It just flares up out of nowhere. I have been on some pain pills and a small amount of xanax in the evening to help with sleep. I'm thinking about getting treatment at a chiropractors office that specializes in neuropathy. There are many new modalities but it is very expensive. They want over $6,000 for 42 treatments. My brain also feels very forgetful and I lose words in conversations. I'm also very weepy all the time. I'm so tired of feeling this way but I won't give up. I see this passing at some point. I can't accept this.

REPLYSHAREREPORT
Was this helpful?      0  
10
Kathleen Says:
via mobile

Re: Verwon (# 1)

I have been on epclusa for eight weeks and three days. In the first two months I felt like I was poisoned. Had hep c. After three weeks my viral load was zero. I have stage four cirrhosis and will take total of twelve weeks. This is the first week that I have felt (normal). I.e. not feeling like I wanted to die. I hope next four weeks are like now. Stay on course. Dont miss a dosage. There is light ahead.

REPLYSHAREREPORT
Was this helpful?      0  
11
skpp930 Says:

Re: Verwon (# 1)

All of this was due to epclusa. It's been a little over a year, still haven't got my hair back, and no, I eat healthy. Still have to be medicated, still no memory, still wake up with body parts like they are vibrating. I wouldn't advise anyone to take this poison! If you went through it with no problems, just wait, they will start up. Many have said they didn't feel anything during treatment but they do now. I'll never feel a normal day again. All I can say is, when god is ready to take me, im more than willing to go, to get out of this nightmare!

REPLYSHAREREPORT
Was this helpful?      1  
12
skpp930 Says:

Re: Kathleen (# 10)

I pray for your sake you're right. It's been a little over a year, I'm still the same. A lot of people that didn't have any trouble when taking it are now. I'll pray for you. It totally ruined my life, my job, my brain, my body, everything. I wish I knew what feeling normal felt like for 1 day. It never got better when I took it, just worse and worse.

REPLYSHAREREPORT
Was this helpful?      0  
13
Kathleen Says:
via mobile

Re: Kathleen (# 10)

I am one of the fortunate ones to receive epclusa treatment. The first eight weeks were brutal. No one told me how devastating the medication was. There were werks at a time where I was not able to function. I am today on ninth week and now feel like Ive made it through to the other side. The internet and forum helped me to become knowledgeable about epclusa. Will not know if my cirrohis has improved from stage 4 for many months but my heo c viral load is now zero. It's a great medication but please read all you can to be totally informed. I could not sleep. Got ambien for that. Don't be shy about calling drs office to tell them what you are experiencing or feeling. Don't miss any doses and drink lots of water.

REPLYSHAREREPORT
Was this helpful?      0  
14
Skpp930 Says:

Re: Kathleen (# 13)

I hope it stays that way for you. God be with you.

REPLYSHAREREPORT
Was this helpful?      0  
15
Skpp930 Says:

Re: Kathleen (# 13)

My viral load was 0 in the first month! Yeah, it got rid of hep c and killed a lot of other stuff my body needed in the process!

REPLYSHAREREPORT
Was this helpful?      1  
16
Susie Says:

I'm happy to share that my hair loss has stopped and I believe it is growing back. Also my nerve pain in scalp is gone. I still have minimal nerve pain in my shins, and forearms that come on with stress but is much better than before. No more tendonitis or hand pain unless I use my hands repetitively for too long. I am about 10 months post treatment. I am much better than I was six months ago. It's been a slow come back though. Still hoping for more improvement and getting back to normal

REPLYSHAREREPORT
Was this helpful?      0  
17
Kathleen Says:
via mobile

Re: Skpp930 (# 8)

Hello skipp930. I also have has some hair loss. I just am so beyond belief that my doctor, the pharmacist, nor my nurse practitioner told me anything about epclusa. Other than the fact that it would get rid of my hep C. I feel like they did not explain anything well in the pamphlet provided at the pharmacy concerning all of the devastating side effects it had. I still can't get over the fact that I just found out it's a black box medication. I feel that everyone on a epclusa is a guinea pig. I hope you get some relief feeling better soon. I hope that the people on this forum can inform people and make them have educated decisions about what they need to do for their health. Good luck skip.

REPLYSHAREREPORT
Was this helpful?      2  
18
Kathleen Says:
via mobile

Re: Verwon (# 1)

Hi Barbara. I have not experienced nerve sensation. What I have experienced is a restlessness and the inability to sleep longer than four hours at a time. I spent my first eight weeks of epclusa in bed. I would call my n.p. and she would act so surprised when I would say I felt like I was poisoned. I could not function. I felt like i was in a fog. I had no energy. Everything was a chore - i.e bathing/walking. No one prepared me for what was to happen. I have hair loss. I have changed. I am no longer full of life. I have a zero viral load but just completed epclusa may 29th. I wont be tested for viral load or progression of cirrhosis stage four until August. I am going to lobby for physicians to have mandatory sessions with patients to explain what is to come. I wish you the best.

REPLYSHAREREPORT
Was this helpful?      0  
19
Kathi Says:
via mobile

I have just finished 12 weeks if epclusa may 28th. I have started losing my hair. I have pain in my knees and shoulders. The joint pain just started. If I would have been told of all the side effects such ad ferling poisoned and totally being unable to stay out if bed I might have looked at other options. My hep c is at zero viral count but my stage 4 chirrous is still with me.
I guess its a death sentence but lost almost three months of my life in a daze. I would warn others to check options. Best of health to all of you.

REPLYSHAREREPORT
Was this helpful?      1  
20
Bonnie Says:

Re: Skpp930 (# 8)

I took Epclusa for three months last summer and I am still having severe anxiety and insomnia, muscle pain, mental fog, fatigue. Doctors are useless and always have been. I didn't even bother to go back. I was abandoned during treatment and had to ask my naturopath for help. I now take CBD oil (find one with 250mgs in the bottle and take 1/4 dropper on the tongue. Don't swallow right away, roll it around for 90 seconds then swallow), Bach Flower Essence which really works (I use 1/2 dropper full as often as I want and also roll it around on the tongue). I also take L-Theonine 200mgs at night (an amino acid), Melissa 1.5 gms at night (an herb also known as lemon balm, and it comes in capsule form), Taurine 200mgs am and pm, (another amino acid), magnesium 800mgs at night, and I stopped eating meat, dairy, and wheat but still eat lots of eggs, butter, veggies, potatoes fruit, brown rice so i'm not going hungry). I take Turmeric for pain. All of this has helped a lot. You should be able to find everything except CBD at any grocery store or herbal shop. If cannabis is legal in your area, it is here, you can find CBD at any pipe shop. CBD is not available on Amazon so don't confuse hemp oil for CBD oil, it's NOT the same thing. The listing must say "CBD" and give the milligram per bottle to be considered true CBD oil. But there are CBD oils available from private websites and it's not horribly expensive. Cannabis also helps a lot if you use a pure indica strain but go slow. I really hope this helps you find relief. MDs never help with side effects. They are useless in my opinion. The regimen I listed has stopped most of the anxiety and insomnia. Pain is still an issue but all of the supplements I listed helps it from being unbearable. If you can only afford one thing, I would choose the CBD oil. If you can afford to, I would see a naturopath for guidance. But you can do all of this by yourself too.

REPLYSHAREREPORT
Was this helpful?      1  




Viewing page 1 of 4     Reply

Next Page >


More Discussions:

Bentyl. Causing nausea and nervousness in system.
Are the side affects causing these systems. I have no abdominal pain just nervousness throughout digestive tract and nau... 3 replies
Itopride (Ganaton): Coping with Nervous System Side-Effects
After a year of severe nausea, bloating and GI discomfort, I was diagnosed with Gastroparesis (delayed stomach emptying.... 1 reply
will taking somazina 500 affect my nervous system
I have been prescribed to take somazina 500....I take 20mg medicine for blood pressure...Will somazina make my blood pre... 2 replies
i hve antral gstritis dctor gve me pantocid dsr twice n sucral thrice daily im tking ths from last 3 months ive prblem like nervousness sweating hand
i hve antral gstritis dctor gve me pantocid dsr twice n sucral thrice daily im tking ths from last 3 months ive prblem l...
Damaged receptors from chemo
Long story short I had mega dose chemo (pen inj. & capsules) daily for 365 days. Almost killed me but afterwards whe... 2 replies
Damage To Kidneys And Liver From Acetominaphen With Codeine
I am a Canadian resident in Costa Rica since 1984. I have a lot of med. problems. No thyroid (papillary carsinoma), ACFA... 1 reply
Neurological damage from Cipro?
I took Cipro for a UTI and within 24 hrs of starting it began to have issues with breathing and energy and balance. Afte... 15 replies
have i caused damage from taking 30 pills of tramadol per day at 100mg pill
I am having problems with my kidney And Liver.... I was taking a super large around of tramadol.... I too usually 30 Or ... 4 replies
recovering from chantix damage
My boyfriend of 2 years started took Chantix for 6 weeks but has been off it for 2 weeks now. I asked him to quit becaus... 1 reply
Permanent brain damage from short-term use of Xanax?
In the past I have been prescribed .25 mg alprazolam (Xanax) to take as needed. I would take about one a month. I am 46 ... 4 replies


Post a Reply

No registration needed.
Simply fill out the form below.

 *

 *


 Optional, stays hidden.
Get notified when a reply is posted here.




4) Text Verification: *
Prevents SPAM.

Click here to show the question



This form will be submitted securely


TRUSTe

Discussion Thread Guidelines: Any participation in the discussion threads signifies your agreement with the Terms of Use and Privacy Policy. (1) Act civilized and be respectful towards others. No profanity, vulgarity or lewd / suggestive content is allowed. (2) Posts encouraging, facilitating, or seeking advice about the abuse of medications or other substances are prohibited. (3) Personal contact information (such as telephone numbers, email addresses, etc) is not allowed to appear on our discussion threads. (4) We do not allow our forums to be used for buying, selling, trading, or for the promotion of a product or service. (5) Posting external links to other web sites is not allowed without our prior approval. (6) We reserve the right to edit or remove content which we find objectionable to the community at our sole discretion.


Note: All times displayed are GMT - 7.

This information has been independently compiled and is for informational purposes only. It is not intended to be a substitute for medical advice from a qualified healthcare professional; nor is it intended to diagnose, treat, cure or prevent any disease. For more details please see the Medical Disclaimer. This page was last updated on 15 February 2019.

We are committed to your privacy.

Copyright © 2005-2019 All Rights Reserved. MedsChat® is a registered trademark of Limelight Innovations L.L.C. 9888 W Belleview Ave #5000, Denver, CO, 80123, USA