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Biggest Mistake of My Life

The day I started treatment with Epclusa was the worst day of my life. I found out I had Hep C in 2010. I’ve had it since the early ’80’s. Lucky me I developed cirrhosis. Within 3 weeks of starting treatment with Epclusa, I had every single side effect that was mentioned on the Gilead website as well as the one side effect I would like to warn everyone about who may be considering this drug. It rots your teeth! They mention that you may get dry mouth or a metallic taste but the never share the fact that this drug will rot your teeth. At the age of 30 my mother got her dentures. I was lucky, I didn’t get mine until I was 50. I have 2 teeth that serve as an anchor for my lower denture. My dentist always warned me to take care of these 2 teeth because without them, dentures are hard to secure. Within a few weeks of treatment I noticed massive decay of my teeth. I didn’t pick up on the reason at that moment. Other side effects I endured were insomnia (I went without sleep for 3 weeks straight), overwhelming depression, lose of appetite (I never had 1 meal during these first 3 weeks) and fatigue. After 4 weeks on these killer pills, I stopped. According to my blood tests I was virus free (called a rapid responder). My doctor told me that these results would not last. I stopped Epclusa on 2/8/17 and I haven’t gotten over the side effects as of today 3/12/17. If I do anything, I want to warn anyone who is contemplating Epclusa to know that if you chose this drug, your teeth and oral health are in grave danger. I only wish that I had known this before I used this drug. It was quite by accident that I uncovered this deadly knowledge. It’s not something that Gilead wants you to know. I don’t know when or if ever I will be rid of these other horrible side effects, I don’t feel very hopeful. Hep C never made me feel as terrible as I feel now. I used to think that being rid of Hep C would lengthen my life, now I don’t even care. Epclusa ruined my life. I just hope that this message will spare at least one Hep C patient whose oral health is already in jeopardy. Stupid me. I really thought that I had performed my due diligence in researching Epclusa, boy was I wrong. Beware my fellow hep C patients, I wish you all the very best.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The HepatitisC.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Cosmicat
    4 months ago

    I understand how you feel , after two weeks I am having a lot of side effects, nausea, light sensitivity, extreme bone and joint pain especially the lower back, headache almost constant today, muscle spasms in left groin and groin pain on both sides muscle pains in the whole body, ears loud sounds like cicada, very weak shaky, I felt very good the first two weeks then bam like I was hit with a brick, pain started two days ago severe pain in the bones and joints and back then it rolled on to the other symptoms today worse than yesterday but I am still believing it will get better because I have no choice but to take it, extreme coldness to extreme heat, fatigue, it’s hard for me to function or even take care of my dog today and yesterday I pray it gets better

  • jdh888
    5 months ago

    I’m so sorry to read your story x

  • Davoe
    8 months ago

    Im on week 5 epclusa ,side effects arnt to bad fatigue heartburn depression ect im geno 3 65yrs old ,my liver nurse has told me no more blood tests will be done until 4 weeks after treatment ,this does not sound right to me just in case im a no responder ,i dont really like the drug and if i found out it wasnt working i would stop treatment before i have any unwanted symptoms ,i have copd emphasemia treatment does not do my breathing much good ,but if treatment working i will keep doing it.just would like to hear treatment is working..thanks.

  • Davoe
    9 months ago

    Day 5 of epclusa felt ok till now ,i have loud ringing in my ears that wont go away ,i rang the liver clinic that recommended i do tx and liver nurse said she had never heard of ringing in ears being side effect of epclusa mmm,i found this to be a bit strange as just about every thing i read about epclusa side effects mentions ringing in ears.

  • Davoe
    10 months ago

    Wow thanks for your message,im suppose to start treatment next week im 65yrs old geno 3 dont feel sick from hcv yet ultra sound clear so far im F1 fibroscan 7.2 recently diagnosed copd .the nurse at clinic assured me you wont feel a thing maube headacke mmm why do they say that iv read heaps.of bad reports ,i have VL 20 mill yeah scared me but they said its nothing i dont know iv had the flu vaccine the strong one for over 65yr olds been told it will increase VL heaps ,they told me id better do tx as my viral load had.gone up but i found out flu vacc could be the reason i hope it is ,i dont wanna start tx and feel sick for rest of my life how ever long that is ,i prob had the viras since the 70s .anyway hope you are feeling bit better please let me know hpw you are going thanks.

  • How4me
    2 years ago

    I have been diagnosed back in 94 with chronic hep c went thru the interferon, ribaviron treatments for a couple years back then (1996-1999, 2002 ), non responsive genotype 1a mild to medium damage after 2 biopsys in the earler 2000 and 2007 2 out of 4 in scarring and function fatty.. etc,, now i was just diagnosis with a 14.7 score (fiber scan) start of stage 4 damage and scarring just at the brink of chirosis, and going to be starting 12 week regiment of Epclusa,, without ribavirin vs the harvoni as the doctors say its a cousin of harvoni. Thanks for the input on Epclusa
    i joined hepatitisc.net to join the community, yet is see that there is really not frequent posts and replys for such a active popular disease and community .

  • jdh888
    5 months ago

    Yes I have observed the same? This site seems pretty dormant

  • CaseyH moderator
    2 years ago

    Hi How4me!

    Thanks for taking the time to share with us! I’m so sorry to read that this has been such a long and grueling journey for you, and about all you’ve endured. You are a true fighter. I sincerely hope the Epclusa is helpful, and I hope you’ll share with us how treatment is going!
    As far as the last part of your comment goes, while not every post has lots of comments, the content of the comments and quality of our community members are truly second to none. We also have a Facebook page you can join as well, that has more opportunities to engage with others, as well content updates. You can find this by searching HepatitsC.net on Facebook, or following this link: https://www.facebook.com/HepatitisCDotNet/
    We’re so grateful to have you in our community, and hope you will find a home here!

    Best, Casey (HepatitisC.net Team)

  • Cozmo author
    2 years ago

    I wish you all the best with your treatment. People don’t really seem to be talking much about Epclusa. Everything I found out I discovered quite by accident. I hope that the side effects are manageable for you and that you come out the other end cured of Hep C. I’m still not sleeping.

  • CaseyH moderator
    2 years ago

    Wow, Cozmo! What a story! Thank you for taking the time to share all of that with our community. We’re so grateful to have you here, and to read about your experiences. I’m so sorry to hear you have had to endure, and are still enduring, all of this alongside your treatment. Different treatments tend to affect individuals differently, based on a variety of factors. Because of this, we like to note that it’s important for community members to talk with their healthcare provider about any medications, lifestyle changes, or treatments ahead of time, to determine what’s best for their specific situation. However, I’m so incredibly sorry to hear that this was he experience you had, and I sincerely hope you and your healthcare provider are able to come up with a new plan of action in the near future! Please keep us posted, we’re here for you!

    Best,
    Casey (HepatiitsC.net Team)

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