Life after Harvoni

I was diagnosed with Hep C in 1993. I know exactly how I got it. I’m a Barber and one day I shaved a man and accidentally cut him and myself at the same time. Under all the shave cream, I didn’t see the bump he had on his face. It scared me so bad that in the process, I cut myself. Shortly after the incidence occurred, I was diagnosed.

I began the Harvoni treatment in 2015. I had mild side effects of nausea and headaches. But overall, it went smoothly. After treatment, I was told I was clear of Hep C.

Now two years later, I am having so many health issues that I never had before. I am tired all the time and just want to sleep my days away. My lymph nodes keep swelling up, causing me extreme pain throughout my body. At times, the pain is so bad that I can’t move my arm. I have had ultra sounds, MRI’s, mammograms and X-Rays but so far nothing has been detected. Next week I have more test scheduled and another ultra sound.

Before treatment, I was symptom free, even though I was considered chronic stage 1. I was being considered for a liver transplant due to my enzyme levels being so out of whack.

It’s crazy how I was consider so bad before treatment but I felt pretty good ~ now I’m considered “cured” but feel so bad.

I am very petite and eat healthy. I don’t drink or smoke, though I did in the past, prior to diagnosis.
At this time, life doesn’t feel so promising, being as sick as I am. I wish the cure brought about a more rewarding future.

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

View Comments (19)
  • annabanana
    2 months ago

    How are you doing now? I am supposed to start Harvoni in a week and have been scared to go forward with treatment. Many people seem to be so much worse off after treatment.

  • kjjkin author
    2 months ago

    It’s been some time since I posted that. Most of the symptoms I mentioned have subsided and I’m feeling more normal that I did back then.
    Oddly, the things my body needs has a way of finding it’s way to me. I stumbled on LED light therapy purely by accident and for a short time became a distributor for this particular company. Which, in turn meant that I was able to give myself treatments. Almost instantly, I began to feel better.
    I started researching it and learned that it treats the mitrochodria, which is a cell that houses the enzyne responsible for delivering energy (ATP) to our bodies.
    I believe the harvoni treatment might have affected the mitrochodria in my body. The led light treatments stimulated the mitrochodria out of hybernation and activated it.
    All I know, is I feel alive again. My hair is still thinning badly, but my skin is improving. After treatment I had developed eczema but the lights have helped heal that condition as well.

  • kjjkin author
    2 months ago

    Please forgive the typo’s ~ It’s mitochondria. There’s no way to edit my post.

  • ON-Canada
    12 months ago

    You are telling my story I was on 12 weeks of harvoni in 2015 and it’s now 2018. I was working and had lots of energy prior to harvoni. Within one month of our Boney I was so fatigued I couldn’t even lift my spoon to my face to eat. I’m a little better now with energy but still cannot work because of the fatigue and all the other symptoms brain fog blurred vision confusion memory loss… I am almost convinced that harvoni and Hep C caused mitochondria damage and that’s why the fatigue in the first place and the continued fatigue now. My doctor says is fibromyalgia and post-traumatic stress and will not send me for mitochondria testing he sent me for everything else MRI immunologist hematologist neurologist… I started taking ubiquinol and magnesium citrate and within one month the internal vibrations I suffered with were reduced about 80%. In Ontario your family doctor cannot send you for mitochondria testing it has to come from a specialist. My liver specialist says everybody’s fatigue and to get over it. So I’m now going to take some other supplements that are supposed to support the mitochondria thank you for your message I needed to hear that I thought I was going crazy

  • kjjkin author
    2 months ago

    Oh my! And you are telling mine. Yes, indeed the mitochondria is what suffers from the treatment. I need to learn more about suppliments that help rejuvenate the mitochondria. I used LED Light therapy treatments and it did an amazing job stimulating recovery of the mitochondria.

  • Sara Hayes moderator
    1 year ago

    Hi @pixi – We’ll be thinking of you and hoping your appointment goes well and you finally get some answers! I’m so glad you’re advocating for yourself! It isn’t easy, but it’s important! Wishing you all the best, Sara (HepatitisC.net team member)

  • Sara Hayes moderator
    1 year ago

    Hi @kjjkin – thanks so much for the update! I’m so thrilled to hear that your pain has improved! That’s great news! I know that any big changes to diet can be really tough, but it sounds like you’re making great progressive!! I hope that you continue to feel better with each day! Thanks again for being a part of our community! All the best, Sara (HepatitisC.net team member)

  • kjjkin author
    1 year ago

    Update on last post “Life after Harvoni”.
    As odd as my symptoms were, when I posted back in October ~ I endured many test, all came back negative.
    The doctors could not explain what was wrong with me. I was given a new family physician because the last relocated. She is probably one of the better doctors I’ve had, outside of my liver specialist, whom in my opinion is the best.

    Anyway she started suspecting that I had diverticulitis or crohn’s disease.

    I immediately changed my diet and eliminated gluten, as well as, other irritants. Then one day I woke up, the swelling in my lymph nodes subsided and the pain was better.

    I also took biotin which cleared up the horrible psoriasis that I had developed, echinacea and drank apple cider vinegar mixed with honey, lemon and cinnamon in warm water. I can happily report, the old me is coming back.

    Maybe it had nothing to do with the harvoni treatment after all. I have since slipped up a few times and had gluten, when a cupcake was calling my name, but I pay for it in how I feel afterwards.

    Thank you for all your well wishes.

  • kjjkin author
    2 months ago

    An update to my update –
    Besides changing my diet and avoiding gluten. I also started doing LED Light Therapy treatment. I believe this had a major impact on my recovery as I mentioned above.

  • Sara Hayes moderator
    1 year ago

    Hi @pixi – I’m so sorry that you’re experiencing this confusion with your healthcare team. It can be so frustrating when it feels like no one is listening. Have you been able to get any answers?

    One of our contributors has written about a similar experience, where she felt like everyone thought she was crazy. I’ve included it here if you’re interested: https://hepatitisc.net/living/im-not-crazy/

    Please check back and let us know how you’re doing! Best of luck as you finish treatment! Warmly, Sara (HepatitisC.net team member)

  • Pixi
    1 year ago

    Thank you for replying! And thank you for your kindness! My ears DO burn, but not constantly, it’s like it comes and goes and about 2 weeks ago my left ear became completely blocked for about 3 days… It seems there’s a new strange symptom everyday! I’ll definitely check that link out, and tomorrow I have a quick visit with yet ANOTHER doctor for some medication I take for something other than the Hep C… Last time he wouldn’t discuss any of my symptoms with me (even though he is a GP, in the same office as my doctor lol)… But I don’t think he can morally ignore these symptoms… If I don’t get help from him, I’m going to go to the ER, and see if they can help… It’s like since so many lymph nodes are swollen it’s putting pressure everywhere! Even my chest hurts… Thanks so much!

  • kjjkin author
    1 year ago

    Your symptoms are exactly like mine were. My left ear did the same thing. I had the horrible chest pains as well and many trips to the cardiologist.
    I hope you find the answers.
    So far the diet for IBS or celiac disease and crohn’s disease is resolving all my issues. No more chest pains and all other symptoms are going away.

  • Pixi
    1 year ago

    I was diagnosed 10-28-17, and I’ve just began treatment (3 weeks ago)… Iin August, I woke up with INCREDIBLE chest pain (I thought I was going to have a heart attack)… I’m 28 years old, petite, and I’m active. I also eat mostly organic/raw foods… So, naturally the doctors brushed aside the chest pain and started running tests. The HCV test came back as reactive… So, I started listing all of my off the wall symptoms to the hepatologist and she told me it was very unlikely that these symptoms were caused by the Hep C… The symptoms are so off the wall and constant that I honestly would have a hard time believing someone had they told me, so I’m still searching for answers… The doctors are treating me like I’m insane! My lymph nodes are also VERY swollen… Incredible stomach pain, jaw pain, chest pain (not nearly as bad as it was in August), a rash on my face, and my fingers turn blue halfway up to the knuckle … I feel sick, often, as you stated you do! Right now the GP is blaming everything on the HCV, but the hepatologist says it’s not! They aren’t communicating, won’t listen to me, and so I’m lying around literally feeling like I’m on the brink of death … If you get answers, I would love to hear about the diagnosis? Lots of love and positive vibes to you!

  • highmaintenance
    1 year ago

    I had a transplant on 11/12/2009, a result of hepC damages to my liver. Had full blown chirous and my liver just quit after being in the hospital for 10 days. I received a 78 1/2 year old female liver, I was only 50.
    About two years ago I got into a drug trial with resources at Baylor Medical University Center& the drug was a compound drug that’s now harvoni. The trial went well & I was SVR in less than 3mos. After the “cure” I started loosing my teeth, gums receding & now I sport a full set of dentures. I take autoimmune anti-reject pills & they hurt my protein levels & im exhausted most always. I had cihirous on my new liver from the virus & supposingly regaining about 15 – 30% of new growth. But yes I’m spent most always & still have “bad” days when I won’t budge out of bed. I’m curious as to others that have taken Harvoni & if they’re still experiencing brain fog & tiredness. Hope your thyroid doesn’t keep bothering you & the pain you have, that NOBODY can see.
    James

  • kjjkin author
    2 months ago

    James, thank you for sharing your story. Sorry it took so long for me to respond but I lost my login info and just recently found it. I hope you are feeling better all this time later. Like you, there’s good days and stay in bed days.

  • CaseyH moderator
    1 year ago

    Hi James,

    I’m so sorry to hear that you have been enduring all of this since receiving treatment. It’s hard to pinpoint why exactly these issues started happening, and for how long they will stay. Many of our community members report having bad days sometimes, and that is perfectly normal and okay. Please remember though, if you ever feel like that, you can reach out to us for extra support and a friend to chat with. We’re here to help you through everything! Hopefully, others can chime in on whether or not they’re still experiencing some of these symptoms, including brain fog and tiredness as well!

    Please keep us posted! We’re grateful to have you here, and are sending positive thoughts your way! -Casey, HepatitisC.net Team

  • Ulfap
    1 year ago

    Im so sorry to hear of your health issues. It is so hard to focus on anything else when sick. Im completing treatment with harvoni now. My test results are very encouraging. I also found out i have cirrhosis and gall stones.
    I am hoping to regain my high energy and happy attitude.
    Maybe your ills are caused by something other than hepc/treatment?
    I hope you get answers and relief soon.

  • CaseyH moderator
    1 year ago

    Hi Ulfap!

    Glad to hear that you’re completing treatment now and that your results so far have been good! I hope this has continued! I’m sorry to hear about the cirrhosis and gall stones though! I’m also hoping you regain your energy and happy attitude! Please keep us posted! We’ll be sending positive thoughts and gentle hugs your way!

    -Casey, HepatitisC.net Team

  • CaseyH moderator
    1 year ago

    Hi kjjkin,

    Thank you for taking the time to share your story with us. I’m so glad to hear that you’ve been cured of HepC, but I am so truly sorry to read about the struggles you’ve had to face since. We have had others in the community report that the fatigue from the virus and/or treatment can take a long time to go away. If this is something you’re struggling with, it may be a good idea to post a question about it in our Q&A section to see if anyone else has had a similar experience. In the meantime, I’ve found an article on combatting fatigue that you may be interested in, https://hepatitisc.net/living/fighting-fatigue-fun/ You may have already tried some of the tips in the article, but I thought it may be worth the share!

    I’m also so sorry to hear about your lymph nodes and the pain that’s coming along with their swelling. It sounds like you’re making a good decisions by undergoing testing and imaging for this issue. Please keep us posted on how this mystery is unfolding!

    It is so frustrating to be cured but not “feel” cured, and I’m so sorry this is happening to you. Especially considering you’re taking good care of yourself and making healthy decisions. I know it’s hard, but please know you can rely on us and our community for support. We don’t want you feeling so down, and want to be here for you! Please keep us updated on everything, and we’re so glad you’ve taken the time to share your journey with us!

    Sending warm wishes your way! -Casey, HepatitisC.net Team

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