Harvoni Side Effects (Page 24)
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I have been taking Harvoni for 3 months now and am having nerve pain in my legs and lower back pain. Is anyone else taking Harvoni having any of these same side effects as me? Please help if you are able. Thank you

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@Carol, I took klonopin for many years for sleep. In the beginning, it seemed like a mild harmless drug. Eventually, my tolerance for it increased as well as anxiety levels. I found out that it is not a harmless little drug and it was hell quitting it. I went to a psychiatrist who had me taking anticonvulsants to avoid possible seizures. It is also metabolized in the liver. I suggest that you stop taking it, under guidance of an M.D., to slow your cirrhosis progression. I have never been one to take prescription drugs or even over the counter drugs, but insomnia can drive a person to take just about anything. I haven't taken a prescription drug for over 7 years and only take Advil about 3 times a year. Although I'm strict about those, I still drank socially for years, even though I was cognitively aware of the risk. Eventually, even a glass of wine made me feel sick and I could even have a hangover from just one glass. I haven't had a drink in about 6 months now, and feel really good. Ultrasound results a couple of weeks ago show no obvious issues, no cirrhosis or enlargement, homogenous echo texture, no masses. I am not sure how detailed an ultrasound is for level of fibrosis, though. My dr. appointment is next week, so will find out more then. If my fibrosis is at, say, a 2 or less, I will definitely wait longer for drug treatment. If it is worse, the decision will be a bit more difficult, but I will still probably focus on restoration of liver health. I think my diet, avoidance of drugs, taking natural herbal supplements (well researched), exercise, etc. have all kept my liver semi-healthy in spite of the drinking.

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Good Morning,

I'm following this thread still. I HAVE taken Harvoni and completed a 3 month dose on Jan 25, 2016. I worked 40 hours a week the entire time. I was kind of scared initially, but took it anyway as I had developed some cirrhosis. The goal is to cure the Hep C so I could stop continuous damage to my liver. Side effects involved weird short term headache and fatigue most afternoons. I took the pill at bedtime along with klonopin, a med I've used for anxiety for years. I also noticed my vision got fuzzy sometimes. I spent most days just going to bed early. I drank allot of water as that seemed reasonable. I did gain like 8 pounds, which also seemed reasonable as I didn't eat well and had been quite thin for years, due to having Hep. So it's been nearly 4 months since I've finished Harvoni. I've had many tests to monitor effects from liver damage. I'm good so far. I had been so concerned with having Hep C that I did not understand what cirrhosis was doing to me. Yes you can live with Hep C. I have for 35 years. No problem. Apparently I can't live very long or well with cirrhosis however. So I felt the need to stop the Hep C under those conditions. I understand the fear of this drug. But people with HIV have been taking similar types of drugs for years for that virus. We don't hear much about that anymore. At this time, I'm still dealing with a sinus and allergy problem, which seems to be more of a problem currently. But it is related to a deviated septum and allergy I've always had. Some people haven't been happy with Harvoni and suffered ill effects. Others have no problem at all. I'd say it's like most meds, some people can take it with minimal sides, and some can't. Like I can't deal with Prednisone or Sudafed. They make me crazy sick. Most people have no trouble with theses meds. The idea is to stop the progression of liver damage and cirrhosis. So far, there is not a medical treatment or any cure for cirrhosis. That will kill a person, in a bad way. No doubt. If you're not developing cirrhosis yet, you are good and have time to consider options. Have a good day!

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SHERRI: Thank you for all the great information. I also do a lot of research on medical issues, and I have found different supplements and therapies online as well. Himalaya Liver Care is a good supplement that has been recommended to me by a few different sources, and is especially recommended for proper enzyme levels. And most people know about milk thistle supps. I am just recently learning about Reishi mushroom and will most likely adding it to my supplements.

FOURLOCOS: I believe you said that you have already done the Harvoni treatment and are now free of the HepC virus, correct? Did you, or are you having any significant side effects from this treatment? This has been a pretty long/active thread, so please forgive me if you have already posted your side effects and I missed it. Thanks.

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@adiP: There are quite a few sources you can find on restoring liver health, no matter how advanced the damage. Most people who have experienced success were very committed and strict about following a regimen. Taking a supplement now and then or eating the wrong foods too often will impede progress. Since I can't share links, here are a couple of ideas for your research. You can look at actual research/studies and peer reviewed articles by using the Google Scholar search engine. PubMed.gov provides a medical search engine. Commercial websites can provide information on the most recent trends, which I recommend researching further before jumping on the bandwagon. Some of these sites are alchemistlab, Healing Liver Cirrhosis (blog), and Medicinal Mushroom Info. I highly recommend looking into medicinal mushrooms. Although they have been used for thousands of years in Asian medicine, Western medicine is now learning the science behind the healing properties. They are used more extensively in Europe than in the U.S. In the U.S., they have been used in drug overdoses, toxic poisoning, and athletic performance enhancement. I brought my blood pressure down by taking Reishi supplements. Also, not all supplements are equal, so do your homework before buying. You might even look into gene therapy. I haven't done any research on it, yet, but it looks like an emerging field for liver regeneration. You can look into stem cell therapy, too. And lastly, do a Google search on "regenerative liver therapies." There is so much out there that the average doctor is not educated on. You are your best advocate and resource. I have managed to keep my viral load fairly low, as well as liver enzyme levels, through diet, exercise, and supplements to support liver and immune health. I continued to drink for many years (stupid), and still kept my levels low. Good luck, I hope I hope this helps.

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Don't believe everything you read. I don't believe that and even if so who cares every year there will be something new. I am more concerned about each individual person case by case.
Big pharma does this to pump up stock, personally I don't know of anyone that had their life saved by this drug. Read report from Spain saying ppl with advanced liver diseas died sooner when treated. This drug was intended for advanced liver disease.

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@fourlocos: I finally found a CDC report that does state that HCV is the leading infectious disease cause of death, in the U.S. Globally, it's TB, HIV, and Malaria. As boomers age, I would guess that the numbers will increase even more. Hopefully the drugs being developed will keep improving and will eventually be more safe than the ones we currently have to choose from. Then we should see the numbers drop.

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Hi Sherri.

It was on Yahoo News but it was shown all over. It was NOT a paid ad. It was about how HCV passed up HIV and others. Please search it. Not sure if I can put up a link in here. Might have been from the World Health Org people.

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@adiP, I will see if I saved any links to info on reversing liver damage on my computer. If I did, I will share it with you.

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@fourlocos, I am concerned that a headline would be so irresponsible with a statement that is not true. Where did you see this? I'm guessing it was a paid ad disguised as a news item. If you look at data from the World Health Organization (WHO) or the Center for Disease Control, you'll see that viral hepatitis of any type is not the leading icause of death by infectious disease worldwide. Tuberculosis, HIV, and Malaria are currently the top 3 causes.

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Sherri i believe that repair of damaged tissue is difficult if the damage is too far gone? If its like Man in the Moon cheese (SWISS with holes) there is minimal chance of regeneration of the tissue, if minor I think there is some chance of regeneration!!! Hoping there is a chance, that is???

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Sherri, it was a headline news story just a week ago that HCV was now the leading cause of death for all infectious diseases. I didn't just pull that out of my butt! It's neither here nor there anyway. I felt rushed through Harvoni in Dec 2014. I literally saw my liver specialist a week before and discussed trying to get approval for it. I had only found out three week prior that I even had Hep C. I am glad that it is over with and that I was successfully treated. It's been over a year now and many things I have either become used to living with and many have now disappeared. Bottom line is I didn't want to die of liver disease. A price is paid for many treatments of diseases. It's a double edged sword.

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All- I too was pushed into Harvoni by doc telling me insurance might not cover it down the road. Physically I was fine. Very minor stage one liver something. Even Dr said there was no physical down side to not take. I had some form of Hep in 1972 and bounced back in a few weeks. I quit drinking in 1986 because I had worked in the bar business for years and figured it was a good idea. So 30 years of no drinking probably spared damage.

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Yes I agree, I was told about 'Harvoni' by my doc, then in no time they are telling me I need this, a kick back from pharmas to doctors for prescribing H???
I believed all the hype, now on it, severe depression has become daily life for me, should i cease this med???

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NEWDAY: I think that is so crappy, them pressuring you like that. I have been all stressed out about not being able to afford this, and now the more I learn about it, the more I think you are right about letting sleeping dogs lie, as it were. As I stated, I am not any kind of big drinker and methadone is the only pharmaceutical I take regularly. 25% huh? I will def just wait.

That is so unethical, them putting the strong arm on you like that, guilt tripping you out with the "you should feel lucky" crap. Doctors nowadays.... seeming to be more and more of an unscrupulous bunch. And they really did push Harvoni through pretty dang quickly. Myself and a couple medical professionals I know had JUST heard about the trials, and suddenly the commercials are on the TV! Unreal.

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@ Sherri thank you. One More thing, many ppl that are being treated are still drinking and using illegal drugs. Less the. 25% od ppl with HCV die from HCV.
I was emotionally blackmailed by my doc and was told ppl in third world countries would LOVE to have access to our treatment! Imagine the guilt trip she was laying on me? Like somehow I was ungrateful.
Each situation is different and from what I see it's only a big money maker for the big pharma, the newer research from Spain as I said agrees let sleeping g dogs lie. Don't wake up the dragon that has been laying dormant for years. Once again if you are in liver failure or with stage 3 chirosis this is not going to save your life. They are finding it is shortening lives for those who are very ill. It's very strong med.
Healthy decisions is best peace and healing to all.

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@Jamie. Many newer studies have found that liver damage can be reversed, contrary to previously thought. Until American doctors are brought up to speed, we can expect to keep hearing that once the liver is damaged, we're doomed. If I were you, I'd hit the research hard and heavy to find out what you can do to improve your liver health. Look at what has worked in other countries, not just the U.S. It takes time and effort, but I'd guess that better health is important to you, as it is to all of us, and worth that extra effort.

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I know this will tick some people off, but it's merely my opinion based on all of the comments I've not only read here, but on other HCV forums, too. This is the pattern I've recognized. Those who were in good to fairly good health prior to Harvoni that are having bad side effects are very disappointed and wish they had never put it into their bodies. Then, we have people telling us that we need to suck it up and just live with the horrible effects, that it's better than letting the virus kill us. I have found that these people, the latter, for the most part, have bad health in general and are already living less than desirable lives, health wise. They are use to taking pharmaceuticals for their ailments and don't dare question the status quo. There are exceptions, of course, but generally this is the pattern I see. I am 55 and have been infected for 30+ years. I just returned from 3 days of backpacking in the mountains carrying a 30lb. pack for 15 miles. There is no way I will risk my health on a gamble with Harvoni now that I have read so many stories about leg and foot pain. I have spent years doing everything I could to keep my liver healthy and to help my immune system. I read medical journals from around the world, trying to learn about the virus as well as alternatives used in other countries. The information is out there and I feel that I owe it to my health to take the time and energy to be informed. Quality of life is most important to me, not fear of death.

To the person who said HCV is the leading cause of death by infectious disease. That is incorrect. Tuberculosis passed up HIV for first place. Also, when you're talking world, this includes millions of people living in poverty with very poor diets and unsanitary living conditions. The percent of infected Americans who die from HCV is not incredibly high. 1 to 5% are likely to die from it and women are at a lower risk than men. Lifestyle is a recurring theme when looking at risk factors of liver disease progression. If you already take prescription drugs for other ailments, you may be at greater risk if those drugs are metabolized in the liver. If you drink alcohol, don't exercise, eat a fatty diet, eat processed foods, experience a lot of stress, these all affect liver health.

I continue to thank everyone for sharing their experiences, especially since we will never hear about them from the FDA (whose board includes pharmaceutical company reps) or big pharma. You are doing the rest of us fence riders an invaluable service and possibly saving some of us some terrible suffering.

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For those who are suffering after Harvoni I wish I would have waited. I had Hep C for 30+ years and was very healthy. Not so now, although I am undetected.

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JANE: I do not know what my viral load is, only that I am HepC positive. I am an IV drug addict, over 30 years, so my veins are pretty shot. If I were to use now, I would have to go in my leg. When I have to give blood, it is a complete and total nightmare for everyone involved. I'm bleeding everywhere, the phlebotomist is frustrated, the SECOND phlebotomist they have brought in is getting stressed, they have gotten the pediatric needles out, etc. SO I don't do "blood work" any more than I absolutely have to. But I know that is the first step... And even though I was pre-med, and I am involved in medical research, I am HUGELY phobic about doctors and hospitals. It all stems from almost dying when I was 2, and being in the hospital for almost a month at that formative age. (Yes, I am in therapy) ANYWAY... I have made and subsequently cancelled my hepatology appointment a few times now. And as soon as you say "liver biopsy", I am in a cold sweat. It may seem ridiculous to some, but for me, these are real fears. So I need to man up and go get these evaluations.... Thanks again for all the info. I do feel like there is this ticking time bomb inside me that will eventually go off, but for the most part I have been basically ignoring the bomb.

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I contracted Hep C in 1983 via a blood transfusion. I had no idea that it was present until when I started to become ill from a variety of viruses. I worked in an ER and was in contact with people who were ill and my immune system wasn't working to ward off certain illness. After I was diagnosed and had a biopsy, there was some indecision among doctors about treating me with Interferon and Ribaviron. I decided to be treated and went on two separate rounds of those drugs. After the second treatment, my biopsy showed improvement because the virus wasn't present while I was on those drugs. However, I wasn't cured and the virus always reappeared. I don't think I needed to take Harvoni as soon as I did but I know that it causes liver cancer and, eventually, death. I am happy to be cured of Hep C but truly wish I would have waited until Harvoni had been around longer. I had a very hard time on Harvoni and am still suffering side effects 8 months post-treatment. I also now have Glaucoma. I don't believe that Gilead will ever post the side effects of Harvoni but I think that the newer drugs will be better. One more interesting bit of info; my hematologist who diagnosed me with Hep C told me some people can have the virus but the viral load is so low that it doesn't cause liver damage.

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