Harvoni Side Effects (Page 7) (Top voted first)

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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I am telling you if you are not having symptoms don't be talked into taking this medicine!!! It has changed my life completely and NOT for the better

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Guys. Harvoni stops the virus. but damage HAS been done already. It will help to a point but dont think it is the cure all. Liver damage is liver damage and u will have those effects. I am on the end scale of liver disease since i have it for 40 yrs so i have damage to the liver. cirrhosis and other things. Have the cure now feel a little more energy but i still have effects from the bad liver damage. it is a tough call. if u feel great. leave things alone. dont rock the boat as they say. I think it will give u side effects that u dont need. Drugs are getting better everyday, u might want to wait a few yrs since it is a slow acting disease. sounds like crazy talk. Harvoni stops the virus but i needed it to stop the damage so i was ripe for a new drug just to stop it from getting worst. side effects from cirrhosis and that sucks. But it wont GET worst and that is my point. a lot to think about. God Bless and good luck to us all.

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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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@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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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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Sherry I started having major pain and numbness in my hands and feet three weeks into treatment. I finished treatment 16 months ago. I am left with painful bone pain in my feet still. I have good and bad days. I am muddling along and do work. I also hike 3 miles every day. I refuse to let the rest of my life be about pain and suffering. I move along and just deal with it. Inactivity is worse than moving for sure!

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@fourlocos, I am so sorry for the pain you're experiencing. I suggest that you research both cryoglobulemia and peripheral neuropathy. There are correlations with Hep C and I suspect that Harvoni has further effects on these conditions if they were already present in the body. This is just a guess, as I haven't delved into it very much so far. An older article titled "Severe exacerbation of hepatitis C–associated vasculitic neuropathy following treatment with interferon alpha: A case report and literature review" looks at how interferon treatment may exacerbate the neuropathy. I'm wondering if Harvoni treatment stimulates the body's own production of interferon, which could possibly have similar results. Anyway, food for thought. You can also look up the term demyelination in relation to Hep C.

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Sherri, I appreciate the fact that you do so much research and post what you've learned for the sake of other members. Everyone should try to do the same for themselves before they rushing in to taking a new drug. I wish I would have known what I do now before taking Harvoni.

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Adi Parker - Yes there is potential that it will get worse.

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I've been on harvoni for 11 days... First 5 days were pain free, then the fun began... I'm having nerve pain in left leg and both arms ( from shoulder to index finger tips ) along with this is muscle pain... I sleep but wake up feeling unrested... Before taking harvoni I pretty much always felt fatigued, so I really can't tell if harvoni is adding fatigue. . I do have occasional headaches... I also find myself forgetting a lot...

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Dear Jim, If you are currently having problems with life....and many of us do....please consider NOT taking this drug. The problems we write here are true. Many of us are suffering long term problems after taking Harvoni. I have FDA reports that show thousands of reports of problems with anything from death, to hepatic failure, to respiratory fairly to renal failure, to blindness, to nerve damage, to joint pain and I could go on and on. All of our problems are true. The medical community and your doc are not. I have nothing to gain here but to possibly save you from the pain and suffering you may incur. Also the viral count, whatever it is, is not an indicator of how ill you are. This number moves up and down on a regular basis. If your liver is healthy for now, I would seriously consider NOT taking Harvoni. I wish I had never taken it. My quality of life has significantly decreased as a result.

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I have been with Hep c for over 40 years, i tried the old method of chemo killing drugs. That was bad. I have cirrhosis of the liver of a 95 year old. I have had the pains as you all have but i had them before taking harvoni. I took it and I and "cured" if that is really true for now. I am also a Vet and go to the VA for my meds. I can live with thepain but control it tht way but if I was feeling good with no liver problems that is effecting my life. Do fix something that isn't broke. Like I said if u are good with where u are in life the way u feel don't look for trouble. I know the pain is GREAT! and u will have to come to terms with that. And that means control with pain meds . Now is it worth it? that is what u have to ask. My toes hurt to the touch of the sheets if and when i can fall asleep. More like cat naps then sleeping. Pain in the back is from compression fractures of my disc. I feel for us all but you and only you can make the call. My Va hospital is Mcguire in Richmond Va and i have been there for years and have only got great health care. They are not all bad. anyway, you might have trouble getting pain meds from regular Dr but at the VA they know most Vets have injuries to their bodies and those Dr understand more then most Dr. It also seems to me that the mid states are having Dr problems on issuing pain meds out. It looks like the Tenn area is really tough to get good health care for those issues from the Harvoni. I think a lot of the Dr didn't read up on all the side effects there are. We don't make them up.. Good luck to u all. But remember Harvoni will stop the virus with the hope that the good cells will reproduce the healthy ones and hench a better liver functions. that is the goal, well it is at least mine bye

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After reading about so many people having terrible side effects, both during and after treatment, I began to fall off that fence toward the decision not to treat. Then, I considered that I might not have the opportunity to treat for free and without fighting an insurance company (VA will treat anyone with HCV regardless of liver condition). I then started to research what the drugs do and how the body responds. I got feedback from a couple md researchers with recommendations. I am now thinking about going ahead with Harvoni, but only after I've prepared my body for it. One doctor advised that I self treat for metabolic syndrome because she thinks the drugs will induce that, along with neuropathy. I'm starting a modified ketgogenic diet and also will take methylated B vitamins and a bioavailable multi mineral supplement. I already take a good multivitamin, Silymarin, alpha lipoic acid, Turkey Tail, Agarikon, and Maitake mushrooms, Omega 3 fish oil, and ground flax seeds. I don't currently have any pain issues other than shoulder from damage a couple years ago, it's off and on. I am physically active and will continue that even if I get very fatigued. I have already increased my water consumption which seems to be a huge factor during treatment. I am scared but determined. If I do, in fact, start Harvoni, I will give updates regardless, good or bad.

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In my reading today I found a condition that might be worth looking into for those of you with leg, feet, hand pain and muscle fatigue. Look up mitochondrial myopathy or also drug induced mytotoxicity. One symptom is increased creatine kinase levels. On Gilead's own report on Harvoni, increased levels of creatine kinase was a side effect that occurred in 1% of clinical trial participants. 1% sounds small, but it is definitely relevant and worth looking into.

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If you read many of the earlier posts you will see that anti-virals are notorious for playing havoc with our mitochondria, the part of the cell that regulates everything in our body. Too bad I found out about this after I took the stupid medicine. I believe that for some us, Harvoni flipped a switch and changed how our bodies function....to our detriment of good health. And yes, the doctors were all remiss in not telling us this. They HAD to know as did Gilead and the FDA. We were duped!

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That and a lot more. I have a couple of friends who have been hospitalized for much more and they cannot OR will not disclose what is wrong (that is the hospital). Myself - I am sicker NOT better. I thought it was a miracle drug. We are the Guinea Pigs AND the research rats (mine and others opinion). I can not get rid of a sinus infection or any other virus. When it lasts (I completed a 12 week dose January 17th, 2016). Have been sicker since. A mutual friend passed in February. I have chronic diarrhea, lack of energy and more. your symptoms as well. I will be contacting a lawyer for legal action suit if a case is not already started. I thought I understood and was so pleased that i might have more time with my family - especially my grandchildren...

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Female 57 when diagnosed in Nov 2014. Had it for 40 years and never knew it until I had pain in the liver area that got really bad within months. 1b, 1mil500 viral load. Did 8 weeks Dec 2014 to Feb 2015. Left with horrible hands and foot pain with nerve involvement and cramping. Joint pain everywhere. Headaches. Was not on any medication except an occasional Tylenol. Took nothing, no vitamins, nothing. 17 months of pain which isn't any better. Didn't have the problem prior to treatment.

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Stupid autocorrect. Suppose to be to fourlocos, not four locks.

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I had problems pre harvoni, triple bypass with none of the markers. No high cholesterol, no diabeties, not overwieght. Docs said it could have been from the hepc, right. Well post harvoni, i now have high cholesterol even thou i've been on a statin for 2.5 years, joint and muscle pain like crazy, brain fog, I can't think and the fatigue is awful. They told me all my problems would be solved by taking it. I am in such worse shape and feel like i've taken years off my life. going to a new doc but know convincing him the harvoni did it will be impossible.

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It is a terrible thing that they have done. Yes the drug may be a miricle for those slowly dying from the hepc but for most of us, I don't think our virus was doing the damage they tried to say it was and I seriously doubt hepc would have been the d eath of me. I feel like I'm slowly dying now and not being able to do the things I want is hard.Especially with the grandkids, they don't understand grandma does't feel good half the time. I'm still working and live alone, it's really hard but I'm searching for help and hopeful my new doc might help. It's a a clinic where they do IV infusions of different sorts for various things. I know they are popular in Europe for many things and willing to try just about anything. Problem is insurance won't pay for them but oh well if they make me feel better I'll just have to work more to pay for them. Somewhere in there I know none of this makes sense.

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