Harvoni Side Effects (Page 25)
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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, JAMIE: Thank you for the information. I do think I will wait on trying to get on this Harvoni. I am not having symptoms, at least I don't think I am. Just fatigue, but that can be from other things, like my fibromyalgia and the fact that I need to lose 30 pounds and get back into better shape. No yellow jaundice eyes, or bloating or ??? Like many have said on here, I have had this for 14 years or so, so it isn't going to kill me TOMORROW. And hearing about the various problems people are having... besides the fact that these doctors don't seem to be all that open about the side effects, gives me pause. I am going to be working with Dr. Everson of Colorado University Hospital. He is the premier hepatologist in the state. So we shall see. He is also one of the doctors that was doing the clinical trials of these new DAA drugs. So hopefully he will be a little more open-minded about all of this.Thank you for your help, everyone. I am usually on these threads GIVING advice, so I appreciate being GIVEN advice on this.

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NEWDAY: I am simply asking what the signs and symptoms are of active HepC. For any of you that have actually had symptoms of HepC, what did you notice going on in your body. That's all. I don't have a "point". Just asking for information.

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@ Jamie thanks for making it clear. We all know it's a slow acting virus. Jamie is right Harvoni was created for those with liver damage or with chirosis. Due to the sky high price they are putting everyone obit. Like I said Google reports from Spain that said Harvoni often does more harm then good.

We are only sharing here, if you had something 20,30,40 yrs why do these docs RUSH is to treatment? My med's were ordered and delivered without my consent!! Due your due diligence give it time another 8 months or year will not matter.
Thanks for sharing and best wishes for health and peace in your long life ahead .

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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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Jane, it is normal to feel sorry for oneself. But i say get over it. if u are worried about addiction or pain relief, that is your call. i don't feel sorry for people that can get relief but refuse to take pain meds. i don't understand. I am on Methadone 10 mg 3x a day. i dont take any pain meds for the last 3 days so i don't get addicted and i have been doing it for years. no one wants to feel under some else power that controls your life. We have meds to help. but that is only if u want it. just because u have to take a drug everyday doesnt mean really anything. Aren't there other drugs that u HAVE to take everyday for the rest of your life. Whats the difference, u still HAVE to take it for the rest of your life. If the meds are out there. use them for a LIFE otherwise don't complain unless u are going to fight for your self. No one love us more then ourselves to take it. difference is what? one is an opiate and other is not but u still have to take the drugs needed to live. Addiction of the mind is what is the problem. Take drugs to have a quality of life. I know i want to enjoy what time i have, i am not going to have labels from me getting that happiness. it up to YOU to do what is right for u. Just because it is against the law (norms) doesn't mean it is wrong!!! I tell you, pain meds work; use it.

Change of subject. if you need some relief from pain in the feet when u sleep. i know it kept me up because of the pain. wear socks. that helps. I know the sheets would rub against my toes and cause pain but taking my pain meds helps a lot and i am able to sleep. If you are staying awake from the pain u must get help from your DR for pain relief. Once you control the pain u can live. I have been awake of 2 days from pain and was going out of my mind. we need sleep. take pain meds and u can drop the other drugs that they gave you. like Xanax etc. once you get your sleep it will help with the rest of any other issues you have. Nobody is wrong here or judgmental but you should hear it from one of our own. Sleep and pain free is what i strive for. and of course, eating but that is for another day. bye God bless. U dont get what u need from your Dr. find another one. Compassion is what u are looking for in your Dr.. Feel free to write me back if you need someone on your side.

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Hi again people! I just came back from an upper GI procedure and don't have any signs of varies, which can occur once a person has cirrhosis. I'm 55 year old female. I've had hep C for about 35 years due to drug use. Never treated it because the options were bad. I really never had pain or noticeable symptoms until past 2 years I started getting very tired. So I took the Harvoni for 3 months with minimal sides. Just a headache and some fatigue. I went to work everyday. I am now totally free from the hep c virus at 14 weeks post treatment. I have been left with fibrosis and some cirrhosis, which I'm trying to recover from, to whatever extent I can.

My Dr. says monitoring is the key treatment to avoid cancer and internal bleeding from the cirrhosis. So hes done an ultrasound on liver and surrounding veins and organs and now the upper GI. So I have compensated cirrhosis. I was starting to feel great until I developed a chronic sinus infection. Antibiotics aren't doing much. The ENT Dr says I need to have sinus surgery to fix this. I think I've had sinusitis for months or even years but paid little attention to it because I was used to feeling tired from the hep c and I'm kind of allergic to my cats anyway.

What I'm getting at is that hep c seems to mask other medical problems in that you may be used to feeling bad and often can't tell why and just assume it's hepatitis. Once they cure that, then other issues become more noticeable. I thought I'd feel great after I was cured of hep c. Nope. I have liver damage to recover from. I apparently have chronic sinusitis that's been sucking my energy for who knows how long. I thought the effects I was feeling from this sinus problem were actually side effects from taking Harvoni. I couldn't recognize why I felt bad.

I'm my case, I took Harvoni successfully, have recovered from taking it, and am now fixing other health concerns I didn't realize were a problem. Yep Harvoni is a strong and weird drug. But it works. I just kept remembering how I got in this mess in the first place. I had no problem ingesting strong and weird drugs that did all kinds of damage, when I was young. So why should I be more concerned now over being cured? That's my thoughts and experience this far.

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@ Jane thank you. KK I am not sure what your point is. Where are you going with this?

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NEWDAY: These are the symptoms to look out for in HepC? Thanks.

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Jamie - These people who are having side effects are not feeling sorry for themselves. They are frustrated and sometimes feel desperate for some information . The last thing they need is to start on pain meds and take the chance of becoming addicted. Pain meds are hard on the liver. I'm glad you are happy with Harvoni but please don't criticize others who want and need information.

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I think you would know it of you had them. High blood pressure, nerve or joint pain worse then before. Insomnia. Weak, tired, I have brain fog sometimes I feel like my short term memory got worse I know it did when o was on it. Light sensitivity.
Each person is different of your blood labs are good and you feel ok then you were one of the lucky ones I guess. Just be happy!

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I had 2 types of side effects, headache for the first 5 mins then very thirsty. I had foot pain, half the foot to the toes that hurts. but i had that before Harvoni. Still hurts but not sharp. i am on methadone. but it is all the time. it could be gout but too many of Harvoni users are having that side effect so there must be something that is true. Keep reporting side effects. Remember u might do more damage to the liver taking harder substances to control your foot pain. u stop one thing but make the other worse. and back pain, I had it before but i have had hepc for 40 yrs is what they tell me. i learned 10 yrs ago on a blood test that i had it. surprise! back can be disc for one thing and they used surgical glue in between the disc to lift it. 3 disc and no pain. the old way i had still hurts but that wasn't done with glue just a knife..I wouldnt take new meds cause they all have side effects to the liver. I try not to overdue my liver. no complex foods or meds. shell fish i try to stay away from. Don't over work your liver. Most new meds' side effects are deathly scary. Who wants to be a test subject. Good luck to all.

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SNOOTS: I certainly don't THINK I'm having symptoms, but I don't even know what those symptoms would be. Anyone???

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Since you don't have symptoms now you do have sometime to wait for a newer drug. Maybe you should consider it. I would want to know my liver status before deciding that though. I had Hep C for 40 years and never knew until one month before starting Harvoni. I was having cold and cold hit me every month and really bad pain in my upper right quadrant that made it hard to roll over at night in bed. I mean bad pain which led me to my doctor who then ran diagnostics and found the Hep C. Looking back I had symptoms for years and thought it was just getting older. I am 59 now. For many years if I bent over a certain way to pull on my boots I had horrid sharp pain in the chest area but had no idea what it was from. It was liver inflammation.

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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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Had many side effects from harvoni now 4 months post treatment and still have weakness insomnia extremely dry skin hair losss... Really wish I had not taken this medicine as I was extremely active and healthy before.. Now I can barely get the work indeed to done.
I was hiking around 10 miles a day and now am lucky if I can do 4.... Had been biking around 30 or more and now am tired after 8 or 10..i was not informed of all the potential side effects or I would have not even considered this treatment as I was not experiencing any problems before taking it.

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You know, I'm not sure what to do here. I mean, my insurance sucks, I have made phone call after phone call to try to get this med, and I certainly don't have thousands of dollars to buy it. But if I DO get the meds, should I even take it? I certainly would love to be cured of the virus.

I have had Hep C for about 14 years, give or take a year. I am 47 years old and in average health other than the Hep C. I don't take any medication on a regular basis except tablet methadone daily. I have migraine meds and nausea meds that I take only as needed, anywhere from once a week to once a month. But no heart probs, high cholesterol or high BP, etc. I have never had any liver symptoms and have no idea what my viral levels are with the Hep C. I don't smoke cigs, and am a very light drinker. Like a glass of wine if I go out to dinner, or a beer when I'm out fishing w friends. It has been literally YEARS since I had more than two drinks in a day, and I have alcohol MAYBE once every couple weeks or so. I eat healthy and fairly "clean". I also take milk thistle and Himalaya Liver Formula, as well as charcoal cleanses once a month or so. So I don't think I live any type of "high risk" lifestyle when it comes to my liver.

What are the signs and symptoms that any of you first had to let you know that the Hep C was getting serious? I know people can live years with Hep without symptoms, so what did you notice?

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I am sorry that some of the pt that have taken Harvoni and have side effects but I am glad that it is out their bodies and working to heal. I for one am happy to be above ground with some side effects. really, what drugs dont have side effects.. I would rather have back and foot pain then be dead. so i say suck it up and TELL your DR what is happening to you when you take Harvoni. But get mad when they don't listen. MY mother years ago always said the DR talk down to her and treated her like a child and basically said it in your mind. i never ask for something from the Dr but i tell them what works for me and then if they give me s***, i say " why don't you want me to be pain free?" all you want is your quality of life sucks unless things change. I recommend pain meds all the time for us that have had hep c. It will even change how u look on life once u control the pain. I have had triple bypass, 4 disc operations, 10 days in a coma, and need other operations but i have other issue. don't feel sorry but buck up and deal with it and enjoy your life. Good luck to all but TELL them what u need and not ask. i am 60 and had hep c for 40 years, they told me 10 yrs ago my liver was like a 90 yr old. took the cure with pills and Pegasus. now that was brutal for 48 wks. that didn't work and it killed about everything in my body, so Harvoni is God send. Thank goodness they don't do it that way anymore. bye and good luck.

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Just found an article dated 4/14/16 Study finds DAAs Risky in advanced liver disease. Not sure if I can post link on here.

Study of 834 pts with advanced liver disease in Barcelona Spain noted DAAs (direct acting anti virals) more likely to die during treatment then if they just left it alone.
Results showed pts with very advanced liver disease ( whom this med was pushed at originally) may not obtain benefits from these treatments.

Now if we could get the USA to jump on board instead of worrying about big pharma and the stock market.

I am sure you can google the article titled DAAs risky in advanced liver disease. Sometimes it's just not smart to poke the hornets nest.

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@liba thank you for sharing although it was sad news. I would guess your Doc told you there was no correlation between the the med's or nothing on record. That's a yet let's make sure we report all side 3 ways, online and in paper. You will receive in the mail a letter verifying for your records that your complaint was noted.

I think that somehow this med can or does increase inflammation in other parts of our body, hence joint pain etc. I remember the second day I was imon the med I could hardly get on a pair of shoes and my hands were swollen only thing different t was this med. why do you have to go back on it did you relapse or discontinue treatment? After what you just said would you consider another round of treatment? I would second think that, now with your heart issue. That seems to be the main complaint heart and high b/p with nerve joint damage.
Again let's keep the thread moving. Agree if the docs would stop rocking a boat but someone has to be a Guinea pig or have to test this on? Why not us? Thoughts and prayers go out to all for healing.

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Thank you all for the information that is being shared...I am now on heart medication and have hand b and joint b pain since doing the treatment. ...if I had it to do all over again and had the right information I never would have done it...I had hepc for 25 years and as soon as I found out I had it I changed my life style....all was good...I pray the fda does a more intense study and does put warning labels on the product...any feedback would be appreciated. .lyanab

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