Harvoni Side Effects (Page 13) (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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REPORT

As I type I am at a lab just saw a new GI doc. They absolutely must think I am crazy or live in some false reality because they said there is NO WAY my side effects were from Harvoni. How do you think I feel?
I was an absolute basket case when I was on it, the new doc insisted that there were thousands of ppl in the trial. I said 600 he said thousands.
Now I just have to sit back and wait while the virus comes back and hope that I didn't awaken a hornets nest.
In answer to your question I would wait another year that's me. Most ppl are tolerating the drug and we are not getting honest information that I can tell you. They probably don't know, I believe they believe it.

So that's my answer do your research there is no reason to treat this today, immediately right now!!! The best that will happen is a less expensive drug will come out. I allowed the doc to pressure me to treatment, do we all want to be well? Absolutely! The question is you never know. Watch and wait that would be my suggestion I don't think there is honest reporting. Does anyone see anything that there were thousands in trial? I read just under a thousand.
Good luck keep us posted whatever you decide. It's sad because in 2 wks my virus was down to almost 0. It was 2 weeks of hell for me though.

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I concur with NewDay. Wait if you can. And your new GI is an i****. You are correct about the trials. My GI had the nerve to write to my PCP and say I am bi-polar, delusional and obsessive/compulsive because Harvoni could not be the problem. I wonder when he also got his mental health credentials?? He didn't. They are not trying to cover their rear ends by pointing the finger at our mental health. Do not stand for this!!!! Best to all.

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I had a 2 month treatment program and my blood tests are negative for Hep C. As I had posted here in the past I had some joint pain in my wrists and knees. I had increased back pain and a lot of foot pain. Also, shortness of breath.
Today is day 30 post treatment. For the last week and a half I've been feeling worse and worse. Like a slowly creeping up flu. The last 2 days have ben the worst. Tired, weak, shaky, sweaty and just out of it. Have a hard time focusing and concentrating to watch TV or read the paper. It has been coming on slowly the last few weeks but has really hit home the last 2 days. My feet have a LOT of pain in them. I thought I had dodged a bullet as my side affects during treatment were uncomfortable but bearable. No I believe 'm having the sam delayed post treatment problems others have experienced.

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Mari - I was on interferon twice. Although it was difficult, Harvoni was much, much more difficult to endure. I think this is partially due to the fact that the medical community offered me lots of support while I was Interferon and Ribaviron. They told me wha to expect and encouraged me to seek help and attention when I had problems. As we all know, most doctors offer little or no support for Harvoni patients. I understand they don't know much about the drug but I don't feel that's an excuse for their behavior when I was so sick on Harvoni. I could barely get an appointment to be seen and, when I did, I was told that Harvoni doesn't have side effects! I work in the medical field and have never witnessed or experienced anything like this before. I have had lung surgery and a myriad of illnesses but nothing compared to the six months I was on Harvoni. Further, although I wasn't cured by Interferon, the virus was not present while I was on it. This gave my liver some time to improve and that's when I was taken off of the transplant list. Yes, it reappeared after I was off interferon but the viral load never was as high as it was prior to taking interferon. I know of some people who were cured with interferon.

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new day, it wasnt for u just in general.

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I know someone else who took the full course of Harvoni and it didn't cure him. He didn't have any side effects while on Harvoni.

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I was under the impression that patients are tested 6 months post-Harvoni and then again at 1 year post-Harvoni.

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I'm not concerned; I was curious because I should go more often if that's the case. My physician said I could be tested as many times as I wished but she said it isn't necessary. After reading about the virus, etc., I'm fairly convinced that, if it undetectable at one year post-treatment, it's gone. If you want to be tested for your own reasons, that your business.

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@ Jane thank you for that info. I agree of course we would want to rid of the virus, who wouldn't. Is it fair to call something a killer if you have it over 40 yrs? Up to you, I read that only 25% of ppl die from hep C. Many ppl don't live healthy lifestyles in addition.
That said, yes I would definitely like you to share the website. When I was on it I knew I was ready for a stroke like I said my b/p was 186/118 and I am on med's used to be stable. My eyes were another issue, I thought I was going blind. Again why some ppl tolerate it well is anyone's guess. I would imagine as time goes on more ppl wil be reporting bad sides. It's treatment but intention was for ppl with bad liver disease not ppl who were stable.

Please share any and all new info on this product. Be well and best wishes to everyone who is still living with this disease. It's also not fair to say it's the # 1 killer that would be Ebola or HIV no?

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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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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 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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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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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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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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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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@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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As I write this I am sitting with an ice pack on my back unable to bend or walk. You all know I only took Harvoni for 2 wks, that's worse because I never cleared the virus. I have had chronic back pain but it was manageable. Now I spasm all night and day.

Is this from 2 wks of Harvoni? Anyone's guess and I will never find for sure as I am the new 1% that couldn't finish or tolerate treatment.
I can say that I have never felt the same, good days and bad days but the bad ones are really bad. I am back to where I was 3 years ago pain wise and have no clue what thereL cause is.

I feel all over weak, different anxious and should have never put my finger in that hornets nest. My regret is that I was unable to complete treatment and docs are making me feel guilty because of...... I don't see that Harvoni doc anymore I am losing trust in almost all docs now. It's not me I am beginning to feel like that person in the show BOTCHED. It's because I have Medicaid HMO and my docs almost punish me for it or because of it.

First year residents clueless or if they are a good reputable one I know I am the one to learn on after all it's a teaching hospital. Things have changed they used to be surpervised. Not much anymore.
Feeling pain, stressed, powerless, old.

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Yes my legs and lower back ache all the time now I am on my 7th day of Harvoni. And I am drinking lots of water

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Sherri - The doctors at the liver centers don't do the fibroscan until after you've been approved for treatment by whomever is paying for the Harvoni. The fibroscan may not show the damage that's needed to be proven before they'll ok the Harvoni. In my case, the blood test for cirrhosis showed advanced disease; the fibroscan showed little to none. Further, I didn't have any other symptoms or signs of cirrhosis.

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