Harvoni Side Effects (Page 3) (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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Thank you for understanding everything yes the labs showed a decline and very abnormal and took forever to get a referral to a hematologist so hopefully it will help. Every time he went to his GI doctor and complained about side effects and concerns during the entire 6 months of treatment and also the primary doctor it was always ignored and dismissed. Both doctors would never blame on the Harvoni . Yes the poison pill did kill the virus and we are both very grateful. The one thing I know is that he feels they kept him on it way too long. No matter what he told to any doctor about concerns of side effects he was having they would just keep telling him to keep taking it . Now I am so scared because he was in the hospital for a week after slow heart rate which caused his heart to stop completely and I THANK GOD That they had put him in the ICU right away and was able to get his heart going again . So thank you all for sharing your side effectts because it helps so much to know others are going through the same thing . That is what this is all about to help each other to know we are all not alone. GOD BLESS ALL

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Funny you should say that. My doc said that she wondered if I was bi polar. That was a stab in my liver. Don't you think at 60 something I would have exhibited or been diagnosed. In addition I was told if it were placebo would I be reacting the same way. Yep sure would amazing how we are conditioned to be silenced by the pharmaceutical industry. It's really demeaning.

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Hi there,
If you are sending that " don't jump all over me" referenceing me I am not going to jump all over anyone. Only disturbed at the lack of transparency at the medical community. We are not here to compare only to share.
I am happy for all of the people for whom Harvoni worked, I only hope it didn't do any damage to those of us that it didn't that's all. I have never had pains in my liver and all of a sudden o get stabbing pain probably the virus coming back to replicate what the 2 wks rid from. We take it one day at a time, each one of us is different. My only wish is that when pts come in with complaints they are not minimized or treated like they are crazy heck we wanted this to work more then the docs it's our body.
Best wishes for healing to everyone.

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keep taking it. it works and then u will feel better as your liver gets better. u can stick it out for a few more weeks. in life there is pain, get that treated too1! one day at a time. keep happy thoughts and stop the bad thoughts. mental is part of it to.

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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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@ 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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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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@ 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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New Day I am so sorry for your painful back and that you had to stop treatment. I understand. At least I have maintained my undetected status now for over a year. The first few months after treatment were the hardest because the pain was worse and I felt bad most of the time. I have to work so I had to push through it. I limit myself to a couple Tylenol maybe once a week if that. So many people do okay on Harvoni and many like myself had a rough treatment and aren't well still. There is a price sadly for most disease treatments. A trade off so to speak. It's not good but it is what it is. And yes I do believe that Hep C for 40 years damaged my joints and Harvoni just sped up the process. I pray it did extend my life by stopping the virus. Time will tell.

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For those of you currently taking Harvoni, please be aware many of us end up with nerve damage to include neuropathy. There are studies that show Glutamine helps to protect the nerves when taking a chemo. I liken this drug to chemo. If you are taking Harvoni, please do some research on Glutamine/Neuropathy. I'd hate for you all to end up like so many of us with not only neuropathy but with other damage to the autonomic nervous system. Harvoni is not as safe as Big Pharma wants us to believe.

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I too took harvoni believing it was a miricle cure only to suffer the results. 8 months post I still feel ill everyday, just a low grade ickyness that won't go away as well as pain everywhere but especially in my back, neck and knees, yes knees which I never had a problem with. Anyway I just want to say I consume cannabis everyday to ward off the pain and keep my back and neck spasms down to bearable. Yes it really works and I don't know what I would do without it. I have scripts for pain meds and rarely use them.

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What about a legal case against gilad? With all of us suffering so much can't we do anything? I know because they won't admit fault etc. it would be hard at this point. The hardest part is getting doctors to admit there is a problem with the drug. I still feel 10 months out worse than I ever did before I took it. Joint pains but the fatigue is the worse. Feel like my life is passing me by but there's nothing I can do. I eat well, take vitamins, etc. If anyone has had any luck with a supplement please let me know.

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I agree you won't get any doctor to say it's from Harvoni. How can they deny so many people with all the same complaints after treatment. I am 17 months out now and it's not going to ever get better. That is obvious to me now. I had hope a year ago it would improve. I felt I aged ten years as well.

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I don't think that interferon was worse than Harvoni. The doctors and their staff were really supportive and offered some meds, etc., that helped with the side effects. I received absolutely no support from the doctors who prescribed my Harvoni. They acted like I was imagining the serious side effects or they just flat out declared they knew nothing about the drug. I guess they decided they could prescribe it but they didn't have to offer any support to their patients. The mantra was "You're lucky you were able to obtain Harvoni".

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Sherrie, I have FDA reports that show so many side effects to include many deaths we have not heard about. Unless we get the FDA to release this, everybody is walking around totally uninformed. There is a petition on charge.org requesting them to release the info. Just search Harvoni.

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I just completed four weeks of Harvoni today. The side effects of been brutal. I am having extreme nerve pain in my lower back and down my legs, I am having excruciating kidney pain, I am having so much pain in my joints and muscles it's to a point where I don't even want to get out of bed because it's so hard to do. I'm also still getting the headaches and the real scary part is I'm suffering some memory loss issues which scares me a great deal. I drink about a gallon and a half of water every day and when I go to the bathroom can barely squeeze out a little more than a few drops of urine and the minimal drops of urine that I do get out is dark, dark yellow. Today, I tried explaining all of these issues including how tired I am, its like I havent slept in a few days. My VA doctor said that my oxygen levels were fine so I shouldnt be tired. Well, I am... When I told him about all the pain, the severe nerve pain, the severe joint and mucsle pain as well as the kidney pain, he acted like I wasnt being truthful, saying again that the only side effects are slight headache and perhaps a little tired... He told me that none of these issues are associated with Harvoni, that no one else has complained about having these pains, aches or swollen joints.. As I said earlier (as I am typing this my hands and fingers feel like pins and needles are beig forced from the inside of my fingers and hands, its really killing me. I have a high threshold of pain, all of these have me in tears at least a couple of times a day.. When I combine all this pain, muscle, nerve and joint and combine this with my memory loss,,, I am really upset.. . I have never had memory loss, I do now and it is getting worse, I have never had kidney pain, I do now and its getting worse, I never had mucsle and joint pain like I do now, if I had done some hard work one day in the past sure I would get some aches, but it was just sore, not painful it was never like the pain I am getting today, which is getting worse by the day, the pins, needles and razor blades in my feet if I were to stub a toe or a finger it felt like I was hit with a bat that has nails coming out of it. Two days ago, I stubbed my pinky toe on my right foot,,, the pain shot up my foot, through my leg and into my hip putting me down on the floor crying like a baby... I just cant describe the joint pains like in my elbows or ankles, if I lift my arm up my muscles feel like theyre being torn apart.. I have, or at least I thought I had a high tolerence of pain,, well not this kind of pain, my neck is always killing me now... As I said, my memory loss, my little and very dark urine combined with all the pain is so bad I wish I had never listened to the doctor and put this off until more was known... I also want to add that I am extremely short of breath at times, finding it hard to breathe, even getting occassional bursts of chest pains, it could be anxiety, not sure but I do know this, my doctor said it was the body cleansing itself, that most of what I am feeling is in my imagination,, well if this is imaginary,, its very vivid, very real and very scary, getting scarier daily.... Yesterday, I couldnt get out of bed yet I couldnt lay down with any comfort because if the sheet were to say go over my toes and foot,,, it felt like a razor blade cutting me... I still have 8 weeks left. Prior to starting this I was a little tired, no cirrhosis, I never felt like I had Hep C, I had it since 1979, in the Navy when detected, I had alwaya felt a little tired but honestly cant say that I had any other symptoms but the VA Doctor said my viral count was high and that I should do this. Today, after speaking with the Dr. I am even more worried because if he doesnt believe me now and with all that I am reading where these issues, these pains all get worse as well post treatment.... All I know is there is not one thing that I have said that isnt true about all these side effects. What really sucks is that I am on Suboxone due to a 20 year pain medication use from a doctor due to a fall off a telephone pole. I have always had disc pain and sciatic nerve pain, controlled pain in my right leg but the pain is now 10x worse. So I take a motrin every now and then but was told to try to stay off them and leaving the Dr's office at the VA today, I was told to suck it up, grin and bear it, afterall I will no longer have Hep C and I should be happy about that. Well yes I am happy about eradicating the Hep C but I am so much worse in everyway, as I finish typing this, my hands and fingers are feeling like theyve been cut by razors. My whole body feels like s*** and I have had to reread this 7 or 8 times because I forgot if I had said this or that.. I feel like crying the pain is so bad, but I have to say, my memory and lack of urine output is also weighing heavily,, really feel extremely depressed,, I hope that all I have mentioned goes away, I hope it doesnt contiually get worse anymore but as each day goes by, I am feeling so bad, I dont know why I did it... Hopefully this all makes sense, my eyes are so heavy, they kept closing while I was typing this,, its very depressing on top of all this pain and memory loss, let alone not being able to pee after drinking tons of water, I even tried coffee, used to pee like a race horse, now I pee like an ant, a dark yellow ant.. Scared in Vero Beach,, thats what I am... Too bad the Dr didnt believe me, also very frustrating... Will update around the end of week 5.
Jim

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I don't know if anyone is paying any attention to what I write, but here's something more I've learned. The ledipasvir drug in Harvoni is eliminated by billiary excretion. With this type of elimination, small amounts of the drug can be reabsorbed through the GI, known as enterohepatic cycling. This can, over time, prolong the half life of the drug. I read this "Billiary excretion can be inhibited due to disorders such as hepatic or gallbladder diseases. Transporter-mediated secretion of a drug into the bile may be competitively inhibited by other drugs or endogenous substances. In such conditions, clearance of the drug may be reduced and the dosage regimen must be adapted."
If a person has a sluggish digestive/GI system, it's more likely that more of the drug would be reabsorbed. High fiber diet might help with elimination of the drug. I recently had a few bad days of joint pains, chills, muscle aches, and hormonal fluctuations. I took this into my own hands and am doing GI cleansing with activated charcoal, Bentonite clay, and psyllium husk drink. I do it far apart from taking my pill so it doesn't affect initial absorption. Boy do I feel better! I will continue this practice every day until the end of treatment to avoid a toxic build up of this drug in my system. Also drinking warm lemon water to stimulate gallbladder prior to the cleanse, as was recommended.

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JennyJolly, It would be irresponsible of me to tell anyone what to do as far as whether to take Harvoni or not. I did so much research prior to taking the plunge. My age and reproductive age status was the deciding factor for me. I belong to a private support group and most people I've met on there do not report these joint pain symptoms, at least not at the severity that people on here report. I completely believe that not everybody is a good candidate for Harvoni but I don't know why since I don't know each person's profile, no way to find a pattern. I believe that there should be better prescribing practices based on patient profile, but Gillead and the FDA are blind to this, or just do not care. I share the science that I know and have learned for those who choose to take Harvoni. Possible things that may help prevent side effects. Right now I'm going deeper into my research on GI permeability and prescription drug side effects. So many people I've talked with do not eat right and take meds more than they should. NSAIDs and antibiotics are very destructive to gut health, creating a sieve in the lining and an unhealthy microbiome. Additionally, it is finally common knowledge that poor gut health equals poor immune health. I also agree that it's possible that Harvoni works so quickly that our immune system, which has been in overdrive 24/7 for many years, shuts down too quickly. That is the researchers' current theory as to why some people see their liver cancer return, and some develop it for the first time after Harvoni treatment.

I would just say that if a person is healthy, no liver damage yet, and not at menopause age (age doesn't affect SVR outcome for men), he/she might want to wait for the newer drugs. For those with progressing liver disease, it's a more difficult decision. There is the first real-world data report on Harvoni treatment efficacy (from data released by the VA) in the August issue of Hepatology, a professional journal. Anyone can access it. So, I only have one more week left in my 8 week treatment. Right now I feel pretty good. Fatigue, moodiness, and very mild headaches are the most consistent sides, but I still work out and hike. I have had a few very short episodes of worse sides, but nothing that lasted. I probably will never know if all of my work (supplements, diet, exercise, saunas) has helped but I think anyone going on any powerful drug needs to make an effort to learn about how to improve their health before and during treatment. Most doctors do not know and can't advise in this area.

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@jim, please keep us posted on how your treatment is going. I like to think this poison passes but docs are driven by money and some are more greedy than others. I agree if only they would be honest and admit the side effects. If they did that though they could never in good conscience put another person on this because the real truth is they do NOT know. If they told us that probably 60% would opt out.
We got screwed by our doctors, sold out to big pharma and many of us have had enough betrayals who needed this! I got a double kick in the ass as they pre purchased my med, talk about rip off! And just like the Blue wall of silence there is the white one to. Lower income, VETS, InMates drug addicted, HIV-pos no one cares. They use us to get kick backs from the government and pump up the stock. Amazing huh? For all of us who worked our asses off in recovery this was like the devil slipping right in. Trust your doc but tie up your camel.

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I guess it might be something to show the doctors that say there is no one having these side effects. I'm very happy I have cleared my virus. Well I have not got my end of treatment results yet but so far the virus hasn't been found ..the sad thing is I thought it was all over but I still feel exhausted with not being able to sleep with the constant joint pain.. Hope it goes away soon so I can start to feel like I'm alive again!

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