Long Term Side Effects Of Harvoni (Page 2) (Top voted first)

I had Harvoni treatment last spring. I am not the same. My nervous system is a wreck. My anxiety problems have increased, depression and lack of motivation. My eyes changed drastically. My thoughts are not focused, I am nervous all the time, can focus or sleep. I had a 2 month migraine. Ringing in the ears is intense. I also was on pigalated interferon and ribivirn, I was pulled off mid treatment because I got so sick. After that treatment, I also had long term side effects. There isn't any back support for post harvoni people, nor are their anyone specializing in the after effect of long term HCV infection, it is NOT just a liver disease, it effects the nervous system and all else. I am at a loss for support with the doctors in my area, none seem to want to do any research and they don't have enough people in individual offices to report they have patients with long term problems. In our groups there are many with long term side effects. The doctor's try to pin it all on other stuff without really knowing. They just aren't listening. I know my body, I know the changes I have experienced. I am just really disappointed that there is not knowledgeable people out there for post HCV and post treatment hcv survivors. I need a support team that listens, they don't. I have extreme frustration to the lack of support after treatment.

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I am with u on all of your stuff and health issues! I glad that someone found a caring doc! They r very hard to come bye! I have all the same stuff wrong with my i only took 57 days worth because i did this bye myself! I went from a 100,000. Dollar job to not being able to do a dam thing! Now i am displaced and i just live it to god! I really don't know what else to do other than take pain meds ! My life has changed! Medical marijuana is legal in the state that i was in and it help! Every one of us are different! I am hpc free even after 6 months! So i hope that this post helps someone! May God bless us all ! James

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eligable for Harvoni.I two was on Harvoni after a year of interfuron and 11 months of interfuron with ribovirin. I was never ask if I had previously had hep B which I did. (Apparently people who have have hep B are not cantidates for Havoni. . Know however I suffer sever anxiety, I cry in my sleep. Last month I found out that I am in stage 3 heart failure, I'm having severe shoulder pain. Six months after Harvoni I Chad my first heart attack. My arteries where not the problem. That was my first cardiac episode, however now 18 months later I have been told I am in stage 3 heart failure. How could this happen so fast? I think was was better off with the Hep c. Have now appointment with two heart surgeons to see if there is hope.

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Re: Tania (# 83)

Harvoni has killed many people, no one is talking about those deaths. It was and still is a demon drug to me, I still have remaining issues that I never had before harvoni

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Re: luna (# 11)

I am 6 months post, hcv clear, but am experiencing the same symptoms, almost exact. Have just detected a rapidly growing skin "spot" that looks to be a carcinoma. I can't get my doctors to listen. One actually said i was feeling unwell because my job was too difficult for me and the only way I could ever expect to feel better was to quit. I too have been feeling suicidal, as the pain is becoming overwhelming. Where clean i turn for help?

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Re: Jbw (# 108)

I think most of us have reported to the FDA and Gilead, no one cares what it did to some of us, we may be a small percentage but others should be warned and we should have more help from medical community in finding answers to what tx did to us in regards to disabling symptoms

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Re: Jeff (# 135)

Please know that you are not alone. I am several years post Harvoni and I feel worse than before.. You are so right, no one wants to hear it' they do just blame it on other stuff. But I didn't HAVE the other stuff before Harvoni. I am also a nervous wreck.

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Re: Skpp930 (# 140)


There is the attorney group [Levin Papantonio 316 S Baylen St, Pensacola, FL 32502 (850) 435-7000] that is looking at Harvoni cases but more specifically liver cancers. They will take your information but will not take your case at this time; but the more people who call them, and also Lamb, the closer we will come to justice. Lamb has been looking at this for quite awhile and I can hardly wait until some attorney has the guts to go after Gilead. The problem is the science is so far behind what is actually happening. Although a miracle drug for some, it has injured hundreds if not thousands of us and we were not told of the possible consequences when prescribed.

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Those of us who have been injured by Harvoni get little to no help. It is now three years since I took it and speak with dozens of others who also suffer from joint pain, constant headache, neuropathy, hair loss, inability to sleep or constantly want to sleep, lung damage, liver cancer, etc. and all the doctors say is that our problems are not from Harvoni. Really? I was fine before and 12 week later my life was forever changed into misery. Wish I never took it and hopefully those who are considering it will really think about it. Hep C is not an automatic death sentence. I had it for 40+ years and was fine. Can't go back but wish I could!

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Re: Elizabeth (# 178)

I am end stage, and have been told by a doctor at Yale and at Oregon Health and Sciences University that I need a transplant. I finished my treatment at the beginning of 2015 as well. Since then I too have a lot of muscle and joint stiffness and pain. But the symptoms that probably bother me the most are: I have developed night blindness, the level of fatigue seems to be worse than it was before treatment, and my day/night reversal insomnia has worsened greatly. I am now on a sleeping pill and don't see being able to stop taking them. I've had insomnia for almost 20 years from the hep C but the symptoms have worsened greatly after treatment. These symptoms, especially the insomnia and night blindness, prevent me from finding employment because I never know when I'm going to be able to sleep or when I will wake up, and I cannot take a night job because I cannot see to drive. I am fighting the muscle pain and joint stiffness by switching to a totally vegan diet which seems to have had a tremendous impact on my level of energy. So I'm hoping that by moving more a lot of my muscle pain and stiffness will be ameliorated. I hope this helps. PS I have been on SSDI since a year post-treatment.

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I don't know what good if any it will do, but I sent all our replies on here to Gilead. I'm sure they don't care, but I sent them anyways.

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Hi Enoughalready,

I very long ago talked to the pharmacologist and asked what a difference between Tylenol and Advil, he told me that if there were or have problems with the liver, it is better to take an Advil, not Tylenol.

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It has been a yr since i finished Harvoni. I suffer from extreme back, knee & other joint pain. I am also extremely exhausted all the time no matter if i hv slept for hrs in the afternoon. I am awake for about 3 hrs before i feel like i am so exhausted i want to cry if i can't get immediate rest. Its just horrible!

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I too have post long term side effects from Harvoni last taken November 2015. 3 months after ringing of the ears and joint pain on left knee developed! Also high anxiety, I had to visit a Therapist & Psychiatrist ! My Gastrointerologist still today refuses to acknowledge my complaints from Harvoni! My bloods also came back with a High RA and animic readings! I took my last blood test last week . And I will find out this week on updates on blood results!

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I was treated through a Veterans Hospital for 12 weeks. I completed the treatment 6 mos ago but wasn't able to return for a final Blood check or Ultra sound. I am assuming the Virus is gone. I will return as soon as i am able for the finals.
I am writing today to make others aware of some Long Tern side affects I am having.
The Joint stiffness and cramping others complained about was one that I also expeirenced for a short time. Now I only have minor fatigue in the mornings which mends itself after i am up for awhile. The one side affect that is driving me nuts is this itching of my Hands and fingers. There is no visible rash associated with the itching on my hands but I do notice a rash on my elbow and crotch area. Scratching of course makes it worse. I have Anti-Fungal cream for the visible rash which works as long as I apply it several times a day. But the Itching of the hands is driving me nuts. The more I scratch at it the better it feels. Like a Poison Ivy or Oak always feels better after scratching. Can't figure this one out. Anyone else having a Rash or Itching issue after Treatment? Thanks ItchyJoe

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Michael why if they think you could go blind is it taking so long to see the eye doctor, specialist???? That is typical of doctors though. I am so sorry your going thru what you are and your not alone. There are so many of us suffering since treatment without any help from the doctors that gave us that poison. Sure we are cured of Hep C but we are left a shell of who we once were.

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Gilead makes this poison. The biggest problem you're gonna have is getting a doctor to say this medicine has messed you up. They are all gonna fall back on the Hep c. I had a life before I took epclusa. Now everyday is a battle to work, to do anything from all these nervous system problems from this mess. I wish I had never took it. My brain feels like it's being beat with a hammer everyday, and the crawling is unreal! Never had any of this till epclusa. I don't know who Gilead tested this crap on, but they didn't test it enough!

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me too. I wonder if I am just being a big baby, or is it really possible that Harvoni caused somehow the gastroparesis (which I think began shortly after I finished the Harvoni). If it had occurred to me that there might be long term after effects, I might have chosen not to treat anymore. (did peg/intron many years ago, like you my docs removed me) This new illness I have is not curable or treatable. If it turns out there is even a chance the Harvoni did this I will be seeing a lawyer.

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I wish I knew. No one in the medical field is going to back us up. I had a psych Dr. yesterday tell me the treatment is what has messed my head up, but said he wouldn't testify to it. All we are, are dollar signs to everyone.

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I'm in a lot of pain since taking Harvoni. Please share my suggestions with your husband:

How I'm maintaining my health until the cause of my illness and it's cure are figured out.

1. Organic, high protein, no refined sugar and low fruit diet.
2. Fibromyalgia specific aqua therapy Monday, Wednesday and Friday
3. Ensuring I get eight straight hours of sleep at night by taking skullcap; resting during the day.
4. The following supplements: corvalen ribose, CoQ10, omega-3, vitamin d & k2 isotonix vitamin packets, boldo tea.
5. Self-massage with a thera-cane.
6. Chiropractic adjustments.
7. Hot epsom salt baths (drinking lots of water during them and breathing deeply).
8. Loving the beautiful life that I have, despite having lived with chronic pain since 1993.

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I am. having terrible things Happen to my body 2 years post Harvoni. I think we may need to talk to someone about a mass lawsit. If the Harvoni caused this I might have just let it be and let whatever time I had left be better time. Now I have all this other stuff to deal with

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