Long Term Side Effects Of Harvoni (Page 9)

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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Just read your post and really hoping for an update. Hope you are well

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Re: Wifey (# 19)

I finished Harvoni treatment in January 2016. I have had systemic inflammation and constant pain in my hands and feet since. Lately the pain has moved to hip joints and part of my lower calf. Sometimes the pain moves in a circuit from feet to hips to hands. I feel like I have aged 10 years. Can't sleep, wake up with stiff achy joints. No energy and cranky when I don't get enough sleep. I have been to GP and other doctors who don't know how to help with pain. I was taking a 5mg Oxycodone, 100mg Celebrex and 5mg Cyclobenzeprene along with a 10mg Ambien. Worked for awhile. Now I am having to take10mgOxy,200mg Celebrex no Cyclo and Ambien. Works sometimes. I found a natural pain reliever called Kratom. it helps sometimes. My worry is what do I do when the meds no longer work? I have started fighting the inflammation by eliminating sugar and red wine from my diet. Also working out at the gym and water aerobics. Tired of poor sleep and daily pain. Where do we get help?

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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: Wifey (# 19)

Yes, as embarrassing as it is. NEVER had a problem till harvoni. I would also suggest a biopsy. I magically went from stage 3 to stage 4, all along, excersising, watching the diet etc. BIG PHARMA has lied to us again.....for $$.

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this is to prrdrr. I read your post and I have all the nerves, anxiety and other problems you have. My nervous system is a wreck. I don't go out of the house anymore for whatever reason, I don't know. The migraines come and go, but never leave completely. I have developed so many side effects for my harvoni it's crazy. The new one is skin cancer. It started coming on about the fifth month into my treatment and has progressed. Hepatitis C medication company claim they will extend your life, but they do not tell you what your quality of life will be. Most people are miserable. One other thing that people have to consider when they take this harvoni, is the average price for one pill is $1,000. That means it cost $30,000 a month on average for this treatment. Whose welfare do you think they take into consideration with this type of money to be made? Yours, mine? No they only take into consideration the bottom line. And the bottom line is the stockholders. Billions are being made on harvoni, but not one penny is being spent on improving out quality of life after the treatment. I have no follow-up, which I feel is Criminal and no support. Yes, the doctors think you are crazy when you tell them about all these elements you have. So find some type of relief and knowing it's not in your head. I wish I could sleep more than one hour ahead of time. It's been almost a year since I stopped taking harvoni and my life is a complete waste now. I wish the people that have a good experience all the well-being in the world, but the rest of us suffer for a thousand dollar pill!!!

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I would also like to share with the person that has the muscle cramps. I couldn't believe it when I read this. My ankles, both sides, cramp constantly. I'm like a night cramp in your leg, when you stand up and it goes away. These cramps keep coming and keep coming and keep coming!!! I guess I'm just one of those crazies that make up stories about harvoni...

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Re: Doug (# 165)

I have all your symptoms too. It's almost like all your insides are vibrating all the time. My mind feels like I'm in early Alzheimer's disease. What do we do? I've talked to lawyers and they tell me after a certain time period you can't do anything about it. I had a job for 16 years, lost it. Have had 3 others and my brain just won't work right. The crazy neurologist said all my cognitive tests where very low, that I needed to change me diet? Never had a problem till I took epclusa. All these doctors don't care, they don't listen, they SUCK! I wish they had to take it, see what they think afterwards.

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Re: Doug (# 166)

Doug, order your self some Cramp defense magnesium, you can google it online. It is the only thing that has helped my leg cramps from Harvoni, I thought I was going to be a cripple from the leg cramps and feet, I still have many other side effects of the treatment but at least this one I was able to deal with by taking this particular magnesium supplement, It is worth every penny

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Ramo (# 167) --

Ramo...good advice! Had a dentist recommend magnesium for another issue. He recommended a chelated form called SWANSON Albion Chelated Magnesium. I only stuck my head in on this because hubby had severe cramping from lisinopril. Different issue than mine or the Harvoni side effects...but this was fantatic. And cheap. We got ours on amazon for 8$ for 90 capsules.

Your suggestion may be an even better form, I don't know, but if money is tight, then Swanson is a good product at a good price. As soon as you mentioned magnesium I though, OH yeah! That will make a difference! Hope someone benefits from your suggestion. Many meds cause muscle cramps and spasms. JMJ

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Re: Doug (# 165)

Hi Doug - I went through the Harvoni treatment and could really fill the page with the problems that seem to have resulted. I hate this as I feel like I am whinning and I don't want to be like that. As said several things have resulted, but I will only mention a couple that for me are getting unbearable. I have major anxiety with depression. The one that has started getting worse is panic attacks. Anxiety has become terrible and when the panic attacks starts it is causing many issues with relationships especially with my wife. The other I will mention is pain in joints and muscles. I know some would probably be normal, but it has been life changing. I wish they would at least admit these after effects, but I doubt they ever will. These issues have been so bad I really wore the VA Doctor's patience out and they pretty much pushed me out and determined I an just a complainer. That makes me feel even worse to think it might be mentioned. Good luck.

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JMJ (# 168) --

thanks for the advice on the cheaper magnesium, I may try it to see if it works for me, although I am so dependent on this particular brand, after trying about 6 others that did not help aaaahhhhhh, the things we are all going through are horrible, I too have the panic attacks and depression although I think our depression may be circumstantial as in who would not be depressed dealing with all our health issues and no Doctors that truly believe us and refer to us as psychotic, then they put that in our charts for any other Doctor to see, It makes me sick, It is really time for Gilead to fess up. The Sovaldi in the Olisio/Sovaldi hepc treatment is the exact same drug as sobosfur in harvoni at the same mg,,,if you research sovaldi there is a long list of side effects,,,,,yet they chose to not mention that either . Every drug advertised has a long list of side effects, except for harvoni,,,,I try to not feel angry as that is NOT healthy but it is really hard

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I'm so sorry to read all of these comments, but at least I know I'm not the only one. Neuropathy, tickle/tingling feeling in my chest, legs etc. Can't sleep w/o 5-10 mg of oxycodon. Magically went from stage 3 to stage 4 and all the Drs do IS BLOW ME OFF AS THOUGH I'M PSYCHOTIC. THEY refuse to listen to the reality that the drug has long term side affects. We can't do a whole lot now, but at an appointed time, the money lovers will have to face God. HAS ANYONE HERE HAD A LIVER TRANSPLANT POST HARVONI?

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Re: Doug (# 166)

Same thing here. The doctors say I'm crazy period and that all my symptoms are because I'm getting older. I've aged 10 years in 6 months. That's getting older! On the fast train to hell. It's hard to believe I was out camping, shooting at my gun club, working on my truck and riding around on my HD. Now I sit in a broken-down recliner day and night. I have to sleep in the recliner because I can't sleep in the bed. I've been to the doctors, neurologist, you name it. I'm labeled as one of the crazies. They say I'm drug-seeking and there's nothing wrong with me and yes it does go into your medical file and it gets worse! When they do that, you get red flagged at all Hospital and doctors offices as soon as they look in the computer they see the red flag. That's near a death sentence for us. My own doctor has refused to treat me because U Mass Medical Red Flag me, and now I'm left on my own. Don't try to get any benzodiazepines to help the anxiety and panic attacks. Most likely they will say you're an addict and that's why you asking for them. I want these people to be in our shoes. Let them for one week and feel what we feel in our bodies and our brain. They would change fast. Funny I came from a city and I met doctors, neurologist and police that are hooked on Heroin, cocaine and benzos. True story. Even a federal Marshal. I've seen it all, but we are the ones that get treated like crap. That's all I have to say about that. Once you are red-flagged because of your complaints, you might as well be dead, because nobody's going to help you. Sorry.

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Re: Doug (# 173)

I ran into the same thing with my doc....I am crazy. Funny....we all can't be crazy and I have talked to over 150 people injured by the drug. What I did was get a copy of my docs records and then request that whatever was incorrect or false be corrected or removed from the record. I may also suggest you file a complaint. My doctor wrote in my records that I was bi-polar, OCD and delusional. First of all, he is not licensed to make that determination. When lies affect you in negative ways, you can check with ACLU or any attorney and see if they can help. This has got to stop....treating us like lepers when it was the dang Harvoni that destroyed our lives. And by the way, there are now reports that Harvoni is "suspected" to cause kidney injury so all who read this, please be aware. Gilead will pay the piper at some point.

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I wish there was a way on this forum for us to contact each other ... without a moderator keeping us from each other for support other than feeling like we are too spread out, any ideas?

Editor's note: While we always wish to encourage a free and open dialogue on our threads, we also have to uphold our stated privacy policy. As such, we cannot allow the exchange of any personal information or links to pages which would reveal a user's full identity.

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Chauch (# 172)

Those of us with Hep C or chronic liver problems are classified as STAGE 1-4. I was stage 3 when I took HARVONI. Great diet, exercise, did everything right. NOW I'M STAGE 4, with a MELD (model of end-time liver disease) score of 14.. HAS ANYONE SEEN THEIR LIVER STAGE GO UP AFTER HARVONI???? I would appreciate a comment on this.

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Re: luna (# 11)

Yes I just finished a three-month Regiment of harvoni treatment and it had migraines for the past 15 days straight day and night associated with dizziness joint pain muscle aches I'm extremely agitated often none of these situations occurred while I was in treatment only when I finished treatment these are not Phantom symptoms they're very similar to the post I've read so far

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I am now more than three years post treatment. My body still feels locked up. Little flexibility and tremendous stiffness. Pain continues. Chronic fatigue. Hard to live. Would be nice if a study were conducted in those of us with long term adverse effects. Would be nice if I had someone to help me with my chores. I live alone.

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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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Re: Cathy (# 179)

My list of side effects: headaches, tinnitus, joint pain, severe low back pain, fatigue, depression, numbness of the feet, leg cramps, gastrointestinal issues in that I can't eat much without getting nausea, bloating and sometimes vomiting. Brain fog, hair loss, vision worse and that is just what I can think of right now. I have lost 45 pounds and still loosing without trying to lose weight. I wish I had known the side effects of Harvoni b4 I took it 2 years ago, my life is filled with pain, no one understands except the others of us still suffering, we have some invisible illness that impacted our immune system and overall health. I can no longer work and my check from SSDI is not enough for me to live on. Gilead will never own up the what has happened to those of us affected in a negative way.

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