Side Effects And Lack Of Transparency Harvoni (Page 2) (Top voted first)

As I read the side effects I find myself getting more and more annoyed at big pharma. If you google Gilead and litigation you will see that this drug was pushed though trials and sort of held back side effects. In addition that's not really safe because the people that participated in the trials were very ill. My hepatitis was fortunately stable, as i posted on another thread 2 wks into this and i am going to the doc tomorrow and saying OFF! Of course they cover their arse and do the labs to see if its not anything else. My face is pasty white, i discussed the mood swings i am like a black box warning but alive. its taking every bit of energy to keep my emotions in tact. I DRINK a Gal easy of water, its not the water, its the freaking drug! I think they are either dismissive or don't care that the drug really was not researched enough to list the side effects they just want to make money. After 5 years if this 2 weeks didn't kill me i will come back. I never had anything pushed on me so much in my life its like it was gold to them. NO WAY was there not money involved. I am not an idiot. To those of you who completed treatment with little to no side effects, i commend you. The rest do your research before you take this monster, its heavy stuff and we have only one body. Be well and God Bless.

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Just to bring some reality to this. The one with the username Jim who told you of his problems has now died. He was a young 57 and active and vibrant before Harvoni. He had no liver damage and was very healthy. He died several days ago. This is reality.

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The FDA reports show all sorts of problems being reported to the FDA but doctors are not talking about it and the FDA is not releasing the information. This medication is not for everyone. Many have died due to "unexplained" organ failure, aggressive liver cancer post tx, and so many other issues.

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Ok hpc what should we do?! Keep on keeping on! I overwhelmed doc after doc! I tried at 60 years old and have spent all my money! On and on! Sure i'm hep c free! But now i have fybro, chronic back pain, high blood pressure, and the list goes on! Went from $100,000 dollar job to being broke! I just know God has a plan and i've been on every hpc site, called every hpc c site for help and yet i live day by day! It's a 900 dollar pill! And I stopped my treatment after day 57. I'm a single white male, 60 years old and i am screwed! Just giving my life to God the best way I know! No help other than u guys telling me to see my g.i.! I saw 4 of them, 5 mds! Thanks for sharing.

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Re: Carol (# 13)

OMG Carol, do some research online as to the horrible "side effects" of Cipro and Levaquin almost as bad. They are worse than the Harvoni! Thank God you didn't continue these bad drugs. They are toxic beyond belief.

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Re: Jonathan (# 98)

Damn that makes me angry/sad. I've developed neuropathy suddenly 8 months after finishing treatment. Never had before. My dr. will know about it in 2 days when i see her. She told me when i said Yes to this drug, that the side effects would be mild and no one has ever stopped treatment due to side effects. Problems that pop up months after treatment? No one would ever even suspect that could happen!

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Re: Candy (# 99)

I got neuropathy just at the end of 12 weeks of Harvoni along with decreased lung function, hair loss, constant headache (started day 11 of tx) and ear ringing (also day 11 of tx), chronic fatigue, all which I did NOT have before treatment. I was assured it was safe and yes.....people stop taking Harvoni. These doctors need to get educated!!!

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I am so very sorry about the problems you've experienced and I understand being mad at the drug company.

However, some side effects are not ever detected, until a medication is out there for real world use. Clinical trials are very limited and only include a limited number of people, so some stuff can't be known, until a drug is out there for real world use.

Other possible side effects, as reported by the FDA, may possible include nausea, dizziness, insomnia, diarrhea and fatigue.

Additionally, there is never any way to know how any given medication will affect any certain person that tries it, since we are all different.

Are you on any other medications?

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Three weeks off and going to a cardio doc next wk. it seems to have exasperated a nerve condition but I was only on it two weeks.
The men I know are tolerating it pretty well I speak to 2 a day and they have little to no sides. Not sure what to tell you if you are on any med's make sure they are stable. If your liver is bad I guess you should give it a try. Still not sure what went wrong with me. My heart and muscle skeletal were affected. If you can wait a year and see if more sides are reported that's an option. Depends on your overall health.
My concern is next year and the next year, I couldn't get through a month.

Good luck and keep us posted. I wish more ppl would.

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Hi, not that I know anything but has anyone given any thought to the mixture of ALL the drugs we take. Are our bodies mixing the chemicals that changes to another compound in our body to something else. Not joking just thinking, any thoughts. You know your body better then anyone else. What you have to do is think it out. Take notes. Like what u are eating and when and the times of the drugs taken and just everything and see if it might be an outside influence from the environments. Doesn't have to be a long report, but you have to pay attention to your body. Even your mental thoughts. And yes all of us have thought of death it doesn't mean you are suicidal. When you have a disease you think about the end. Nothing wrong with making plans. Remember there is always tomorrow. Must think positive, you can overcome with your mental powers. You can do a lot of curing yourself with your mind. The hep c sucks, the side effects seems small or nothing to people that don't have that problem. God bless and remember it WILL get better.

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So sorry to hear you joined our party! And I wish I had better news but 18 months later and everyday is a day of pain for me. My life will never be what it was. I gave up on even talking to the doctor about it. They don't believe us anyway. Harvoni is ruining people and they dont' want to hear that. Honestly they have no clue how to treat us now either. Sure they can hand you more pills. I won't put anything else in my body! That is what caused my mess. I will stick with what I have left of myself.

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Jamie, Immediately after stopping Harvoni after my 12 weeks, I had an asthma like attack. Then my heart went berserk with palpitations. After an ER visit and a number of heart/lung tests, I now have scarring in my lungs and they work at 50 percent capacity meaning they have to work twice as hard to feed the proper amount of oxygen to the heart in order for my body to work properly. I was very healthy prior to taking Harvoni and did not have cirrhosis and took no other medication. I took care of myself holistically. I have been in contact with a gentleman from TX whose wife was very healthy, took Harvoni and her lungs quit working. I also am in communication with a woman in my state who experienced the exact same things with her breathing. She still struggles to this day. Best wishes.

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There are so many heart problems reported to the fda by those taking Harvoni. There have been reports ofcardiac arrest, inflammation around the heart and heart valve damage. Be careful.

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Yes, you can all say "Do your research", and believe me I wish id have looked into Harvoni with a fine toothed comb. Im usually very diligent about researching things and spend days, weeks months looking into it before acting. The reality is that I was on the HepC forums for over a year before I decided to take it. i read countless posts about peoples success with the drug and NOTHING about it affecting the heart. obviously I didnt look far enough, but this must not be all that common or I would have seen at least one person mention it right? Im pretty upset this has happened. I dont even know what it all means. Am I doomed now? Im pretty scared to say the least. My Dr. says the anxiety will on,y hurt me, but when im having constant symptoms to remind me I might drop dead at any minute, how do you deal with that?

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I am post one year, my body pain is aweful. I am taking two 100 mg demerol a day and it is not enough. I can't stand this much physical pain in my hands, wrists, feet, hips, back and legs. I am in a closed group and we just lost a member who died of complications from the drug, we don't know what he actually died of to be exact, but it is so very depressing.

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Jim posted on page three. I know him from a group that I run of those damaged by Harvoni. He had every possible side effect you could think of and the VA failed him horribly.

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thank you for sharing, I been on at least 20 sites about this med, I stop after 7 weeks, now my hpc gone after testing 4 months later, I and the doc tell u that u need to keep going on taking this meds, well it has messed my life up and , I have no one to blame but myself and the sorry doc, in new Mexico its all about your monies that they can get to the ins company's, told my gi doc that I was passing out 3 time, no energy, lack of sleep ,and had to keep my job in the oil and gas field, working 14 hours a day, now I can even work , much less find a job for a 60 year old man that has,work his whole life, so If this even get posted because a lot of my comments have not been posted, all we can do is pray,i guess, ???

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Could you please tell me which forum you are referring to about the young woman who's father died after the starting harvoni? My father was hospitalized 2 days after beginning the treatment and passed because of organ failure but the causes and what really happened to him are unknown. The team of medical professionals could not find any reason. I am curious to know if there are others who have had this same, terrible outcome. Thank you.

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so sorry could you please tell us were to go to file a complaint? thankyou

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They lied to the doctors. I'm on day 60 of a 90 day regimen. They lied and said no one has ever had side effects bad enough to make them stop. First thing, was it made my Fibro worse. I waited a week and started again. A month ago, i was sleep walking, just once. I am 67 yrs old and never had this problem, terrifying. I may have had a concussion. Anyway....2 weeks ago i started smelling putrid cigarette smoke all the time! Neurological probably. It is awful. And my issues from chronic Hep-C were not serious! Scared and pissed off.

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Re: Verwon (# 1)

I am almost 2 years post tx, My back pain is the worst it has ever been and nothing is helping, I do have Degenerative disk disease with pinched nerves at L5 and S1. But this condition seems to have been amplified after harvoni, I still have gut issues and tinnitus.

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