Side Effects And Lack Of Transparency Harvoni

New Day Says:

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.

108 Replies (6 Pages)

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Verwon Says:

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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New Day Says:

I wish some of you that posted sides would come back on and let us know how you are doing. I think I found the culprit although we will never get a doc to admit it. Harvoni raises the CreatineKenosis (sp) it's all making sense now. Men with thicker muscle mass tolerate it better. It's an enzyme that this drug raises the levels of in our body. Affects our brain, kidneys and muscle skeleton nerves. I have tachycardia now after only 2 wks.
Please read @ this and see if your symptoms sould like this might be the cause. I HAD to know what went wrong and this must have been it. I did misspell the Kenanisis but if u google it you will find correct spelling.
To those who posted last yr or last month please let us know how you are doing. I encourage all of us to report this to FDA. I think this drug is more dangerous then they reported. Thanks in advance. Scary stuff.

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mike Says:

how are you feeling now? I will start Harvoni next week my liver not in best of shape. reading all the side affect scares the crap out me.

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New Day Says:

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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jamie Says:

Buddy we ARE the test field!!!! send it to the world and see what people report about it. two things i found how the drug acted on me. i got very thirsty and i found that i need sugar to keep my energy up. my liver be so bad i am now cured with Harvoni that i found i need to keep my sugar up so i would have energy plus it makes u feel better eating candy, really, it works. i also found i neeed ice or ice cold things for my throat. like ices in a cup. i found it was easy to swallow since i have a closing of my throat also. so nothing stays down unless i have the cold ice. people you have to take care of yourselfs , find what works for you weather it is food meds or just watching tv or looking at old pics with your family. little stuff helps instead of staying trapped in your own body. u have to heal one self. u can do it. stay in touch and listen to what people say. learn from everyone tht u have contact with good night. Take care of pain first an d the rest will follow good spirits make for better healing.

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fourlocos Says:

I am 16 months post treatment. I still live with joint pain mainly my feet but everywhere as well. Saw specialist, they thought I had RA but more tests done revealed I do not. It is damage from the Hep C for forty years they said. I also was found to be depleted in B12 and Vitamin D after treatment. So far taking both hasn't helped anything! I was truly a test subject because I started it a month after it was FDA approved. No doctor will say it's from Harvoni. Don't waste your time and money on that. Just saw on another forum that a young lady's father died once he started it. And we have another person who's wife died from lung problems that started with her treatment. There are many deaths and we have the FDA reports!

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jane Says:

I don't believe that patients who are suffering side affects from Harvoni and are cured are having these symptoms because their liver is damaged. I still have symptoms (similar) and have little to know liver damage. I'm beginning to feel that GI doctors are very cold and uncaring.

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jane Says:

Please don't excuse Gilead for withholding the true side effects of Harvoni. They shortened their drug trials by 50% and, even though many people have had problems since the drug was out in 2014, they aren't being honest about the possible side effects. They had had more than enough time to be honest. Have you read the Canadian FDA site on Harvoni? It lists the problems that we are having.

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jamie Says:

What country, Canada or USA with the drug Harvoni? How hard is up there? How is it to get pain meds there? Just wondering about the different health plans and societies? In general , really what are the difference in working with the Drs. Is their govt harder to work with when u r sick? Just to get a conversation going. Have a pain free day.

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jamie Says:

come on people, A lot of us have other sickness from our prior lifestyles. You get Harvoni for a reason. When we are sick we will grasp for straws so any possibility to get cured. we will jump on it. We the patient must make our own decision to take it or not. And of course we all know they have side effects and a lot have possibility of death. So anything short of that is good. as far as it is about me and we all have different problems. I am just speaking for myself. we are all different on the way we see life and what we want from it. WE have to weigh in on the subject as to say things as we (you) see (feel) it. Not here to put people down but I want you to fight for what yours and that is a quality of life . I don't hear anything on how our spouses are handling it and the family. I am at the point they are at the health care burn out. mine is going on 9 years of treatments. It was hard on everyone and now they think that the cure , everything is back to normal, NOT. so now they have no respect for a ill i am a slacker now. maybe i should be a crybaby over it.then maybe i would get respect. If not the right place of this talk let me know and i will stop those thoughts. But does anyone know a bulletin room about the subject? tks

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jane Says:

Jamie - If you sign on to Inspire (American Liver Foundation's blog), you can read the FDA website that lists Harvoni side effects. No one knows why our FDA didn't have to list all of them. Canada has socialized medicine and the government is in charge of allocating Harvoni. They have listed the criteria for becoming eligible for receiving Harvoni. Australia is similar. I haven't read about Great Britain but I'm sure it's listed on line. I am a Patient Advocate and read journals, other publications, etc., all of the time.

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jamie Says:

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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Carol Says:

Hi Jamie, YES other drugs don't mix well with Harvoni. I tried to take the antibiotic Cipro and made it 3 days and thought I was dying. I stopped that and continued the Harvoni and felt ok again. Another Dr told me Cipro and Levaquin don't mix well with Harvoni. They apparently work in a similar way. Yuck.

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New Day Says:

I posed on a different site ( I think) that research from Spain showed that Harvoni was made for late stage liver disease and or ppl with transplant. The findings were that patients died while in Harvoni the ones who didn't use lived longer.
I and you all know this is a giant big pharma push I even lost a doc due to what I see as shady dealings. Picking up my med from an undisclosed pharmacy is not ok, especially before I agreed to start treatment.
The med's I am on low dose of pain med and b/p med's should have been adjusted. I do NOT disagree that it's very possible the interaction (s) could have been what caused the bad sides. That however was my docs problem that became mine. I was offered to double up on my med's midway through treatment. That was worse if the sides were from the pain med's why double them that would have put me in my grave.
Focus in my opinion was to push the med irresponsibly. Can we prove it? Not yet in time if there are enough negative results but the medical establishment will blame the patient saying they were sick already.
I don't trust docs I have had more poor results then positive ones. The only good result was where I paid outbid pocket I was treated human.
I am glad we continue to post and share communication is key.
Health and happy healing to all.

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CHepFree Says:

Harvoni can cause all sorts of problems. Had I not been sucked in by my doc's hype on this I never would have taken it. 14 months post and feel the worst I have ever felt in my life. I had NO problems pre-treatment, slight lever damage, normal blood work and now I have tinnitus, constant pressure headache, irregular heartbeat, decreased lung function, neuropathy, dizziness and constant fatigue. I hope any who are considering it to research the FDA reports I have that show hundreds of reports of side effects not listed to include death by only taking Harvoni. {edited for privacy}

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Jim Says:

Day 2 on Harvoni. Side effects after two days are headache, a dull boring headachee, very tired, first day slept on and off for about 12 hours and thirsty, dry mouth. I will continue to post my side effects, God Willing.... The facts with my Hep C, I have no cirrhosis of the liver or signs of it. I have had Hep C since 1978, I had to have contracted Hep C in the Navy, I did drink quite heavily from then until around 2005, other than that I've lived a fairly normal life.. I am in the 12 weeks Harvoni treatment,, there are two drugs in the Harvoni medication which are called --> Ledipasvir 90mg and Sofosbuvir 400mg, these two are combined in one pill which I take daily at the same time. I pray it works and I pray that all the bad side effects I have read about dont happen. As I said at the beginning I will post side effects, I will try to do this every couple of weeks. I decided to take the chance it will cure me and I pray that I dont get all the wicked side efects that I have read about. The VA will see me every two weeks unless I need or ask to see my doctor in between. I will keep you posted..

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Glamma Says:

When you said it affected your heart and muscular skeletal. Are did they find that out. I was in hospital 2 months in May. I was told it was Pancreatitis bout on 2nd hospital admit they told me they think it might be muscular skeletal. You said you were only on Treatment 2 wks. Why is that. I did the treatment of Harvoni from Jan to June 2015. Did Harvoni 24 wks. Treatment was easy. Had frontal headaches and fatigue but during treatment felt well former the most part. Guess after doing Pegasys and Pegalalated interferon this was a breeze. My concern is now that I've been off Harvoni a year I started having more and more side effects that I think is from the Harvoni. Fatigue never got better but then I got major diarrhea in Feb and still having it. Also misleading aches and pains and gastro intestinal problems. Then Pancreatititis. The side effects goes on and on. I now have concerns even though I'm Hep C free that many side effects were found but not shared with the patients. Checking this site often to see how others are feeling. I know I felt grateful getting a 2nd chance and so many people are so much less fortunate with horrific health problems but I still thing I'm a time bomb now. I tried to research the drug prior to doing it but not much was available or if it was it was kept silent. This sight is all the people who already completed Harvoni or for some are in treatment. So we need to share our experience to see how it's impacted all of our life's. Thought we did a Miracle drug but for myself I think it lessened my life span even more. I wish you all the best of luck with an over all good outcome.. I will continue to look at your posts so we can learn from each other. Good Luck to you all.

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ginger Says:

!0 months out I still have all those symptoms.

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New Day Says:

@ glama I am sorry for your ongoing issues, again yet another person with a mystery disease or issues. One common denominator is we were all on Harvoni.
My reason for 2 wks were intolerant side effects. I was close to stoke or seizure. Looking back I wonder if I didn't have seizure in the middle of the night I would collapse to stop the tinnitus and racing hog b/p I just wanted it to stop! I knew at day 3 that I was not one of the people that would have zero sides, btw no doc should ever make that " promise" I was scheduled for 90 days. I called the docs clinic at least 3 times a week the emotional roller coaster in addition to what was going on physically was more then I could handle. Some random doc did return my call and they do that only for notes I have learned so that if we die or have stroke they can have told pt to go to the ER if symptoms persist. I am so tired of hearing that! I forced myself through 14 days with hope that things would improve they got worse or different each day a new issue.
I told the doc the only way I would consider staying on it was to give me a Hosp bed it was not safe for me to be feeling the way I was and be alone, b/p at stroke level. I knew the ins would never pay for a bed nor was my real health any concern so I discontinued.
I left that Dept the comments my NP were making and the focusing on them as a team and their NOTES rather then my over all health spoke volumes. Their priorities were clear. That was my favorite doc we had a 10 year relationship prior to this. What makes a doc turn? Fear I guess, what makes any of us do anything fear, denial and/or greed.
Let's keep sharing our con't journey with one another. The good, the bad and the in-between. Now a year or so on the mkt ppl are beginning to make the association. For most of us its autoimmune. CNS and/ or muscle skeletal along with RA and nurological impairment. If only I listened to my instincts. How can we not be angry? Feeling very betrayed and misled.

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Suzy Says:

It's only been 2day and I can't take it. And if anyone can do it good luck.

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