Side Effects And Lack Of Transparency Harvoni (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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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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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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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 - 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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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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It's only been 2day and I can't take it. And if anyone can do it good luck.

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@ 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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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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Hello all,

My mail box must have been clogged up after a year or so I see this thread. It’s me the OP NewDay. Jan 2018 depression is severe, not sure if it’s situation related or from the med. I can say only it might be coincidence but in my life there is no coincidence everything is a cause and effect. I have never been the same sine I took Harvoni for those few weeks. I swear it was like swallowing a demonic something. Not sure what it is but I am not the same, for the record I still have Hep C the drug company is only richer. For me— this med was the kiss of death. The only changes that I am aware of in a year is thyroid problems I am on meds, more arthritis AND it activated RA I have some autoimmune disease that has me depressed and tired 24/7. So it was a bad experience and experiment I should have gone with my instincts. Dr’s everywhere do NOT push meds on ppl I will never trust another doc again. That’s a hard way to live. It was a life changer for me— a curse like the kiss of death. Sorry to sound so morbid but so odd how things and I changed from that day. Everything was done so friggin shady. Shame on you medical field we are human lives not experiments. Today it’s us tomorrow it will be you. I hope not but that’s a strange thing about life, we are ALL held accountable in one life or the other.

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You are so right on Carol, I found when I googled HepC it was like reading about my health history and I did not have cirrhosis. I had it for more than half my life and only stopped drinking and started Chinese herbs to keep my liver healthy 17 years ago when I discovered I had it, still no cirrhosis. Some people have bad side effects and others don't. The disease itself has so many side effects not just the Harvoni.

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I have constant headaches, i personally would not take it if i knew it was going to be like this.

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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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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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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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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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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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Hello Ladies, and gentlemen. I am not happy to hear that many of you are still suffering such bad effects from using Harvoni. It's now been 6 months since I completed 12 weeks of Harvoni and I'm still hep C free, all labs normal. I didn't feel to well initially but did improve to feel OK again, tho I still have tinnitus, which an ear nose Dr. Can't explain. What I did find out however, is that having hep C masked some other medical issues I was having that I was not aware of. I chalked every unknown ailment up to hep C, as my Dr told me so. I also ate terribly while infected with hep, I looked quite I'll often, very thin and tired. I just couldn't eat. I fell prey to one opportunistic infection after another, and consumed a large amount of varying antibiotics, some of which cause sore and weak tendons, and also tinnitus. (Levaquin and Cipro). So when the hep was gone, i wondered what these new aches and ailments were from. Logically it must be the Harvoni I just took. And it could be true. Dr says more likely I'm suffering from effects of malnutrition and antibiotic toxicity. I also was a serious drug user 30 years back and who knows what else that did to me. I've apparently been suffering from a long term sinus problem that has left so much scarring that I require surgery to breathe effectively and stop the pain in my head and face. I always just thought I had normal allergies and the sniffles.

I had started looking for answers as to why I felt like crap after Harvoni, and I actually found some, that had nothing to do with Harvoni. I still think the tinnitus is related, but it could also be from antibiotics or this sinus condition. We shall see. I also do have stage 3 to 4 cirrhosis, without complications, that I am trying to recover to whatever extent from. My Dr said it would take months to start feeling better from having hep C. So possibly once the hep C is eradicated, other health issues now come to the front of the line and need to be dealt with, issues that weren't so apparent while we were sick with hepatitis. I do hope many of you are seeing some improvement in your health. Its a slow process it seems. I am very aware that I was going to get much more sick if I didn't treat the hep C one way or another. It was going to be a bad death from what I was told. A new liver would not have saved me as long as I still had the disease. I had to try and am glad it did it. Some achy tendons and tinnitus is acceptable to me over the alternative. I know some feel much worse tho, and I'm praying you can treat the effects you are having.

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There are breathing issues that have occured to include respiratory failure based on an fda report I have secured. I personally ezperienced breathing problems and now have lungs that function at 50 percent. I am 66 and 14 months post tx. Had virus for 35+ years. {edited for privacy}

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2 wks since last pill on 8 wks of Harvoni and I feel worse now than before. Body aches, extreme fatigue but most worrisome is the depression. I weaned myself off of Wellbutrin months ago and was doing fine until now. Suddenly I'm crying non stop, irritable and feel hopeless and sad.
Called my gastro doc and his nurse blew me off said the Harvoni was out of my system by now and my labs including liver enzymes were fine and I should call my PCP.

I think that was BS and she knew it. I suspect they dont want to even discuss serious side effects of this drug.
So now i have to talk to my PCP about this and get past her nurse first. I dont feel comfortable with telling the people in the office about this. So here I am still feeling like crap and no doc to help me.

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I just found this out, Harvoni completely depletes your body of the much needed magnesium. Doctors don't realize this because magnesium is stored in the bones so a blood test will not reveal the deficiency. Please google magnesium and how a lack of it causes palpitations, bone cramps, fatigue, lack of energy. I am 10 months post treatment and was having all those I mentioned on a daily basis. When told that magnesium was probably depleted because of the drug I started taking a magnesium supplement; it's been a week now and I haven't had any of the symptoms I was experiencing, not one. Please, I encourage you to google and/or take a magnesium supplement and see if this helps. Wishing you well.

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