Side Effects And Lack Of Transparency Harvoni (Page 5)
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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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Jim. You can always stop Harvoni. That is an option. I am another victim. Tinnitus, headache, nerve damage, lung damage, etc. I am 16 months post treatment. Wish I never took it.

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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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Well here it is day one of week 6 on Harvoni and I am feeling terrible. Kidney pain, leg and back pain, nerve pain, joint pain and swelling and every kind of pain you can imagine as well as some severe headaches at times and I am everyday,, extremely tired. As I begin week 6 I hope that these are symptoms that will go away. My doctor thinks I'm crazy says they weren't side effects listed so he doesn't know what they're all from,, it's quite clear my VA doctor does not believe me. All I know is I feel like garbage I've got tons of pain that I never had before and my urine is so dark it's scary. I drink a gallon of water almost everyday day because I'm so thirsty and yet it's darker than dark. Again another symptom that my doctor says it's in my imagination. If I'd known how bad I was going to feel chances are I would have just lived with the HEP C and took my chances. I just wanted to update my status I wish I had more positive results to post, thank you...
Jim

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I was told depression IS an issue with harvoni last night. I am VERY lucky that I have ALWAYS been a strong advocate for my own health. I have had 3 operations this year plus one unplanned. for an accident . That crushed my foot. I AM the bionic woman now lol. My pharmacy knows me and that I worked in medicine and had to deal with drugs reps that are basically like con people. Look carefully at drugs interactions, I was almost KILLED my fentanyl latches that were interacting with 2 other meds. I stw!! Worse 3 weeks of my life. I was wandering around like an Alzheimer's patient and the hospital kept sending me home saying I was in no danger!!! Now THAT'S DAMN MALPRACTICE!!! Stay strong and positive!!! Good luck to you.

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@Jamie than you, for the advise and for understanding. Some ppl docs included think it's all in your mind... It is but medically induced.once other med gave me tinnitus it was aka the purple pill Nexium. Granted I had an IV drip of it for bleeding ulcers in the ER bit OMG that was my first real migraine.

I wonder if it's b/p related or the med itself now that's coming and going when I was on it it was constant. Awful yes indeed the noise in our head was/ is ringing non stop for today that over but it moves around. There is always something I wake up and it certainly is a NewDay. Not ungrateful that I have been given one just depressed and annoyed that I have to live like this now. I would love to bottle this and give some back to the doc ( I know that sounds mean) I really would t wish this on anyone. No way could they have been so blind and misled. These are ppl that began trials just dishonest. We seem to have issues with honesty lately. Many do not know its new and not their area of expertise never head of it but the ones that did or do know! Shame on them, greedy and still misleading. Be well one day at a time friends.

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newday, about that tinnitus i hear about as a side effect. well i have had tinnitus for many years. this is how i have help get by it. First , silence is very loud! really. Get a fan as back ground noise. They call it white noise. it does help with a steady sound. like counting sheep. It works for a great many people. The other thing I found out is your mind control. When it gets loud during non sleeping hrs. what i do is i think in my mind of a radio with a noise control wheel. as the tinnitus gets louder i think of turning the control knob to lower it. It does work but you can do it and it is amazing when um do it. you can make it louder or you can make it silent. it does work. try the fan to sleep and a dark quite room won't sound so loud. :) good luck on that part.

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Suzy what is going on? What sides are you feeling? I know the first few days were a bit rough. And I would stop based on how is your liver condition. I know I am damaged from Harvoni but I can't say that I am not pleased to be rid of Hep C. It's like a bright spot in an otherwise lousy painful life. I was having far to much pain in my liver area to have considered stopping but then again I only had to do eight weeks and I knew I couldn't have taken it longer......

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It is not worth the long term damage. If one is having horrible effects right out of the box your body is telling you Harvoni is a problem.

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@ Dixie try and give it a few days but when I look back I knew at day3 I couldn't adjust. I kept pushing and drinking a gal of water and now sick as a dog.
Do keep us posted if you were well do t suffer needlessly it's not worth it. Just my opinion.

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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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!0 months out I still have all those symptoms.

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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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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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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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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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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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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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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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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 parent.like 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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