Side Effects And Lack Of Transparency Harvoni (Page 3) (Top voted first)

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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.

109 Replies (6 Pages)

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97

I did harvoni when it 1st cane out in '10. I was stage 3 but stable with a great prognosis from my Dr, hep c free. No alcohol, worked out until an esophageal verises. Now suddenly stage 4. My personal opinion is the medication does damage to the liver that BIG PHARMA wants you to know.

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101

I am 2 years post tx, I am still suffering, headaches, bones and muscles hurt, feet are numb, low back pain is horrible, fatigue, brain fog, and who would not be depressed after living and feeling good, to this. I went in working and now I can't do much of anything, my life is full of physical pain. I can't afford alternative medicine and no Dr will admit taking Harvoni did this to us, or it changed our immune system so much it is now attacking other parts of our bodies. Makes me sick to see the big pharm Gilead making millions on this one med and taking away the lives we once had

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9

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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10

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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18

!0 months out I still have all those symptoms.

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24

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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26

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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29

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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31

CHEPCFREE, what kind of lung problems? i been cured 12/22/15 and now i have trouble breathing but i also have ascites so that could be it . addition of fluid in the chest cavity pushing the lung to a smaller
size. have trouble


with getting air into lung almost to passing out. scary feeling not breathing.

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34

Great message. Im in aust gen 3 ,63yrs old emphasemia worried about tx getting breathless depression ect ,dont really trust lot of things i read ,if any one knows anything regarding side effects for older people prob had it 40yrs. Thanx

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38

My Dr. just shared this post with me so I wanted to share my experience. I started treatment with Harvoni on May 13 and finished on Aug 7. I am now negative for HepC. Initially the only side effect I had was diarrhea, but that got better after a couple of weeks. But 6 weeks into treatment I started experiencing irregular heartbeats, like my heart was skipping a beat every so often. It was infrequent so I didnt think much about it at the time. But then it started to happen more often. By the time I went back to the Dr. for the 8 week blood test and to pick up the last month of pills the skipping beats were happening almost every day. My pulse rate and BP were normal tho so we decided to finish the course of treatment. But now, one month after Ive finished the Harvoni, its really gotten bad. The skipping heart beats are all the time and it feels like my heart is beating very hard. My BP is still normal but my HR gets elevated a lot. Although there is some contradiction. Ive been keeping track of my HR and it gets up to maybe 100 when walking fast for a while, but then goes back down. ive counted as low as 65, when I first wake up and around 75-85 during the day. Anyway, I had a holter last week for 24 hours and the results are confusing. It says my minimum HR was 101 and max at 157. I took it several times during this 24 hour period and got several counts under 101. Ive also had 2 ekg's, one on a treadmill which showed some irregularities. Im getting an echocardiogram tomorrow with the cardiologist who put on the holter. It looks like i will need to be on heart meds now. Its pretty upsetting. Nothing was different during the period I took Harvoni except those pills. My primary Dr. is convinced its the Harvoni that caused this.

Jo

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40

It gives me hope to hear your doctor is reading forums about Harvoni. While on treatment I had a few of the "Harvoni headaches". They weren't like any other headache I ever had, and thankfully I rarely had headaches. When I had that horrible sick headache my blood pressure was elevated. It wasn't high because I am normally low, but it was high for me! The day after I finished my treatment I was in the ER with strange chest sensations. I felt it was stomach related but to be safe my liver doctor's office had me go get checked out. I am about 20 months post treatment now and am left with daily hand and foot pain. My joints are creaking and I hurt. I am thankful to be Hep C free after 40 years and hope that things improve for me.

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45

precision brown - Have you taken Harvoni? If not, I suggest you do some comprehensive research before giving advice or even your opinion. Most of the people who have posted here know what I'm talking about. You don't.

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47

Precisionbrown, Im assuming you are talking to me. I thought I mentioned my age, but anyway, Im 59 and female and NOT going thru menopause. That already happened. I probably will get a second opinion about the heart muscle and biopsy being the only way to diagnose damage to it. For now, Ive improved somewhat. The heart skips are still happeneing, but its not worse and may be a bit better. My HR is lower so I feel better. I started the meds on Friday and by Sat. I wasnt feeling well at all. It was scary since it was the holiday weekend. I had pain and pressure in my chest AND back and lots of skips and heart heart pounding. I even had a weird feeling in my ears and my head was tingling. I was so uncomfortable. But yesterday I went for a really long walk and I felt ok last night. Today I repeated the walk and still feel better. So I think the walking helps or im just getting used to the meds. Im still kind of achy tho. I'll check back in with my doctor and maybe call the cardiologist tomorrow.

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54

Just keep posting, may of those doc's along with the company are simply LYING! Did some of them not know? Possible but they should have Aires in the side of caution. Hey someone had to be the first ppl out of the gate and it was us.

To the person who feel great 2 wks post treatment great we wish you no harm. That said May of us began to find symptoms a few months post treatment. Fatigue, caugh, or hopefully you are one of the lucky few give it a year symptom free then let us know please we like honesty here something many of us feel conflicted were are doctors unaware or just simply out and out lied.

Wish there were more VETS on here that a huge % of their slcustiner base, the VA really got duped as if they haven't been through enough already.

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72

on magnesium I am taking Magtein,,magnesium L Threonate
2000 mg 3 times a day,, it helps with leg cramps

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75

I took Harvoni for 12 weeks (Feb. to May 2016), developed heart palpitations (I'm 55). Doc did complete blood work up, EKG, home heart monitor, ultra sound of my heart. All came back "normal" although one doc did confirm some extra beats were detected with the Holter monitor. I just stopped focusing and worrying about the palpitations and they have gotten better. I'm VERY active and I really don't even notice them anymore except at bedtime when I'm relaxed...but, again, I no longer focus on them; it seemed like the more I concentrated on them the worse they felt. I literally taught myself to ignore them and continue on with whatever I was doing. So, with that said, I'm doing really well all in all. Hope everyone else here is finding more peace with any lasting side affects you have. Wishing you all well.

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77

New Day and other harvoni survivors,

This was the worst medicine, I thought I was dying after 8 weeks. My Dr. left it up to me to complete the 12 week dose, saying it may not be cured unless I finish. I my skin really looks bad. I had beautiful skin, for my age am 65 now, keyword had, I have lost hair, and my hair is dry and changed texture somehow. Nothing fixes it. I had severe migraines, extreme fatigue, my blood work (I am also a kidney patient PKD) shows that I'm still clearing creatine, but my blood work went to hell after 8 weeks on that orange pill. I was beyond miserable. I am still dizzy when I look up and down, sometimes it's scary. I would NOT do it again. I still feel worse not better. My liver is still inflamed and I hurt. Everything I read said how great this drug is. I'm happy for you if that is true, and you were not paid by the drug co. to endorse it. They say my load is 0. I feel worse and would rather have hepc. My load was way under a million. My skin is worse, not better. I have tons of white spots all over arms, shoulders, upper chest before my neck. Yuk. For me I would NEVER do it again, feel like it ruined my life. I would of stopped at 8 weeks but my daughter begged me to remain on it, so I went the 12 weeks. Off since Nov 2016, still feel terrible. Waiting for results from a CT scan now. I also have extreme swelling, knees, kidneys abdomen. Blood pressure high. Sensitive people BEWARE. Hindsight is 20/20. Hope you have better luck. My migraines finally subsided after a few months off, but my ears are ringing My body much worse. My blood work after being off harvoni for awhile, went back to normal. Viral load 0 for now.. May God bless and protect you.

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78

Yes I have been off of Harvon for 6 months and wish I would of never taken it! Sorry ass gi doc would not listen to my problems! So i hope that you stop take this med i went from a oil and gas worker to not working at all! I has messed my life up. Docs will not admit they wrong so My life ruined! May God help us because no one else will

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79

Brenda, Are you the one that posted ealier about taking a magnesium supplement? I started taking one after I read that and I really do think it has helped. I still dont feel 100% like i did before, but i believe the PVC's are pretty much gone now. I also chose to just try to ignore the symptoms, but when my heart was skipping every few beats it was really hard to do. Im still taking metoprolol but have lowered the dose to 6.25mg e/o day, over the last few months. I probably could stop it altogether now. I have some other rather minor symptoms that I didnt have before like muscle aches, and my chest sometimes still feels tight, but for the most part I feel ok. Im 60 so I imagine a lot of new symptoms appear just because Im getting older. Im relieved I dont feel like I did several months ago. It was pretty bad. I feel bad for those still experiencing a lot of symptoms.

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