Side Effects And Lack Of Transparency Harvoni (Page 4)

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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REPORT

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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Go to your PCP. Gastro's are turning their backs on us and have done so to many. They have no idea of the long term consequences and for whatever self-centered cover their butt reasons, they state because it is out of your system, it cannot be causing problems. Harvoni changes DNA with unknown consequences although in time it will all come out. There is concern being expressed in medical journals already that these drugs are causing liver damage and failure, the very reason we took Harvoni to avoid this. I have the FDA reports showing many side effects not listed and all that people are complaining of here are listed by many others. Harvoni is not safe for all and it seems to be a crap shoot. I am much sicker now than I ever was before taking this drug. There are many who have lost their lives but doctors are not talking about it. Best of luck!

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Great message,i agree dont have much faith in system im in australia.

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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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I took Harvoni for 24 weeks. I was fatigued, had body aches and headaches, but after doing a previous treatment of Pegasus, and Pegaleted Interferon which I was a non-responder too on both treatments, Harvoni was very well tolerated. For years I had side effects but nothing compared to other treatments mentioned. I wish you well. Sadly I've completed Harvoni in June of 2015 and about 6 to 9 months after completing Harvoni I have more health problems now then I ever had. I believe it's from the Harvoni. So if you are feeling bad on the Harvoni wait until your done. It's a living Hell. I pray you will be a lucky one and feel great. I did feel better at 1st but kept asking when I wouldn't feel fatigued etc, but the day never came. If I could do it over I would of lived out my life with Hep C because I think I would of lived longer just coping with Hep C. Now I pray to just have a good week. It's a daily struggle. I don't want to depress you but do be prepared as the outcome might not be what you expect. I pray you will feel better. The end result you will be Hep C Free and that will make you feel great but once you start getting every side effect imaginable it will question your decision. I was so happy to do the miracle drug I neglected to try to research. I did some but the drug didn't share any negative feedback other then minor side effects. It's the Post effects that continue to keep getting more and more. I can tolerate a lot a lot and have a high threshold for pain. We are all different how we cope with health issues and pain level but I'm sure by reading all the posts on here and so many sharing their stories you are aware of how Harvoni has affected our lives. My heart goes out to you and everyone on here. I hope the outcome is good for most but I think a lot we suffer from now is irreversible. My prayers are with you all.

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I agree with you. The drug was not studied enough and the post treatment of Harvni is worse than when I was being treated. I'm almost 10 months post Harvoni, and I am a mess. Could not figure out why I've been so sick for six weeks with no relief in sight. I've had a very high fever for two days and when the fever breaks, I'm fine, like I was never sick a day in my life, then just a within two days the same thing happens again. Fifth time in six weeks that I battle the symptoms. To top it off, I just learned I am in kidney failure. Never had a problem with my kidneys ever. I am so disgusted with this drug I can't begin to tell you. Addition symptoms are pain all over my body, can't as much as walk on my legs. Surging pain all over my body. I contacted Gilead and gave them the details of what I'm going through. I contacted the FDA and left a report. This is not what I bargained for at a price tag of $96,400. for a 12 week treatment. You would think that studies would include after effects of the treatment. I feel like my auto immune system is not capable of fighting off any type of illness. My whole immune system is compromised. My Hep C doctor fails to return my calls after notifying them of the conditions that I'm going through. Think twice about taking this "Crue" and do your homework.

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I was in the study trial. I was diagnosed in 08/11 started trial in 10/12. I am genotype 1a cc. My fibrosure F0. I was one out twelve. No liver damage. Big Pharma lied and i have been watching the boards.
I am 4 yrs out and . My understanding a little over 1500 was in study trial before it hit the market in 2014. About half in the trial received placebos. This drug was fast tracked. No symptoms reported by me or anyone else now since April 2016 does Gileod sp have to legally report.
The above is my understanding.
What i know about me, i suffer and i wasnt this way before Harvoni. What you feel is real and i have tried 4 times to report my symptoms to my clinical trial nurse in the past year and have yet to be seen.
My symptoms have included; ringing in my ears, constant, have vertigo or dizziness with positional changes, laying to standing, sitting down etc. I weigh 103 now, i was 156 min. when i started the trial. I have very little appetite now. Severe pain in knees and recently neuropathy. Diffuse pain in my legs and fatigue. Productive cough and brain fog.

Be careful of people working on these boards that work for pharma. I took sobosofir sp again and 5885. Lov. Didnt have a name yet.
Why did big pharma take healthy person and give them a study drug? Better yet what kind of doctor would do this? Money. I said yes to it. I own my decision. But unless you have cirrhosis and or liver failure, i would wait.

This is my first post on symptoms for post tx and i am wasting away. I had no other dx before Harvoni except for anxiety. I am rolling with punches and doing all i can on my own. Medical community has turned their back to me a couple of yrs ago. I only want to now report my symptoms to nurse and drug company.
I will check in later today. Don't take this drug unless you have too. My symptoms are only getting worse. I will answer anyone's questions.

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Here is an email address to Gilead [[email protected]]. All of us suffering need to send as many messages as we can to them listing all our during treatment and post treatment symptoms.

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Brenda, which Magnesium supplement did you take and how much? Ive been having PVC's since half way thru the Harvoni treatment and have been reading lately about the magnesium. Because of some of the posts i read, i ordered Magnesium Taurate. Its 125mg per capsule and it says to take it 2 times a day. But I had bought some prior from the local store and it was 200mg of Magnesium Oxide. I was taking that one 3 times a day because of a recommendation from a Dr. I found online (he said to take 600mg of Magnesium a day). But just changed to the Magnesium Taurate because i read it is the only thing that gets rid of the PVC's. I just dont know how much to take now. Because im not sure f the 2 Magnesiums are different somehow and the Mag Taur. is stronger?? Im still taking the L-Carnatine Fumerate because that same Dr. said it will reduce PVC's. Im desperate. They are driving me crazy!.

Jo

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I agree with you in every way. I'm struggling to get through this. I have contacted my Hep C Dr. and my primary care Dr. and said this is not right, They are testing me for everything possible. I know what it is, but I don't know how to correct my immune system or any other part of this. People don't understand the magnitude of these after treatment illness. I am in complete symphony with you I do understand you pain.

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I am in so much physical pain with my hips, back, feet, legs and wrists. I can barely stand the pain and resort to pain meds by the end of the day every day. I am sick of feeling this bad.

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

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This is a very dangerous drug, my Brother has been very sick every since he took this drug, he had bad side effects and they still kept pushing it. He has been in and out of hospital every since. He just had major surgery yesterday to remove the sack around his heart. I can go on about what this drug has done to his health.

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Debbie, how long ago did your brother stop taking Harvoni and when did the symptoms start.
And anyone, Im trying to find out if these symptoms will ever go away or if Im stuck with them for life.
Has anyones symptoms that they got from Harvoni gone away and how long did it take and what did you do?
The only symptom i have really are the PVC's. Although generally I feel more tired and have a lot of aches and pains, a lot around my neck area. but i cant really for sure say if that came from the Harvoni. i was in a car accident April 2016. i think some of my pain is from that. its too slight to treat, but annoying just the same.
My last dose of Harvoni was Aug 4, 2016.

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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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I just wanted to tell you that for most of the people I've spoken with the side effects were not THAT bad. It felt to me like I was "under the weather" most of the time. It was the most horrific time in my life (other matters) and being on such a strong medication was harder because of the trauma. But I did get through the 6 months; cleared the virus in 5 weeks. It wasn't fun, but bearable. Now the interferon/ribavirin (which I tried 3 times and each time my medical people took me off. The sides to that combo almost killed me.

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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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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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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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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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