Side Effects And Lack Of Transparency Harvoni (Page 3)
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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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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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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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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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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 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 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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Great message,i agree dont have much faith in system im in australia.

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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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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 took Harvoni for 24 weeks. I finished in June of 2015. I'm hep c free. I was a non responder to previous treatments back in 2001 and 2003 when I did Pegasus and Pegalated interferon. Did one for a yr. and the other about 4 months and was taken off as my viral load never went down. It was a big slap in the face so once I heard about the miracle drug I thought I'd try the Harvoni. I wish I would of never done it now. I feel worse now then ever. I was in the hospital 4 times in 2016 with High Blood pressure. Was 220/110. Still can't get BP stabilized. Heart flutters and rapid heart rate is still a concern. Even had Pancreatitis. I have so many side effects now and I do think it's from taking the Harvoni. I felt fine after completing treatment but as the months went by I started getting migraines, back and neck pain, leg cramps and so many other side effects. Then after about 8 months of completing Harvoni it all hit me like a ton of bricks. I seem to have to deal with daily issues. Seldom have a good day anymore. Sadly I never felt worse. Was on medschat but went off several months ago. Was so depressing to see so many of you suffering the post side effects. They should of waited to start people on this treatment. For the cost of each pill daily we can only imagine what is all in that pill. I should of researched it more before beginning Harvoni but was so excited about starting treatment I didn't! I so regret that now. I have never even been back to my specialist since I've done that medicine because I've been so upset. I had a lot of faith in my Dr. but now I know they were just in it to win it... Not win for us but for the Drs., Pharmaceutical co. and even the labs all working together. It's very depressing... The only reason I'm sending this today is because I got an email today from medschat asking me to please share my experience and asked me to be more specific about my treatment with Harvoni with others so I'm sending this. I will look on here now and then but it it hurts me to see how all of us had our eyes closed and how we were blindsided. I wish I had better news to share with all of you but I wish you all the best and I pray for a good outcome for everyone of us. The damage to our bodies has already been done and I don't know if it's reversible. My heart goes out to all of you.. best of luck to you all...

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Yes, have your heart checked out. Heart fluttering has been experienced by a number of patients, many long term. I am two years post and still have that issue. It started while on Harvoni. The doctors have not found any thing specific but it is likely some nerve or electrical issue. It is best to have it checked.

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Took harvoni for 12 weeks, hcv free now...chest fluttering started about one month in, I'm now 9 months post and still get the chest fluttering and when it's happening, my pulse seems erratic. Probably should have my doc check it out... weird.

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Luna, Im sorry you are going thru this. Since my last post I havd seen another cardiologist, had another holter on for 24 hours and this new Dr. basically said its nothing to worry about and took me off all the meds. However 3 days after weaning off the metoprolol I had to start it again (this time only 1/2 tab, 12.5mg, a day) I was experiencing a severe jittery feeling and my heart seem to be racing all the time. I still have the PCV's (I couldnt edit my last post when i called them PVC's, lol) where the heart skips a beat, but they arent as bad and with the low dose of the beta blocket it slows my heart rate down a bit and i just feel better. I would recommend seeing a cardiologist. Ive also experienced a lot of muscle aches and pains, that I didnt have before. i take 2 advil a day now and it helps. I am so mad that Harvoni kept all these side effects a secret. But for now Im doing ok. im learning to live with it. Not much else i can do.

Jo

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I'm at almost 24 weeks post my 12 week harvoni treatment and my symptoms are getting worse, daily migraines, brain fog, my heart is fluttering and I think I had a mild stroke w/ bp at 169/113/103...feet hurt terribly, right foot doesn't have much feeling, my hands are cramping up on me, fatigue, mood swings, etc, you name it i have it....feeling confused and ill and all around me also. I think it's over so i should feel great...where do we go from here?

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Well Ive been having some rocky times the last week since i started the meds. I didnt think the metopropol was working because I was still feeling the skips a lot in the evening so my Dr. suggested splitting it in half and taking it 2x a day. Well that didnt seem to work either so a couple days ago she said to take a whole pill 2x a day. i had a terrible time that night and still felt rather awful yesterday morning. Plus i was having trouble finding another cardiologist, so at the recommendation of my Dr. I went to the ER, complained of irregular heart beats and they did a full workup on me, EKG, xray, bloodwork, and I was hooked up to a heart monitor for abut 3 hours. I could feel the PVC's happening but near the end of the 3 hours the Dr came in and said he did see ANYTHING on the monitor. I told him I could feel them and he said I wasnt having any PVC's and he didnt know what i was feeling and that everything looked ok. WHAT?? I came equipped with all the tests including the results of the Echocardiograam which showed abnormal readings. OMG I was luvid and the heart monitor started jumping all over the place, haha. The Dr. left and never came back, but i had 2 nurses that came in and confirmed that I was indeed having PVC's and they had showed up on the printouts they gave me. Well, as incompetent as that Dr. was, I still hot my referral to another Cardiologist. Im sure that referral cost me a LOT.The last nurse that came in explained PVC's to me so i could understand it and actually did make me feel a lot better and assured me that I wasnt dying right at that moment. The Dr. was so uncaring. I hope his referral has better bedside manner. Im pretty sure Ive made this all worse with anxiety so Im going to try and work on that. Strangely this morning I felt better than I have in weeks. Maybe im just not thinking about the symptoms as much, which are still there. New Day, what is going on with you? Are you on any meds, still having symptoms? What did you tests reveal?

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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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I am two weeks past the 13-week regimen. I was lab tested to be free of Hep C virus and with normal liver function after three weeks of taking Harvoni. I do not recall having any side effects.

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Yes, you can all say "Do your research", and believe me I wish id have looked into Harvoni with a fine toothed comb. Im usually very diligent about researching things and spend days, weeks months looking into it before acting. The reality is that I was on the HepC forums for over a year before I decided to take it. i read countless posts about peoples success with the drug and NOTHING about it affecting the heart. obviously I didnt look far enough, but this must not be all that common or I would have seen at least one person mention it right? Im pretty upset this has happened. I dont even know what it all means. Am I doomed now? Im pretty scared to say the least. My Dr. says the anxiety will on,y hurt me, but when im having constant symptoms to remind me I might drop dead at any minute, how do you deal with that?

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Precision Brown you have to take the full doseage of Harvoni. Not sure where your getting your information from. I look at it this way. User beware. Be educated. Know your liver status. If your going to treat then treat following all rules. Drink your water and rest well. Do not take HALF doses and suffer lasting side effects and not have killed the virus! That is crazy. If your going to commit to treatment then do it correctly for the best outcome. Otherwise don't do it. I am closing in on two years post treatment.

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You can put in a Freedom of Information Act request with FDA for a fee to get the reports.

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