Side Effects And Lack Of Transparency Harvoni (Page 3)

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

I am 1 yr -post 42 weeks of Harvoni. My intestinal problems just completely resolved last week. The aches and pain in my joints is an on-going problem but I can deal with it. I feel lucky when I read about those who have severe damage from Harvoni. Despite the fact that Harvoni cured me, I would not have taken it had I known the real truth about the side effects, many that alter people's lives forever.

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I really like my Dr. and she recommended the cardiologist, that I didn't like at first but he's growing on me. I've been started on 3 medications. 25mg metoprolol to lower my heart rate and stop the skipping beats, 81mg aspirin, and 5mg Crestor for high LDL Cholesterol. They are all the lowest doses fo each drug. Im not sure I want to continue the Crestor. First its expensive and 2nd, I dont think this is whats causing the problem. But I said Id try it for now. Yesterday was the 1st day of meds. The metoprolol slowed down my heart rate but didnt really do much for the hard heart beat feeling and it took several hours to work and then my heart rate was back up high again this morning. I took the med earlier today at my Drs recommendation. I had some extra blood work done for the heart (including the CPK [CK] that you mentioned in your first post. Its called Creatine kinase or creatine phosphokinase) plus a few others and actually all came back normal. I've been off the Harvoni for a month so maybe it was up while i was taking it. We've never run that diagnostic before tho. How did you get the heart muscle damage diagnosis? I was told by the cardiologist that the only way to know for sure of the heart muscle is damaged is with a biopsy, which he said he wouldn't do. The extra blood work however (being normal) indicates that there may be no damage to my heart muscle. I'm praying all these symptoms disappear at some point.

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I think Harvoni is a wonderful drug if you're Hep C positive. Ofcourse there's going to be side effects. You didn't mention your age. Male or female. I'm thinking you may be going through menopause. I don't know anyone that had reverse reactions from Harvoni. I know I'd rather go through a few weeks of discomfort that get Hep C cirrhosis ! Maybe he can lower your dosage. If your doctor prescribed it to you, you're extreme lucky because it's a very expensive drug. I'm talking like $100,000. If it's bothering you that much, cut back yourself

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A heart biopsy? Why not an extra or
EKG? An ekg would tell you exactly what's wrong with your heart muscle or an X-ray Maybe you should switch cardiologists.

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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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@presionbrown, you don't know what you are talking about. There is no cutting back. This site is for ppl with experience.

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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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There are so many heart problems reported to the fda by those taking Harvoni. There have been reports ofcardiac arrest, inflammation around the heart and heart valve damage. Be careful.

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Hi CHEPCFREE,

You've mentioned some FDA reports about the damages from Harvoni and I'm wondering where I can read these.

Thanks

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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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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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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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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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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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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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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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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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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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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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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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