Harvoni Side Effects (Page 11)
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I have been taking Harvoni for 3 months now and am having nerve pain in my legs and lower back pain. Is anyone else taking Harvoni having any of these same side effects as me? Please help if you are able. Thank you

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REPORT

I just saw a new pain management doc this week. It seems that NOW there are a lot more people who are going for nerve blocks etc due to Harvoni I am finally happy to say that all my medical is out of that hospital where each Dept covered for the deception of the GAstro Dept.

Amazed at how we were the victims and got and continue to get blamed.

If any doctors are reading this please think twice that his medication was made for ppl in LATE stage liver disease, pre transplant. It defies logic with all our negative life changing sides they would still push this in people. Big pharma at work, be careful do your research this is NIT a safe medication!

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Hi Jim
Dont give up. There is an answer to your problem. It just has not come to light yet.
We were duped into being unwitting guinea pigs but we have to believe it will be solved.
I have not walked down the street for 3 months due to a neuropathy fall. My injuries are mysteriously not getting better. Yeah right its a **** mystery.
This might sound like a crazy idea but how about consulting an infectious disease specialist in HIV.
I know we dont have that but I have read about strange miochondrial toxicity symptoms turning up in HIV patients who took antivirals.
It is accepted in that client group that antivirals have long term strange side effects and they treat it.
It may not be the answer but maybe somewhere to start ? I dont think you would be dismissed if you consulted someone who had dealt with antivirals for a decade.
Just a thought.
You WILL get to the bottom of this.
Its a matter of when.

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Maryann
I could not agree with you more, I was talking with my wife about that very same thing just this morning, as my doctor referred to me as pre Trans plant.
I have had back pain sense 1983 the added issues seem small compared to the alternative

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I meant to say Gilead (not Billy dont know where that came from, sorry my mind is just not right) should be ashamed of themselves as well as the FDA... I was also reading where Dannyneedlesca wrote he is taking Hatton? I have never heard of it nor was I able to find any information about it... But LY, thank you for giving me something else to look into. They've done blood work, ultrasounds, catscans and all have been normal yet everything is the size of a balloon, the doctors haven't a clue, they wont say it was or is the Harvoni, they just don't know. I have also been recently diagnosed with 2 sinus cavity cysts, never had these either, but the facial pain is like no other. My biggest concerns are the swollen joints, feet and ankles, the feeling of my skin ripping along the top of my thighs which I've been told is related to my very bad nerve pain going down the leg as well as the constant hand, knee and back pain and last my memory loss. I am forgetting everything, I don't mean like oh where are my keys type thing, I mean I can be talking or writing and forget what I am talking or thinking about... What makes all this very, very scary is I am tired, depressed, always having to fight to see my doctor and when I do all I hear is that nothing is wrong when she can clearly see the visible part, but cant tell me what's causing it or why and for the parts she cant see it's like I am not believed, it makes it more depressing and hurtful because there is definitely something wrong yet NO ONE will even consider the Harvoni.. I am tired, all the time, I have headaches all the time, I am depressed, combined with all these other issues what quality of life is it. Being Hep C free and having all these issues is no bargain or trade off.... I wish someone would help me, some doctor would care enough to say I care, I know and I want to try and help you feel better but no, they don't care, Gilead doesn't care, the FDA doesn't care, who cares but me. I have no answers or tools to fix anything... I wish I never did this. What life I have left is looking bleak at best, now the VA and Harvoni are giving me the royal screwing, again, not helping and not even listening, what a crappy hep c free life...

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The nerve pain in my legs started when I was three weeks in taking the harvoni , I called the company and talked to the docs there of course they said this was not a side effect. I finished my 8 weeks and that was ayear ago and my liver is clean but the pain in my legs is excruciating. I am going to see a neurologist which was suggested by my primary doc who said maybe it was a side effect from harvoni. I did report this to the FDA and suggest anyone with major issues from this medicine do the same so it can be investigated.

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I had the same issues...my doctor did all kinds of test and nothing showed up..even. went to physical theropy...my dr. Said my vitamin d level is extremely low and put me on 55,000 m.g. of vitamin once a week for 12 weeks...I'm now 7 weeks into the vitamin d I see its helping my pain...hope this helps...God Bless You

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It seems that there is a lot of people with issues about harvoni.
But happily that's not what I'm going on about
Its my auto correct, in my last post I apparently was not watching well it changed harvoni to Hatton and a few other small changes that I just let go.
I hope harvoni is not responsible for all of side effects I have read, I all so hope that should it be found that harvoni is the cause that Galead or any company licensed to manufacture it for those who have had to reach out for generic brands well step up correct and we'll compensate those that have had extreme issues.
Bless you
Many thanks to keithn8eb

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I am aware this it not an antibiotic and certainly not taking it for a UTI and at that time never associated it with a UTI just thought I had a mother UTI. I only thought that it have some time to do with the pain I am feeling in the area of my kidney just the right side when ER Doctor did not fund any issues in my kidneys, it may be a stone. Any I dint thunk that even if it was a know side effect it would not have stop me from taking the Harvin.
It's simple the benefits out way the risk
Thank you for the reply I honestly did not think anyone would even read

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Danny, one comment, Harvoni is not an antibiotic so it should have no effect on a uti. However as you point out Harvoni is a very new drug so nobody really know what effects it can have on other bodily systems.

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I'm on my last two weeks of Hatton and have been dealing with what I thought was a kidney infection.
So I went to ER to check it out they found nothing, it was normal all the down the list. But viral load was 0 at 4 weeks.
What is not so funny is that it was a UTI that kick the virus into high gear. Which did not help my cirrhosis.
I though I would start treatment with a UTI and end with a UTI.
It is important to check on the side effects being a relatively new drug, little is known about the long term issue.

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Gilead should be held accountable for purveying this poison and not revealing the full extent of side effects.
Can they be sued as other Pharma Co's have been?

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I am so sorry to hear this. FYI I wrote to the president of the company. After 8 months of their "meddling" I got a letter cold as ice back saying report side effects to FDA and or we consider this case closed. Translation Gilead doesn't give one s*** about any of us, something we all know NOW we got duped. The doctors are in bed with the company and Gilead knows what's really in this poison. Viscous they show NO empathy for any of us, it's all about the stock and then NOT us. I would first CHANGE doctors if that's the doc or hospital that put you on this poison. NOW they all work together to cover up for one another. Find a new team and maybe just maybe they can reverse the damage. Of course your health comes first but if I were you I would also go to every lawyer I can (most are scared to death of this company so far) and push. Try and get someone to take their case and set a precedent so that Gilead is held accountable. This Corp giant isn't helping humanity, they are acting like parasites that exploit ppl that have ONE life if it were there would they like to give you back some money for you pain and suffering? Continue to keep us posted, we will keep you and everyone else in our prayers who is suffering from this awful over sold garbage. May you find peace and healing.

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Thank you all for your concern I was rushed again to the hospital this time my foot swelled up the size of a football and no one can tell me what's wrong. They tell me my blood work is fine they tell me that there's no blood clots they can't understand why my joints are swollen does that no one can understand it. And I'll tell you what it's the harvoni. Plain and simple it's the harvoni the pain in my back my lower back down my leg my joints they're all so bad it's killing me I can't even walk my right foot is the size of a football and no one can figure out what it is causing it. None of these issues I had before using harvoni. I feel sorry for people like me and for people like Sady59 looking for answers that we cannot give. All I can tell you is if I had to do this harvoni treatment again I would never do it. Never ever again the side effects I'm having post-treatment are worse than the ones I was having during the treatment although the ones during the treatment were quite bad as well. I should also mention that I'm having severe memory loss issues as well as headache issues as well as being so tired it is unbelievable I just don't know what to do anymore because when your doctor says your blood is ok there is no blood clot after doing an ultrasound and we don't know why your foot is swollen what am I supposed to do I can't even walk on my foot so I am at a complete loss. Billy should be ashamed of themselves and so should the FDA. I really am so depressed over all of this it's ridiculous. So if anybody asks for a recommendation I would certainly be negative but I would never tell anybody to start or stop based on it but I can tell you that the side effects I'm having her brutal I just cannot even tell you how much I wish I would just go to sleep at night and not wake up because I can't keep feeling this way it is just not fun my hands are so sore typing this is killing me. Anyway I wish Sady59 the best of luck as well as everybody else going through this

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I am into my 5 th month of using Harvoni and have been having pain in the middle of my back for the past month. Over the last 3 days it has moved into my lower back and has kept me awake at night and I am finding it difficult to walk today.. should I stop taking Harvoni?

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Hi there, I am into my last two weeks of Harvoni after 6 months and at 7 weeks after beginning the course I had cleared the virus, or virus undetected as they say...for a few weeks i had intermittent headaches as well as aching lumbar pain which ive dealt with for years...added to this cocktail of a dismal state I had been getting waves of nausea as if I had travel motion sickness or so...at about 8 or 9 weeks this has all passed....now im feeling better, the depression has eased somewhat and in another twelve weeks im hoping for a virus not present pass on my bloods and ultrasound....xo

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Hi Jim
I really feel for you. What an ordeal.
Perhaps you could fire every doctor you have seen so far and try to find someone else to help you. Easier said than done I know.
I hope you find some help soon.

I understand the frustration. I was told by a doctor that I was sick with another illness as it was not harvoni causing my issues. I was also villified on a hepatitis forum for being critical of Harvoni.THIS is where we are at.I think it is going to take a long time until this is recognised.
I believe you Jim. For what it is worth. This is not in our minds !
Thanks Keith and Maryann for the FDA info.

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@Jim we are so sorry to hear this. I say "we" by now we have become somewhat of a community. Many of us know each other from other sites.

I would encourage you to write the FDA, I wrote the President of Gilead told him my REAL story phases of my life. Addiction, to recovery to forced Harvoni attempt. The depression and anxiety seeps through my pores and I can't seem to get help. My insurance a midi aid HMO doesn't pay for therapy. There is a wait list almost a ur at a post grad center what good is that?

That's not going to cure you ( the letters) but if enough get to the FDA they may I say may yank this from population the damage it is doing MUST be made public, non stop. Regarding your healing, I can't imagine the denial you are getting from your docs. I also now have RA and my pain management Dept has been doing everything to get me out of there. It seems there was an investigation regarding Harvoni unfortunately no one gets held accountable for anything these days only is as whistleblowers. That's not fair, it's unAmerican but if you knew this prior I know you wouldn't have gone on treatment. You may have helped another person. When and how to educate the doctors, hopefully some might read this as we thin out. Yes we have value, if one life is saved from suffering we succeeded. This is a form of Poison to bad we were exploited. We wish you health and healing. Please keep us posted yes we all matter.

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How long I have been done with harvoni for 2 months now and since I've been done I've been hospitalized one time emergency now because of severe Facial Pain and swollen joints. My ankles are swollen like a balloon I am in severe pain with Facial Pain and joint pain as well as nerve pain down my legs. These are all during treatment pains and they are worse now then they were during treatment. The post treatments symptoms are worse than the ones I was having during the treatment period while I am hep C free I am suffering from all new issues and none of my doctors want to listen to me. They all tell me I'm imagining things and yet I'm not I feel like garbage I have a hard time getting out of bed I have no energy and yet I can't sleep and the pain in my joints so long with the swelling prevent me from doing anything during the day. Before I started my treatment my worst symptoms is that I would be a little tired but I would still be able to function today I can't even function. What a mistake it was for me to take this because now I have absolutely no quality of life. I also have no doctors that give a crap about anything I said. I am totally totally depressed I am in so much nerve pain down my right leg as well as my ankles swelling up and my right foot swelling up to the size of a balloon I have been on constant antibiotics for infections that I never got before and none of them are going away. I have no idea what's going on except to say that I was never this sick prior to harvoni and no one wants to listen to me. I blame harvoni, I blame the FDA and I blame Gilead. They knew exactly what they were peddling and all they care about is the dollar yes it clears that hep C but it also creates so many other side effects and all they care about is the almighty dollar. I can't even blame the doctors because I don't believe the doctors were told the truth. But I blame the doctors on if they don't believe the patients like me when I go in and tell them these are on the issues and they are related to the harvoni. They run all these kinds of tests and they say that they find nothing causing these issues, well all I can say is something is causing them. I'm telling you I believe the harvoni masks the symptoms. All I know is I wish I never took it it has totally ruined my life,,, wishing that I dont wake up because of all the problems I'm having today... I don't have a life that's worth waking up for..... No I'm not suicidal,,,, but I just don't like living the way I am,,, I just hate feeling sick and having all this pain and swollen joints all the time with all this pain,,, It's disgusting what they have done to me and the FDA should be ashamed of themselves for allowing this drug on the market. I just wish I could find a brave enough attorney willing to sue these guys in Vero Beach Florida,,, The VA allowed this to happen as well to many of us Veterans

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I also have the FDA reports for the last 18 months, and while I never counted exactly how many different side effects have been reported, it is roughly 30-35. A lot were different types of pain from annoying to debilitating. Many reports of heart/chest pains, lung infections, sleep problems both too much and none at all, blood pressure problems, at last count 17 deaths, and many more. The interesting fact is most claim these side effects continue after treatment has been discontinued. I am not saying this to convince anyone to stop or continue treatment, just we ALL need to push both FDA and Gilead to publish all the possible side effects so one can make an informed decision whether to take our not.

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I have the FDA reports that show a number of side effects that are not listed on the dispensing brochure and are unknown to doctors. This is a new medication and NOBODY can say what is or is not a side effect. Everyone responds differently. We have be test subjects. I have read the FDA reports and people are experiencing many, many, many side effects that have not been released to the public.

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