Harvoni Side Effects (Page 28)
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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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This is all so crazy! This was supposed to be the new miracle drug for HepC, without all the horrible side effects of the Interferon treatment. And it sounds like it's the same damned thing! How can they say that the side effects are minimal in the trials, yet all these people are coming forward with these horrible symptoms? Unreal... I came on here to see if anyone knew how I could get this drug without paying 90 grand, and now I'm thinking I don't even want it! This is all SO discouraging.

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SHADY63: WOW! Gee, thanks for being so helpful! While your complete lack of compassion and your condescension is greatly appreciated, maybe you shouldn't make assumptions. I have talked to my doctor, my pharmacy, my insurance company, ANOTHER insurance company, as well as Gilead and AbbVie themselves. I have been on the phone so much about this, the damned phone is growing out of my ear. And I STILL would have to pay tens of thousands of dollars, which I don't have. You actually HAVE the drug and are going to possibly NOT take it, and you are giving ME s***? So maybe you should SHOVE your condescending attitude and not make assumptions.

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I am also dealing with HIV and have applied some of what I have learned over the years in symptom management with HIV beginning with an exercise regimen and pre-preparation.

I have applied these techniques to withdrawals from Harvoni and began these preparations about a month before I actually stopped taking the Harvoni and also incorporated some pain management techniques derived from The University of Washington Seattle and U.W. Harborview Burn Center.

Several years ago, studies were done at the University of Washington Seattle and U.W. Harborview Burn Center concerning pain management for burn pain.

Part of what they discovered is that the more a person focuses on the pain, symptoms or ailments, the more neuropathways actually open toward these conditions and these conditions actually worsened - another form of self conditioning and self patterning.

Among the many diverse techniques that were discovered was the usage of various types of software programs which require strong concentration and focus. They created a specific type of Virtual Reality(VR) software(SnowWorld) designed for burn patients developed by Hoffman & Patterson at the Univ., of Washington Seattle and Harborview Burn Center.

hitl.washington.edu/projects/vrpain

As the test subjects began using the software, neuropathways would open toward the VR software objectives and close toward the pain thus resulting in reduced levels of pain.

These same techniques that were discovered can be utilized through many forms of available software which require high levels of concentration and focus including VR PC games, on-line education, mathematics etc. just about any software that requires a moment by moment interaction of thought processes.

Use caution with VR games and seek those that are of a positive nature. I utilize both single player games and on-line, multi player games which provide an additional benefit of a social atmosphere with other gamers who are also on-line playing the same game.

Generally, these games involve joining a group of people to accomplish game objectives. The social benefits greatly add to distracting myself from symptoms and side effects from medications.

I am using the VR technique in conjunction with an exercise program and keep myself focused with these activities and away from the side effects.

When utilizing the various forms of software that I use becomes to much, I will exercise, including long walks or house work, chores, etc. and make every effort to avoid thinking about symptoms or withdrawals. I refuse to acknowledge these symptoms in every way possible that I can find but at the same time maintain my awareness for legitimate medial concerns and deal with these concerns as they may arise.

It has been almost 30 years now with the HIV and to this day I cannot name the medications that I am currently on for these reasons.

My attitude is that these illnesses are subject to me and how I will or will not allow them to affect me. They live with me on my terms.

I also make every attempt to avoid thinking about the side effects and rather focus on the positive effects of my recovery and also actively seek to find more positive benefits of my recovery and additional activities.

So, what can be accomplished with these regimens on a psychological and physiological level is the re-patterning and re-conditioning of our minds and bodies to focus on recovery and positive thought rather than focusing on debilitating symptoms or the effects of withdrawals.

As for detoxifying, one of the best methods for detoxifying is water. Avoid putting to much strain on your recovering physiology which includes most if not all of the systems of the human body.

Remember, our after-care begins with a recovering liver and then depending upon just how much damage was done to the liver. Be careful to avoid adding to many supplements or complex food products that will over over exert the liver.

Above all allow yourself to focus an anything and everything positive regarding recovery and our second chance.

Dream again, aspire and know that anything is possible with a little effort.

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@shade the cost of this is the elephant in the room it's a huge consideration. If this med was even $1,000 per month most wouldn't feel so exploited. At $1,000 per PILL that chged the dynamics, priced gauged many of us feel victimized because of profits. We had zero control of anything. The push to get pts on while the price is HIGH makes some of us feel disgusted. You would think the latter wait for the price to come down. It's all about the $$ on this one.
The way the docs tell a pt their sides are totally irrational is irrational could it be we have no reason to make this up?
So many games are being played with Obama care and docs resentments why blame the patients? They don't want to hear us. End of the day be assured you will be on your own with this one. We stated our issues again so far so good with many others. We feel the profit motive outweighed the pts on this one, I know I do or did.

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I should have said my previous post was for kkh. Instead of complaining about not being rich enough to get the drug, I was suggesting you get it for yourself. Ask questions, make phone calls! This medication is available to the poor and the rich. If you really want it you can get it. I am absolutely not rich but it's being made available to me. I'm not even sure, after reading these posts, whether I'm gonna take it or not. Good luck and a change of attitude may make you feel a lot better

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I had a 2 month treatment program and my blood tests are negative for Hep C. As I had posted here in the past I had some joint pain in my wrists and knees. I had increased back pain and a lot of foot pain. Also, shortness of breath.
Today is day 30 post treatment. For the last week and a half I've been feeling worse and worse. Like a slowly creeping up flu. The last 2 days have ben the worst. Tired, weak, shaky, sweaty and just out of it. Have a hard time focusing and concentrating to watch TV or read the paper. It has been coming on slowly the last few weeks but has really hit home the last 2 days. My feet have a LOT of pain in them. I thought I had dodged a bullet as my side affects during treatment were uncomfortable but bearable. No I believe 'm having the sam delayed post treatment problems others have experienced.

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Good luck I agree it's very personal. The docs I saw yesterday seemed just as defensive like there is some secret. They don't know! no one is going to go against a big pharma or another doc. Just be careful and find a doc that discusses options and doesn't push or try and bully you to treatment.

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Contact the maker of the drug. Sometimes you have to make things happen for yourself! In 1995 I contacted Schering Corp. and they supplied me with Interferon and syringes after verification with our local hospital that they would monitor me. Yes, I was a Guinea pig! But I made it happen. Now, since I'm a Veteran they want me to take a drug similar to Harvoni. I go to the VA hospital for an MRI on 6/22. I haven't been told what my enzymes are elevated to, but was told I was a good candidate. Get on the phone!!! There's always a way!

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I HAVE A COUSIN THEY WENT TO THE DR AROUND HERE HE HAS HIP WAS THAT THE REASON HE GOT SUBTEX THE FIRST VISIT AT THE DR JC,

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I have not been treated but have been researching the data to help me make a decision. The hepatologist I was referred to was so arrogant on my first visit that I decided to try for someone else. He also shot me down when I told him that I take milk thistle for liver support. He said that there is NO evidence that it has hepaprotective effects. I could dump a stack of actual research journals stating otherwise. He participates in clinical studies for Harvoni, which makes him suspect from the get go. I felt that if I were to opt for treatment, I need a supportive doctor since we will be working together on this over a period of months. It's so personal, but many doctors don't get that. Thank you to all of you who are sharing your experiences. I am so sorry for those who are suffering terrible adverse effects.

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Funny you should say that. My doc said that she wondered if I was bi polar. That was a stab in my liver. Don't you think at 60 something I would have exhibited or been diagnosed. In addition I was told if it were placebo would I be reacting the same way. Yep sure would amazing how we are conditioned to be silenced by the pharmaceutical industry. It's really demeaning.

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I concur with NewDay. Wait if you can. And your new GI is an i****. You are correct about the trials. My GI had the nerve to write to my PCP and say I am bi-polar, delusional and obsessive/compulsive because Harvoni could not be the problem. I wonder when he also got his mental health credentials?? He didn't. They are not trying to cover their rear ends by pointing the finger at our mental health. Do not stand for this!!!! Best to all.

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As I type I am at a lab just saw a new GI doc. They absolutely must think I am crazy or live in some false reality because they said there is NO WAY my side effects were from Harvoni. How do you think I feel?
I was an absolute basket case when I was on it, the new doc insisted that there were thousands of ppl in the trial. I said 600 he said thousands.
Now I just have to sit back and wait while the virus comes back and hope that I didn't awaken a hornets nest.
In answer to your question I would wait another year that's me. Most ppl are tolerating the drug and we are not getting honest information that I can tell you. They probably don't know, I believe they believe it.

So that's my answer do your research there is no reason to treat this today, immediately right now!!! The best that will happen is a less expensive drug will come out. I allowed the doc to pressure me to treatment, do we all want to be well? Absolutely! The question is you never know. Watch and wait that would be my suggestion I don't think there is honest reporting. Does anyone see anything that there were thousands in trial? I read just under a thousand.
Good luck keep us posted whatever you decide. It's sad because in 2 wks my virus was down to almost 0. It was 2 weeks of hell for me though.

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NEWDAY: Yes, see that's the thing I am wondering. I have had hepC for at least 12 years. Probably somewhere between 12 and 15 years. I have absolutely no symptoms at this point, so I'm not sure if I should even worry about treatment right now. But on the other hand, the fact that I have had it over 12 and possibly up to 15 years worries me. Any suggestions? I certainly don't have the money for Harvoni or Sovaldi, and I have crap insurance. And hearing about these people with all these horrible side effects doesn't exactly inspire me. But of course, I don't want to die of HepC/liver cancer/cirrhosis. SO???

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I suffered from some minor joint pain before the drug now 6 months later I have swelling in my knees with water retention and my right hand joints are bad. I felt sick while on the drug, my cholesterol sky rocketed. I suffer from chronic myalgia and fatigue and just a general sick feeling. I wasn;t having problems before. Don't think I really needed it.

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Be sure to report side effects to the FDA, not Gilead. They are notorious for NOT providing full information to the FDA and will likely tell you nobody else has reported such a side effect.

fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm

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That is the mythology to get the drug passed by the ins company. Like there is a guarantee that we are all going to get liver cancer.

Actually this treatment was supposed to be for ppl that are chronically ill from liver disease. The reports of ppl that are stable and not with cirrhosis or ready for transplant are what was being withheld. Its one thing if you are at deaths door its another to place someone there.

Yes indeed lets continue to post all sides and post during anything regarding this drug. Eventually our "coincidences" will no longer be coincidences and might fall under the category of conspiracy. First do no harm, I hope to God that we are not permanently damaged because of big pharma.

Prayers and healing to us all.

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I just finished my 3 months of Harvoni treatment. Started having excruciating sharp pain in knee joint. It comes in an attack and leaves in about 10 or 20 seconds. I just scream. Feels like a knife just stabbed me. Please not something else going wrong!

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Thank you for understanding everything yes the labs showed a decline and very abnormal and took forever to get a referral to a hematologist so hopefully it will help. Every time he went to his GI doctor and complained about side effects and concerns during the entire 6 months of treatment and also the primary doctor it was always ignored and dismissed. Both doctors would never blame on the Harvoni . Yes the poison pill did kill the virus and we are both very grateful. The one thing I know is that he feels they kept him on it way too long. No matter what he told to any doctor about concerns of side effects he was having they would just keep telling him to keep taking it . Now I am so scared because he was in the hospital for a week after slow heart rate which caused his heart to stop completely and I THANK GOD That they had put him in the ICU right away and was able to get his heart going again . So thank you all for sharing your side effectts because it helps so much to know others are going through the same thing . That is what this is all about to help each other to know we are all not alone. GOD BLESS ALL

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I am so sorry to hear that. So any blood tests show any change meaning I assume he has labs while on "poison" I call it that as well but didn't want to offend. Did he become anemic or complain of changes while on treatment or did this hit him post? My point being are the docs dismissive that it's from treatment? I hope that with time things will get better. I understand the issue with eyes for me that and my heart was immediate. One other odd thing that proved there was an issue with inflamation. I had a few foot bunions the NEXT day all of them were swollen up in size literally overnight!
There was defiantly water retention or swollen joints that I could see because that's a bit external. I have lived with constant dry and painful eyes seeing spots or slight aura coming on rather disturbing. I hope all this passes I can't imagine if I was still on this yet others have zero sides I don't get it.
Do his docs validate that it's resulted from Harvoni or play dumb? I wonder if it's because they don't know or they don't believe us.

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