Harvoni Side Effects (Page 24)

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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Jared I am so sorry!!! Such a young woman too. There is a change.org petition out there if you search Harvoni there. Please sign it and get your family and friends to as well. We are trying to band together to inform the public.

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Hi Jared,

I am also sorry for your loss. That is tragic and thank you for taking the time to warn others. This must be very difficult for your family to deal with.

Oh yes Keith, I already done what you warned me against. I gave a laundry list of symptoms to the doctor, and although he was very polite, he advised me to seek another doctor as I was suffering from another illness! Yeah right. This started 3 days after I started taking it.

I am with you Jim and Keith. I would NEVER have risked it if I knew this scenario was even a possibility. My health is destroyed right now and I am afraid I will not get it back. I too, drank the Kool-aid about the cure rate and the low side effects. It seemed like a simple decision at the time. I quickly changed my mind though and had misgivings on the first week. Before I found anyone else like me, I had a strong feeling I had made a mistake and I wish now I had listened to that voice and got out in week one. It was sold as a miracle cure, and all the hope invested in the fairy tale ending was difficult to let go of.

Yes, I agree with the person (sorry I cant remember the name) who advised me to keep taking it. It sounds contradictory, but I dont want to end up not cured as well as having sides and I have only 2 weeks to go. Its like there is no turning back now, even though I do not trust this drug anymore. Thanks for putting your advice out there though. It was validating to my decision making process.

Every week, the deal changes with this, and I do not know what is coming next. Yesterday I developed hot, raised, itchy, sore scabs (the size of a golf ball) on my buttocks. Sorry, gross, but has anyone else experienced this? It came out of nowhere.
I also have rotation dizziness and ears ringing has just begun. What next with this poison? It just gets more and more weird.

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Jared, Sorry for your loss. I have the FDA reports which show numerous deaths, some from cerebral hemorrhage. This stuff can be lethal to some. I certainly would not be encouraging anybody to continue treatment based on the side effects being reported if someone is already having problems. Google - Petition Harvoni.

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When you say trouble with your pancreas, what exactly? I've had weird bowel issues as well as almost constant pain under right rib.

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It saddens us all to hear about the death. I was on a pain med that obviously was causing a bad side effect. My doctor being all not knowing but trying to do whatever it took to keep me on these if got a brainstorm as soon as I reported intolerable side I called myself a walking black box warning.

She decided to double up ( if my pain management) was willing and in the same Hosp they have a way of making one another willing called a favor. Thought was let's double up on your pain med maybe your over is working so fast metabolizing this drug ( getting healthy for sure ) that if we double the pain med you will be able to complete treatment.

Even I had the common sense to know don't start tweeting g meds while I was on that awful stuff and if I was becoming a walking black box warning why in the world would you INCREASE what is giving me bad sides or certainly adding to? If I am half dead why not just kill me by doubling up? I knew then I was nothing more tot them but a meare experiment. Don't you think this should have been worked it PRE treatment? What were these genius thinking?

I looked at my doctor through tears raised my voice and said , " enough " you are not going to be happy until I am in a psychiatric ward or the morgue! My answer ok I will stop Tories f you now! Really that's a quote. My almost stroke level b/p racing thoughts and highs and lows like no ones tomorrow I M still furious at the lack of transparency and support. Angry at the hospital and the drug company.
You all k ow my thoughts on this med they are maki g it up as they go along the damn stuff wasn't ready to safely been approved. We know we barely survived it. This mans mother in law was unfortunately not so lucky.
We repeat this med is a danger mor a danger then not.

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A few typos on that post sorry it's early and I am on my phone. No edit button so the word there should have been LIVER and comment @ genius Doc typo was I will stop torturing you now! Sorry next time I will not post from phone without glasses.

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I have severe leg pain it feels like nerve pain,it started when I was on harvoni.i have been off med for 10 months and I'm still having leg pain it gets quite bad at times, if you get any answers I would like to know.

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@Scared Mom - so sorry to hear about your son! May I ask how old he is?

For something this serious I would definitely let his doctor know asap (if you haven't already) so that they may treat him or refer him to an appropriate specialist. Also, since your son is experiencing a more serious side effect, please consider reporting this to the FDA through Medwatch. It is important for them to be aware when a medication poses a potentially life-threatening situation.

https:/­/­www.accessdata.fda.gov/­scripts/­medwatch/­index.cfm?action=consumer.reporting1

Also, if you are very concerned about possible suicidal behavior, please consider contacting the National Suicide Prevention Lifeline at 1-800-273-8255. It's not just for people who are suicidal, but for people concerned about a loved one.

And lastly, please write back. I think we're all concerned about you guys over here and are always ready to be of support in any way we can!

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In short. I agree with the previous post scared mum. This is a serious issue and you could benefit from more support. This medication is not for everyone. I understand its not that simple weighing up the risks. Thanks for the person who validated to continue with Harvoni in week 10 despite my misgivings. Yes I dont want to be left with the virus after all of this suffering.

Jim and Keith I agree. I drank the kool aid of a miracle cure. I also would NEVER have taken it if I had known there was even a possibility of this. I did not plan for any of this as I was told I may have a slight headache. Yeah right. This should never have been sold as a fairy tale. I went to work today totally afraid of what will happen next. Vomiting ? Fainting ? Or my favorite...incontinence. Yes that's happened too. I also have red raised welts on my skin that are are scabbing. The size of golf balls. I am afraid at this point it's not even working.

Jarred sorry for your loss. Thank you for taking the time to write to us. That was very generous. All the best for the road ahead for you and your family.

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Yes I finished 12 weeks of Harvoni 9 weeks ago and I am still having severe pain in low back, hips, fingers, wrists,and feet. I got a steroid shot this week and my dr is checking me for RA. Gilead is not telling us all the facts about this drug. I was debilitated for 12 weeks on the drug from side effects. I can't figure out how to start a post on this forum.
good luck
luna

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Most people post here, including me, about the side effects of Harvoni. I had an interesting doctor appointment today with my hematologist that handles my blood thinners I take because of blood clots in my lungs. He has a 3 page questionnaire of yes/no like has weight increased, pain in your chest and one question was liver problems. I told the doc I don't know how to answer that one because I have 5 "none detected" test results. He told me that I should always consider myself to have a liver problem, and he said these drugs everyone is taking (Harvoni) were not tested long enough and many patients are now having relapses. My wife and I were stunned. I started asking questions but he said he just saw an article that he doesn't know that much since it isn't his area, but now many patients are relapsing well after a year of being clear. So I went thru all this and can still relapse? Great....

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Vanessa I just felt that once your even half way through treatment we have seen that stopping due to sides hasn't changed that they might still stay with you. Once you already got that far I figured you might as well kill the virus so you have something to show for your future sufferings. If only our doctors would be of help to us during and after treatment with side effects. You are so right that we all drank the koolaid and I have learned a hard lesson from that. I will not jump in on only my doctor assurances next time.

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Yes Fourlocos I am forever changed by this experience. I have lost some trust which is kind of sad in itself. Yes part of my anger is the lack of support during a harrowing treatment program that they wont even acknowledge was difficult.I had to deal with it all on my own.
Keith I had considered that a possibility.
If they knew so little about side effects and it was so new then how could they know we wouldn't all relapse ?
Clearly they dont. But it must have been so unsettling to hear it out of a doctors mouth. How utterly disappointing.

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I have the overall pain that everyone else on here has complained about... Went in to talk to Primary Dr. about Fibromyalgia, my mom has it and apparently can be genetic. No test for Fibro , so Dr did tests to rule out other issues. Found I was low in Vitamin D,(now on 12,000iu 1xweek for12 weeks) and I have signs of RA.. Can't get in to see a Arthritis Dr till end of October. I only took it 4 1/2 weeks. I couldn't risk further damage to my recently replaced Knee. I really wish we would have been told of the side effects , or at the least the doctors acceptance that the complaints we all have were real!! I hope your Dr is able to help you, I was super lucky and my Primary Dr completely understand about Harvoni and I feel better just since starting the Vitamin D.

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To scared mom, yes, what Sherri and others said is right, that suicidal ideation is listed as a rare side effect from the clinical trials, about less than 1%. I am pasting a quote below from the FDA pdf of prescribing information. I do hope your son is ok. His doc needs to know about this.

"Less Common Adverse Reactions Reported in Clinical Trials (less than 5%): The following adverse reactions occurred in less than 5% of subjects receiving HARVONI in any one trial. These events have been included because of their seriousness or assessment of potential causal relationship.

Psychiatric disorders: depression (including in subjects with pre-existing history of psychiatric illness). Depression (particularly in subjects with pre-existing history of psychiatric illness) occurred in subjects receiving sofosbuvir containing regimens. Suicidal ideation and suicide have occurred in less than 1% of subjects treated with sofosbuvir in combination with ribavirin or pegylated interferon/ribavirin in other clinical trials."

http:/­/­www.accessdata.fda.gov/­drugsatfda_docs/­label/­2015/­205834s006lbl.pdf

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Vanessa this is Luna your friend, this forum is a little harder to follow than that other one that was so rude to us......my whole body hurts...My doc gave me a steroid shot this week for the inflammation in my body. Some relief came but not near enough. I too am afraid I will be living in constant pain and on pain meds forever....please send me an email at {edited for privacy}! Missing our conversations. Also Holly is not doing well, long story. Damn Charge Syndrome, she is trapped in a body with a mind.

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Mark - You're not listing the real side effects of Harvoni. If you're looking at Gilead's site, it lacks any credibility regarding side effects.

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I also have ringing of the ears after 3 months on Harvoni and blood test with high RA!

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Hi Marie
I am in week 12 of Harvoni and the ringing in my ears started at week 11. Its a dreadful feeling. Are you finished treatment ?

I am at the point where I do not trust this drug anymore AT ALL. I dont think I could even list what I have been through in the last 11
weeks. I am angry. I signed up for a slight headache and now I fear for my current and future health which is EXACTLY what I was trying to avoid by taking Harvoni. If they knew nothing about the side effects they had a responsibility to tell us that. I would not have risked it.

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Hey I'm Lisa. I'm thru with Harvoni but got pancreatitis from Harvoni. The doctor at the hospital wanted me to stop but I am stage 4 Liver Disease with cirrhosis of the liver. Now I have cysts on my kidneys and had no idea if the Harvoni caused it but I feel worse Now than I did before taking Harvoni. We are there long term data and that really concerns me. My liver doc says I will always test positive for hep c. I think they want me to keep this as my medical history so they will have access to me for the long term data for Harvoni.

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