Side Effects And Lack Of Transparency Harvoni (Page 4) (Top voted first)

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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Jim posted on here? How did he die? Thats horrible! and scary. What were his symptoms?

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I posted a message here yesterday but can't find it?

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Re: New Day (# 2)

I am three years post treatment with Harvoni. Permanent side effects for me: Arthritis, low back pain, left knee pain, pain from shortening of my muscles (fibromyalgia), brain fog, chronic fatigue syndrome.

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Re: New Day (# 2)

Hi. I was diagnosed with peripheral neuropathy after my Harvoni treatments. It's very painful and seems to be getting worse. My hands and feet are swelling.

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Re: New Day (# 2)

I think so too. It was approved in October of 2013, I think. I started January 1st of 2015. My stats were getting bad (3 and a half out of four) so I was (foolishly) anxious to get it started. These years later, I am so sorry I didn't wait longer. I have almost every after effect that we talk about here.

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Hi Jamie, YES other drugs don't mix well with Harvoni. I tried to take the antibiotic Cipro and made it 3 days and thought I was dying. I stopped that and continued the Harvoni and felt ok again. Another Dr told me Cipro and Levaquin don't mix well with Harvoni. They apparently work in a similar way. Yuck.

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@ Dixie try and give it a few days but when I look back I knew at day3 I couldn't adjust. I kept pushing and drinking a gal of water and now sick as a dog.
Do keep us posted if you were well do t suffer needlessly it's not worth it. Just my opinion.

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It is not worth the long term damage. If one is having horrible effects right out of the box your body is telling you Harvoni is a problem.

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Suzy what is going on? What sides are you feeling? I know the first few days were a bit rough. And I would stop based on how is your liver condition. I know I am damaged from Harvoni but I can't say that I am not pleased to be rid of Hep C. It's like a bright spot in an otherwise lousy painful life. I was having far to much pain in my liver area to have considered stopping but then again I only had to do eight weeks and I knew I couldn't have taken it longer......

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@Jamie than you, for the advise and for understanding. Some ppl docs included think it's all in your mind... It is but medically induced.once other med gave me tinnitus it was aka the purple pill Nexium. Granted I had an IV drip of it for bleeding ulcers in the ER bit OMG that was my first real migraine.

I wonder if it's b/p related or the med itself now that's coming and going when I was on it it was constant. Awful yes indeed the noise in our head was/ is ringing non stop for today that over but it moves around. There is always something I wake up and it certainly is a NewDay. Not ungrateful that I have been given one just depressed and annoyed that I have to live like this now. I would love to bottle this and give some back to the doc ( I know that sounds mean) I really would t wish this on anyone. No way could they have been so blind and misled. These are ppl that began trials just dishonest. We seem to have issues with honesty lately. Many do not know its new and not their area of expertise never head of it but the ones that did or do know! Shame on them, greedy and still misleading. Be well one day at a time friends.

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Well here it is day one of week 6 on Harvoni and I am feeling terrible. Kidney pain, leg and back pain, nerve pain, joint pain and swelling and every kind of pain you can imagine as well as some severe headaches at times and I am everyday,, extremely tired. As I begin week 6 I hope that these are symptoms that will go away. My doctor thinks I'm crazy says they weren't side effects listed so he doesn't know what they're all from,, it's quite clear my VA doctor does not believe me. All I know is I feel like garbage I've got tons of pain that I never had before and my urine is so dark it's scary. I drink a gallon of water almost everyday day because I'm so thirsty and yet it's darker than dark. Again another symptom that my doctor says it's in my imagination. If I'd known how bad I was going to feel chances are I would have just lived with the HEP C and took my chances. I just wanted to update my status I wish I had more positive results to post, thank you...
Jim

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I'm sorry to hear that you're having such a hard time with Harvoni. Personally, I would not have taken it had I known how difficult it was. One thing to remember is that you CAN drink too much water. You need lots of hydration but it's important to stick to the recommended dosage of water. My mother once drank too much water and she had a seizure. It messes with your electrolytes. Finally, I am cured of hep C and, of course, I'm happy about that. I'm not sure it was worth it.

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Hi jim. Hope your feeling better,sounds terrible ,im64yrs old in australia i was considering tx i think iv had it for a long time so i think id be one for side effects my age doesnt help i have breathing probs already ,i think i might wait a bit good luck too you ...cheers

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Joe,
I am so sorry. It's nice to see that doc's are reading this post I hope my prior doctor is. One more time if I were able to tolerate that led I knew I was ready for stroke, upon arrival at at doc's office 2 wks into treatment my b/p was 189/118. All the doc's in that hospital stick together as one clinic so you are very lucky to have A good cardiologist, someone who cares.

As I took my treatment out of that Hosp an older much wiser GI told me he would never have touched my hep C. If we have something stable for over 40 yrs is it really goi g to kill you?
Harvoni is one of the biggest big pharma rip offs minis episode pen we will see in our lifetime. My b/p med is double and my heart skips beat often, I still see lines and have tinnitus that's o ly 14 days of that poisen.
I wonder if we will ever see a pay to play this election cycle or next where they made a deal with the devil. As in pay to play. This is politics. No drug company targets, drug addicts, inmates ,Natiive Americans and those of us in recovery. Sadly we are not people the government spends $100,000 on oh I forgot VETS. We can't get housing and food stamps but so fast to treat this? Please!
Please continue To keep us posted, if we can save one life it's worth it. Peace and care.

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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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@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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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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