Side Effects And Lack Of Transparency Harvoni (Page 4)
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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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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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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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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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@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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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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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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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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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 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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It gives me hope to hear your doctor is reading forums about Harvoni. While on treatment I had a few of the "Harvoni headaches". They weren't like any other headache I ever had, and thankfully I rarely had headaches. When I had that horrible sick headache my blood pressure was elevated. It wasn't high because I am normally low, but it was high for me! The day after I finished my treatment I was in the ER with strange chest sensations. I felt it was stomach related but to be safe my liver doctor's office had me go get checked out. I am about 20 months post treatment now and am left with daily hand and foot pain. My joints are creaking and I hurt. I am thankful to be Hep C free after 40 years and hope that things improve for me.

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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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My Dr. just shared this post with me so I wanted to share my experience. I started treatment with Harvoni on May 13 and finished on Aug 7. I am now negative for HepC. Initially the only side effect I had was diarrhea, but that got better after a couple of weeks. But 6 weeks into treatment I started experiencing irregular heartbeats, like my heart was skipping a beat every so often. It was infrequent so I didnt think much about it at the time. But then it started to happen more often. By the time I went back to the Dr. for the 8 week blood test and to pick up the last month of pills the skipping beats were happening almost every day. My pulse rate and BP were normal tho so we decided to finish the course of treatment. But now, one month after Ive finished the Harvoni, its really gotten bad. The skipping heart beats are all the time and it feels like my heart is beating very hard. My BP is still normal but my HR gets elevated a lot. Although there is some contradiction. Ive been keeping track of my HR and it gets up to maybe 100 when walking fast for a while, but then goes back down. ive counted as low as 65, when I first wake up and around 75-85 during the day. Anyway, I had a holter last week for 24 hours and the results are confusing. It says my minimum HR was 101 and max at 157. I took it several times during this 24 hour period and got several counts under 101. Ive also had 2 ekg's, one on a treadmill which showed some irregularities. Im getting an echocardiogram tomorrow with the cardiologist who put on the holter. It looks like i will need to be on heart meds now. Its pretty upsetting. Nothing was different during the period I took Harvoni except those pills. My primary Dr. is convinced its the Harvoni that caused this.

Jo

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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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You are so right on Carol, I found when I googled HepC it was like reading about my health history and I did not have cirrhosis. I had it for more than half my life and only stopped drinking and started Chinese herbs to keep my liver healthy 17 years ago when I discovered I had it, still no cirrhosis. Some people have bad side effects and others don't. The disease itself has so many side effects not just the Harvoni.

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There are breathing issues that have occured to include respiratory failure based on an fda report I have secured. I personally ezperienced breathing problems and now have lungs that function at 50 percent. I am 66 and 14 months post tx. Had virus for 35+ years. {edited for privacy}

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Great message. Im in aust gen 3 ,63yrs old emphasemia worried about tx getting breathless depression ect ,dont really trust lot of things i read ,if any one knows anything regarding side effects for older people prob had it 40yrs. Thanx

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Hello Ladies, and gentlemen. I am not happy to hear that many of you are still suffering such bad effects from using Harvoni. It's now been 6 months since I completed 12 weeks of Harvoni and I'm still hep C free, all labs normal. I didn't feel to well initially but did improve to feel OK again, tho I still have tinnitus, which an ear nose Dr. Can't explain. What I did find out however, is that having hep C masked some other medical issues I was having that I was not aware of. I chalked every unknown ailment up to hep C, as my Dr told me so. I also ate terribly while infected with hep, I looked quite I'll often, very thin and tired. I just couldn't eat. I fell prey to one opportunistic infection after another, and consumed a large amount of varying antibiotics, some of which cause sore and weak tendons, and also tinnitus. (Levaquin and Cipro). So when the hep was gone, i wondered what these new aches and ailments were from. Logically it must be the Harvoni I just took. And it could be true. Dr says more likely I'm suffering from effects of malnutrition and antibiotic toxicity. I also was a serious drug user 30 years back and who knows what else that did to me. I've apparently been suffering from a long term sinus problem that has left so much scarring that I require surgery to breathe effectively and stop the pain in my head and face. I always just thought I had normal allergies and the sniffles.

I had started looking for answers as to why I felt like crap after Harvoni, and I actually found some, that had nothing to do with Harvoni. I still think the tinnitus is related, but it could also be from antibiotics or this sinus condition. We shall see. I also do have stage 3 to 4 cirrhosis, without complications, that I am trying to recover to whatever extent from. My Dr said it would take months to start feeling better from having hep C. So possibly once the hep C is eradicated, other health issues now come to the front of the line and need to be dealt with, issues that weren't so apparent while we were sick with hepatitis. I do hope many of you are seeing some improvement in your health. Its a slow process it seems. I am very aware that I was going to get much more sick if I didn't treat the hep C one way or another. It was going to be a bad death from what I was told. A new liver would not have saved me as long as I still had the disease. I had to try and am glad it did it. Some achy tendons and tinnitus is acceptable to me over the alternative. I know some feel much worse tho, and I'm praying you can treat the effects you are having.

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Jamie, Immediately after stopping Harvoni after my 12 weeks, I had an asthma like attack. Then my heart went berserk with palpitations. After an ER visit and a number of heart/lung tests, I now have scarring in my lungs and they work at 50 percent capacity meaning they have to work twice as hard to feed the proper amount of oxygen to the heart in order for my body to work properly. I was very healthy prior to taking Harvoni and did not have cirrhosis and took no other medication. I took care of myself holistically. I have been in contact with a gentleman from TX whose wife was very healthy, took Harvoni and her lungs quit working. I also am in communication with a woman in my state who experienced the exact same things with her breathing. She still struggles to this day. Best wishes.

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CHEPCFREE, what kind of lung problems? i been cured 12/22/15 and now i have trouble breathing but i also have ascites so that could be it . addition of fluid in the chest cavity pushing the lung to a smaller
size. have trouble


with getting air into lung almost to passing out. scary feeling not breathing.

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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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