Side Effects And Lack Of Transparency Harvoni (Page 2)

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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@ 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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newday, about that tinnitus i hear about as a side effect. well i have had tinnitus for many years. this is how i have help get by it. First , silence is very loud! really. Get a fan as back ground noise. They call it white noise. it does help with a steady sound. like counting sheep. It works for a great many people. The other thing I found out is your mind control. When it gets loud during non sleeping hrs. what i do is i think in my mind of a radio with a noise control wheel. as the tinnitus gets louder i think of turning the control knob to lower it. It does work but you can do it and it is amazing when um do it. you can make it louder or you can make it silent. it does work. try the fan to sleep and a dark quite room won't sound so loud. :) good luck on that part.

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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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I was told depression IS an issue with harvoni last night. I am VERY lucky that I have ALWAYS been a strong advocate for my own health. I have had 3 operations this year plus one unplanned. for an accident . That crushed my foot. I AM the bionic woman now lol. My pharmacy knows me and that I worked in medicine and had to deal with drugs reps that are basically like con people. Look carefully at drugs interactions, I was almost KILLED my fentanyl latches that were interacting with 2 other meds. I stw!! Worse 3 weeks of my life. I was wandering around like an Alzheimer's patient and the hospital kept sending me home saying I was in no danger!!! Now THAT'S DAMN MALPRACTICE!!! Stay strong and positive!!! Good luck to you.

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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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So sorry to hear you joined our party! And I wish I had better news but 18 months later and everyday is a day of pain for me. My life will never be what it was. I gave up on even talking to the doctor about it. They don't believe us anyway. Harvoni is ruining people and they dont' want to hear that. Honestly they have no clue how to treat us now either. Sure they can hand you more pills. I won't put anything else in my body! That is what caused my mess. I will stick with what I have left of myself.

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Jim. You can always stop Harvoni. That is an option. I am another victim. Tinnitus, headache, nerve damage, lung damage, etc. I am 16 months post treatment. Wish I never took it.

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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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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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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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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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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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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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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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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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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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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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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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