Harvoni Side Effects For My Wife - Concerned Husband (Top voted first)

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Hi my wife has just started harvoni - about 9 days or so now - and she is getting swelling in left leg and also feels like there is pressure in her head. Anyone else have anything similar? Thanks

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My husband was diagnosed with Hep C in the early 90's, along with cirrhosis. Throughout the year's he's tried "ALL" possible treatments available which none have worked, most his body would reject. Then the miracle cure Harvoni came out and his doctor decided to try this. By this time he is so fatigued, steadily loosing weight, and now at stage 4. The hardest part of the whole Harvoni experience for us has been just trying to get our insurance to approve it. BCBS told me that after recreiving info from my husbands doctor and denying him twice the treatment, they said they couldn't be sure just how severe his condition was....STAGE 4!!! I was in rage and let them know it. I asked what was it going to take, a picture in the casket. I told them I was going to sue them. Then amazingly, he was approved. He will have to take it for the full 24 wks, but after 1 full month his doc. had blood work done and my husband is getting so much better. He's gaining weight, lost the fatigue feeling, no side effects what so ever. We are now in the 3rd month and he continues to get better each day. I'm always sure to add the makers of Harvoni in my prayers daily. Today I have my husband back!!!

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2

Hello. I took Harvoni for 12 weeks, 6 months ago. I had the weird pressure in my head also. It continued on and off thru treatment. It was a pressureb headache. It went away soon as I finished the meds.
I also have swelling in both my feet and ankles. Its related to me being a 55 yr old female who sits at a desk at work. It only happens in the summer with the heat. I was told I wasn't drinking enough water. So I elevate my feet and drink water. I'd have it looked at if just one leg or foot is swelling tho.
I made it thru treatment and I'm OK now. I'd guess your wife will be just fine. I only missed one day of work during treatment, tho I did go to bed as soon as I came home as I was tired.
Good luck! Carol

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7

Indeed focus on the positive but there are hundreds of us who are experiencing long term problems. The FDA has hundreds of reports of problems but has failed to release that information. Best wishes to all who take this stuff. You may be one of the lucky ones!

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11

Before saying anyone who does not take Harvoni is foolish you may want to ask the hundreds of people who have been damaged by this drug if they are foolish for taking it. Yes, some are cured and feel great. Others are dead from a sudden unexplained death. I have talked to relatives of those who have died, and more than a hundred who have been damaged, many who now wish they had never taken the drug, me included. I also have FDA reports to back what I am saying. Some are lucky and others are not. So do NOT say anyone who does not take it is foolish. It is a personaI choice and there is absolutely no guarantee you will feel better after taking it.

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8

I also completed a 12wk course of Harvoni 3mths later I have severe joint pain in my hands feet elbows and now lower back.
I am happy to have cleared my virus but in agony with this joint pain that developed only 3wks into taking Harvoni!
I am hoping it will gradually get better but seems to be getting much worse right now!
Getting cured was my main priority as I had stage 4 and cirrhosis that was causing problems. .I am grateful for the chance of a cure otherwise I was possibly looking at a future transplant.
The only problem I have right now is trying to convince them that it is possible that Harvoni is the cause of all my joint pain!
I suppose it's a small price to pay at least I won't die of liver failure even if Harvoni has caused these problems I might just have to accept the trade off.

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13

I am in my third month of treatment and 3 weeks ago I started swelling in my legs and knees. My right knee is so swollen I can hardly walk, let alone sit down and get up on my own. My next set of tests will be done in 4 days then my dr appointment a week later. I will post what my doctor tells me.

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15

She's on the last month of the 6 month program. Mostly she's dealt with tiredness and some joint pain. Happy she's nearly done now.

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16

thankyou i looking for some good feedback i wish and pray for u, i taken this treatment alone, well i live bye myself with no support from anyone, other than doc visit, so i pray that this med kills this hpc,it seems like most everyone has bad thing to say about this med, i pray that know one else has to take this treatment and feel better after they do, thanks for your time

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17

I think taking Harvoni caused bone loss. I am now for the first time taking vitamin supplements. I went to a chiropractor/nurse practitioner/acupuncturist and here is what she gave me: Nutrametrix is the Brand name. Daily essentials, prime joint support formula, calcium complete, vitamin D with K2. A total of 4 items. I also have dry macular degeneration and I am taking prime vision health formula for that. I have been officially diagnosed with fibromyalgia. To ease that pain, I am doing aqua therapy in a saltwater pool. Gentle exercises such as tai chi in the water. I'm also continuing to rest a lot as needed. I have been unable to work since the year 2000. That's a long time to be living with chronic pain. I'm finally getting the healthcare that I need.

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22

Since taking Harvoni I have developed fibromyalgia and arthritis and bone loss and lack of flexibility. I'm not able to recover but I feel like I am maintaining and not getting worse. I have strong reactions to medicines.

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32

My son died 6 months ago after taking harvoni. He was 28

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33

Jera, I am so sorry. Yes, there are many deaths reported. I have personally spoken to 4 relatives of healthy individuals who took Harvoni and died. The FDA reports are showing almost 5% of those who take Harvoni die. No joke! This stuff can be lethal. All is not perfect like the ads indicate. So sorry!!!

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3

Thanks for your response. She is doing pretty well. Symptoms come and go. She had really bad fly symptoms for a while. Just taking it 1 day at a time.

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5

Hi Chris, good I'm glad to hear she's feeling better. The weird pressure headache and some other symptoms I'd experienced were nothing terrible, just unfamiliar to me, so they kind of scared me initially until I realized they weren't getting worse, just coming and going. Some days I actually felt spectacular! Like I said, I did get pretty tired later in the day and would often go to bed soon as I came home.
Anything I experienced while on Harvoni is long gone, including the weird headaches and fatigue.
Be careful reading some posts on here as many unhappy and sick people are posting some bad experiences. Its very unfortunate, but most people really are fine. My Dr told me to stay off the internet lol!

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10

Stay off the Internet. You bet. I too have been cured with Harvoni, ending therapy in June of 2015. If I had read some of the really scary stuff people are reporting around here, I might have had second thoughts.

I do not blindly trust anyone. Compared to the earlier HepC treatment with Interferon et al, which I avoided, Harvoni is genuinely a miracle solution. Anyone hesitant to take it, if prescribed, is foolish.

The HepC nurse at the gastroenterology clinic suggested, dozens have been through this therapy under her care, without ill effects. Not so with the Interferon program and it's side-effects. Also, the cocktail isn't something Gilead magically pulled out-of-air to foist on us but an accidental discovery when researching AIDS medications.

My experience with side-effects were mostly nil. I'd get an occasional headache and occasional sleepiness but out of the background noise of getting such things anyway, I couldn't seriously report these as side-effects.

One curious experience was, on day 3, I had a clarity-of-mind I didn't know existed other than my over 40+ estimated years I had been infected. A whole career. College, recurrent education, all apparently compromised by what I read was called "brain fog". I do not have that and at 69, haven't felt so good.

I have tinnitus but have had it for a long time anyway. Career noise around heavy machinery or that front row seat at a Pink Floyd concert in the 70s? Who knows? I have some knee pain but after 69 years in the gravity field, who doesn't? Jogging is 20G impact on one's knee. Fast walking is 1.5G on a knee. I fast walk everyday for an hour and did all through my 12 weeks. Jogging may be good for the heart but has deleterious effects on the knees. Wear good jogging shoes if you must. Walking fast, biking, swimming also keeps blood flowing, up and out of the feet and ankles. I mentioned this because someone thought Harvoni caused ankle swelling. Move! I digress.

Medicare Part D reduced the cost of the pills to near nothing. Why would they pay for this without hesitation? Cheaper than a liver transplant AND a waiting list for folks who need livers and not enough livers for everyone.

I was in the San Francisco airport waiting to leave on a flight. A young lady had a jacket on with the word Gilead on the back. I asked if it was the pharmaceutical company? Yes. I reported my success with viral load undetected, and all liver enzymes normal after discovery in 1987 that something was awry in my liver. I sent my regards to the scientists there. I made her day.

She said Gilead is working on an AIDS vaccine.

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14

thank you for sharing, i read alot of bad reviews and i just wonder if anyone got better

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21

Taking Harvoni will likely cure you but for some of us the cure is now worse than the original illness. You can read it anywhere. So many are now suffering constant and many times almost intolerable pain. Read up on it people. Anti-virals can change your DNA with unknown and potentially devastating effects to include death. Yes, many of us were very healthy before Harvoni and now are miserable years after treatment. My quality of life is in the toilet after Harvoni. I will continue to say, I wish I never took Harvoni.

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28

I too believe I am permanently damaged. Because of the cognitive problems (can't think,can't retain anything I read,anxiety beyond reason and now on Xanax 0.5mgs 3x a day,horrible fatigue, no stamina,memory loss,can't sleep,and drastically increased pain,)my appetite sucks but I have bloated up to 160lbs from 120.i am only one year post treatment with Harvoni and ribavarin. Before I did treatment I had an active life,now I have no life.my vision also is affected so I need to stop typing this. Increased ear ringing and swelling to my legs also lots of fun.my GI MD refuses to believe that this happened to me because of treatment... Anybody have any suggestions... I am out of job,and 63yrs old, and the long term disability just dropped me.i am at the end of my rope...

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30

Dear hepcfree, it sounds like you have the information I need to give to my docs! Can you tell me how to find these FDA reports and/or any other info you have found? I am still very ill a year post treatment and I have lost just about everything in my life, job, social life etc. Please help me as my doctor keeps treating me like I am making my distress up. I took the Harvoni for 6 months despite bad side effects during treatment because the doc insisted, and told me everything would return to normal after treatment. I am a 63 year old woman and feel my future is bleak. Please help me. If you will help me please reply here.

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37

i am too , 69 days and i passed out at work , so i said to hell with it, now lost job no enrgy , depressed and lost job , this med must be taken and not have to work , good luck , my exp, has not been good

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