Harvoni Side Effects For My Wife - Concerned Husband

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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Hello, Chris! How is your wife doing? Has there been any change?

It has been known to cause headaches, according to the FDA, but the edema is unusual. Other typical side effects may include nausea, diarrhea and insomnia.

Is the only medication that she is on?

She should likely have this checked out by her doctor.

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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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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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Hi Carol - thank you. It's nice to know her symptoms are not completely unusual. All the headache stuff I read didn't seem to include the pressure in her head so I was a little concerned. She is doing ok. Seems that some of the symptoms have eased a little.

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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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Thanks Carol - I have to agree with that. I have found that a lot of people are talking about all the problems and I'd like to stay focussed on the positive.

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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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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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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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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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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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May I ask if there's any evidence showing how many successful Harvoni therapy results there are, without complications, compared to the number of scary reports here?

When I stumbled onto these Harvoni forums, I had to look again to be sure this was Harvoni therapy causing all this grief. It simply isn't my experience and none I have heard about at the large Gastroenterology clinic, I visit now only for follow-up blood tests. Yes, I have wondered about long term effects but I see nothing in my 69 year aged body that points, even anecdotally to Harvoni. Any annoyance I have, I had before Harvoni.

Indeed, IF prescribed by one's medical practitioners, get started and end years of immune system inflammation of the liver, leading likely to cirrhosis, then cancer.

Sure, we are all on death row and going to die of something. Why remain miserable, depressed and worried about a slow-burn virus slurry in your bloodstream, chipping away at your liver, when there's a solution with little or no side effects? When I was officially diagnosed with HepC, my thoughts grew grim. After my 12 weeks with no viral load, it's like a new lease on life.

A lifelong pal of mine finally got a liver transplant within the last year. First, profuse bleeding out of both ends, emergency helicopter Lifeflight to save his life. They tied off bleeding blood vessels with rubber bands. I think they are called bleeding varices. He recovered but was entered onto the liver transplant waiting list. Finally a lady lost her life in a car accident and my pal was quickly admitted. His recovery as a 67 year of age man was 3, THREE, long months in the hospital. For two months you could not even carry on a conversation, he was so delirious. Scaring people about Harvoni, who are already scared with HepC ought to consider the longer term genuinely dramatic consequences. Lou Reed didn't make it. David Crosby has!

My HepC I estimate to have been started during my Army years in the late 60s and Vietnam. Nearly 50 years or perhaps 40+ if contracted through unsafe intercourse. My understanding is that our immune systems fight this virus over the decades. Yet, after age 65, immune system integrity subsides. How lucky do you feel about waiting it out? Especially given the phenomenal success for what I assume is the majority of us.

My CNRP HepC nurse said there's a push to have every Baby Boomer tested. Many don't know they have the virus. I didn't.

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

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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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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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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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Stay positive and remember that for every 1 bad report there are 2 good ones that never makes it to the chat sites to let anyone know.

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Michael Sofia developed the backbone of the treatment called Sofosbuvir and he was working at Pharmasett. He was INTENTIONALLY working on the cure. Sofosbuvir combined with Daclatasvir cured hepatitis C. Gilead bought sofosbuvir and wanted to develop its own drug, ledipisvir, to combine with sofosbuvir. Many people died while waiting on Gilead.

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I am so glad you had success with the Harvoni. I also am HepC free, but I also no longer have a life. The side effects 12 months after finishing therapy, 6mos, I am still suffering, extreme fatigue, weakness, short term memory loss, cognitive problems. I used to be a respected RN in a high volume trauma center, now I am lucky if I can leave my house. O, Thats not all the side efects,I just can't type well enough any more or long enough anymore,but to add to mis I am not seeing a Psychologist and am medicated for extreme anxiety and severe depression.o no stamina, no cognitive ability, I can not tolerate any physical effort and I used to ride motorcycles,horses walk at least a mile a day, aND WORK IN A SUGICAL AREA 5 DAYS A WEEK MOST OFTEN 12 HOURS A DAY.I have now lost my job and my MD'S are pretty sure I am never going to be able to return to that line of work (which I love). My brain is totally fogged, I cant pursue anyn of my hobbies, writing,reading,crocheting,. My life is in tatters, and to top it off the long term diability just dumped me because my GI MD doesnt want it to be the Harvoni. So he says he cant find any research to back me up...its quite simple to me before harvoni I was a fully functioning person...now I have no life and possibly no home soon. HepC Free... AT WHAT COST??!!!

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Re: HepCFree (# 11)

Totally agree i finished treatment 3 yrs ago ,no virus now but I have breathing problems numb feet many infections I could go on so many problems now,I felt better pre treatment Gilliard no support at all,I would not have shaken someone s hand from Gilliard maybe shook something else ,can't see why people don't believe that some of us have really bad effects from Gilliard .thanks

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Re: Verwon (# 1)

Hi Verwon I'm not sure where you get your information but ,just about everyone I know who has been on Epclusa or Harvoni have Poste treatment Edema abdominal bloating nausea and neuropathy seems to be one of the most common system along with anxiety exhaustion numb swollen feet ect,when I spoke to the so called liver experts experts in my area they were very helpful pre treatment but Poste treatment not helpful at all ,there favourite line being "oh IV never heard of that happening before ' I'm 2 yrs Poste treatment no hcv ATM but feel as if my immune system is stuffed I actually felt better pre treatment oh nearly forgot besides all the side effects I mentioned my knees are so swollen I have trouble walking somedays , my advice is don't believe everything experts say .thanks.

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Re: Von (# 56)

I took it in 2015 towards the end of the year and I got peripheral neuropathy in my feet as a side effect of harvoni. I wouldn't wish it on anyone. When I contacted Gilead of course they denied it so I contacted the FDA and they sent me a 12 page list of the side effects of it...

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The side effects will only get worse. Some people don't get them at all. I had to quit after nine days. The Harvoni was killing my red blood cells faster than I could make them and I ended up in the heart unit. There are other drugs the harvoni may not be for her.

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Re: erna (# 54)


Indeed it is hellish. I would not recommend it to anyone who is "healthy", i.e. limited liver damage, good blood work. Doctors are still pushing Harvoni and refusing to acknowledge the hellish permanent side effects that diminish quality of life. Please do your homework before starting this med. It is good for some and horrible for others. Three years post tx and so wish I had never taken Harvoni.

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The more into treatment the more nasty side effects will arrive! I think my Hysterectomy surgery was easier to survive than Harvoni treatment! I regret that I was talked into taking this hellish treatment!

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Has your wife fully recovered from treatment? Or does she have long term side effects from Harvoni?

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Yup me too!! So sorry for your wife.my left leg has been going numb and brain fog ..like dementia

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Re: Bkenut10 (# 50)

Never assume that anyone contracted this disease through risky behavior. I, and many others, didn't. Also, just because you have tolerated the medicine well does not mean that it hasn't caused severe problems for some. To those who are suffering with a lot of pain, I recommend gentle exercise specifically designed for your needs by a physical therapist in a warm, therapeutic pool followed by relaxation in the pool for as long as you need, then a day or more of rest until you feel better and then return to the therapeutic pool. Eventually, this will rebuild your strength and reduce your pain, but it is a long process. I have been doing this for almost a year and the progress is very slow. Massage and chiropractic adjustments can also be helpful. Self trigger point massage with a theracane was extremely helpful for me. Calcium with vitamin D3 can help rebuild bone, if a doctor says it is safe for you to take. High protein diet to rebuild muscle. Try to remove all toxins from your diet and environment. You and your doctors will have to figure out what is best for you. Trial and error until you get it right. The body can repair itself when you nurture it, but it ain't easy, although it is important to be relaxed, as that helps the body repair itself. And if you can go live directly on a beach, you'll find it to be very healing. I'm not able to do this.

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Re: jimmy7141 (# 42)

First you need to be honest about how you got to this point. I personally am happy to have a option to cure this viral infection. Risk taking is how I contracted the virus. And if its a risk taking this drug so be it. I have one friend that died because his virus was too far advance, but also have a acquaintance that took it and has been find. I am noticing side affect such joint pain, but I just up my work out. I am 65 and in the 3rd and final month. I think its worth mentioning that I have not lose a day of work nor had to change my normal activities. However because it best not to drink while on Harvoni (and I haven't) I have become my wife's designated driver (lol).

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