Harvoni Side Effects For My Wife - Concerned Husband (Page 2) (Top voted first)

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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MedsChat asked me to post an update, I wish that I could say that something has changed for the better. If anything things have stayed the same or gotten worse. I am so fatigued, weak and in pain it has increased my depression. My memory is really not any better and if I get at all anxious it's worse, and I'm anxious quite often. The anxiety attacks are horrible so I am taking Xanax like crazy. My pain is up so my pain management MD has added more. The long term disability from my job (that put an end to my work after a year) just denied my appeal so now I am trying to live on Social Security disability which I am grateful for, but doesn't cover my bills. I have exhausted what retirement I had, so now I am sitting crying because I really don't know what I am going to do. I guess I should be grateful for the fact that I am Hep C negative, as I said before at what cost!? My Hep C was stable after 30 years, it had just entered what they considered stage 2. I should have stopped the treatment in spite of the doctor insisting.

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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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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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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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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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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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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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I stoped my treatment after a 76 days gi doc is bad this treatment is bad i feel worse i to old for this los my job because I can't move like i used to this is a bad drug i wait until they come up with a new drug i did this all be my self with no support at all now on pain meds all the time been feeling worse every day at 900 a pill I surly thought i be better donot know if hpc c free or not do not care any more

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Many of us are now 2+ years post and our bodies have not healed after Harvoni. We are permanently damaged.

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I think that there is a legal suit for this med! I am in the same boat! Can see pain, swelling, ect. My GI doctor thinks it's all bs. Some people do ok. A very small few. The makers of this med are in ireland! Just pray.

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Ribavirin is very dangerous. It's sad that you didn't wait another year for the newer medicine that didn't need ribavirin to cure your genotype.

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I am so sorry to hear of these deaths. My MD did not bring any of this to my attention before starting me on Harvoni and then Ribavarin. As I indicated in previous messages, I am trying to get any information about the long lasting bad side effects from this treatment because more than a year later, I am still in extremely bad condition. This treatment destroyed my life. My reason for this missive is I would like to know if there are any legal actions being taken against Gilead and this Harvoni treatment... Because if not I would like to start a legal suit and I would like to know or hear from anyone else who would get involved. I am already trying to find lawyers but I need others to get involved.

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Please know that firmly agree with you. I am happy for the people who had the treatment without severe side effects I was not one of them. And I would not have taken this med if I had known all of the possible problems. I am 1 yr post 24 wk treatment and I have no life.i have stated in previous posts my list of disabilities, such as fatigue,no stamina,visual changes,brain fog,no concentration, disorganized thought process, joint pain,left leg edema,hands also. anxiety and depression which I never had before now in therapy. what I wanted to ask was how do I find the info from the FDA that has these side effects listed...any or all of them.My gastroenterologist is no help,keeps saying there is no supporting research thst he can find.i get the distinct feeling he doesn't want to. Can you help me with the FDA info? Thanks and I hope you are feeling better.

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Yes, to the takers if this medicine, they are not listing all side effects, my brother has been deathly sick since taking this. It has messed with his lungs and heart, in and out of hospital and they will NOT ADMIT it's from this pill.

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Please note that although I have been trying, I have not improved really at all. I am still weak, cognitively impaired, have pain and nausea. I get short of breath and anxiety attacks every day. My gastroenterologist will not admit that it is related to the Harvoni even though he knows what side effects I went through. My short term memory is horrible and I went to a neurologist who says nothing abnormal. I have lost my career and my life. The only positive thing is I supposedly don't have Hep C, at least it's below their parameters.

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are you still taking the meds? if not find another doc, that will listen to you, I have a lot of those same things wrong, and have had blood work over and over for the last 4 months, hpc gone on day 52, of stop taking this med, because I fell out of it,at work, or blacked out because of weakness, 14hour days, ect, drinking lots of water, still 5 months hpc ,free, and feel bad all the time, yes it is over whelming, hope this helps!

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Re: Carol (# 2)

I am in my 3rd month. Yes I have joint pain but it moves around my body from fingers to knees to my feet. From what I am reading it is not uncommon. My count are almost zero out after only three weeks. Looking forward to my final blood work and the follow up exam. I find that keeping up with my work-out routine seem to help keep the pain in check. May God bless you as he did me with the power of choice!

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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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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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