Harvoni Side Effects For My Wife - Concerned Husband (Page 2)
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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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39

Don't despair. I too was getting worse but I'm able to maintain now by doing mild exercises designed for fibromyalgia in a therapeutic salt water pool followed by hours of rest in the pool - it takes the gravity off the body. I decreased how much I do during the day and I'm now avoiding walking. You're lucky you have disability benefits. I've been fighting for them for years and am praying I won't be rejected once again. If I get benefits, it will only be SSI, which is 750 dollars plus $200 in food stamps. My chiropractors have been very helpful. They've prescribed isotonic supplements which my body can absorb. I have had strong side effects from fibromyalgia medications and so I am doing without, which I think is a blessing in disguise. Have you been diagnosed with fibromyalgia? If not, a diagnosis of it might get you long term disability from your job if you appeal their decision. My recommendation is to figure out a way to stay in San Miguel de Allende in Mexico because they have natural hot springs and the weather is eternally like Spring. An income on 1,800 a month would suffice.

{edited for privacy}

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38

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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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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36

You can request the FDA info yourself under a FOIA request. It costs money but for me it was well worth it.

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35

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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34

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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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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32

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

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31

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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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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29

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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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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27

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

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26

You are probably free of hepatitis C. Give your body time to heal from the treatment.

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25

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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24

Holistic fibromyalgia specialists and chiropractors are very helpful. Seek them out.

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23

How did you find the medical help you needed? I am desperate

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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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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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20

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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