Harvoni Side Effects (Page 30)
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I have been taking Harvoni for 3 months now and am having nerve pain in my legs and lower back pain. Is anyone else taking Harvoni having any of these same side effects as me? Please help if you are able. Thank you

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Thank you very much for posting that your doctor validates your problems from Harvoni and states that others are having the same issues. This was not the case with my doctors but I took Harvoni from March to September of 2015. I think they know more about the drug now; not that Gilead posted any of the real side effects. The patients are coming back with information. Again, thanks for passing that along so others don't feel so isolated.

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I now have a paper from MedWatch that the FDA safety report was received.

We have to do the work, fill out the forms and submit reports on fda.gov/Safety/MedWatch. I encourage all who are having side effects from any and all med's to submit a report or call and they will send you paper work. We have one life, let's try and be safe. For them it's money for us it's our life.

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You know it's odd, many people that have hep C test positive for RA yet upon further testing they say we don't have it. Why test positive? Now the virus cleared and the symptoms worsen? Makes no sense.

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I should have aded in my previous post that I also am having back pain along with the foot and leg nerve pain. Dr seems to blow it off.

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I have told my GI doctor, my internist and Gilead about the problems I've been experiencing. Gilead told me no one else has reported any of these effects. My GI says I should be fine as my labs look good. My internist is concerned but says she can't find any info about Harvoni causing such problems. She has referred me to other doctors. I will keep you updated!

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Ive been on harvonni for 3 weeks and i also have some back pain.. In the morning its very stiff and so are my hands

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Yes I've had joint pain as well as nerve pain in my feet. I finished my 8 week program 3 weeks ago and the shortness of breath I had has subsided pretty much. I hope the pain goes away as well. My Dr doesn't really seem to care about these issues which ticks me off. I would like to know how much they get paid for each patient they treat. And if there is a kick back if sorts from Gilead.

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My doctor validates all my issues and is very interested in recording them. She referred me to a Rheumatologist for the joint pain. She told me other patients on Harvoni complained of similar symptoms.

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I tolerated Harvoni pretty well for 12 weeks. My major complain is foot pain that travels up to my ankles and calves, along with a dull feeling like a numbness in my lower legs. I tested negative for RA. I'm following up on it.
Other than that I feel pretty good. I would like to know if anyone else has the same problem with foot pain.

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I want to add that I did read that Harvoni was fast tracked, according to FDA information. I was finally ready to go for it, until reading here and on other forums about the after effects. I don't mind side effects during treatment, but some of the after effects are worse than how I feel with HCV. I found out about a nutritional supplement called Viusid from Madrid, Spain. The FDA seems to have shut down a web-based seller in the U.S. I found a report on Viusid's effectiveness on HIV in African countries, too. It doesn't cure, but it restores health. I finally ordered some via an international pharmacy site. It only contains antioxidants, but is being blocked here for some reason. Maybe big pharma doesn't like nutritional supplements that help HIV? If anyone else finds additional info on Viusid, please share. It's an elusive product. They also manufacture Viusid for veterinary purposes, immunomodulation for livestock.

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Hi, Tony. I am wondering if genotype makes a difference. Do you mind sharing which genotype your HCV is?

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Thank you for that information. when I go to the docs today, I often feel like they are hiding something and (we) the patients have to figure it out. Whats the elephant in the room? Who is a docs worst nightmare? An educated or enlightened patient.

Now the WHY? Why are some people not affected and others are? Do they just not know it yet? I wish us all good health and I hope that we are more then a certificate of a viral load and an insurance payment for the med. Its awful to think that way, I have my reasons.

Please, let us not find out that somewhere down the road this is going to come back to bit us in the arse. I get it if you are very ill it could be a lifesaver or maybe not. As you wrote that, I swear my ears are still having issue with ringing, my eyes were so sensitive to light I lived in sunglasses even around the house and the dryness was remarkable. I felt as if I was going blind.

Not sure I understand the mechanism of the CNS or how changing RNA affects nerves its complicated. I did tell my doc what good is a certificate of zero viral load and a bed in a mental institution. its not funny, this is heavy duty medication but is it safe? Prayers for us all.

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Hi. I took Harvoni for 12 weeks. At 10 weeks post treatment now. I felt pretty much ok while taking it. It did damage tho. My ears started ringing 8 weeks in to treatment and my vision was affected immediately. I'm much more fatigued now and can't shake minor colds.
In talking with others and reading medical journals, the nerve damage or other damage a person experiences from this drug is due to mitochondrial damage. It works on a cellular level, also damaging or interfering with our own RNA that we need to remain healthy and functioning. I don't know if this can be fixed or not. I've read that lipid replacement helps rebuild cell walls. They sell it online and health stores. Going to try it actually.

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Than you so much for follow up. I appreciate your honesty and wish you health and healing. Just wondering when or if you discuss those issues does your doc validate them or do you feel dismissed? I still believe men tolerate this easier then women.

Best to you!

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I am post Harvoni 8 months. I had some fatigue, insomnia and stomach upset during 12 week treatment but it was tolerable. I had and still have foot pain. Also pain in my ankles and calves, severe heartburn and muscle weakness. Difficulty working out. Walking is painful. Hep C was undetected since week 2 on Harvoni and I'm still Hep-C free 8 months post treatment. Feel better every day and feel optimistic symptoms will continue to improve. Best of luck

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Thank you! That's what some of us want to hear. Keep in mind we all began the treatment thinking that would be all we would experience, sadly it was not ours.
Good luck to you and God bless, if you want to read how it interacts on your CNS Google and read. Only out of desperation were some of us driven to research why me?
Again it could be that all of us are different but if you had a heart attack, or were crippled it would be a different story. Happy healing and please keep us posted with your continued recovery.

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I would like to know if there is anyone who has NOT experienced other than the usual headaches, some weekness and tiredness. WOW, if I would of listened to all the sad
stories I'm reading, I might not of started my 3 mo. treatment. Just like to be different here and hopefully will read that this doesn't effect everyone. This medicine will NOT
block your biale duct, or cause near death experience. I'm thankful to say that I'm now starting my 6th. week on this stuff and only had a few headaches & some heartburn. nothing that a 600 mg. Motrin & a cold bottle of water cant handle............
It dont make sense why this medication causes nerve damage. I have some minor nerve pain in my rt. foot & neck. & hasnt made a bit of difference. Oh by the way..... Im a cancer survivor.....Praise God, with a colostomy......................... 6 more weeks !!!!!

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How are you doing now? Was it nerve pain?

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It's 2 wks off now from the 2 wks Harvoni. My b/p is still elevated and I had a strange dizziness today when I stood up. It was only 2 wks but each day worst then the next.
I know you are all angry because we don't know what the long term sides are. Will there be something more serious later on? I hope not. Just hang in, report these to the FDA they want to hear them. Also don't let your docs tell you it couldn't be the Harvoni, though many tolerate it well. Many do Not. It's the Harvoni. I still feel it, there is some CNS reaction. If only we were told. Health and healing and keep posting, we are all helping one another.

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Join the club. There are many of us with these side effects when all there was supposed to be was headache and fatigue and no one said our problems now would be permanent. I am more than a year post and still having similar problems. In fact, all the docs are saying it cannot be the Harvoni. HA! I have FDA reports that show thousands of reports of problems, yet we are hearing nothing. I will gladly share with whoever wants them. This site does not allow email addresses or I would put it here.

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