Harvoni Side Effects (Page 11)

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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KMH totally understand your frustration with this. India would not grant Gilead a patent on Harvoni so treatment is $300 there. The 2 drugs that make up Harvoni are not new and much of the research was underwritten by NIH so India didn't think it deserved a patent.
Try contacting Acaria Pharmacy. They are who supplied my Harvoni and were able to get me assistance within 30 minutes. Maybe your Dr can contact them on your behalf. A friend of mine had the same Dr as me and also got the assistance.

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JAMIE: Thank you, I will. I have made calls to everyone I can think of and so far, not much assistance. I will contact them.

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I had some pretty bad side effects from the Harvoni but I'm starting to get it out of my system after 6 months off. Feeling better and hopeful that I will continue to improve.

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I am 16 months post treatment with Harvoni. I also had the liver doctor discount any suggestions that I was sick from Harvoni during my treatment. I had leg cramping that moved to my feet. I live with bad foot pain to this day. It took months for my brain fog to disappear and I will never be the same. I am fatigued and worn out. I was on the medication long before anyone was writing about side effects on the forums. I am glad because I might have been more frightened!! I have had no follow up from that Liver doctor and he just emails me on my chart when it's time to retest again. I made it clear for a year and will be tested at two years out next. I still have upper right quadrant pain and had Hep C for 40 years and never knew it till I started having liver area pain.

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Why is your doctor still testing you for Hep C? I assumed that Harvoni cured you of the virus. I'm very sorry that you are suffering from taking Harvoni. Many of us are trying to support one another and we hope, someday, we will be well.

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JANE: I have heard of that with other HepC patients; them being tested again at 6 months, a year, two years...

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I was under the impression that patients are tested 6 months post-Harvoni and then again at 1 year post-Harvoni.

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That's correct. I hate to even read about this drug that 2 wks I was on it was two of the longest wks in my life. I can't imagine why the doc wanted to " treat" it when I had no symptoms.

Now I continue to keep an eye on my liver like I have done the last 30 yrs. this is very strong med and we all react differently. If only the docs were more honest and forthcoming. Big pharma pushing this on everyone with ridiculous prices. That should tell us something. I am still angry about what I unnecessary went through for nothing.

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Jane I am doing what they request. I am sure since I started treatment in Dec 2014 that they are following up on if the undetected status holds long term.

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They say that if you are clear at one year the virus is undetected. Why not ASK why the doc is testing you after one year. Has there been reports of the virus coming back? Are you using drugs? There has t be a reason. People speak up, ASK your Doctor questions they don't know as much about this drug as you might think it's only been around 2 years if that.

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I feel reassured by testing so I don't need to decline it nor ask him. No one knows if this will last forever? Why so concerned about it Jane. Better safe than sorry. It's a learning curve at this point.

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I'm not concerned; I was curious because I should go more often if that's the case. My physician said I could be tested as many times as I wished but she said it isn't necessary. After reading about the virus, etc., I'm fairly convinced that, if it undetectable at one year post-treatment, it's gone. If you want to be tested for your own reasons, that your business.

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NewDay: I have been looking around online for weeks at people's experiences with Harvoni. There are enough who are experiencing the terrible leg and foot pain to give me pause. I get annoyed with people who think I am stupid for not eagerly jumping on the Harvoni train. This drug was fast tracked by the FDA and the whole process is not very transparent. My liver is not in bad shape because I've done everything I could to keep it healthy. Most people do not die from HCV, especially those who make the effort to stay healthy. I am very appreciative to all of you who are sharing your experiences, but sorry for what you've gone through. It's not fair that the people who had bad results/side effects are treated like villains for simply being honest. I, for one, refuse to stick my head in the sand and want to make well informed decisions on my well being. Thank you so much for sharing with us.

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I receive lots of medical journals, etc., and I just read that Gilead is putting new warnings on Harvoni. One of them is coronary problems and I don't remember the rest. Those of us who have suffered from Harvoni and try to tell others should never that they have to keep quiet about the side effects. Too bad Gilead wasn't forced to disclose the serious adverse reactions sooner. If anyone wants to know the web site for this particular information, let me know. I just read it last night.

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Sadly it was just in the headlines yesterday that Hep C infection does kill and it is the number one killer of the infectious diseases. Even though I had sides and continue to be "post treatment effected" I would treat again rather than risk more damage to my liver. Just my opinion!

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Yes, Hep C does kill and I'm glad I'm cured. I do, however, want Gilead to be honest about Harvoni and the doctors to become educated on the side effects of Harvoni.

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@ Jane thank you for that info. I agree of course we would want to rid of the virus, who wouldn't. Is it fair to call something a killer if you have it over 40 yrs? Up to you, I read that only 25% of ppl die from hep C. Many ppl don't live healthy lifestyles in addition.
That said, yes I would definitely like you to share the website. When I was on it I knew I was ready for a stroke like I said my b/p was 186/118 and I am on med's used to be stable. My eyes were another issue, I thought I was going blind. Again why some ppl tolerate it well is anyone's guess. I would imagine as time goes on more ppl wil be reporting bad sides. It's treatment but intention was for ppl with bad liver disease not ppl who were stable.

Please share any and all new info on this product. Be well and best wishes to everyone who is still living with this disease. It's also not fair to say it's the # 1 killer that would be Ebola or HIV no?

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Thank you all for the information that is being shared...I am now on heart medication and have hand b and joint b pain since doing the treatment. ...if I had it to do all over again and had the right information I never would have done it...I had hepc for 25 years and as soon as I found out I had it I changed my life style....all was good...I pray the fda does a more intense study and does put warning labels on the product...any feedback would be appreciated. .lyanab

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@liba thank you for sharing although it was sad news. I would guess your Doc told you there was no correlation between the the med's or nothing on record. That's a yet let's make sure we report all side 3 ways, online and in paper. You will receive in the mail a letter verifying for your records that your complaint was noted.

I think that somehow this med can or does increase inflammation in other parts of our body, hence joint pain etc. I remember the second day I was imon the med I could hardly get on a pair of shoes and my hands were swollen only thing different t was this med. why do you have to go back on it did you relapse or discontinue treatment? After what you just said would you consider another round of treatment? I would second think that, now with your heart issue. That seems to be the main complaint heart and high b/p with nerve joint damage.
Again let's keep the thread moving. Agree if the docs would stop rocking a boat but someone has to be a Guinea pig or have to test this on? Why not us? Thoughts and prayers go out to all for healing.

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Just found an article dated 4/14/16 Study finds DAAs Risky in advanced liver disease. Not sure if I can post link on here.

Study of 834 pts with advanced liver disease in Barcelona Spain noted DAAs (direct acting anti virals) more likely to die during treatment then if they just left it alone.
Results showed pts with very advanced liver disease ( whom this med was pushed at originally) may not obtain benefits from these treatments.

Now if we could get the USA to jump on board instead of worrying about big pharma and the stock market.

I am sure you can google the article titled DAAs risky in advanced liver disease. Sometimes it's just not smart to poke the hornets nest.

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