Harvoni Side Effects (Page 4)

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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REPORT

I finished 6 months of Harvoni in September. My 12-week post treatment blood work showed I cleared the virus. The first four months were difficult (worse than interferon, etc) but the symptoms eased up by the 5th and 6th month. I began having intestinal problems about one month after stopping Harvoni. The diarrhea stopped but I still have stomach pain, cramping. About two months after stopping Harvoni, I developed severe joint pain in my wrists and fingers. It seems to be getting worse. Ibuprofen helps but I'm worried about all of this. Of course I haven't talked to the Hematologists; they were dismissive and ignored any problems I had during treatment. Although I'm grateful that the hepatitis C is gone, I'm concerned now that I've suffered permanent damage from Harvoni. I felt better much better before starting Harvoni but am aware of the dangers of developing liver cancer and other problems caused by Hep C. It's even more worrisome now after reading that others have the same side effects after completing the drug but it's very helpful to know what's going on with others. I am a person who always wants to know what's going on and have had a long career as a Patient Advocate. I wish everyone the best and encourage them to keep writing about their issues because it's the only way people really know the truth about this drug. Interferon and ribaviron were difficult but at least the doctors addressed the issues and acknowledged that they caused problems. This was not the case with Harvoni. I drank tons of water, watched my diet, etc., but I nearly quit taking the drug before the designated end of treatment. I have a wonderful primary physician, and, if it weren't for her support, I would have probably stopped my treatment.

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Please not only write about your experience but report your side effects directly to the FDA, not to Gilead. I just read an article that Gilead is a huge offender of properly reporting adverse events to the FDA. Google - "Most drug makers report incomplete side effects to the FDA" So sorry if you are suffering after Harvoni. Believe me, you are not alone.

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Thank you everyone for there comments on the side effects. It has been ten months since I have been off Harvoni. I am still having side effects. I now have nerve problems in my neck and joint problems as well in my hands. I also still have nausea and insomnia . I hope these problems go away but it has already been almost a year. I am also great full that the virus is gone but just wish I was told the truth from the start. There was not only one side effect slight headache as I was told but many others and it looks like permanent side effects. Oh I also lost a lot of my hair as well . Best of luck to everyone if they are still taking Harvoni and GOD BLESS ALL

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Is there a web site to post side affect comments to the FDA?

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Nelly...... I haven't yet started my harvoni treatment yet, but thru tests I've gone thru due to cancer releted issues, it was discovered that my biale trac was getting clogged and had a endoscopy procedure to clear it. I can pretty much assure you that Harvoni didnt clog your biale trac, It was your long time HEP-C LIVER that did it !

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To post to adverse affects to the FDA:

fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm

It is a simple procedure. Everyone should be reporting their side effects to the FDA.

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If you are taking just the Harvoni, no. If you are taking ribavirin with it the symptoms can no horrific. I was taking 1000mg of ribovirin and one orange Harvick a day. I became so enimic after 2 weeks they stopped me down 400mg on the ribovirin. Two days later the VA had me admitted to the hospital with heart issues. I couldn't even walk my dog. My enimia level before the start of meds was 15. When they dropped me 400mg my level was 11. Going into the hospital it was an 8. A level of 6 is deadly. I quit the meds.

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Please note that I should have written Hepatologists, not Hematologists.

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I can't help but I just took pill #40 and I am also experiencing the same symptoms.

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I will also ad that I am having joint stiffness and pain in my fingers also. Tingling down my arms just started a couple of days ago, I'm on day 40 now. The first couple of days I had a lot of wrist pain that that has subsided. I've had 3 back surgeries so I always have nerve pain in my feet and legs but it has gotten worse on the Harvoni. With any luck I only have 16 more days to go so I'm praying things don't get worse.

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I would like to know why those who post on this thread are not allowed to communicate with each other privately. I can understand the confidentially concern, but one should be allowed to publish their personal email if they wish to share some things with another blogger. Who is this site protecting? Certainly not the individuals who are asking for information from those who are willing to share their experience with Harvoni.

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You guys are lucky to be able to afford the $1000 per pill cure for Hep C. I think I would just deal with some back/leg pain. Sorry, but it kills me to know that I will probably die from this disease because I am not wealthy.

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I think the people who are upset and in pain after taking Harvoni are merely expressing their frustration. If and when you take Harvoni, I hope the doctors and others will know more about the drug and it's side effects. We were told we would have "headaches, tiredness" and now we have serious problems that aren't even being addressed by the medical field because they don't know enough about this new drug. By the way, I couldn't afford Harvoni but I worked very hard to obtain an authorization from my insurance company to pay for it. If you are sick enough and proactive, you may get some help in paying for it yourself. Beware of what you wish for and try to understand why these people are frightened and a bit resentful as they feel they were lied to.

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KKH-don't give up. I don't know your insurance situation but there is assistance available, for now anyway. The online pharmacy that my Dr used for my script put in for financial assistance and my copay was totally covered for 3 months. It only took them 30min to get it approved. My friend had the same experience last year.

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Indeed..be careful what you wish for. Also there is a lot of help out there for getting Harvoni. If you call Gilead they may be able to help you. Please know that there are many long term side effects that people are experiencing that no one told us about. There is a new drug called Zepatier that is now on the market. I do not know anything other than it is supposedly "more safe than Solvaldi" and is less expensive than Harvoni. Perhaps that I another avenue for you. I have been damaged by Harvoni so again.....be careful what you ask for.

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Thank you for your warning to the patient who admonished those who have been damaged by Harvoni. I, myself, will never take a drug again that hasn't been on the market for over two years. At that point, I would carefully review the side effects and ensure that they are all reported to the FDA.

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Jane, I may never take another drug again .....ever. I knew better than to take something new on the market but was "suckered in" by the sales pitch of the doctor that Harvoni was so safe. HA!!!!! In fact today, I spoke with a woman whose other was vibrant and active...took Harvoni...and is no longer with us. Take care all.....

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To Jane (post # 72) - To answer your question about sharing private emails, you are correct that we do not allow that information to appear on our discussion threads, and it is against our privacy policy. As you can imagine, protecting the privacy of our visitors is a top priority, and because we do not verify the identity of individuals who participate in these threads, we have no way of knowing whether someone who has shared a private email address is actually the individual in question, or somebody else misusing their information. We hope this makes sense. If you have any more questions about this please feel free to send us a message via our contact form. Wishing you and everyone on here good health!

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I am also loosing my hair. My hands are numb but hurt. My end of treatment results are in and HCV is not detectable. Although I am grateful to not have HCV anymore, I learned to be careful what you wish for. When I asked the GI DR about all the symptoms mentioned by us he said he could not find that info in med books. As if there are only 2 minor side effects.Well DUH!
The interferon & Ribavirin I took also dropped my white blood cells at 1 week and then had shots 3 days a week of Neupogen and at week 2 my red blood cells were wiped out & I took 1 shot of Procrit weekly. Now add a shot of Pegasus weekly I had shots 6 days a week.

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Take my Harvoni. I'd love to give it away but it's illegal. You have to be in jail on medicare or medicaid or have been in the armed services to get this medication. It's so greedy to charge fourteen hundred dollars a pill. I contracted hep-c in the Army by air gun injection.

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