Harvoni Side Effects (Page 23)
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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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REPORT

I do have pai n in my lower back, I had this pre harvoni, will it possibly get worse???

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Jane- I wonder if it just varies. Before I realized I qualified for VA health benefits, I had gone to a private hepatologist. He ordered blood work as well as a fibroscan as his first step, before seeking approval from the insurance company. He also reviewed 4 different drug protocols in addition to Harvoni with me. He said I'd have to have at least a level 2 for approval. I never went for that fibroscan because I started going to the VA. The VA did an ultrasound and all of the blood work. In the past, like 10 and 5 years ago, I've had biopsies. No fibrosis then. I did read that with little to no fibrosis, the fibroscan can be less accurate than with advance fibrosis or cirrhosis.

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I just walked out of the ER was in the floor for 2 hours in pain. Had a dream the fire dept had to knock down my door, uhh no I am not smoking anything.

Made it to the ER as all my docs r giving me the run around. My labs are high from where they were when I was on Harvoni those 2 wks. I am at 112 where I was before two wks of hell. The nerve damage its radiating from spine to lymph node, hip etc.

I agree this can cause nerve damage I only hope it reverses I had nerve damage prior to treatment. What a mess. Let's all just pray!

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For those of you currently taking Harvoni, please be aware many of us end up with nerve damage to include neuropathy. There are studies that show Glutamine helps to protect the nerves when taking a chemo. I liken this drug to chemo. If you are taking Harvoni, please do some research on Glutamine/Neuropathy. I'd hate for you all to end up like so many of us with not only neuropathy but with other damage to the autonomic nervous system. Harvoni is not as safe as Big Pharma wants us to believe.

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Sherri - The doctors at the liver centers don't do the fibroscan until after you've been approved for treatment by whomever is paying for the Harvoni. The fibroscan may not show the damage that's needed to be proven before they'll ok the Harvoni. In my case, the blood test for cirrhosis showed advanced disease; the fibroscan showed little to none. Further, I didn't have any other symptoms or signs of cirrhosis.

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depression also adds to your pain. a lot of Drs dont tell u that . but try to stay in good spirts. that will help.

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Correction: should say self treatment, not Del.

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Forgot to say that the dr. was surprised at my low viral count and seemed convinced that I would easily be cured within 8 weeks. I can't help but wonder if all of the complementary alternative medicinals (CAM) that I've used over the years, along with a very healthy diet, has had an effect on viral load and my liver health. Or, is it genetics and I'm just lucky? I also forgot to mention another part of my new Del treatment protocol. I am sauna detoxing 3 times a week. Very good for the lymphatic system.

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So, I have started a regimen of a few different medicinal mushrooms along with schisandra and ginseng. Some mushrooms have been researched extensively for antiviral and immune enhancing properties. I've read that because mushrooms have been used for thousands of years and are available as supplements, the pharmaceutical industry is not interested in researching them. Basically, they would have trouble getting patents, therefore no big profits. Anyway, I will give updates on my self treatment even if it is not effective. I went to my GI appt with the VA yesterday. Was surprised that the dr. automatically assumed I would take the Harvoni. And, he said that they'll give me an 8 week supply, "see you back here in two months." No monitoring and fibroscan scheduled but not before I start taking the drug. What? Isn't that backward? I insisted on the fibroscan first, before starting the drug. Honestly, if my liver has minimal fibrosis, I will probably hold out for the next generation of drugs.

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Im curious if you had Any of that back & joint pain prior to Harvoni? I have horrible back & neck pain that heavy narcs cant touch. Does Harvoni make that worse??

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I once went to see a non-traditional practitioner for my Hep C. He gave me his own mixture of herbs (can't remember the name). They seemed to make me feel worse and I then saw another acupuncturist who was referred by doctor. This Acupuncturist told me that the herbs were damaging my liver and that I should not take them. I later obtained a list of dangerous herbs from the Liver Transplant Center. There are quite a few listed

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As for other nontraditional practitioners, like naturopaths, I've had trouble finding someone with extensive experience with Hep C. It's very frustrating, that was stated a few post back.said by someone else my response is .............I would try people that has experience in herbs and natural items. Try the Chinese consulate in DC and other agencies of countries that has this type of nat. medicine.

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Yes my legs and lower back ache all the time now I am on my 7th day of Harvoni. And I am drinking lots of water

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Hi Sherry!

Yes the Klonopin can be a problem I understand. I've taken it for 16 years now. I decreased my dose to a quarter of 1 mg 4 years ago and still got comfort from it once my tolerance dropped. My anxiety can get debilitating once it hits a certain level. Actually the use of klonopin and sheer will was the only thing that made me able to steel my nerves and swallow that first Harvoni pill. When my Dr first told me about interferon and ribaviron a hell noped myself out of his office fast, as I'm a single mom with No one to take care of me under that level of sickness. If I got cancer I'd be scared to death to under go that treatment as well. Is have to be shot with a tranquilizer gun and trapped for that treatment! I have researched Harvoni and understand that it targets the Hep C virus RNA and unravels its RNA chain so the virus loses the ability to reproduce. Then our own body kills the remaining virus. That's why some people may see some lingering virus after completing treatment. They aren't viable replicating viruses, just likely benign viruses that haven't been killed off yet. I also understand that some of our own RNA chains may be unraveled also in this process, possibly causing some of the weird problems people are getting from Harvoni. When you become altered on a cellular level, there will be changes. I've read that possibly RNA can be repaired using lipids but don't have any info that seemed to back that up. I have planned to consult a Dr who treats on a cellular level (can't recall their title) if I experienced problems I never had before using Harvoni, that were debilitating. There's also a legal case in the works in California against Harvoni, if you can find a doctor who will agree that your new illness was brought on by it. People may want to wait a bit and see how that shakes out before they use this drug. I'd bet allot more research will be done if the legal case is viable. I like to share info. None of us wants to be in the dark where our health is concerned. And I like to read info here as well to get realistic advice from all of you! Now if someone can tell me what to do with 3 teenagers who won't eat my cooking id be very appreciative?

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New Day I am so sorry for your painful back and that you had to stop treatment. I understand. At least I have maintained my undetected status now for over a year. The first few months after treatment were the hardest because the pain was worse and I felt bad most of the time. I have to work so I had to push through it. I limit myself to a couple Tylenol maybe once a week if that. So many people do okay on Harvoni and many like myself had a rough treatment and aren't well still. There is a price sadly for most disease treatments. A trade off so to speak. It's not good but it is what it is. And yes I do believe that Hep C for 40 years damaged my joints and Harvoni just sped up the process. I pray it did extend my life by stopping the virus. Time will tell.

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Sherri, I appreciate the fact that you do so much research and post what you've learned for the sake of other members. Everyone should try to do the same for themselves before they rushing in to taking a new drug. I wish I would have known what I do now before taking Harvoni.

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@fourlocos, I am so sorry for the pain you're experiencing. I suggest that you research both cryoglobulemia and peripheral neuropathy. There are correlations with Hep C and I suspect that Harvoni has further effects on these conditions if they were already present in the body. This is just a guess, as I haven't delved into it very much so far. An older article titled "Severe exacerbation of hepatitis C–associated vasculitic neuropathy following treatment with interferon alpha: A case report and literature review" looks at how interferon treatment may exacerbate the neuropathy. I'm wondering if Harvoni treatment stimulates the body's own production of interferon, which could possibly have similar results. Anyway, food for thought. You can also look up the term demyelination in relation to Hep C.

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@NewDay: I had good insurance for over 25 years but when we moved to California and were both (husband and me) unemployed for awhile, we qualified for MediCal, which is like Medicaid I think. I quickly figured out that the doctors who accept MediCal are generally bottom of the barrel. I am now using my VA health benefits instead. I lost faith in the U.S. medical community years ago. My aunt is in the medical field, and now teaches at Rutgers. She is not thrilled with the training of MD's. My theory is that big pharma and private insurance companies have too much influence. When did drugs go from temporary to permanent use for most conditions? MD's typically only take one class in nutrition, and are not encouraged to think outside the box. They look at eastern medicine as voodoo or old wives tales. Depending on where you live, I encourage you to look for physicians who are certified in integrative medicine in addition to their traditional medical license. The only thing about these MD's is that once they learn how the body really works and responds, they move toward less traditional treatments and cannot accept insurance payments anymore because these treatments are not covered. As for other nontraditional practitioners, like naturopaths, I've had trouble finding someone with extensive experience with Hep C. It's very frustrating, which is why so many of us end up self treating.

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As I write this I am sitting with an ice pack on my back unable to bend or walk. You all know I only took Harvoni for 2 wks, that's worse because I never cleared the virus. I have had chronic back pain but it was manageable. Now I spasm all night and day.

Is this from 2 wks of Harvoni? Anyone's guess and I will never find for sure as I am the new 1% that couldn't finish or tolerate treatment.
I can say that I have never felt the same, good days and bad days but the bad ones are really bad. I am back to where I was 3 years ago pain wise and have no clue what thereL cause is.

I feel all over weak, different anxious and should have never put my finger in that hornets nest. My regret is that I was unable to complete treatment and docs are making me feel guilty because of...... I don't see that Harvoni doc anymore I am losing trust in almost all docs now. It's not me I am beginning to feel like that person in the show BOTCHED. It's because I have Medicaid HMO and my docs almost punish me for it or because of it.

First year residents clueless or if they are a good reputable one I know I am the one to learn on after all it's a teaching hospital. Things have changed they used to be surpervised. Not much anymore.
Feeling pain, stressed, powerless, old.

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Sherry I started having major pain and numbness in my hands and feet three weeks into treatment. I finished treatment 16 months ago. I am left with painful bone pain in my feet still. I have good and bad days. I am muddling along and do work. I also hike 3 miles every day. I refuse to let the rest of my life be about pain and suffering. I move along and just deal with it. Inactivity is worse than moving for sure!

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