Long Term Side Effects Of Harvoni (Page 3) (Top voted first)

I had Harvoni treatment last spring. I am not the same. My nervous system is a wreck. My anxiety problems have increased, depression and lack of motivation. My eyes changed drastically. My thoughts are not focused, I am nervous all the time, can focus or sleep. I had a 2 month migraine. Ringing in the ears is intense. I also was on pigalated interferon and ribivirn, I was pulled off mid treatment because I got so sick. After that treatment, I also had long term side effects. There isn't any back support for post harvoni people, nor are their anyone specializing in the after effect of long term HCV infection, it is NOT just a liver disease, it effects the nervous system and all else. I am at a loss for support with the doctors in my area, none seem to want to do any research and they don't have enough people in individual offices to report they have patients with long term problems. In our groups there are many with long term side effects. The doctor's try to pin it all on other stuff without really knowing. They just aren't listening. I know my body, I know the changes I have experienced. I am just really disappointed that there is not knowledgeable people out there for post HCV and post treatment hcv survivors. I need a support team that listens, they don't. I have extreme frustration to the lack of support after treatment.

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I am with you! The doctors lied. I guess it's cheaper to go on the treatment that it would be to treat the patient for the disease. (that made sense in my head...)

I have even sent the doctor's the Harvoni website info, this site, the site that had the legal suit to release the side effects.

This is very wrong. Especially NOW with all the TV commercials lying, skipping down the beach, after Harvoni life is grand (per the commercial) well, life SUCKS due to harvoni!!!

Unless your at a stage that is life threatening, ask if it is worth it from what you're seeing on this site!

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I had my treatment summer 2016. Since then I have experience changes in my life, anxiety, depression, nervousness, very forgetful and my eyes. I never talked to my doctor because I thought it was my personal life situation that make me that way or age that cause my eye to change quickly. Sometime keep telling me that I am change too quickly. Where do I start to get help? I am so scared now.

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I went through 8 weeks of treatment. I had some side effects during treatment, nothing that was not officially reported. However, since I have finished, which is almost a year now, I have had various issues. My energy levels are low, I get low grade head aches which make me unable to focus as well as I wish. I get pains in various parts of my body which come on suddenly and last for days. One of my thumbs seems to get inflamed more regularly than other parts and lately I had an episode where I could not move it much and it was quite painful. My elbow is also troubling me more often than not. When I get ill, it seems to drag way longer than it should now. My viral load was always very low, so my immune system was not that shabby and I had no liver damage. All in all, while my symptoms were not that bad after treatment, compared to what other people are reporting, not only they have not disappeared, they actually seem to be getting worse. I have a very healthy life style and I think I have done everything I could to get better. I feel for you all.

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Re: Candy (# 128)

I hate to tell you, but your wasting your time with these doctors, they are all going to say it's something else or the Hep c caused it. I had to file bankruptcy from going to all these specialists, they all say you got bad anxiety, vitamin deficiency, or it's all n your head, been to every specialist there is. When the company that makes it doesn't know why it's doing what it's doing, who else will? This was rushed through to make money, that's it! Doctors are not going to side with us, they will side with the pharmaceutical companies. I called Gilead many times, they were at a loss for why I was feeling like I was. We are screwed, that's the bottom line, unless there is still one doctor that cares left on this Earth and we can find him?

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I’m now our year since finishing Harvomi. I am experiencing every side effect that you are, with exception of my hands. When I wake up in the morning my hands are stiff and achy it takes a while to get get them to quit aching and work the stiffness out of them . My little finger on one of my hands has been aching for weeks and won’t stop . They’re ringing in my ears drives me nuts. I’m starting to think this is going to be a lifetime condition.

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Re: Karen (# 126)

Not sure if you are open to me joining the closed group?

I did want to ask if any of you good folks had a blood test that came back with "Rare B Cells"? It also seems I have too few Red Cells. I have been grabbing at straws, but trying to figure out if I am just going to have to have these issues the rest of my life. As I mentioned been going on 3 years and I am worn out. I don't want to sound morbid, but with the list of problems seems to be growing. I have made an appointment to see another Doctor to get another opinion. Also I have been experiencing anxiety to the point of now I want something to calm me down more than antidepressants can do. This seems to be much worst the last month. Anyway as always any information would be greatly appreciated

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Re: Orren (# 139)

My daughter and I read online that the FDA is starting to look into long-term side effects from these medications. There is a lawyer who is also helping at the Law Offices of Thomas J. Lamb: 1908 Eastwood RD. N.C. 28403, 1-910-256-2971 / 1-800-426-9535. I'll have to find the other ones from Texas. I called 2 lawyers, the one on the article about the FDA and a group in Texas. I haven't heard back from them, just a secretary taking notes. Somebody has got to do something and we all are gonna have to stick together and get this going.

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Re: Dale (# 153)

Sounds like you and I are experiencing the same symptoms. Since taking Harvoni, I have arthritis, post exertional pain and fatigue (shortening of the muscles), lack of flexibility, and have been diagnosed with fibromyalgia and chronic fatigue syndrome. I’m now receiving SSI benefits. I’m coping with all of this by eating only organic food, taking vitamins, ingesting gelatin, going to a therapeutic pool to exercise and recovering from that exercise. All I can do is cook, eat, rest, sleep and do gentle exercise and stretching in a therapeutic pool and hot tub and I do self trigger point massage with a thera cane. I’m also starting hot/cold treatments. I heat myself up in a sauna and then I take a cold shower and I repeat three more times.

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Re: Candy (# 156)

try getting some cramp defense brand magnesium, It did wonders for my muscle cramps, although I still have terrible back pain, my gut is just not right, can't eat much at a time, ears still ringing and my vision is getting worse

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Re: Orren (# 139)

It causes Neuropathy. The burning pain in your feet. So many people have gotten it after treatment. Take ALA. (Alpha Lipoic Acid) it's a wonderful anti-oxidant. ...and you can take up to 300 mg. a day. (start at 100).it helps blood sugar, too. good luck. what awful symptoms!

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Re: Wifey (# 19)

I finished Harvoni treatment in January 2016. I have had systemic inflammation and constant pain in my hands and feet since. Lately the pain has moved to hip joints and part of my lower calf. Sometimes the pain moves in a circuit from feet to hips to hands. I feel like I have aged 10 years. Can't sleep, wake up with stiff achy joints. No energy and cranky when I don't get enough sleep. I have been to GP and other doctors who don't know how to help with pain. I was taking a 5mg Oxycodone, 100mg Celebrex and 5mg Cyclobenzeprene along with a 10mg Ambien. Worked for awhile. Now I am having to take10mgOxy,200mg Celebrex no Cyclo and Ambien. Works sometimes. I found a natural pain reliever called Kratom. it helps sometimes. My worry is what do I do when the meds no longer work? I have started fighting the inflammation by eliminating sugar and red wine from my diet. Also working out at the gym and water aerobics. Tired of poor sleep and daily pain. Where do we get help?

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I wish there was a way on this forum for us to contact each other ... without a moderator keeping us from each other for support other than feeling like we are too spread out, any ideas?

Editor's note: While we always wish to encourage a free and open dialogue on our threads, we also have to uphold our stated privacy policy. As such, we cannot allow the exchange of any personal information or links to pages which would reveal a user's full identity.

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Re: Skpp930 (# 206)

Perhaps our time has come. I found this online today:

fleming-law.com/blog/2017/november/drug-induced-injuries-from-harvoni-sovaldi-and-v

Looks like this Fleming Law in TX is looking at Hep C drug injuries. Be sure to give them a call or you can put your info in online.

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Re: HepCFree (# 209)

I just sent them a letter. It is easy to just write down all that has happened to us since treatment. Let's hope Gilead owns up to the issues we are having, and not just the death cases/liver cancer.

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I am in the same boat. Post harvoni 8 weeks after 12 week treatment. My pain in lower back is unbearable, also my hips, wrists, fingers, ankles, feet are all in so much pain. Does anyone have any home remedies for these issues? I also got a positive test for RA after treatment and probably need further testing to see if I actually have RA. I am wondering how long will the pain caused by my harvoni treatment will last.
luna

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Scared mom did you son treat with Harvoni? I couldn't understand your post very well. What can we do to help you....please respond. You have me very concerned for both of you.

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I was treated in early 2015 with Harvoni. I also tried interferon in 2003. I had to stop immediately because the side effects with me were so severe and dangerous. I contracted hepatitis C in 1987 when a medical doctor in China gave me acupuncture with a shared needle. I have been feeling very sick and tired and in a lot of pain. A few months ago I was diagnosed with fibromyalgia. It feels worse than before I was treated with the Harvoni but it was pretty bad before I was treated. Since being treated, some of my health problems have resolved, and I am very happy for that. But it is very difficult living with fibromyalgia.

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I have been tested for inflammation and vitamin levels all tests come out normal. I am nearing my 24 week post tx lab and I am still suffering from the following: headaches have turned in to migraines (I have not had a headache but once or so a year before harvoni). My feet and right leg are in pain with nightly cramps, wrists are still cramping up on me, now I have had a mild stroke with BP at 169/113/103 and my heart is fluttering at times. I am scheduled for an MRI of my head to look into the headaches. Is anyone else out there suffering with these post harvoni symptoms?

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More concerns from Harvoni, and it's been 1 year since I finished the treatment and am still suffering from side effects...

" Previously Unforeseen Risk Tarnishes Hep C Wonder Drugs

Researchers share their unwelcome realization that liver cancer acceleration may be associated with Hepatitis C treatment.

The improvement in Hepatitis C treatment success marks a dramatic change in the prognosis for most Hepatitis C diagnoses. New direct-acting antiviral drugs boast viral eradication rates in the high 90th percentile, rendering hope that the Hepatitis C virus can be eradicated. Until recently, the only major obstacle surrounding these Hepatitis C medications has been their outrageously high cost. However, a large-scale prospective study has revealed a surprising caveat – revealing that the direct-acting antiviral drugs for Hepatitis C may not be the panacea the medical community had been hoping for. "

http:/­/­www.hepatitiscentral.com/­news/­previously-unforeseen-risk-tarnishes-hep-c-wonder-drugs/­

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Hi Marie, try ENT-otolaryngologist doctor, and ask the doctor to make all possible tests! Also try vertigo exercises, will see what happen!

Good luck!

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