Long Term Side Effects Of Harvoni

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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@prrdrr,

Sorry to hear about your experience with Harvoni and other treatment options. I feel the same way about how many of these doctors are so close-minded it's almost unbearable to have an open ended discussion with them. They all seem to go by the classroom textbook and if it's not in that book they refuse to listen. At any rate, I know there are great support groups here on MedsChat involving post Harvoni patients who may have more insight to offer. I went ahead and linked to the few discussion threads I'm presently aware of that you may wish to participate in:

Harvoni Side Effects

Harvoni Withdrawal Symptoms

Post Harvoni Reduced Immunity

Side Effects and Lack of Transparency Harvoni

Post Harvoni 2 Months Still Feeling Intermittent Symptoms

I hope this helps and wish you good health!

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Hi I am almost two years post treatment now and I so agree with you. I gave up seeing any doctors since they have no answers that make any sense at all. Many are told they are imagining it. Anyone can search the internet to find hundreds and hundreds of people's posts about long term post side effects. We are forever changed. Something I have just learned to live with. And I am in pain. But I move on because we have no choice. I just want the medical community to at least admit we have been damaged.

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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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Luna of course work with your own doctor but I used Tylenol as needed which I limited to once or twice per week. Just to get some relief on occasion. Otherwise I just kept moving. I walk a couple miles per day with my dog in the woods. It keeps me sane and helps my joint stiffness. Sitting idle is worse than moving. I stiffen up too much! Now that almost two years have past it isn't quite as bad as the first few months for sure. I saw a specialist and they thought I had RA as well. In the end it wasn't and I do have joints that are deteriorated in my feet and hands. But more test showed no RA factor in blood and not enough inflammation to label me. That is the case for many of us. I feel Harvoni sped up my aging process. From terrible facial wrinkles to joint problems. I had neither prior to treatment. I look like I aged ten years. It sucks!!! Have your doctor check your Vitamin B and D levels please. Many of us were found to be seriously low in both and that can cause a lot of problems with your pain.

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I am also in need of some support. My son wants to end his life. I don't know what to do for help.

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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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Hi Scared Mom - I agree with the previous poster that we are worried about you and your son!

I just responded to your message in the other harvoni thread which is far more active. Please read it ASAP. The discussion thread is:

Harvoni Side Effects (newest posts first)

Best wishes and hope this helps!

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Thanks enoughalready,

I have a great GP, as my GI specialist got me the drug and offered NO followup ...nothing. I had a blood draw this week for my vitamin levels. GP is checking me every 4 weeks since I started and checking anything I can come up with from forums. I was on hepmag and people got really hateful there about harvoni being such a miracle drug and accusing those of us symptomatic after tx as being hypochondriacs with pre-existing conditions. Hanging in there...looking for Vanessa where is she?

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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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Sorry your in the same boat with many of us! I wish I could offer some help but I haven't found anything or anyone who will help me either. I have found at least some good people in support groups for post treatment problems. We feel we are not alone now.

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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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Those are all symptoms of RA. Hot baths with salts are very helpful followed by deep relaxation meditations while you are lying down. Aqua therapy is the best form of exercise. Be gentle with yourself. Make sure to drink lots of water during baths and Aquatherapy. Go to a good chiropractor who specializes in nutrition and can recommend appropriate supplements. I'm taking a lot of nutrametrix supplements. If you can afford massage, that would help too.

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Ringing of the ears intense after 3 month completed regiment post Harvoni back in Feb 2016! Went to otolaryngologist, neurologist, internal medicine doctor, Gastrointerologist, they all prescribed supplements, after taking them they didn't work, I tried a second round, still to no good! Ringing in the ears is constant 24/7, went back to otolaryngology no cure he stated!

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Hi Enoughalready,

I very long ago talked to the pharmacologist and asked what a difference between Tylenol and Advil, he told me that if there were or have problems with the liver, it is better to take an Advil, not Tylenol.

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I am trying massage therapy with electromagnetic acupressure and it does help..also getting a steroid shot every 3-4 months helps some with the arthritis type pain. I've been diagnosed with RA at this point. Seems like so many of us end up with continued suffering we did not have before harvoni.

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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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What about my Psychiatrists prescribed /1-10mg of Diazepam(3)times a day for extreme Anxiety, this has helped me with sleep and have no other systems other than waking up every morning at (5)P.M. to per but also have burning sensations in my bowls, but after going to re leave myself, I feel the burning sensations go away, any suggestions?

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My husband completed Harvoni treatment in 2016. Since then he is sick or in pain most of the time. He is moody and forgetful. And I believe it has had a major effect on his ability to get and maintain an errection. Has anyone else noticed this?

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Try to find a neurologist who is intelligent and caring. I too tried interferon/ribavirin and could not tolerate the treatment and stopped after the first shot. Severe side effects lasted three months and I never fully recovered. I have now been diagnosed with fibromyalgia and I had to pay out of pocket to get diagnosed. Seems doctors and health insurances don't want to acknowledge our health problems.

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Hi, I was treated with Harvoni in 2016 and still have severe side effects (brain for, memory issues, fatigue, photophobia, muscle pains). I was healthy prior to treatment (aside from HCV that really wasn't bothering me at all and only found out about it when I was tested). Was anyone who may have had similar issues diagnosed and can you tell me what the diagnosis is? Also if anyone has similar issues, or if anyone can suggest where to look for help, I would greatly appreciate it. Thank you all!

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I know this is old but my uncle had treatment and I'm sure it cause him to become schizophrenic you have been diagnosed and he has to take medicine it just happened I don't know where he went nuts did you ever figure out anything on this cuz I would much like to get this investigated .

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Re: Marie (# 14)

Hello All, it’s March of 2023 now! Still to this day have tinnitus, though a neurologist requested a MRI and requested me to take a supplement called “Vinpocetine”10 mg to support Brain Blood flow ! It is in the Brain! I still get constant steady low ringing & sciatica is new for the past 2 years now, nervous system acting up again! I’m going for Physical Therapy now! And I am awaiting for approval from my insurance for a MRI . Since the
X-Ray diagnostic test stated on the Report that an MRI is needed in order to get a clearer image! Boy Oh Boy!

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I took harvoni in 2019. I had hep c for 33 years. After the Harvoni I thought I had a little more energy....but about 9 months later i was dragging around just to do the basics. This just got worse and worse. Every time i looked up post harvoni messages they were testimonials of how great everyone felt. I knew that was big pharma. But it wasn't until I stumbled onto this site that I got the truth. I feel TERRIBLE! I live on sweets and coffee just to have enough energy to clean my room!

I'm just constantly exhausted. I wear a back brace just to stand up straight. My joints hurt....which they never did before...i developed trigger finger in several of my fingers that is not going away. I got a large bone sticking out of my heel that has something to do with my heel. Worst of all my memory went out the door. I cant remember at night if i took my morning meds. I can hardly remember what day it is. I misplace things 3 minutes after i use them. I truly thought it was hepatic encephalopathy...

But I'm suppose to be cured of hep c right? I cant spell or do math anymore...and whatever is going on its getting worse. I've been making preparations for possibly being so weak and exhausted in the future that i'm not getting put of bed...i bought wigs and had my make up tattooed on. To top this all off ... I have had bipolar for 40 years. As soon as any medical doctor sees that than instantly all my problems are mental and not physical. I know the difference between mental depression and physical weak.. exhausted.. confusion!

I'm at home constantly ....trips to the market have to be planned ahead. If i didn't ask God to help me with every little thing id most likely die under a bridge.

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Hello i took harvoni in early 2015 and over the years I've noticed my muscles seem like they are diminishing despite my constant workout sessions and also my hair is falling out like crazy! I have half of the hair that I used to have. I just turned 40 years old in January something's wrong I know it has to be that I've I didn't even have any liver damage from the hepatitis c I took care of myself all the years that I knew that I had it I drank green smoothies I ate a vegetarian diet I exercise and I wish to God that I never would have took harvoni

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Re: Skpp930 (# 242)

I agree with everything you said ,it's so frustrating I try to explain to my dr about what I'm going through ,but all he says is "IV read there's no serious side effects with treatment ,all the experts like Gilliard pharm say it's a wonderful cure,so he doesn't really believe what IV told him, omg ,wish I'd never touched it I felt ok pre treatment.what part of the world are you from??

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Re: Kathy (# 250)

Thanks Kathy please take care, you are not alone.

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Sorry to hear about your experience,I'm going through same hear in Australia swollen numb feet nausea breathing problems heart issues swollen stomach ,I feel I was better pre treatment with epclusa( similar Harvoni) nil support ,drs know very little about DAAs,seems new problem every week,all the liver so called experts can do is blame it on how you enjoyed your life.wish never touched it.take care.

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I finished treatment in April. I am having a difficult time. A lot of the same symptoms as others but I get so angry at nothing. I cannot control it until it’s to late. It’s just not who I am. My wife is at her wits end.

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I'm 68 yr old finished epclusa about 3 yrs ago ,IV had nothing but problems since finishing treatment epclusa harvoni very similar ,numb feet toes are a mess swollen stomach many infections every week something new now asthma breathing problems which could be heart related ,no support my 30 yr old dr has no idea about it ,wish never touched it hep C drs are liars.

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