Long Term Side Effects Of Harvoni (Page 7)

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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Re: chezbonnie (# 118)

I also have lost my ability to hang on to B12. I never had issues till treatment three years ago. Also I have constant sinus problems, ear pressure and pain off the charts in my feet.

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Re: Tania (# 83)

Lady, you need to come live in my body for about 10 minutes... That's probably all you could stand. Don't ever think anything till you've taken the crap!

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OK, I was not going to jump on this wagon, but too much in common. It has been 3 years since my treatment and boy can I relate.It started out slow with being sick to stomach then dizzy which led to vomiting. The VA started doing test after test to see what was going on. They did really try and figure things out so I appreciate that. Well it has been 2.5 years of test Scopes from all angles. MRIs, X-rays and CAT Scans. Diabetes hard to control and Kidneys in stage 3. The latest was another blood test and along with the usual Dr. decided to do a test that showed "rare B Cells" which is not good. Along with an APTT that was too high (takes blood too long to clot). Really bad hypersensitive abdomen inside and skin. Lord knows I am on a lot of meds and pain meds to try and function. I am at a loss and now the VA has pretty much gave up and say that it must just be in my head. That has really added to depression and anxiety with panic attacks. Does anyone have any idea what to do? I am just about to say to hell with it and give up. I am 65 now and retired, but it would really help to get a part-time job. I don't think I can as sometimes there is no way to be able to work. I could use some solid advise if possible. Thanks.

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Re: Enoughalready (# 4)

Hello, your post from 2016 describes my journey after 12 weeks of Harvoni. Right after beginning treatment i felt a surge in energy and thought this is great but it was short lived as now 5 months post treatment blood tests showed severe B12 deficiency, major loss of muscle tone and strength, crepey skin and wrinkles, down to 124 pounds and still losing, digestive issues are worse. Look 10 years older. Doctor says I'm just getting older and I need to accept this as normal. So I read research out of UK studies, about Harvoni RX requiring massive amounts of protein in order to do its job. I had no liver damage after 30+ years of hep-c, diagnosed with fibromyalgia 4 years ago, which all of those symptoms still bothering me daily. Have tried gluten-free, tons of supplements. Post harvoni, headaches worse, muscle and joint pain worse and in new places, Fatigue still same. Dr. appointments are frustrating and embarrassing as I thought I would be improving my health by treatment not feeling like I aged so drastically. I now question if something in Harvoni causes this aging process to rapidly accelerate.

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Re: Melo (# 124)

I feel you. I have been to a ton of Doctors app. Lots of issues. Nothing pronounced, but many issues. Last blood test showed "rare B cells". Anemia, low red blood cells, kidneys showing 3rd stage Kidney disease and a test called aptt and it shows that I am taking longer to stop bleeding. I am a wits end and the Docs are starting to say it is my mind. Real nice ah? I have an appointment with another Doc and see what he says (second opinion). Can this be tied to Harvoni? It all started during treatment or can it just be that just when it started?
Thank in advance.

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Re: Jeff (# 125)

Jeff, I am in a closed group of suffers, we are in bad shape.

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Re: Melo (# 124)

You describe me today! I know it's rather vain but I look like I aged 10 years in two months time. I had no eye wrinkles and during treatment my eye area swelled so badly and left the skin around it all stretched out. I also have creped skin too now. I know other women complained of the same problem after treatment. If I had the money I would get my eyes fixed. It bothers me to look in the mirror now. I care what I look like! I know I am older but I still would like to look nice for work. Even though I feel like crap inside.

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Re: Elizabeth (# 71)

Harvoni appears to activate or worsen Fibromyalgia (which i have) It also creates nervous system disorders in ways that aren't understood. They never should have fast tracked a drug like this, where side effects last years after finishing treatment! Common problems are eye issues, esophagus problems, fatigue and bad headaches. Oh, and ringing in t he ears. I experienced t he worst depression after a month of taking it. I finished with it 5 mos. ago, and I still taste it in my mouth. Also have neurological problems (so far a mystery) related to my sense of smell. Olfactory (phantom) smells that are disturbing ...will be seen by a specialist ENT dr. in a few weeks. I am sorry I ever took it, although i am cured of Hep.C.

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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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Re: Skpp930 (# 129)

Fibromyalgia specialists can be helpful. Mine was great and advocated for me and I am now receiving SSI benefits. He just retired.

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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: Jeff (# 125)

I have a question for you. How can drs say it is all in your head when blood tests are showing serious conditions? Like Kidney disease and anemia and so on? They're not actually saying these are also in your head, are they? Hope we all start improving in our health.

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Re: Candy (# 132)

Heck yeah they are telling people that. They told me that when I was having a severe reaction to epclusa. Or they tell you, oh you've got severe anxiety? I didn't before I took it? All my joints ache. Have constant noise in my head. There is one doctor I talked to at the E.R. recently, he told me he had been to a conference about these wonder drugs as Gilead claims they are. He said they were talking about all the long lasting side effects of these medicines, he didn't go into great detail, but he actually agreed with most of what I told him I was feeling. He said Gilead at this time does not have to release any information on all these complaints. They have a certain amount of time before they have to let the public know about all these side effects being reported long after treatment. I'm really curious to see when the legal cases are gonna start. I believe there already are some started for harvoni, but I don't think so about epclusa yet. It's the same thing really. Epclusa just has another poison mixed in with it. I know it has damaged my nervous system, no one will EVER convince me otherwise.

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Re: Elizabeth (# 130)

what did your fibromialga specialist do for you? I think harvoni caused me to have the symptoms of it, weakness, lethargy, chronic fatigue, severe back pain, feet pain, head ache, ears ringing, symptoms or RA, digestion issues, bloating, constipation, the list goes on

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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: Skpp930 (# 133)

OMG. Conference? They are actually talking about long term side effects? This is shocking beyond belief.

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Re: Karen (# 134)

He wrote up a long descriptive report for Social Security so that I could get benefits. He knew exactly what he needed to say. He also referred me to a good disability lawyer. He instructed me on the best way to exercise and how to pace myself. I already had a very healthy diet and so I was an easy patient to work with. He is retired now.

Basically, we have to figure out for ourselves what works best for us. I go to a therapeutic pool every Monday Wednesday and Friday. I find it is the best way for me to exercise gently and it also takes gravity off my body which eases my pain. I guide myself in the way that I should exercise but I initially had a physical therapist teach me. Not all physical therapists understand how to handle fibromyalgia patients but I found very competent physical therapists. I recommend, to those who have the resources, to go live in nature on a beach. It's the best way to heal. Unfortunately, I don't have the resources to do this now but I have had it in the past.

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Re: Jeff (# 135)

Please know that you are not alone. I am several years post Harvoni and I feel worse than before.. You are so right, no one wants to hear it' they do just blame it on other stuff. But I didn't HAVE the other stuff before Harvoni. I am also a nervous wreck.

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Yes I was taken harvoni in early 2016 for 12 weeks about 4 weeks into it all of a sudden I'm throwing up black stuff then every time I would walk this blackness would come around my eyes and the doctors would just say anxiety well all of a sudden I had a spike in white blood count got sent to a cancer specialist my iron was bad they said I was bleeding somewhere well all of a sudden that eased up out of nowhere I try to walk and it feels like from my calf down to my feet are burning beyond belief and that's still going on today it's eased some however still have unbearable days the reason I believe it's harvoni based is I never had this problem before taking it also I forgot to mention earlier when I talked about the blackness coming over me my bp would be 160/ 103 pulse 100 like I said problem I'm still having 2 years later is the feet thing with the burning also they get nots on bottom of feet when this happens I get bed ridden I'm only 28 doctors say it's nerve damage I have a very hard time believing that for the fact it just started out the blue while I was on harvoni

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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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