Harvoni Side Effects (Page 18)

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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Well, I am in week 3 and the headaches, the nerve pain down my leg, the pain in my kidney area as well as being so tired it is really annoying and painful. I also am so thirsty I cant get enough water. With all these symptoms add that trying to urinate is also a big worry where there was none before... I can drink a gallon of water and barley a drop comes out. It is so dark yellow, I am really worried about that and all these other symptoms... I dont know if this is going to get worse or not. If it stayed the same, its still bad. All these pains, nerves and kidney as well as really quite severe headaches is really very bad and painful.... This is my last update until next week, if I make it that long..

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Jim how long are you doing it for? I know its rough and I am one who is left 17 months later with chronic feet and hand pain, but glad that I am undetected. For some that didn't have symptoms prior to treatment I can understand stopping but I was having bad liver area inflammation pain for months and was more afraid of that!

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I am on a 12 week program. These first 3 weeks have been harder and more painful than I had hoped. Had none of these symptoms before and my liver had no cirrhosis but was told I should have it done by the VA,, so now keeping my fingers crossed this is just temporary because I dont want these issues when I am done.. Good luck

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Jim, How long is your treatment? Were you ever treated with interferon, etc?

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It worked for me as of now. But i have a very bad cirrhosis and hep c. hep c cured (maybe) and no side effects except i had a headache for 1/2 a day and very thirsty. All of the bad sides, i had them before and i had the old way of pills and pegasus and they still gave me the meds and it worked. I also take pain med methadone for pain. all in all. it is all good as far as i am concerned. But if i had no effects or very little, i don't think i would take it. I was at the end. so it was a win win for me. Just very tired and have trouble breathing. I have ascites from a liver problem where liquid makes your belly fill with fluid the liver doesn't work with. Hence the belly fluid puts pressure and compresses the lung and makes it hard to walk and breath but for about 30 steps and then stop and get air with heavy sucking in air. Hoping i don't want to pass out in the street. If feeling good stay with it. don't look for trouble. I was surprised that they let me get the new med Harvoni. i think they used me AS a trial patient to see how it works on very serious liver Hep C patients. Reading everything here and other sites, I think i would not do it unless i was showing bad signs that affect our quality of life. Remember the DR works for YOU. U tell them your problems and they're about helping out sick people. Demand relief!!! But you have to be truthful. Good luck.

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My treatment is in week 3 of 12 weeks, I have never treated it until now. I have had it since the early 80's. I got it in the Navy, now because my viral count and other minor effects, mainly fatique, The VA said I should do this, my only side effects would be a slight headache and perhaps a little tired. Theyve been wrong on all counts as my earlier post stated... I am praying all these side effects are just temporary but they seem to be getting worse as time goes by. I chose to live with it until I was told all this damning information about what was going to happen if I didnt start Harvoni now,,, now I am sicker then I ever was and getting worse... No turning back now

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Jim, Although I was horribly sick throughout the first 4 months of Harvoni, I did start to feel a bit better around the middle of the 5th month. Your doctors are telling you what we all heard: Tired and headache. They have no idea what the real symptoms are because it's such a new drug and Gilead didn't list all of the side effects on the FDA website. There are many people who are upset and angry about the fact that we didn't receive any emotional support nor were we told the truth about the side effects of Harvoni. One thing that helped me with my nausea was ginger beer; an all natural drink that contain real ginger. Of course you should stay hydrated but water and other fluids are not enough to keep the side effects at bay.

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6 Months out from Harvoni 8 week treatment - Viral load count -0- joint pain has finally gone away, fatigue isn't as bad but still have headaches everyday that I never had before.

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I don't think that interferon was worse than Harvoni. The doctors and their staff were really supportive and offered some meds, etc., that helped with the side effects. I received absolutely no support from the doctors who prescribed my Harvoni. They acted like I was imagining the serious side effects or they just flat out declared they knew nothing about the drug. I guess they decided they could prescribe it but they didn't have to offer any support to their patients. The mantra was "You're lucky you were able to obtain Harvoni".

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go to youtube and look at the vid "harvoni day 50 stage 4 cirrhosis reversal". It explains why so many suffer pains and mentions the remedy.

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There is a Petition on Change.org for so many of us whose Doctors were not transparent with side effects. Please sign it! Put Harvoni in the search. We need to get out there that the doctors AND the company inform people before they go on this med what they might face in the future. Many of us asked and were denied the truth. Please sign so the rules change. Don't deny patients their future health.

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I spoke with my pharmacist last night about side effects prior to beginning harvoni. Nerve pain in the back and legs are definitely a side effect. I am lucky that I have no cirrhosis and my enzymes are good right now. This is after 20 years which amazed doctor!! I eat VERY healthy tons of fresh vegetables, fresh fruit, etc. I don't know if that has helped or not but, after having an extreme reaction to fentanyl pain patches I live on Greek yogurt, laughing cow cheese, some fruit and meat kills me. Fentanyl almost KILLED ME!!! If you have to take pain meds stay away from fentanyl, it's a killer!!!!!

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Have you tried neurontin/gabapentin (generic name) it is for nerve'm pain

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To harvoni:
I watched your video and loved it! I am at day 16 on Harvoni, have stage 2 fibrosis (no cirrhosis) and a fairly low viral count, 400k. I, too, have done much research prior to starting Harvoni. Some of my daily supplement regimen is similar to yours. I take a methylated B complex because it is supposed be better absorbed in that form. I take a mineral complex, omega 3, multivitamin, vitamin c, and alpha lipoic acid. I did stop taking the milk thistle when I started the meds, but it looks as though it didn't have adverse effects for you, so I might reincorporate it. I also take probiotics that stimulate the immune system, drink juices I make (beet, carrot, celery, cucumber, etc.) I include celery because it stimulates the kidneys and helps with elimination. I try to sweat in the sauna a few times a week and exercise to keep my lymphatic system moving and also to aid in toxin elimination. My morning smoothie contains blueberries, cranberries, apples, avocado, flax meal, banana, ginger, almonds, pumpkin seeds, sunflower seeds, whey protein, and almond milk. I take coconut oil in my coffee (really tasty). I sometimes take ACV and now think I should do that daily.
So, I have a ways to go, but so far so good, no major complaints. There was no way I was going to take this drug without supplements, especially after reading so many horror stories. I really wasn't even going to take Harvoni at all. So, I wonder if I should drink alkaline water at bedtime. You have me wondering about this. And increasing pectin intake, which I know is good for cirrhosis but couldn't hurt for me to take more. Thanks so much for sharing your journey. Enjoy the rest of your hep c free life!

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Just started harvoni 2wks ago for hepatitis c tx and have extreme hope and low back pain, in joints?

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If you think you are going to get any honest answer from Gilead you are mistaken. They have minimized and continue to minimize any and all side effects. Please read our comments many of our lives have been changed forever and you are worrying about the type of water you drink? Hello!

This is a very strong drug, it affects people in different ways, if I knew then what I know now I would NEVER have allowed my doc to PUSH this on me, but that's just me. I too thought I had a wonderful doctor.

Unfortunately Big pharma is about making money, I repeat making MONEY! I wish you the best outcome but I don't think the type of water that you drink is going to matter as long as its lead free. Just the fact that many of us were stable feeling quite well other then a pain here or there are now experiencing a downward spiral that is hard for us to comprehend. Hard to accept that our docs lied to us, some didn't know I cant say all docs lied but for those of us who were pushed like now or never after living for 30-40 years are guily of gross negligence. A more insidious type by just withholding information is negligence. Think of it like a car you know the breaks are not going to work but you allow your 18 year old to learn to drive with it. The same thing only its our lives and not theirs.

Please keep in mind there IS a stigma to HEP C many docs think oh what the heck, they abused their bodies anyway, these are sub standard people, not part of the 1% we might as well exploit them, after all our intentions are good, its our JOB to clear the virus. YET THEY KNEW when asked and I ASKED OVER AND OVER AND OVER, and I was passed off to a NP so that the doc really kinda sorta wouldn't be held accountable.

Some of us have completed treatment so far with little to no sides I think men are tolerating it easer then women, maybe women are on the internet more. Who knows, its a risk you already are on it, I wish you luck but many of us would do anything to have our lives PRE HARVONI back. The anger I know permeates in my post, I am in CONSTANT PAIN and my life is spiraling downhill.

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NewDay, I agree with you 100%! In fact, one of the doctors at UCSF said to me "Now's your chance" with the implication that, like you wrote, now or never. I was begging them for some way to alleviate some of the symptoms or, at least, validate the fact that Harvoni does cause side effects much worse than "headache, fatigue". The doctor told me to drink lots of water. I was insulted by that comment because I had already been through two different courses of interferon and anyone who took that drug knows that hydration is very important. Unfortunately, this particular doctor is one for whom I help high esteem but I no longer respect her. I don't believe for one second that the doctors who prescribe this poison don't know how difficult it can be on the body. Thank you NewDay.

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i made sure that my Dr at the VA knew that i was in great pain. When he treated the pain , everything else feel into place. I am alive and thngs are on hold hep c wise. But u have to treat any extra side effects with this drug, then thy have to take care of what they brought it on. now they should take care of it. get ride of the pain and your world will get better. good luck

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I didn't have much pain while on Harvoni. The nausea was severe, the depression and anxiety were nearly unbearable. Lots of other sides but, luckily, no pain. One thing I know for sure is that it has become nearly impossible to obtain a prescription for pain since the new laws regarding opioids (about 2 years old). Not to mention the stigma of Hep C which is sometimes transmitted via needles. I wouldn't have been able to sleep on Harvoni if it weren't for my wonderful primary doctor who prescribed me Xanax. She has known me for over 12 years and doesn't pass judgements, etc.

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New Day: There was no need for you to attack my question about water to the person who calls himself Harvoni. I watched his videos and read all the comments he and others posted there. I got blasted on a hep c forum a while back for my extreme concerns about Harvoni. They didn't want any truthful discussion, so I quit the forum. Now I'm in a private group that is so open and supportive. I spent months educating myself and receiving advice from health professionals who practice integrative medicine. You act like there's something wrong with wanting to know about the healthiest option regarding water while on this drug. It's my body, my health, so please don't criticize. I accept and believe that people have terrible neurological and metabolic side effects from Harvoni, which is why I have educated myself on how to possibly avoid all of that. I am grateful to those who have taken the chance before me and have shared all of their trials and tribulations. Without them, I wouldn't have a clue. So far, I'm on day 21 and feeling good. I spent 5 days camping and volunteering at a music festival with no problem. I am now noticing just how tired and depressed I had become during the past few years, and just keep my fingers crossed that my diet, supplements, and other regimens will limit any side effects. I do have my theory on who should and should not be given this drug, based on some common health characteristics I keep seeing. I don't believe Harvoni was evaluated long enough and shouldn't have been fast tracked by the FDA for approval. You need to keep your anger directed at Gilead and the FDA, not at fellow infected people like me. We're all worried and afraid for our lives just like you are.

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