It truly is a new day in Hep C treatment. The effects of using Harvoni are a far cry from the often brutal effects of the old Interferon/Ribavirin standard treatment. Fatigue, Insomnia, Brain Fog, Night Sweats, Irritation/Anger, Restless Leg Syndrome, Hair Loss, Depression, Memory Loss, etc. etc. etc. I believe there were some 60+ posts under the tag "Hep C treatment side effects" during the time I was on the old chemotherapy. This time around the side effects are much fewer and more easily managed.
I have noticed a persistent low-grade headache; some abdominal effects notably diarrhea and bouts of truly astonishing amounts of gas production; a bit of nausea occasionally and finally, quite contrary to the advertised fatigue, a bit of a speedy effect, especially if any caffeinated beverages are consumed. The headache is manageable through over the counter meds, the gas is manageable by removing myself from the company of others and enduring the effects alone and the energy boost can be useful though it is accompanied by enough loss of focus that it is best avoided.
It will be interesting to keep track of how the side effects evolve over time. So far, the nausea has decreased a lot, the headache has slowly been increasing and the speed effects are something I am trying to keep away from. My primary hope in the long term, is that killing off the virus will help with the brain fog and other long term memory and cognitive deficits of Hep C. Until then I can just keep on wearing the wrist band with my name on it...
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Hello there, nice blog post.
ReplyDeleteI'm aware of common side effects of Harvoni such as nausea and headaches. Beats interferon, but my question is about weight gain. For 12-week treatment, is there any indication about weight gain by Gilead? I've read about Harvoni and weight gain and lots of people are experiencing that effect. If you consider taking Harvoni for 3 months, should you also consider going on a diet after that?
I've been on harvoni for 3 weeks. Weight loss for me. I have struggled with weight my whole life and was worried about that myself. I just recently lost about 75 lbs so that was a big thing I was concerned about. I have actually lost some weight. I have had some negative side effects. Very irritable on it. So irritated that I'm on this thread seeing if I'm the only one who feels this way. I feel great and then get slammed with fatigue and want to punch everyone that talks to me. I feel very up and down on this. Hopefully it gets better. Other than that I've had headaches, fatigue, anxiety, and aches. I have just been experiencing more mood swings than ever. I'm usually so happy and easy going and since ive started this I feel negative and angry and have to struggle to be in a conversation with someone. If anyone else is feeling this please fill me in
ReplyDeleteHi first day of taking the pill Harvoni 12 hrs into it and already feeling mad and frustrated. I hope to God I don't gain weight!!
DeleteI'm glad someone else has experienced crankiness ... I'm normally quite pliable with family but last weekend I had a really cranky feeling towards my older family. I just made it clear from the start that I may get cranky and for them not to take it personally. I am cranky and felt that they weren't making allowances for that. Hopefully this will blow over.
DeleteI just had a f...k you response to some criticism .... Not how I would normally respond.... But.....only a month into the treatment .... Hopefully I have some family who will still want me to be their mother by the end of the 3 months!!
I completed 84 days of treatment on harvoni this pass October 2016, I lost 14 lbs., I have Diarrhea since I completed harvoni, my stomach gurgles, churns, and just seems to go through all kinds of changes, gas and bloating, I stopped drinking coffee because that seems to really bring it on. I have to carry Imodium with me when I run errands, and even taking 2 of those stops nothing I seen my Doctor today and he believes its the Harvoni as well. He told to eat Activa yogurt, Switch between Peptol bismol and Imodium and to let it work its way out of my system, if it does not stop soon, I will then see him again, I suppose this will affect all of us in different ways, keeps notes and write them down, If it cures the hep C it will be worth it I just do not want to lose more weight.
DeleteI've been on harvoni for 3 weeks. Weight loss for me. I have struggled with weight my whole life and was worried about that myself. I just recently lost about 75 lbs so that was a big thing I was concerned about. I have actually lost some weight. I have had some negative side effects. Very irritable on it. So irritated that I'm on this thread seeing if I'm the only one who feels this way. I feel great and then get slammed with fatigue and want to punch everyone that talks to me. I feel very up and down on this. Hopefully it gets better. Other than that I've had headaches, fatigue, anxiety, and aches. I have just been experiencing more mood swings than ever. I'm usually so happy and easy going and since ive started this I feel negative and angry and have to struggle to be in a conversation with someone. If anyone else is feeling this please fill me in
ReplyDeleteWeight gain for me. I have gained 7 pounds in the three weeks I have been on this magic. The gas and bloating is less than desirable and the headches, well, those are getting better. I will continue to hang in a small will try to cut calories.
ReplyDeleteWeight gain and bloating for me feel miserable from it..cant wait until im done i hope it works
ReplyDeleteSaturday (yesterday) marked the beginning of my 3rd week of Harvoni. I still have some pretty bad inmomnia; cramps in the upper stomach/diaphragm area. I drink some Fresca or Sprite for the carbonation so I can burp; and burp I do.
ReplyDeleteI don't when I have to "go" or when it's just gas; but I've already experienced the embarrassment and humiliation of thinking it was just gas. I'm in the bathroom A LOT. Also, gums and roof of mouth horribly sore and sensitive; eating smoothies and frozen fruit mostly.
My husband will be trying the Harvoni in May..apparently the clinic he is going to has had 100% success rate in a complete Hep C cure..so far with minimal side effects. He has severe scarring with his cirrhosis and had tried the interferon and some others. We shall see what happens now...
ReplyDeleteI am starting Harvoni in a day or so and am deathly afraid. I have very low viral count, under 500,000 and have had hep C for years I guess, though I never got sick so I never knew. I cannot afford to gain a pound, I am plus sized and on the large side of that already and barely eat now. I have no liver damage yet either. This med is so new it scares me because they honestly have no long term effects records yet. Ive heard it can cause breathing difficulty in a few people which would kill me outright, as I have COPD as well. The Dr seems unconcerned but I am. I am very weak when it comes to any pain. I am already so tired I cant stay awake so fatigue would ruin my life. If I get hyperactivity thatd actually improve my situation. It seems that everyone actually does react opposite on this med and I wonder why but no answers. A friend took Harvoni 8 weeks and had no side effects whatsoever not even a headache.
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DeleteStarted my 3 month treatment Monday, June 20th. I had a big drink of Coke Zero and now have hand tremors. I didn't know that some patients have experienced feeling speedy after having caffeine.
ReplyDeleteA relative did a 2 month treatment last year. The only side effect he felt was mild nausea, if at all. No noticeable weight gain or loss. He was instructed to take small light meals and "to avoid heavy, fatty meals, and noxious odors." He took the pill everyday at 4PM, so if he got nauseous/fatigued, it was toward the end of the day. I decided to follow his routine.
Glad to have come across this blog. Will add more feedback as I go through this journey.
Posting as Anonymous, but signing off as "Ms6.20.16."
Started treatment on Thursday 8/25/16 day 3. Last night I was very restless night of sleep. I couldn't get comfortable,hot then cold. I still feel better than I ever did on the pegasis!
ReplyDeleteNice Informative Blog having nice sharing..
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The side effects, well, most of them are quite mild.
ReplyDeleteWhat concerns me is the new FDA warning about reactivation of Hepatitis B. Apparently some Hep C patients got Hep C reactivated when on Harvoni. There is a bit in the article about Harvoni side effects.
Good lucki been treated for over 2 yrs these side effects everyone is feeling are not even a big memory to me especially how the results are EXTRAORDINARY. ...KEEP PUSHING
ReplyDeleteMy husband is in his first week and having some symptoms but are getting better every day. He drinks TONS of water, as others have suggested. Thanks for all the advice and encouragement. If he is cured, it will all be worth it:)
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Hi everyone. I am on day 10 of treatment with Harvoni.
ReplyDeleteA little about my background: I am a 35 year old woman. I've never been treated for hep c prior to now. Doctor says I have no cirrhosis, but I do have a slightly fatty liver.
I was diagnosed with Hep C about 12 years ago. I've never really experienced any many symptoms (or at least, that's what I thought).
I did have some slight fatigue (I thought it was because I was working so hard or, when I used to smoke pot, I thought that was the cause of my tiredness).
Also, about two or three times a year, I would have a horrible stomach bug that would flare up when I ate too much stuff with fatty oils (like,things cooked with canola oil, or stuff with high levels of naturally oils such as raw pumpkin seeds). It took me years to figure out what it was that was igniting this random stomach problem. Sometimes I could eat these things and be fine and other times I'd get randomly sick. It wasn't until I got sick two days in a row after eating a huge amount of raw pumpkin seeds,and I did some research, that I learned about how the gal bladder and liver work together and which foods were causing me these weird, random, twice a year problems. I thought maybe it was irritable bowel syndrome or h. pylori or all of these other stomach issues that I learned about online. Looking back, I now know these issues were the result of my Hepatitis.
Your liver works in conjunction with your gal bladder to break fats down, so if you're experiencing the occasional stomach upset and you are hepc positive, chances are that is why.
Same with my being tired; I now understand exactly how the liver and how hep c work and which of my slight symptoms were caused by my hep c and not by normal, everyday stuff that everyone experiences. .
Anyway, so far, the treatment has not been bad at all! The last couple of days, I have experienced headaches off and on, some slight dizziness,fatigue, and night sweats. I am 100% sure though that these symptoms are a result of allergies (the mold count in my city has been through the roof all week), as well as my period (my period started the night before last), which is exactly when I started feeling bad.
Here is what I believe has helped my symptoms to stay minimal to non existent: When I wake up, I make a huge smoothie with two bananas, a bunch of strawberries, blackberries, blueberries, almonds, and water. I drink the smoothie and then I take my pill. Immediately after taking my pill, I drink three 8oz glasses of water with some lime squeezed in (I have a mason jar with measurements etched on the side and one jar equals 24oz). I then take a B12 supplement (a study has come out that states that patients have a better chance at success in hepc treatment when taking b12 supplements everyday). I then continue to drink water all day. I am never without water. By the end of the day, I have had at least 100oz of water.
I am also vegan, so I do not eat any dairy or meat or seafood. My diet consists mostly of beans, legumes, rice, fruits, veggies, and muesli or granola cereal (the cereal isn't healthy because it's full of sugar, but it beats going out and getting ice cream or cookies :/).
I'm not skinny by an means (I'm 5'5" and a size L/XL or a U.S. size 12), so I'm not some super thin health nut. In other words, if I can eat this way, anyone can! Prior to going vegan, I lived red meat and dairy and seafood more than anything!! Anyway, meat and sugar are really bad for the liver and seafood is filed with all kinds of crap now because of all of the oil spills and crap that has been dumped in the ocean. I think that my moderately healthy eating habits, in addition to my constant drinking if filtered water and my daily b12 supplement, are why I haven't had side effects thus far. Good luck everyone!
Ugh, sorry about all the typos
DeleteHi my name is Rebecca. I'm about to start my treatment. I currently weigh 249lbs. I'm hoping that on my journey to cure the hep c that I am able to loose atleast 70 lbs.��. That is what I truly desire . I use to weigh 320 lbs last year. I just recently had a full hysterectomy. I went from 270 to 249.just in 2 months.I tell you, I'm a bit nervous and scared to start the treatment. I'm not looking forward to the side effects.
DeleteI feel like we all have to die of something. I don't consume alcohol. I use cannabis edibles for anxiety pain and sleep. Treatment just hasn't appealed to me yet. Feel like I'm being solicited by a soctor I barely know and the conversation never starts out how are you doing living with hep c? It's always, I see you are not being treated, can I ask why? Because I care about my quality of life more than your bottom line. MyFate♡
ReplyDeleteI feel like we all have to die of something. I don't consume alcohol. I use cannabis edibles for anxiety pain and sleep. Treatment just hasn't appealed to me yet. Feel like I'm being solicited by a soctor I barely know and the conversation never starts out how are you doing living with hep c? It's always, I see you are not being treated, can I ask why? Because I care about my quality of life more than your bottom line. MyFate♡
ReplyDeleteI feel like we all have to die of something. I don't consume alcohol. I use cannabis edibles for anxiety pain and sleep. Treatment just hasn't appealed to me yet. Feel like I'm being solicited by a doctor I barely know and the conversation never starts out how are you doing living with hep c? It's always, I see you are not being treated, can I ask why? Because I care about my quality of life more than your bottom line. MyFate♡
ReplyDeleteMy wife did the 90 day program and did fine. But now 3 months later is having aggressive hair loss. Has anyone experienced this?
ReplyDeleteI finished my 12 week program at the end of December and continue to have serious hair loss. I am a 61 year old female that previously had very thick hair. I'm actually reluctant to brush or comb my hair at all now because I'm afraid it will all disappear. I am losing literally several handfuls of hair every day....I'm getting a receding hairline and just looking awful. As an extra "bonus" I've gained over 30 pounds in just 3 months. Gotta love that.... just shoot me now.
DeleteI am a 63 yr old female,I apparently contracted HepC, 40 yrs ago.I already had cirrhosis by the time it was diagnosed.I also have cryoglobulemia and vasculitis.I was treated with Harvoni for 6 months. It's been 18 months since I finished treatment. I've gone from weighing 115 lbs to 140 lbs, a weight gain of 25+ lbs. I've also grown breasts, at 63!!! I also use to have really thick curly hair, now it comes out in handfulls, I have bald spots and a receding hairline too!, I hardly have enuf to braid, Im afraid to brush mine too. I also get migraines constantly...my liver Dr just said oh its the Harvoni,alot of people have weight gain....???? I read somewhere that alot of people are having similar side effects after treatment and some other really bad ones.Some folks even stated they regretted taking the Harvoni,, and would rather have HepC.....Can't seem to find where I found those comments now tho??? They seem to have disappeared.
DeleteI am not the heavier side and have experienced problems with weight loss and have had stomach issues multiple times a year which I would assume was a problem with my gut. But I was diagnosed with HEPC recently, though my enzymes are elevated, there is not damage to my liver. I am getting married in 12 weeks which is as long as the course of my medication. I am really worried about the weight gain since I spend most of my time in the gym losing it. Can anyone make any suggestions on how to lose weight while on harvoni
ReplyDeletechances are,you may not gain weight till after your treatment.....I started gaining 6 months later, and I gained 25 lbs by 1 yr post treatment. I'm partially disabled so have been exercising on a exercise bike,have done 200 miles so far and haven't lost a lb. My thighs have just turned to muscle. So dont let it creep up on you!! I was under 120 lbs my whole life,I'm 63 now. Dr says weight gain is a common after effect of Harvoni..Nobody mentioned this to me!!... Good Luck!!
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