Hep C Discussion Forum

FeelingGood · Member

RE: Harvoni Side effects

HillCountryer · Newbie

Hi hill418,

I'm new to the forum and started here today. I have three pills left on a twelve week Harvoni treatment. My first post is in the New Member Area where I stated I had no side effects but in reading WarriorWolf's post here he mentioned "strange dreams". That's is something I have been experiencing. Not all the time but quite allot and more than I ever have before in my life. I will wake up and go what the .... is going on in my head. No bad things just crazy things that I can recall so vividly. It's kinda of wild cause I've never remembered dreams like this before. Dreams can be a science in itself so I'm not sure if it's the Harvoni. Keep on it cause it works. I was almost at zero in two weeks and have been zero at four and eight weeks now and feeling better.

Good Luck

Groupergetter · Guru

Hi kdh. welcome to the forum. Lot's of great folks here. Very, caring, compassionate, knowledgeable, and understanding. We've experienced many of the issues you're dealing with. Is your doc a hepatologist/liver specialist or gastroenterologist? Have you had a liver biopsy? What tests have been done to determine you are in "end stage liver cirrhosis"? Being asymptomatic is a very good thing. I know it's easy to say not to worry but this will work out. Folks here will do all they can to help. I just finished my fourth course of treatment and hoping to find SVR this time around. It sounds as though you have lot's of questions. People here will do all they can to help answer them. Take care

Tig · Admin

Hi KDH,

Welcome to the forum. I'm glad you're with us. First of all, don't assume that the end of the road is near. There are many, many options available. So don't give up on living!

The fact that you have essentially been healthy and asymptomatic is in your favor. Without knowing more about your history, I'm unable to give you an opinion.

So we don't take this thread off topic, I'm going to give you a link to our New Members section. There I want you to start your own thread or use an existing one to introduce yourself. More people will read a new member's post and will say hello. Please give us any information on your health you feel like sharing. Info such as your (blood work) i.e., viral load, liver function tests and what kind of tests were done to determine your cirrhosis are important for us to provide knowledgeable opinions.

There are some payment assistance programs available and I'll help you with that information. So click the link at the bottom and tell us a little about yourself. We're here to help and we have a lot of caring, supportive friends here. You're not alone!

http://hepcfriends.activeboard.com/f389516/new-members-area/

kdh · Member

Hi everyone, I just became a member today, so please bare with me. I was diagnosed 2 days ago with end stage cirrhosis of my liver. I haven't ever had any symptoms and actually feel pretty good. I was shocked, but MORE so when the cold impersonal doctor told me I needed to take Harvoni for 3 months to get rid of the virus. he also said it would cost $80,000! I'm 66, so my blue shield was pushed to my second insurance, and the first had to be medicare, or at least I think that is what was forced on me at 65. there are so many med-somethings :)
Now I'm thinking, there is no way at all that I could afford any out of pocket on that amount of money. Now I'm scared to death because I don't know anything. How long do I have?, what should I expect at the end?, I don't want to be any kind of a burden to my family, so at this point, my husband is the only one that knows, but I will not be telling my family. And without knowing much about it, it would be unfair to say anything. I've looked through quite a few sites, but none are really answering my questions.
Thanks for any help you can give me.

2oldman · Member

I'm only on my 2nd day. About a half-hour after taking the pill, I feel kinda dazed and confused, and a bit sleepy. Feeling seems to go away a couple hours later.

WarriorWolf · Veteran Member

I vowed that I wouldn't read about side effects during or post Tx. I am new on the Harvoni Tx as well. My Tx is prescribed for 8 weeks. I take my pill in the morning at 8:45 am. It's an odd time but it took me awhile that first morning to work up the courage to start the Tx.

So my day begins with the pill in the morning. I passed through the initial adjustment. I had joint pain, anxiety. I don't have either of those today. I feel drugged after I take my pill. I feel pretty good all day. When the evening comes around I feel cold and then I have a headache. I wake up through the night because of strange dreams. I usually fall back to sleep fast. I wake up feeling fine. I hope I don't have a lot of post Tx side effects. I plan to run a triathlon in August. I am feeling like I'm missing out on a lot of training right now. If all goes well I am going to resume training again on this coming Monday. I am going to use the weekend to work up to it. I have been trying to use my mind to tell my body to ignore the idea of any side effect and I imagine myself with protection while I visualize the disease leaving my body and the healing I imagine coming from another source besides the Harvoni. It might sound crazy, but I believe in my mind and my body. I was able to decrease my VL to 45K just a little over a year ago doing the same things I am doing now, except now I'm on Harvoni. I am no expert and I certainly did not research everything before I started Harvoni. I like to stay completely focused on healing. The idea of the side effects did scare the hell out of me. I just gave it too much power. I am going to prepare now for my post healing now. I have wonderful friends to help me research for that.

-- Edited by WarriorWolf on Friday 24th of April 2015 01:54:43 PM

Tig · Admin

Hey Hill,

HOORAY!! I know you weren't so sure the first week, but it's a relief to hear that things have calmed down. Now on to victory!

hill418 · Member

Hi. Been 16 days on Harvoni and last night I had NO side effects. Felt great. Hooray! Bloods in 2 weeks. Feeling hopeful. Oh, and it's Friday.

CanadaKid · Member

Hi Tig,

Thank you...

I'll update everyone as the weeks progress. The first official half life is 10 days.

Tig · Admin

Hi CK,

I did two courses of Interferon treatment. The last was the Victrelis triple and EOT was Dec. 2013. My recovery is ongoing but improving. I believe I have multiple post treatment problems from those treatments. Namely dental degradation, joint pain, tinnitus and now I've been informed of a possible retinal problem. It's always something... But hey, my liver is happy and healthier anyway!

I have to believe that the reason Big Pharm didn't release more data on post treatment issues was because they didn't have the long term data. Why? Because the demand for release of an effective all oral, lower side effect protocol held prescedence over continued study, imo... Then there is the monetary factor. We have all witnessed what seems to be the selfish greed they all share. R&D recovery is one thing, two yachts in every harbor is something else...

Thanks, I appreciate your input as well. Hang in there, we're all working together to find improvements. SVR is the first of many forward steps. I hope that the side effects from Harvoni prove to be short lived for all of you. It doesn't matter the length of time these side effects plague you, it's that they plague you at all. You are all Harvoni pioneers. I hope what you experience today and tomorrow will help those next month and next year.

CanadaKid · Member

Hi Tig56

I also completed 3 full courses of interferon, (1999 - 2004), which yes almost destroyed my body and my life, as it sounds like you understand. If I remember correctly it took me almost 5 years to fully regain my strength. I understand the pharmacokinetics of drug CMax and TMax, and have calculated the approximate extended half-life and washout period. What I don't understand is how Gilead can get away with not disclosing all the details surrounding post treatment, it also seems like they underplayed the side effects. The fatigue, fog head and overall weakness I am currently experiencing is much worse then when I was chronically infected with HCV.

Are you saying it's been one year and you are still NOT back to normal? Are you referring to the old interferon days or Harvoni?

This is going to be very interesting as data continues to build globally!

I truly respect and value the work Pharmaicest completed in DAA before selling to Gilead, but I think there needs to be more accountability when it comes to reporting pre & post side-effects

Again thank you for the valuable feedback.

Tig · Admin

Hi CanadaKid,

Welcome from me too! As an old Interferon triple survivor, I wanted to mention that all of these drugs can take an extended period of time to clear. But what happens as a result of the drugs is another story. As Tess mentioned, some of us don't know whether it's just age or something else, but it's definitely "something"!

After I ended treatment, it took well over a year to even begin to feel better physically. I had severe joint and muscular discomfort that just recently improved. However, it seems now that I'm enjoying life much better. I still have some real issues with tinnitus and insomnia that I never had before, but I like to say I'm wide awake healthy now! I hope and believe that you will see improvement to your post treatment complaints, but like everything with this disease, it's a slow process.

One last thing. You mentioned that the "cure" (SVR) takes 6 months to determine. The new standard for that determination is 3 months/12 weeks. Your wait time to hear the good news was cut in half soon after the new all oral protocols were released! Good luck...

----------------

Hill,

I hope your uncomfortable nights pass soon. Many of your Harvoni Warrior friends here experienced the identical problems. So hold on, I believe smoother seas are ahead.

Nights are often the worse because you don't have the hussle bussle of daytime events going on that keep you distracted. At night you have the opportunity to lay there hearing every cell in your body yelling loudly "What the H*LL are you doing to me?"! You have found my saving grace too, the TV. Hang in there, better days are coming....

CanadaKid · Member

Hi Tess, I was referring to your physical body as I know SVR testing is 6 months post treatment to confirm cure, however if you were PCR negative at 60 and 90days it does increase your odds to well over 97%

Again thank you for the valuable feedback, so 2 months is a real time line.

Tess · Senior Member

CanadaKid, do you mean 100% SVR or 100% physically?

I'm pretty confident (hopeful) for a 100% SVR (cure) considering the post tx results so far. I think it will take more time for my body to be 100% back to where it should be post-tx - - and I think it's coming. Every day seems a bit better.

- Tess

CanadaKid · Member

Hi Tess,

Thank you for the honest feedback. I have spoken with a few other post Harvoni suffers that have basically confirmed your timeline. Unfortunately one gentlemen was treated for 24 weeks and is still struggling 1.5 months later. However it's good to know there is light at the end of the tunnel.

Tess...Do you think you are 100% yet?

Tess · Senior Member

Hi. I'm at 8 weeks post treatment with Harvoni.

Hill, I had some shaking which I didn't attribute to the tx, but now that you mention it maybe it was. In any case, I don't have it now, and haven't had it in several weeks.

Headaches during treatment were fairly strong, and usually in the AM (I took the pill at 8 pm). The headaches were localized to the top of the neck/base of the skull, and have definitely subsided. I still have neck pain, but that might just be me. I no longer wake up feeling hung-over (like a heavy, aching head) which was common during treatment. Some days I had to drag myself out of bed to get to work and that hasn't happened lately.

Some of us on- or post- treatment are older, and it's tough to tell which aches and pains are related to treatment, HCV, or are just age related. I can say that my memory has improved a lot since starting treatment and it seems to keep improving. I think the HCV affected my mental capacity even when I was younger, and the improvement is soooo nice! I still have some fatigue and need my sleep, which again could be age related (I'm 60). But if I get 6 or 7 hours I can function fine.

CanadaKid, it might take some time to get over the effects of these powerful drugs - - but please talk to your doctor if you're concerned about any problems. We can't be sure if something is just a side effect or if it's an unrelated issue.

CanadaKid · Member

Hi Everyone,

I am looking for some post treatment feedback from people who finished at least 12 weeks of Harvoni treatment.

I started Harvoni Dec 22/14 opening viral load was 6.6 million copies per ml.

30 day PCR 27/copies/ml

60 day PCR NGI SuperQuant NEGATIVE

90 day NGI UltraQual (accurate to 4/copies/ml) NEGATIVE...Just to make sure we conducted 10 back to back samples, which increased the sensitivity 200 fold...All 10 test were NEGATIVE.

We treated for one more month as extra insurance

The problem is I was hit with all Gilead's listed side effects at one point or another .I had excellent health pre-treatment, worked out daily and had a great quality of life. Now 3 days post treatment I feel brutal...Can anyone tell me how long it will take to feel great again?

hill418 · Member

So, just wondering what people are or have experienced.

I had headache and flu like symptoms for a week. The 8th day, today, I feel better, but my stomach hurts and is bloated and my hand was shaking a bit.

This is not a complaint, just wondering what others have experienced. I am fine enough to work, which is what matter most to me. Days are better than nights, so I will have fun this weekend during the day, in the beautiful spring weather and relax at night. Luckily TV has been awesome - LOL.

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