New to Harvoni - Side effects setting in hard

[fitandsick]

HI all... I felt compelled to post since I enjoyed reading other "on treatment" threads. I was diagnosed with Hep C in January of this year, after 9 months of fighting insurance companies and utilizing the office of patient protection I finally won the battle to gain access to treatment. I was diagnosed with Genotype 1A, Stage 0 (fibrosure), normal level enzyme tests, normal abdominal ultrasound. I believe I contracted the virus from my mother at birth since I live a very low risk lifestyle.

Anyways... I was prescribed 12 weeks of Harvoni. I received my first delivery of Harvoni 4 days ago and began taking it immediately. Today is Day 4. I've been taking the pill in the morning since my doctor told me it can cause insomnia. This has been difficult. I seem to immediately feel fatigued and get a headache within an hour. After that subsides I'm left extremely tired, sluggish, difficulty focusing. I often feel "jittery" or wired like i had several cups of coffee, but simultaneously feel extremely drained and exhausted. Other than that, I've been constipated for the past few days which is rare for me as I never have GI issues.

My lifestyle is very active, I run 25-40 miles per week, mountain bike, hike mountains on weekends. I also have a 2 year old boy I need to keep up with. For work, I need to stay sharp as I work in Mechanical Engineering.

Pretty much every aspect of my life has now become a bit more difficult. I'm hoping these symptoms subside.

I feel guilty complaining given how hard I fought for this drug and how many people out there can't get it.

Does it get better or worse over time? I'm hoping I can acclimatize to this!

[gnatcatcher]

Hi, fitandsick --
   Constipation is a surprising side effect for me, too (according to Gilead's info, diarrhea is more common). I do my regular exercise routines, eat my usual high-fiber diet, and drink several C more fluids/day than I did before Harvoni, yet the peristalsis gets stalled.
  I also feel Harvoni's "wired" effect, although compared to when I've been on Prednisone, it is mild. Having taken 47 pills already, I've made headway learning how to integrate the different energy levels into my daily life.
   Others have experienced the fatigue you describe. I was so fatigued before starting Harvoni that I'm actually less fatigued on it.
   Do you fall asleep easily at night? If insomnia isn't a problem for you, you may be better off taking the Harvoni later in the day. Your doctor might suggest a gradual shifting of the time you take the pill.
   Quite a few forum members with headaches found that drinking plenty of fluid helped a lot.
   Will the side effects subside? For some people they do; others slog through. You are wise to do the treatment early on, so that you don't have to experience the many debilitating effects that come with a progressively sicker liver.

[Sweetie1]

Hi, I thought the Harvoni caused a little constipation too. But it improved with time, extra cereal at night always helped. I always drink a lot of spring water. I took my Harvoni around noon or 1pm. I did find that I would get a headache and fatigue after. One anacin helped the headache and I just rested a little extra. I used to sleep 12 hours a night. Now that I am six months post treatment of 12 weeks Harvoni, I wake up at 5 or 6am and have a great deal more energy. Hang in there, it gets better. I am undetected at 6 months post treatment, CURED!   Karen

[gnatcatcher]

Sweetie1, thanks for a very helpful, encouraging post. FANTASTIC news! I hope you'll also post your SVR24 to the "Harvoni 24 week EOT results check in" thread (http://forums.hepmag.com/index.php?topic=3205.0).

[Philadelphia]

Fitandsick, a few people have been moving their meds around to suit them, some taking it at night so they sleep through the sx. Others have different sx, it's a matter of getting an accurate bead on them and working with the sx, not against them.

Something I know I am guilty of is over-amplifying sx. Is that a headache? Am I tired? Am I itchy? Often we can expect things and treatment sx become a self-fulfilling prophecy. Don't be like me.

Finally, I found the beginning the worst. It's like there's a war being waged inside your body and you are just the battleground. Once the pills start to win the war, things get better. Least ways they did for me.

Drink plenty of water, rest when you need to, don't beat yourself up if you feel crappy and buckle up for the ride. You'll look back on this and it will have been worth it.

[Joleee]

Hello, this is my first post. Glad to find this forum but sad to see results unlike what our doctor and pharmacist have shared....my husband took his first dose of Harvoni last night. Nightmares of fighting and some other interesting dreams. Woke up tired. Here we go on day 1 of Harvoni. Interferon & Riboviron were an absolute real life nightmare 5 years ago.

[gnatcatcher]

Joleee, welcome to you and your husband. Sorry your husband has had a more difficult beginning of treatment than anticipated.

Your doctor and pharmacist have probably witnessed most patients having an easy time on Harvoni. I have read all of the 2,529 replies on the "Harvoni Side effects" thread and would summarize them this way: the majority of people taking Harvoni have few side effects, and the ones they do have tend to be mild. Certainly the overall experience on average is much easier than being on Interferon and Ribavirin. An occasional person does, however, have a very hard time on Harvoni, and some others have a hard time.

Previous negative medical experiences can result in Post Traumatic Stress (PTS). For example, I can get severe White Coat Hypertension when my blood pressure is taken in a medical setting because allopathic medicine has harmed me three times (the first being Hep C via transfusions). Perhaps your husband is having a bit of PTS over the Interferon-Ribavirin experience.

But doctors have also saved my life a few times. Most Harvoni side effects can be lessened; there are tips scattered throughout the forum threads. If your husband is unlucky enough to have intolerable side effects and the doctor is unable to offset them, that is one thing. Otherwise, keep your eyes on the prize: a cure -- which Harvoni is highly likely to provide.

Every good wish,

Gnatty

[Joleee]

Hi Gnatty!
Thank you so much for your message of hope. He did the nasty poison interferon in 2010. He received a new liver September 15th 2011 because he had developed cancer only in the liver. Now we want a cure to keep this wonderful gift!

[Teebear]

Hi I am new to the treatment 5 days on Harvoni have some bad sx headache fatigue shakiness and vomiting.... I was diagnosed January 2014  with G1 stage 2 ... very anxious about this hoping no praying that this cures it for me I need to have my life back...