headaches, tinitus, fatigue getting worse

[moto]

Been on harvoni for 12 weeks, undetected at 8 weeks, still have 12 weeks to go. Side effects suddenly got worse. Anyone out there have similar experience? Also have SLE so I may be having flare up.  Great to be rid of hep c but sick and tired of being sick and tired.

[KimInTheForest]

Hi Moto. Sorry to hear your sides have suddenly gotten worse.

I am only on Day 10 of Harvoni+Ribavirin, so I don't have your track record. Virtually no sides so far in my case. But what little I have experienced disappear if I start downing water - especially headache. I am drinking at least 8 cups (64 oz) of water daily, and often more, sometimes double.

What is SLE?

Good luck to you, Moto. Great that you have been undetected since Week 8! The end result will be worth it

kim

[moto]

Hi Kim, SLE is systemic lupus. In my case may be a spin off from hep c, hoping that if I'm clear of hep c long term that lupus may be less noticeable.
Apologies to site organizer, looks like I should have posted this in side effects section, I would move it if I knew how.

[svalles1130]

On 12 week treatment and today marks the beginning of the halfway point. viral load was 10430059 when treatment started, blood test after 4th week shows <15.  Yes, my side effects seem to be getting worse.  Extreme fatique, anxiety, sleeplessness, trouble breathing, low heart rate. If this medication does not cure me, it sure seems like it is on the road to killing me.  I to am tired of being tired.  Good luck to all of you and thank you for sharing.

[WmAllen]

I just finished Week 7 of Harvoni. Headaches stopped by 3rd week and feeling out of breath has mostly stopped as well, but still get fatigued. Just in last week I started getting the 'whistling in my ears' (tinitus). It has only happened twice and is more annoying than anything else.

 Since I did the whole Peg + Ribavirin 10 years ago, this is nothing at all. I just hope it stays that way for my next 5 Weeks.

Wm

[moto]

Really strange thing happened yesterday, went to work which involves a 75 mile drive each way. Was finishing up a long day by going to Costco to stock up on groceries etc before heading back home. When I walked in I was disoriented, I actually thought they had remodeled the store. The meat counter that's at the back of the store looked like it had been moved to the middle of the store. I didn't really get my bearings back until I'd walked about halfway to the counter. It was basically a mild hallucination that lasted 2-3 minutes.
I did my shopping and drove 75 miles back home without incident. Not sure what to make of it but thought I'd throw it there and see if anyone else has had a similar experience.

[MEG]

Hi moto, I'm finished with the 12 weeks of Harvoni--4 week EOT VL on Monday.

There were a few times that I also felt disoriented, my sensory perception was off--and like you it just lasted a couple of minutes. We have hcv throughout our body and I suppose that as our brain starts recovering, it may have a couple of "what? what?! moments...;-)

I would talk to your doctor if these happen with regularity, though. Best and wishing you SVR>

[moto]

Thanks Meg, guess I shouldn't be too surprised by some weird side effects with a drug as powerful as this. Just strange that I felt so good at 8 weeks then this tail spin into the negative. But there's light at the end of the tunnel and I'll get there.

[MEG]

You're welcome, moto.

What's fascinating to me is that we all have experienced Harvoni in unique ways. Whether it's the type and degree of side-effects and or when they come up. Big spectrum.

My rule is that if it lasts longer than it feels comfortable to give a quick email to my doctor...just to be sure that I'm not missing something.
Best!

[CHepCFree]

I finished 12 weeks of Harvoni almost 12 weeks ago.   I have what appears to be perm tinnitus, dizziness/vertigo, pounding heart (not fast) and lung issues.  I get my VL test next week but was UND at 6 weeks.   Your sides have been reported to FDA by others.  I have a report from them that I paid for and many of what people are experiencing are being experienced by others.   So much for easy.......   I didn't mind the sides while on the meds but having them after is not what I counted on. 

[moto]

Thanks CHepCFree, sorry your having continued side effects even after EOT, would have expected improvement post Harvoni.
I had tinnitus prior to starting treatment and saw an ENT specialist who wanted me to get an MRI and said he suspected mine was caused by having lupus and surgery to cut a small muscle in the inner ear might be the solution.
My lupus Dr said the lupus may have been started by the HepC but at this point the lupus may remain even if HepC is eliminated.
I decided to start Harvoni and see if the tinnitus improved. It did after about 4 weeks, I was feeling much better and thought this may be behind me. At about 8 weeks tinnitus was back with a vengeance and has been relentless for a month or more but only in one ear. I wake up with it and go to sleep with it, it never lets up.
I'm  about halfway through a 24 week treatment and wondering what's next.
Seems we're all guinea pigs and the trials are ongoing.

[debham]

I'm about to finish my 8th week. I'm on a diuretic for bp. Since I started on Harvoni my bp has been running low like 106/60 and close to normal. During the night last night I awoke to the sound of my heart pounding in my ears and shortness of breath. I took my b/p it was high 155/85. I sat quiet for about an hour and it started to come down a little and the pounding went away. I stayed awake the rest the night. Of course I was tired today my breathing is almost normal and my b/p is 127/82 it's getting closer to what is normal for me. I have 4 more weeks on this drug I sure hope the weeks to come aren't like last night.

[KC]

I am on week 9 and have done very well with hardly any side affects until now. I am very tired, sad and my bones and muscles ache pretty bad. I thought this was going to be a breeze but yikes...not so sure now. I hope you start to feel better soon. I can tell you I felt like a million bucks in the beginning but not so much now. Let's just pray it gets better & GONE! GOD BLESS.

[BubbaT]

I was also having a time with sore achy legs and joints about 4 weeks but I started juicing lemons in water and surprise the aches went away, the lemon water did wonders for me, u may try it to see if it helps, I took 2 lemons juiced them in water and repeated 3 times a day, I used stevia, and quit any artificial sweetners,

You will be surprised how a small thing can help...

Try it an let em know if it helps...

I take pill 84 today...and have done well the last 4 weeks, no real issues...

Are any of you taking other meds along with the Harvoni?
I don't assume they know all the contraindications with other meds, the drugs are to new for them to know!  I purposed not to take anything while on Harvoni for that reason....