Harvoni first 5 days.

[Username98098]

Great website and community!

Finally got the ball rolling and my doctor (Infectious disease specialist) got my Harvoni approved in record time.

I'm not sure if its a placebo effect or what but just 2 days in I was already starting to feel like I had more energy and less digestive issues.

5 days in same thing. Only 1 headache. Been drinking plenty of water. A little insomnia at night (doctor said a little bit of melatonin would be ok. less than 1mg. I don't even take it every night) . Stopped drinking coffee a month before I started the approval process (don't want anything that might interfere). I honestly have more energy than I have in the last 2 years. Eating food doesn't seem to drag me down. I used to eat a meal and get so gassy I'd have to lay down. Not now. Minimal discomfort. It seems very promising. I have my first lab test since taking it next week and I'm curious what progress I've made in just 2 weeks.

So glad there is a drug out that has minimal side effects and great success rates. Great forum here also. I'll be checking in regularly before and after treatment. Hoping for the best!

[gnatcatcher]

Welcome, Username98098!

While some people experience fatigue on Harvoni, there are so many of us who enjoyed noticeable extra energy that we nicknamed the effect the "Harvoni High." A few hours after I swallowed pill #1, I was visiting my elderly mother and she commented on how energetic I seemed, so I doubt it's a placebo effect. Looking forward to your lab report.

Gnatty

[Username98098]

I guess it does feel a bit like a "High" after being so fatigued for more than a year. I was expecting the complete opposite. In the doctors office the day he gave me the bottle i asked about side effects. He said you will barely know you're taking it. If I had known it wasn't going to wipe me out I would have scheduled a morning dosage. Sadly I take it at 6pm every night. That might be the cause of my insomnia. Its like drinking coffee to late in the evening.

You mentioned the first few hours after pill #1. I took my first pill and had to go to work very early the next day so I went to bed. There was a lot of activity in my gut and a mild tickling sensation. Slept off and on and felt great the next day. Modern science really out did themselves with this drug. Compared to what we had 10+ years ago.

[Mugwump]

It very well could be that sudden increases in good renal functions stimulates adrenal production. So if you drink more water to help facilitate the discharge of toxic by products created by the exchange of dead liver cells and dead virus particles it might very well give the system a boost in unanticipated ways.
It would be very interesting to study this aspect of what appears to be a quite real phenomena during DAA treatments.

I did not experience the Harvoni high right away but it started to come on about 4 weeks into my 24 of treatment. Because I am F4 and had long term brain fog from SHE or what is called (subclinical hepatic encephalopathy)
the added benefit was also a very sudden and substantial increase in mental clarity.

My best advice is if you are F4 do not overdo the sudden superman that you feel you have become
But do increase activity and exercise and as treatment takes effect do some of the things that you have put on the back burner because of HCV. For me it was wading challenging rivers and fly fishing for winter steelhead for the first time in a few years. For others it was renovating or what I call the Martha Stewart effect. LOL

Either way learn to live again is the best advice I can give.

Cheers!!
Eric

[gnatcatcher]

Ditto Eric's advice. I used some of that Harvoni High to exercise more.

You could gradually change your dose time, as others here have done (although how much that'll help with sleep is debatable -- I took mine at 6 a.m. and was still revved up at bedtime). The down side is carrying such an expensive pill to work with you. Thankfully, the extra energy makes up for the insomnia as far as functioning at work is concerned.

[Username98098]

Thank you for the advice.

My doctor game me a lot of information after my first lab tests. I don't think I have cirrhosis or fibrosis (do I need a biopsy to be sure?) but all I've done so far to get Harvoni prescribed was blood tests and an Ultrasound (Ultrasound looked good. Nothing abnormal). He just went off of those lab results. I'll find out more information about my current condition during my next visit (all the numbers). Mainly I was focused on just getting the meds started.

[Lynn K]

Other than a liver biopsy there is also a blood test called a Fibrosure and another test called a Fibroscan that uses a devise similar to an ultrasound. It Bridges's a sort of thump that can provide information about liver stiffness.

The liver biopsy is called the gold standard when determining extent of liver damage as the Fibroscan and Fibrosure are less accurate in mid range of damage but they also are less invasive than a needle biopsy. Hopefully your doctor has access to a Fibroscan or can have a Fibrosure blood test done if he feels it is warranted. I know my first test that went south when I developed cirrhosis was my platelet count. Even now that I am cured my platelets are the only remaining test result that remains out of range but it has improve about 20% since I was cured.
Anyway if your ultrasound looks good and your blood testing looks good probably your doctor feels you don't have much liver damage. Still if it was me I would kind of like to know especially if you don't have to have a biopsy to find out.

Good luck on treatment

ps I also had the "Harvoni high" and maybe just a couple of mild headaches at least before we added ribavirin but that is another story

[Username98098]

Lynn.

My first blood test was very extensive. He seems to know from the results that there was damage but not to the extent some of you are experiencing. I'm just going to get thru all this and later this year I'll look into other tests if needed.

You mentioned ribavirin. My relative that urged me to get checked was on a combination of Viekira Pak and Ribavirin and said it wasn't bad except for the anemia and weakness. She is undetected as of last year from her drug therapy. She and her husband were thrilled to hear i was prescribed Harvoni instead. Seems I lucked out and that's all my doctor prescribes for his patients.

[Lynn K]

I was a multiple treatment failure. I was a prior null responder to three treatments with the old interferon based treatments. When the new medicines were first released I treated with Sovaldi and Olysio for 12 weeks. I was not detected at end of treatment but when tested at 12 weeks after I had completed treatment I was found to have relapsed.

So when Harvoni was approved about a month after I had relapsed my doctor prescribed Harvoni for 24 week. I saw a discussion on line from some experts in treating hep c  discussing numerous topics including my situation of a multiple treatment failure with cirrhosis who had also failed one of the new treatments. They discussed whether they would add ribavirin to the treatment for a patient like me. They all agreed they would probably add ribavirin.

So I discussed this with my doctor and she agreed it might be a good idea. I had already been on treatment for 9 weeks by then so I was taking ribavirin for 15 weeks of my 24 weeks of Harvoni. I had taken ribavirin in the past and had become very anemic so I was hesitant to take it again but I could not afford to fail yet another treatment so I toughed it out for 15 weeks. We did have to dose reduce after about 4 weeks from 1200mg to 1000mg but after that my anemia stabilized at a level acceptable to my doctor.

So anyway that was why I took ribavirin for 15 weeks while I was taking Harvoni for 24. This May 4th I will be 2 years post treatment and very thankful to finally be cured of hep c after being infected for probably 37 years.

[Username98098]

Glad to hear you finally found a treatment that worked.

My relative that got cleared last year probably had it since the late 60's due to a blood transfusion or iv drug use. She's not sure. She really didn't start to have issues till a year or 2 ago. She's very happy to be feeling better.

[Lynn K]

Glad to hear your relative is feeling better these days and especially congrats on her cure. I never really felt bad except for being a little tired but who knows if I just was working too hard and not getting enough sleep or if it was a symptom ya know?

I found out when I donated blood in 1990 but same here I tried IV drugs a couple of times when I was in the Army so that is why I figure I was infected in 1978. I also got a tattoo at a bar upstairs in a guys apartment unlicensed parlor at the same time so one or the other.

Anyway best to you and your family