19 YO, HCV for less than a year; very nervous about Harvoni

[robertk1997]

Hello,
Today would mark the second day that I've been on this new drug Harvoni and so far the side effects aren't terrible; but from what I've read a lot of the reports seem unnerving. Now I'm to the point where I don't know if I'm better off living with Hepatitis C or just getting this over with now and seeing what happens.

So far the side effects I've had are slight nausea, stomach cramps in the abdomen area (had this before treatment), slight cold sweats at times, extreme joint pains in the morning (had this beforehand). I woke up this morning and my hands were completely numbed, I've had it before many times recently but this time it was more than usual, maybe I'm overly aware of it. Also noticed a lot of drowsiness, was nodding out while driving.... almost like an opiate high I hate to say.

I would like to continue my treatment it's only 8 weeks and considering the state of my body, I think I can handle it. I'm just in extreme fear that it will cause more issues than it will solve, I don't want to be worse off ya know? I'm only 19. Anyways, I've had this for about 8 months, my liver is a little inflamed from drug usage and hepatitis/epstein barr (tough lesson to learn for poking a needle for a month or so) so I'm really hoping this 8 months really clears this virus out quickly; I'll also serve as a good guinea pig because I don't know of a whole lot of young people on this medication, especially teenagers so I'll be sure to report as I go along.

THINGS WORTH NOTING
-Breathing has improved since Harvoni, I was having breathing episodes before treatment and it's actually improved in the past few days... strange
-Stool is no longer greyish in color, it's becoming more normal
-Midleft abdomen right at the bottom of my ribcage hurts a lot sometimes, but its only in certain positions so I'm unsure if its a slight injury from working, a muscle, or just irritation from the virus.
-I sweat a lot more, I feel a little more cold in general.

Overall it's not too bad, I'm just really nervous.

Medication list- Subutex, Klonopin, Gabapentin, Harvoni. I take the least amount possible of these because there is almost nothing known about interaction.



-Final note, before treatment, both of my big toes went numb. Like benzocaine kinda numb and it never subsided. It started with only my right foot big toe, then went to my left leg so now its both. When I wake in the morning and stand up I feel tingling in both feet so I'm not sure what is wrong.

[gnatcatcher]

Robert, welcome! Your post indicates that you have really studied up on HCV and you have a keen sense of bodily awareness. You were having some major problems before you swallowed the first pill, so not being treated wasn't going to improve the situation.

Harvoni works very quickly; some people had their viral load tested after only 2 weeks of Harvoni (the testing schedule varies widely among doctors), and the HCV was already undetected. I am one of the people on these forums who experienced a huge infusion of energy (feeling "wired") beginning within 90 minutes of swallowing the first pill. You seem to be one of those who gets drowsiness instead.

You're doing what I did: logging every oddity, in case it turns out to be a side effect. Any that are particularly concerning: run them by your liver specialist. I assume that doctor has already advised you RE: the Subutex, Klonopin, and Gabapentin.

Getting treated will almost certainly result in getting cured. Harvoni seems to need extra hydration (which is even more important given your sweating) -- drinking 1 ounce of liquid for every 2 pounds of body weight worked for me and a lot of people here; others just used the rule of thumb that as long as their urine was clear or pale yellow, they were sufficiently hydrated.

Most of us felt trepidation as we began treatment, then that lessened as we found that the side effects weren't a big deal (and especially as we got great test results). I had lots of joint pain before treatment, and some of the pains seemed more intense during treatment ('could've been due to the generally wired feeling, I don't know), but I made sure to get enough exercise anyway.

My treatment ended more than a year ago. After an adjustment period (my PCP shares the view of many here that the immune system has to readjust after its major foe no longer exists), my  aches and pains definitely became milder and rarer. You are many decades younger, so I hope you'll get an even better result.

Best o' luck to you.

Gnatty

[Tlk60]

Gnatty.  Thanks so much for the one oz per 2 lbs of body weight formula....awesome...been sort of concerned about how much is too much, etc

[S.Belle]

Hang in there Robert !  My side effects were minimal. Slight ringing in my ears and the drowsiness. I switched almost immediately to taking my Harvoni at about 6PM every night. I work during the day and I began sleeping better as well. You will be fine in a few weeks as your body adjusts to the Harvoni. Good luck !

[Lynn K]

I would think a health issue you had before treatment would not be related to Harvoni. Also while a small percentage of people have had what they feel are side effects from treatment the majority had little to no side effects from Harvoni beyond a few mild headache that seemed to be helped by staying properly hydrated.

For example I am 58 and had treated 3 times previously with interferon based treatments and have had liver cirrhosis due to hep c for now 9 years. I had no noticible side effects from Harvoni  beyond a few mild headaches.

I am now cured you will be too don't borrow trouble from a tomorrow that likely will never come.

Good luck on treatment

[Tlk60]

Excellent idea to take the medication at night!!!!  I too work during the day but had some concern about insomnia if I took the Harvoni at night....

I just was contacted by the specialty pharmacy this morning that everything was a go...signed all the online forms and am just waiting for a call back to schedule delivery...sooooo I am thinking I will begin taking mine at night as well....

Anyone else tried this...or have thoughts regarding evening or morning dosing??

[dragonslayer]

Excellent idea to take the medication at night!!!!  I too work during the day but had some concern about insomnia if I took the Harvoni at night....

I just was contacted by the specialty pharmacy this morning that everything was a go...signed all the online forms and am just waiting for a call back to schedule delivery...sooooo I am thinking I will begin taking mine at night as well....

Anyone else tried this...or have thoughts regarding evening or morning dosing??

I had an easy time with treatment... A couple of headaches is about the only adverse effect I experienced.   I took mine in the morning, as I didnt want any possible effects to interfere with my sleep.   Worked well for me.

[gnatcatcher]

Tlk, since there's no way to know ahead-of-time whether you'll get the Harvoni High or the drowsiness, just pick what seems like the best time for other reasons. If you need to, you can adjust the time, which many people on these forums have done.

I happened to choose 6 a.m. because it was the only time I could do consistently. Because I got the Harvoni High, 6 a.m. turned out to be an excellent choice for me.

Gnatty

[Tlk60]

Thanks guys!  I think I will stick to my original thought and take it at 6 a.m.  I am used to taking medication at that time of the day.  I have a hard time sleeping to begin with so "IF" I get the Harvoni High...I certainly don't want to be awake all night!!!

Specialty Pharmacy called me back and I have scheduled my delivery date on Wednesday so it is looking like Thursday morning will be my first dose!! I am so anxious to get started as it has been a long, tough battle to get approval. Whew.... at this point I am almost afraid to be happy because I am waiting for the other shoe to drop so to speak.  So I will wait to celebrate until I have the medication in my hand!!

[robertk1997]

Question, do most people on Harvoni start blood pressure medications? I guess it's a good thing I'm prescribed things that slow my body down, I used to be on Adderall and I discontinued it. I keep reading about high blood pressure with Harvoni and it worries me.

[gnatcatcher]

Robert, FWIW, I take my blood pressure at home usually three times per day, so I looked back at my records. The readings before, during, and after Harvoni treatment were in the same range. A few months before I started treatment, I read on HEP forums that some people experienced higher blood pressure, and it concerned me briefly, but by the time I started treatment, I had forgotten about the possibility. In my experience, worry about anything raises my blood pressure, so I'm glad I'd forgotten that some people mentioned BP.

Keep in mind that forums disproportionately hear about problems. People generally don't post about non-problems. The prescribing information that came with your pills charts the five most common adverse reactions: not only isn't high BP among them, but even the top two side effects affected fewer than 20% of clinical trial participants, and the other three side effects affected fewer than 10%.

Gnatty

[Lynn K]

Are you asking if you would need to start taking BP medication because of Harvoni? You shouldn't need to start BP medicine if you are not taking it currently.

If you are currently  taking BP meds you should always check with your doctor before stopping or changing your dose of any prescription medication.

My blood pressure is a little high but didn't change while I was taking Harvoni. I am not on BP medicine.

As gnatty said blood pressure is not a listed side effect