Harvoni + Ribavirin - Anyone else doing this combo?

[Robin1433]

I'm starting Tuesday and wondering about side-effects, helpful tips, and any experiences others have had with this combination.  I did not respond to Interferon+Riba many years ago.

[Junkyard]

Started Harvoni and riba 6 weeks ago. I had the the same response to interf and ribs about 4 years ago. Went through telaprivir interface and Riba . Completed treatment 6 months and relapsed.. I had rashes flu feeling etc on that one.
This time I can not sleep, have some headaches and not much energy at all.
Don't know if it is the ribs or Harvoni but I try to exercise and run at least a couple of times a week each. It is down to running and walking and very little exercise.
This is not near as bad as the other 2 treatments but I am only half way through.
Some days are very good, some are not very good, but I have cleared the virus and look forward to finishing this thing and start to live again. Hopefully it will be gone for good this time.
Good luck

[Junkyard]

Drink lots of water, I take a Tylenol 500mg most days once to help with the headaches etc. try to keep my mind off the process as much as possible, it is hard to forget because you have mess to take.
I take ribs in the morning harvoni at lunch and ribs at dinner seems to work ok for me.
Again, good luck

[Lynn K]

I started with just Harvoni and my doctor added riba later which by the time we got through the insurance process was at week 9.

I have 5 weeks to go now so when done it will be 24 weeks of Harvoni and 15 weeks of RIBA. I was taking 1200 mg but had to reduce dose after 3 weeks because my HGB fell to 9.3 so now I am stable at the minimum my doctor wants to see it HGB 10.0 taking 1000 mg of Riba

Good luck with treatment

[victoria48]

To Junkyard:
Tylenol is suppose to  be "BAD" for the liver.  Did you check with your doctors? Just hate for you to go through this and make things worse.
Thanks Victoria

[coloradogirl]

I am considering adding Ribavarin for the last 8 weeks if my 4 week blood work comes back detected. I expect to become anemic if I do, because it happened last time. Studies show 100% clearance rates. It's gotta be worth the pain, right?

I want to stay as active as I can. I feel that I need to keep the blood flowing in order to beat this thing. I quit smoking three years ago. I think that can improve my chances to clear. The Riba will definitely affect that.

I go to the gym almost every day, and I'm afraid anemia will stop me in my tracks. Fruthermore, I am shooting for a position as an instructor there.  If I do go on Ribs, my absence might blow my chances, but I got to think about the long term. Should I, or should I stay the one pill course?

It would be so easy to make a choice if I could just come out and say I'm on treatment for hep c.   I struggle with being honest with people, because they or people they have told have used that info against me before. The dogs eating the dogs world,  gotta keep up appearances. Sometimes it just sucks!

[Trenz]

Hi Robin.  I'm on week 6 of 24 with Harvoni + Ribavirin.  My side effects have been constant fatigue and some insomnia. I'm pretty sure the fatigue is from the riba. This is my third treatment that's included riba and I've had fatigue each time. The good news is my week 4 labs show the virus is non-detectable but the bad news is I'm anemic, same as on the previous treatments. The doc wants me to suffer with the anemia as long as I can and then we will cut back on the riba dose.
DRINK FLUIDS!!!  In the morning I can tell if I didn't get enough the day before because I feel like crap. I'm a recovering alcoholic, haven't had a drink in over 3 yrs and now I'm addicted to diet tonic water.   
coloradogirl.  I feel ya. I know what your talking about with peoples reaction when you tell them you have hep c.  But it could be worse.  You should have seen the reactions I got when I told them I have hep c AND I'm an alcoholic. But now I feel relieved and don't have to hide it. I'm 62 and retired so what other people think doesn't bother me as much as it used too.
Good luck to us all.   

[Lynn K]

Victoria

Tylenol is safe as long as less than 2000 mg day and in fact is the only recommended OTC pain reliever for people with cirrhosis as aleve etc have a bleeding risk for people with cirrhosis

[victoria48]

RE: Tylenol Ok as I know high dose continuously told not good for liver ..thanks!

[Lynn K]

The problem with Tylenol is it hides in so many meds so makes it easy to take too much.

I was taking DayQuil NyQuil recently and noticed each pill (dose is 2 pills) contains 325 mg or 750 a dose taking 4 doses a day would be 3000 mg and if you had not read the label and took additional Tylenol along with the NyQuil well that's a hella lot of Tylenol!

[BubbaT]

@colorado,

I know what your talking about when you say that you can't decide what to do?

Your health is more important than any job or any persons opinion!

I had to delay my treatment for 20 yrs, thank God I was able to get thru that time because I was still healthy and young.. But my liver was slowly dying...

But as you know October 2014,  Harvoni was approved with riba and vikera pak, and other options, for treatment success..

But, it's so hard to choose ...

When you suffer in secret, people judge your motives then too!  Have you noticed?
When you need rest, you push yourself for what?  Money, approval? Is it worth it?

When I tell people  I have hepc  and am taking meds, I use this as a opportunity to witness to Gods mercy and Christ forgiveness ... If they judge me for having hepc, then I tell them your sick too, you just don't realize it.  We all have to die someday...

now that I'm older and have made it to the retirement doorway It's not the crushing decision, that maybe you have to make.

Do I have to be strong when I feel so weak?  Do I have to make a choice between getting cured and getting a promotion?

I was there, I feel for you...
God bless

[coloradogirl]

Thank you so much for your kind words, Bubba. Your perspective helps to reinforce the idea of value in my own health over the expectations of others.  Bless you and your journey through this, too!

I had my labs drawn last Friday, March 27th. I had to wait a whole week to get my 4 week lab test results.  They were due back before then, and the doctor's office didn't have them, so I had to go to the lab and inquire as to where my results were. I told them it was very important to get them back so I could decide to add the Riba or not. They called someone, and told them to fax the results to the doctor.  Then they gave me a piece of paper with info on a problem they are having.  KP contracted Quest for the lab work, but as of yet, their two information systems aren't exchanging data properly, so results are not being delivered in a timely manner. It irks me to no end, that my life is in the hands of some incompetent software engineers. Come on now!

So I called the doctor's office and told his assistant to check the fax machine. She found the report, then said she would give it to the doctor for his review, and he wasn't going to be in until Monday. Argh! I can't wait any longer people!

I asked her if she could just read the virus load report to me. She asked me if I was going to ask her any questions about it if she read the report to me. I said I knew what the report was about.

After a week of waiting, I finally got the scoop.  For the RT-PCR <15  then they did the more sensitive one. Something like less than .01. Then I asked if there was a not detected on there. And she said yes, it is not detected. It was such a relief, that I burst out crying. After the nightmare of no response and slow response with relapse, it is now undetected after 4 weeks! 

OK, so now what? I don't know. Can I even think I have it made? That an SVR is even possible? Am I doing all I can to insure that? Is this one pill a day going to be all I need? God, I hope so. I am still on the fence about the Riba  after all of that. Now, I really wish I knew what my FibroSure score was.  I talk to the doc today. I'll see what he says about all this.

[Philadelphia]

Congrats coloradogirl. I can only imagine the excitement you must be feeling. Wonderful news!

[Trenz]

coloradagirl...Congrats on the not-detected!!  Hope your Dr has some answers for you today.
I too had a lot of frustration with Quest. I decided to try Labcorp and boy am I glad I did. Like night and day.  I get an email from then, usually in two days,  click a link and it takes me to the complete lab report. It does take longer if vl test is included.  You should think about giving them a try if it's an option available to you.

Let's all keep fighting the good fight. We will all kick the Dragons a$$

[charly8]

I use Quest as well and they are painfully slow.  It takes me 13 days to get my lab work results back and I live in a major metropolitan city.

I decided to add the Riba 4 weeks into a 12 week treatment to give myself the best chance I can.  I am 1a and I think Riba may give a little boost to achieving SVR in the 1a group.  I also relapsed before and don't want to go thru this again.  I have been anemic but its not too bad.  I am 10 days away from finishing treatment and would still choose to do the Riba again.

[coloradogirl]

So what a serious pain in the a$$ it has been trying to get the lab reports! And the underlying problem is STILL not resolved! I was finally able to pick up the full lab results from the doctor's office like I requested from the assistant a full week prior. But getting to that point took a lot of effort on my part.

A full week after having my blood drawn, I had to go to the lab and request the results for the doctor. The lab called someone who faxed the results to the doctor, which should have already been done. Then I had to call the doctor's office for the results. I had to coax the assistant to give the results over the phone, otherwise I would have to wait until the doctor reviewed it on Monday after Easter. She didn't want to leave me a copy at the front desk, but to expect the matter to be addressed by the doctor and to expect something in the mail. What I got was a stupid summary from the doctor stating that it was not detected and I was not anemic. There was a paragraph at the bottom stating that I could see the full results in their patient portal. So I logged on and didn't see any of the results there anywhere.

So I called the doctor's assistant, told her what I thought of the letter,  and the lack of a full report. And again asked to pick up a copy of the report, telling her I could not see the results in the stupid patient portal. Then I had to talk to some gal there, who put in a trouble ticket to their portal vendor to fix. I keep checking, but it's not there yet!

And the KP portal has no results for me either. My lab results have always been accessible to me on the KP site, but because they are using Quest for my labs now, I can't see them there now like I'm supposed to.

The KP problem has now been escalated to the head of patient services, because a lovely woman from KP felt the problem was unacceptable.  I have yet to hear back from her, but I will be calling her to follow up on the week 8 results. All this leg work makes me feel like we are still living in the stone age!

It is all about the data and the broken code in the computer software! I have witnessed plenty of such things occurring since I am a software engineer, and I've had to deal with converging data systems. XML is supposed to make data exchange simple, but it always comes down to flaws in the code. And it's usually generated by some nonchalant programmer, who would rather not test the code thoroughly before it goes onto production. I understand not everything is predictable, but some programmers have horrible attitudes about teamwork, cooperation, and having to solve another glitch. Too bad it has to affect the healthcare systems. And because we have so many separate entities exchanging data, the development of one process to serve so many entities, I.e. doctors offices and HMOs, from primary lab sources should be daunting. Our healthcare system in the US is so late to come on board, mostly because doctors offices didn't want to make the capital expenditures, and don't understand the software they get.

Still, it is better than a mountainous paper trail. It always pissed me off that the primary care doctor didn't know my history, and came in there with a file two inches thick containing illegible doctor script. Surprised he could even cull my name from that mess.
 
Just hope they resolve the digital mess, soon. Yeah, right!

[Junkyard]

Vitoria,
I take I 500 mg tablet of Tylenol maybe once every couple of days maybe.
 I have had migraines for 25 years, I have Triptans for them as needed. The weird thing is my migraines have almost gone away the further I get through the treatment. No sleep is the norm with this stuff.
This is the third treatment I have been through, never had that much problem staying asleep. This stuff is really different in that way.
The no energy is a given when taking stuff like this. But nothing like interferon riba and telaprivir, I remember that very well. When I relapsed I was so angry because I had been sick for 6 months,as well as afraid of what may come.
 This time, it is a breeze. I even laugh a little and fun is coming back to life.
Good luck

[Robin1433]

Thanks for all your comments.  I just finished my 3rd week on Harvoni/Ribi and doing pretty well.  I'm trying hard to drink fluids which is hard for me so I'm setting my timer to an hour and making sure I down 8 oz of water during that time.  Side effects have been very manageable until I developed  a rash last week starting on my back and expanding to my chest and armpits, etc.  I'm using cortisone cream but it isn't helping much.  Has anyone else experienced the rash and if so did you find anything that helped?

The awesome news is after 2 weeks my vl went from 5 million to plan old 34!!

[sr110435]

i am a vietnam veteran and found out in 1997 i had hep c . i had done the interferon , then interferon and ribavirin twice. then 2 yrs ago i took a new treatment ( sorry i am old and don't remember LOL) . i started harvoni + ribavrin last thursday. everything was ok till today and i am very fatigued . i have had a dull headache but nothing i can't handle. all i know is so far this treatment is a GOD sent compared to the other. i have read lemon water is very good if you have an upset stomach but you need to drink plenty of water which is what i have been doing since i started, about 48 to 60 ounces a day.
can anyone tell me how long it should be before your viral goes down to zero , or does it depend on where you marker is when you start?


well hope all is good for youall and may we keep plugging along !!

[ponygirl]

Please know that I had a friend who had no reaction to the Ribavirin, but that is not my story. Prepare for the worst and hope for the best.

I have been on Harvoni and Ribavirin for almost 6 weeks. I have had 1 headache from the Harvoni in 6 weeks. The Ribavirin has (again) knocked me out. Same symptoms as when I took it 12 years ago.  I was prepared this time and was ready for the side effects. I told my supervisor that I might have side effects, printed out the side effects and gave them to him,  and have the completed (but still not turned in) FMLA paperwork at home, just in case. Its helps that I am 64yo and do not care as much what other people think (except when I am on ribavirin-LOL)

They decreased my Ribavirin from 1000mg to 600mg at week 4 because I because a sobbing puddle of jello, Could not stop the uncontrollable waves of depression and sobbing for no apparent reason (I have no history of depression and I might cry 1x per year Max). Also I was Really irritable and reactive (Riba Rage). Definitely Ribavirin side effect. Better since dose was reduced. Still want to kick the dogs.

Other symptoms:
1. anxiety that starts 2 hrs after taking my AM Harvoni and Ribavirin. Normal again in 4 hrs. (May be the Harvoni)
2. Irregular rapid heartbeats arrhythmia ( Could be either Harvoni or Ribavirin)
3. Anemia, better since decrease in Riba.
4. Wheezing and difficulty breathing during exercise
5. Dry mouth-dehydration-carry a bottle of water everywhere and increase potassium rich foods/juices (coconut water and pomegranate juice). Don't drink those Vitamin and mineral drinks, according to my doc most of them have other ingredients that we should not have while on treatment.
6. Use a vaporizer, I put an antibiotic ointment inside my nose and use nasal hydrating spray approved by my doc
7. Did I say exhausted
8. dry patches on my skin
9. Forgetfulness
10. Dry mouth. suck on sugar free candy and use biotene mouth spray
11. No herbal remedies unless approved by your doc. You can drink chamomile and peppermint tea. None of the great sleep teas in the health food section. No St John's Wort. No Emergen-C. No Airborne. I was given all of this information by the specialty pharmacist.

Remember: If you have any depression symptoms, contact you physician immediately. There is a warning about this side effect. It usually starts 2-4 weeks into the Ribavirin.

That said. My gastro says I have cleared at 4 weeks BUT the labs say <15. I am waiting for them to say Undetected before I jump for joy.

Sorry if this is long. May the odds be forever in your favor.