HepC, cirrhosis and Harvoni

[Brenda534]

Hello everyone:

I am new to forum. I have hep C since I was a child, 59 year of female. I was doing fine until last march I found out that my fibroscan was 15.3, means doctor says stage 1 cirrhosis.

I have panic attacks just thinking about taking Harvoni and side effects. I never take any medication. I should start treatment around mid of November but still debating. Does anyone know how long it takes to progress from stage 1 to stage 3 on average?

I apprecite any input, thanks. Brenda

[Mugwump]

The speed at which HCV does liver damage is generally very slow and that is why it is considered a sleeper disease. So no one can tell how long we have once we have progressed to cirrhosis.
 However, it is known that sudden stress upon the immune system can increase the speed of damage done by HCV. For instance other infections or conditions that reduce the effectiveness of ones immune system are more dangerous for those of us who have HCV.
During treatment many of us found that keeping busy and not worrying about every little bump along the way goes a long way in easing the stress on your system during treatment. Reward yourself by doing things you love to do during treatment and do not consider yourself to be sickly.

For me and many of us with cirrhosis, curing HCV was a real eye opener. We really did not know how sick HCV was making us. We were just used to feeling like hell most of the time.

Harvoni will make your renal system more active and this is because your system needs to flush the by products of the liver cells that will need to be replaced as the drug does the job. HCV really is debilitating to the spirit and if you work on raising yourself up during treatment I am sure you can breeze through it without problems. If you pay attention to the important advice below.

Keep active, eat normally, stay well hydrated and on an even keel during treatment!

I was able to do difficult things again for the first time in years during and after treatment. And did things that I long postponed, thinking I would never be able to do them again.
My fibroscan prior to treatment was way up at 26 kpg and having cirrhosis did not effect the outcome of treatment 3 years ago.
All the best
Eric

[jakas]

Dont worry ! Harvoni has side effects for just 3-4 days and many people have had none. Start as soon as possible and read up here for what on treatment is important to do. If you drink alcohol just avoid it. Look forward to a better life after harvoni, honestly its not bad at all. Dont fear. Alot of us here have gone thru it and are doing well, so will you. Good luck.

[Brenda534]

Thanks for replaying to me. I've read a lot and watch youtube videos about side effects during harvoni treatment for some people. I don't drink, smoke or take any other drugs. I was doing alternative treatment (cost around 1600 every six weeks) but I don't think it is working. Regardless of all of that, for years everything was creeping very slowly, but all of the sudden in last year I was pushed very fast to cirrhosis  level. My doctor was even surprised that it happened so fast.
I was hoping I have more time, but maybe not. I've been reading that people get blind on Harvoni, heart palpitations, joint pain, depressed. Do any of those side effects will eventually go away after treatment.
Do I need to go on short term disability? I work as computer programmer so doing heavy "lifting" with my brain. My doctor is out of town until end of October, so all those questions keep me awake. I am thankful that I found this forum, thanks for listening to my "ramble" Brenda

[jakas]

I think the best place is here with actual people and experiences. I know of no one who has got blind on Harvoni. You can work normally, I did on harvoni. Yes I did have a headache and some insomnia for the first 4 days but then it was ok. I drank lots of water. As I said dont worry you will be fine on this medication. Your doctor shall advise you more. Any side effects definately go away after or while still on Harvoni.

[Mugwump]

Thanks for replaying to me. I've read a lot and watch youtube videos about side effects during harvoni treatment for some people. I don't drink, smoke or take any other drugs. I was doing alternative treatment (cost around 1600 every six weeks) but I don't think it is working. Regardless of all of that, for years everything was creeping very slowly, but all of the sudden in last year I was pushed very fast to cirrhosis  level. My doctor was even surprised that it happened so fast.
I was hoping I have more time, but maybe not. I've been reading that people get blind on Harvoni, heart palpitations, joint pain, depressed. Do any of those side effects will eventually go away after treatment.
Do I need to go on short term disability? I work as computer programmer so doing heavy "lifting" with my brain. My doctor is out of town until end of October, so all those questions keep me awake. I am thankful that I found this forum, thanks for listening to my "ramble" Brenda

Curing HCV can be quite a shock to your system when it happens rapidly as it does with direct acting antiviral treatment. What happens is that your liver goes into overdrive replacing cells that were going to die because of HCV.

This is why keeping well hydrated, properly nourished and active physically is crucial to the process. Your liver rebuilds very quickly and for some of us it was like walking on clouds with energy to burn for the first time in a really long time. We called it the "the harvoni high".
You certainly should not expect to be debilitated by harvoni and the majority of people do not experience difficulties that lay them up. In fact the opposite is quite often the result.

This can be a little deceptive as the reality of age and the damage already done by HCV does step in and some of us seem to have greater immune based reactions and inflammatory side effects like myalgia and joint pain. Our best guess is that our immune systems are ramping up post treatment and attacking us. It seems that those who experienced extra hepatic manifestations of HCV infection, for instance autoimmune diseases before treatment might have some difficulties adjusting to not having HCV and our immune systems seem to take a while to settle down. I did as HCV caused my immune system to attack my thyroid and played hell with my health for years before I was cured by Harvoni. So I seem to have more weird extra hepatic immune responses than most other people and am keenly aware of them.

For me what did worsen was some allergic reactions to the fel D protein in cat dander... You know the stuff that makes you think that cats were put here on earth to torture the human race. We have three cats and at times I have to get the hell out of the house and go fishing just to be able to remain sane!
So all in all, yes you can have unexpected effects by curing yourself of HCV rapidly and not all of them are pleasant. But overall the benefit is knowing that there will be no possibility of infecting others accidentally and the certain knowledge that you are reducing your chances of developing HCC and other horrible diseases that HCV can cause over time.
Cheers
Eric

[Brenda534]

Thanks for support and telling me that I am going to do the right thing. I already have some joint issues, inflamtion of the body, trigger finger, must be related to body being constantly inflamed by virus for that many years. Having anexity before treatment, but I guess it is quite normal for some people to feel that way. Some of us are afraid of unknown.

[Lynn K]

Hi Brenda

I’m a 60 y/o female. I was diagnosed with cirrhosis in January 2008 with liver biopsy. I treated 3 times with interferon based treatment. My Fibroscan score before my 24 week treatment with Harvoni and Ribavirin was 27.

I did develop esophageal varicies four years after I was diagnosed with cirrhosis which I had banded and also some edema. But really I feel fine. I am working full time and currently in an intellectually intensive training program.

As far as while on treatment it was for me a cake walk I even took a business trip to Europe for a week. I did get a couple of mild headaches but if it was Harvoni or just a headache I would have had anyway hard to say.

Since you have early cirrhosis with cure you have a good chance your cirrhosis could even reverse with time. I am further down the cirrhosis road so I haven’t had much improvement beyond my player count improving from about 85 to 110 still below min normal of 150.

How is your platelet count that is an early sign of portal hypertension.

[Steve76]

Brenda,

My Fibroscan score is/was very similar to yours when done in September of 2015. I started 6 months of Harvoni in November of 2015. I finished treatment at the end of April 2016. You need to get cured first no waiting allowed.

I will tell you what happened to me on Harvoni, absolutely nothing, I had no idea I was on anything. I did not have one attributable side affect related to Harvoni.


This is funny, I was actually paranoid that I got a bad batch of Harvoni because of the fact I did not have any side affects. I actually called Gileads hot line and a nurse assured me most people don't have any side affects.


Please don't delay, this is an easy cure. Be careful about online sites that say otherwise...Good Luck. Peace

[Brenda534]

One more question, about taking the pill.

I am not a morning person and already have problems with falling asleep. I stay up late until 2 a.m, 3 a.m. ~.But once I fall asleep I sleep like a stone, hard to wake up. Most likely another side effect of Hep C

Would it be better to take Harvoni right at 2 a.m. and go to sleep, so I can sleep through if any side effects and when I wake up just to drink lots of water. I wake up usually around 10 a.m. ~.

Are there any other night owls out there on the forum, who can tell me what worked the best for them with Harvoni.

Brenda

[Lynn K]

I was working second shift I took my Harvoni on my lunch break at about 6 pm.

Some find they would get extra energy from Harvoni we called it the Harvoni high. Like many have said the most common side effect was an occasional mild headach. You don’t realky need to drink a tone of water just keep normally hydrated throughout the day like everyone really should. The old eight ounce glass of fluids eight times a day and doesn’t have to be only water any liquid counts.

What works best is being consistent just find a time you won’t forget to take your pill. If you are remembering to take at bedtime that should be fine unless you get that energy boost. Maybe with your meal around 6 pm ish is my suggestion. If you get a headach take a Tylenol is what my liver specialist recommended.

Best of luck