Started Treatment with Harvoni April 7, twice failed with PegInter and Riba

[Gittin Cured]

Hello All and thank you for the information you all provided that assisted me in obtaining Harvoni after a vicious fight with my insurance provider.  Your stories and continued trials were an inspiration to me to continue to battle both HepC and the medical insurers who seem to try and prevent access to the very drugs that will cure us.

I was diagnosed in 2006 during a routine annual exam.  Every previous annual exam the doctors just commented about my elevate liver enzymes, never mentioning HepC.  Finally, an older doctor performing the exam told me his suspicions and sent me for further tests which lead to the gastro doc and the story unfolded.  Apparently, around the time I joined the Army I contracted HepC and it had festered for years unchecked.  Cirrhosis had already begun and a lifestyle change and treatment were in order.

First round of PEG Interferon failed, I remember feeling like crap, but very little else, second round was failing until the very last blood test show cleared...but not for long, the dastardly HepC returned with a vengeance and started multiplying like it does.

Now for the new miracle drug Harvoni, I have not had my first blood work up yet, but am expecting good news.  Only a little over a week on the med, but I feel great, almost too good.  Trying to carry that feeling through the entire 24 weeks, wish me luck!  So far I have only experienced a few side affects - primary distraction is dizziness, not too bad, only when I tip my head way back or forward or when I lay down in bed at night, also some changes in bathroom habits, but nothing major or difficult to deal with so far, constant dry mouth, drinking like a horse, around a gallon or 1 and a half gallons of water with Crystal Light per day, lastly, I am always hungry, to the extreme, I try to drink more thinking that may be the cause of the feeling of starvation, but I am having trouble fighting the urge to eat nearly continuously.

Just wanted to thank you all and share my experiences so far.  I wish the very best to all of you, keep fighting, let's beat this ailment back to the stone age!

[Philadelphia]

Good luck!

[BubbaT]

Hello getting cured,

I like your name, we are getting cured!

I read in your post that your are using the crystal light,
I stopped using that after doing some research , and I feel a lot better now, and my hunger cravings stopped, I started using the real stevia in lemon water, I juice a whole lemon in a bowl and add a packet of raw stevia and mix in 12-16 ozs of water.
And I repeat this 4 times a day, with only water in between.

 since I'm F4 I went on a health binge because I was feeling awful and I cannot take drugs so it was nutrition I sought in my diet,I started
Harvoni 6weeks ago and have lost 12 lbs, and the first 2 weeks were the hardest for me..  I hope you get well soon...

I hated feeling like I was starving all the time and nothing I was eating was keeping my craving under ...I was having symptoms similar to those you mentioned...

[Gittin Cured]

Thanks for the advice Bubba, I have tried other things than crystal light, but I am drinking over a gallon of water a day and still thirsty.  Got tired of all the water and it is just easier for me to drink the mix at work, big staff and never time to myself.

I am F3, have you tired the 20 oz of coffee a day to reverse the fibrosis?  I just read another study hailing it effects and one of the folks on this site also said it worked for them  I tired it before, but do not want to take anything drug related while I am on the Harvoni, figure I will work on the liver health once I get the HCV beat.

I have not gained any weight yet, but I am still fighting the constant urge to eat.  Keep any tips you have coming.  Maybe once I get a few weeks under my belt that will pass.

Thanks much, good luck.

jack

[BubbaT]

Hey jack,

Yes I was a 30ouncer for yrs, I liked that newmans organic coffee that you Kruger!
A couple weeks ago I decided to quit the coffe and see if it would help me to focus on the lemon water and not be dependent on that morning cafiene fix. Because I was thinking the acids from the coffee may interrupt the absorption of the meds..

So, I'm able to take off work until I get thru treatment, also I was having issues with insulin resistance and pre type 2 diabetes, so I'm reading nutrition, studying to help take steps to use the best foods I can, improve my health..
I learned that crystal light has aspartame in it, you should google that stuff, it's one molecule away from being chlorine...  Nasty stuff...

My mother was using it and she's 79 and she was having all kinds of issues, dizzy,
Migraines.....

[atomic dog]

Gittin Cured, yeah, best wishes. I was treatment naive--wasn't a good candidate for Peg/Interferon and all that jazz. Harvoni is interesting, sometimes benign, sometimes a nuisance, sometimes seriously f***ed. But in Week 9, I'm hangin' in there, 3 weeks to go. I hope your weeks are filled with puppy kisses and rainbows. Carry on.

[MEG]

Welcome, getting cured.....I wish you the best of luck on this journey....you may have read through these threads and noticed that there's such a variance amongst us re: which side effects we have and which are most severe. It's all over the place...some folk have few side effects(and generally don't post as much) and others have severe.

My Harvoni experience is different in that I was quite sick with viruses then sinusitis, profound fatigue both before and during most of treatment---essentially bed-bound except for essentials, MD appointments and gentle walks with my dog-- for the last 12 weeks---my last dose is on Sunday....whew!

I will say though, that when I've had periods of feeling physically better(like this past week), these periods of utter brain clarity--all the brain fog gone---feel awesome. Make the difficulty of these 12 weeks worth it for me......Knowing that I am currently negative.....this too gives me strength.

Which is to say that no matter what symptoms you have---I see that your appetite is increased and you're feeling hungry all the time(there is a thread here about this)....keep your eyes on the prize of the CURE....

I do agree with Bubba about the Chrystal Lite. The aspartame is quite a toxin......if you can begin decreasing that and increasing other fluids(soup broths count and they're also filling), it would be great for you...

Wishing you the reward of an SVR.
Meg

[Lynn K]

Hello Jack and welcome to the group!

Congrats on winning your fight with insurance and on starting Harvoni!

We use a lot of abbreviations you may notice if you have any questions about what the heck we are taking about or about your treatment we aren't doctors as you know but will try our best to answer or at least point you in a direction for and answer.

May you have an easy treatment and SVR forever!

[Gramsgrl]

Hi, Gittin Cured, I also started my Harvoni treatment on April 7. I am 1b and tried Pegetron+riba  in 2006. I didn't complete treatment because it just made me too sick. So far my sides on the Harvoni are completely manageable. I have upset stomach most of the time and insomnia most nights. Some headache that is managed with ibuprofen and acetaminophen. I go this week for my first bloodwork and viral load. It seems early but my insurance company will only cover 8 weeks and my Doctor wants to be sure it is working in case he wants to try for approval for the extra 4 weeks. I am excited at the thought of finally being cured. I have had HepC since 1971 but didn't find out until 2001. My last biopsy showed Stage 2 Grade 2. I will follow your progress and many of the others on this Forum with interest! I live in Canada! Good Luck!