Starting Harvoni 11/17 BW question & folks to journey with~

[Rbeth]

Hey family, Rbeth writing-
Just took me 6 months to understand how to post questions for response/support. Been posting on  others posts in hope of supporting them/ info, but not getting response to any questions of my own/ just knowing someone's there. Now, I know why :)
Start date Harvoni (12 wk) is 11/17. Have some BW question's- 1200 miles away from hepa( bless him) & family. Pharmacy great, hepa just left for 3 week vacation & would so sppreciate response from community I feel like family with & want to be active in. I know we're all pressing on, hope I haven't overstepped. Keeping all in prayer & hope for cure.
Thanks, Randy

[flyinlynn]

Hi Randy

Thank you some much for your kind words.

Most of us here have been down so many miles of hard roads we here are all warriors yourself included!

I wish the same for you an easy time on treatment and SVR at the end of the road.

This is a recent post from Nan from yesterday copied here from another thread:

http://www.medhelp.org/posts/Hepatitis-C/Harvoni-with-or-without-Rib/show/2380673#post_11551367


Lynn
As you may recall, my husband had a very difficult time getting through his Sovaldi + Ribavirin treatment for 24 weeks.  I was so relieved it was over yet somehow knew he would relapse despite it all.  Given your symptoms of decompensation (portal hypertension, ascites),  I have to agree with your doctor's decision of putting you on Harvoni alone for 24 weeks.

Honestly, I hope that is what my husband's doctor decides to do too. The thought of going through what he went through last time again is just to hard to think about. He was hospitalized five times and fell 5 times. He had ongoing bouts of hepatic encephalopathy. Once he stopped treatment in late July, he has not been hospitalized since and is stable on his feet. Thankfully, he has had only periodic minimal HE episodes since stopping treatment.  So treatment definitely caused huge problems for him. (Keep in mind that he is post transplant also.)

I think your doctors know you best and are making the best decision for you.
Time will tell if this treatment will cure you of this virus. If you relapse, that does not necessarily mean the result would have been different had you taken the Ribavirin. My husband did and it didn't make a difference.

All the best. Hang in there.

Nan


Good luck to you Dragon warrior Randy!

[Rbeth]

Just an extra note for Lynn.  You are such a warrior of strength & tenacity. I watched you through S&O & your hope, on this board didn't waiver. Thank you- you gave me the courage to begin treatment! Wanted you to know that & that you really give so much, in the midst of your own trials. You are a gift & look to see your cure this time!!
Randy
Btw, any word from Nan on her husband?

[Rbeth]

GT 1a, HCV 1976, tx naive, F 1-2 .48 fibrosure  
Hi to all. Just saw these posts. Acute bronchitis/ antibiotic  has stalled start again. HOPEFULLY, starting 11/21-23, if pharma agrees.
THANK YOU- more than I can say for support!! This tx weary, cured, determined, hopeful & informative group is family, for sure!
Lynn- how is day 3 for you? Flushing gone? I hope so
Susan- thx & how are you?
Kim- I pray to pay it forward, as you're doing for years to come... TY
Bob- Yay & pray :) for SVR for you
48- I haven't braved as much as you... Hope express scripts comes through for you! I have united health care & they approved instantly... Are you old enough Lol to have Medicare & D? I'm believing for you to get approved
Deb- if Ekkie is your child, she's fortunate :) thank for your welcoming comfort to me, to Bob & sincere encouragement to all. Celebration is coming for you at 24 & 36 weeks! Even now!! Thx for water tip...
A huge prayer for SVR & CURE to all here & everywhere!
Blessings,
Randy

[Ekkiemom]

Hi 48 Sorry to hear you relapsed on prior Tx's. Good luck on the approval for Harvoni. I really can't seem to wrap my head around having to get approval for a drug that is obviously needed, but who am I. Maybe it's because there are sooo many people needing this newest Tx that they just can't keep up. Though in the back of my mind I can't help but wonder what they (pharma) was thinking, why not be prepared right. I suppose if you don't have the nasty dragon biting at your heels the impact of the urgency is quite different. There are a whole lotta baby boomers out here all in the same boat. Happy you are here with the community. These are a great bunch of people willing to help. I am nearing the EOT. I HAVE 8 wks to go on 24 wk protocol with Sov/RIBA and I haven't felt this good in 30 yrs. there is SVR for everyone. I was told by my Gastro that Gilead in the not so distant future, trials for a 4wk Tx for ALL GT's cirrhotic or not! The end game for Gilead is to have the vaccine that will end HCV once and for all. So..keep the faith hang in there come to the community when times get tough for you and go away feeling a little better than when you came. Be well and as always..
Peace & Good Karma to you
Deb

[48weeks]

I found out in Oct of 2013 that I relapsed on triple therapy with Telaprevir, prior to that I failed int+rib twice. GT 1a, no cirrhosis yet as far as a biopsy last Feb says.  My GI is trying to get me approved for Harvoni. I have BCBS with Express Scripts so we'll see how this goes.  Best of luck to you and everyone else on here for SVT!!

[Ekkiemom]

Hi Bob, also welcome to the community. Happy you are doing fine on your Tx. So happy u aren't experiencing SFX Makes its much easier for sure. Keep us up to date on how you are feeling. Take care of yourself!
Peace and good Karma
Deb

[sniperbob1950]

I've been waiting for years for this treatment to become available god bless gilead   3 weeks into treatment with harvoni and 9 weeks to go  not much for side effects  good luck  everyone

[Livelife777]

Hi Randy.  Just want to say hi and welcome.  We have all been in your shoes and here to support you.  Good luck starting your new journey.
.....Kim

[Ekkiemom]

Hi R....welcome to the community, we are happy you are here. You are now at you're home away from home with a great big extended family! lol. Wish you lots of luck with the Tx. I'm on different Tx wk 16 of 24 and feeling the best I've felt in 30+ yrs. Just wait your SVR is right around the corner. BTW DRINK LOTS OF WATER, it really does help. Take care and keep us updated on yor progress.
PEACE
DEB

[flyinlynn]

Hi Randy

Starting Thursday for 24 weeks. This will be my fifth try at beating hep c. 3 times with interferon based treatment and 12 weeks with Sovaldi Olysio relapsed 12 weeks post treatment.

Genotype 1a dx cirrhosis in Jan 2008.

The listed sides for Harvoni (combo of Sovaldi Ledipasvir) are headaches and tiredness. So we will see how it goes.

Good luck to you
Lynn

[susan400]

I haven't ever done Harvoni, but I've done many other Hep C treatments.  My last on was on the Sovaldi/Pegasys/Riba.  Sovaldi is in the Harvoni pill, it's part of the combined medications in there.  Maybe somebody will reply on here who is taking the Harvoni and they will be able to relate to any of the different type of symptoms you are having.., if any.  If you aren't having to use the Interferon, which I don't think you would be, it should be alot easier to handle. Did you have to take the Ribavirin pill with the Harvoni, or just Harvoni?  So far, the only side effect I've heard about from someone I know on the Harvoni, is the headache.  When I was on Sovaldi/Peg/Riba, I had other side effects because of the combined Peg/Riba, so it's really hard for me to say if it was the Sovaldi causing it or not.  I think that you are treating at a very good time as far as the new drugs available to people these days.  I think you will do great!  Susan400