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8092660 tn?1442444098

Harvoni treatment

has anyone started the Harvoni treatment ?
25 Responses
6708370 tn?1471493810
A few people have started it and some (including me) will begin in a few weeks

Are you only doing 12 weeks because of your pending transplant?
317787 tn?1473362051
Hi there, it is nice to see you back.  How are you feeling? A few people have just started.
Is your doctor recommending Harvoni?  Are you still seeing Dr Fox?  I hope your health has improved
My best, Dee
Avatar universal
Hi, Randy here. Just posted you long response & had to reset password. Lost entire post. 6:25am - haven't slept yet- eyes rolling, but correct, united health care Rx plan approved me in 2 days for 12 wk Harvoni&89,000 from them & remainder from Gilead assistance. I start Nov 12th. I'll msg your inbox w/ my email & try to explain the unexplainable. ALL love & prayers to you. Xo Rbeth- username . Randy
Avatar universal
That last post was for flyinlynn in answer to question she posted. Prayer s & belief for is all! Thx Nan535 xo
Avatar universal
Hi, Randy here. Just posted you long response & had to reset password. Lost entire post. 6:25am - haven't slept yet- eyes rolling, but correct, united health care Rx plan approved me in 2 days for 12 wk Harvoni&89,000 from them & remainder from Gilead assistance. I start Nov 12th. I'll msg your inbox w/ my email & try to explain the unexplainable. ALL love & prayers to you. Xo Rbeth- username . Randy
Avatar universal
Hi, Randy here. Just posted you long response & had to reset password. Lost entire post. 6:25am - haven't slept yet- eyes rolling, but correct, united health care Rx plan approved me in 2 days for 12 wk Harvoni&89,000 from them & remainder from Gilead assistance. I start Nov 12th. I'll msg your inbox w/ my email & try to explain the unexplainable. ALL love & prayers to you. Xo Rbeth- username . Randy
Avatar universal
And to all and flyinlynn- sport 3 identical posts came on. 7am & obviously need to go to sleep, but must get BW done first. I'll MSG Lynn's inbox. Love & prayers to all. Randy btw , thank you Nan535 for getting my rear in gear! I am F1-F2 as you predicted! Will def stay on forum to get & give  support & info/ update... 1 post at a time, really!  Love & prayer to all !
1930700 tn?1327068504
I started Harvoni October 17.  Treatment n....F2/F3..66 yrs. old.  I almost think its a placebo as I feel nothing.  I've not gotten yet the headaches or feel tire.  I had the blood work after 10 days, everything perfect - kidney, no anemia, and the alt and ast came out normal!  This would be the first time in years.  

I understand that the alt and ast have nothing to do with how much damage or virus one has (is this true) but it's nice to see them normal anyway.

I return 11/28 where I hope they do the test to show if its undetectable.  Not sure when this occurs.  

I wonder - why they don't make a pill like they do with HIV that you take for life to make the virus undetectable forever.  My concern is that - - you get SVR only to relasp - there is a possibility it comes back - so why not keep it at bay.  I would take Harvoni forever...lol
6708370 tn?1471493810
"My concern is that - - you get SVR only to relasp - there is a possibility it comes back - so why not keep it at bay."

because once you achieve SVR, you are "cured"

Those who relapse may have reached an undetectable milestone but they were not cured
683231 tn?1467326617
Hi Millie

Just to add I was undetectable on treatment with Sovaldi Olysio and unfortunately did not make SVR sustained viral response.

Undetectable just means the virus is in amounts in your blood below the ability of the test to detect but it does not mean it has been eridicated at that point.

Once you complete a treatment and the virus is still undetectable 12 weeks later that means you are cured of hep c and the only way you would test positive for the virus is if somehow you got a new infection. That is the goal of hep c treatment to compleatly rid your body of the virus.

They have not found a way yet to do that for HIV so that is why they take the meds for life to keep the virus a bay as that is currently the best they can do at least for now.

Also you will always test positive for antibodies to hep c. Those are made by you body to fight the virus for example if you had measles you will test positive for antibodies but you do not have the measles virus in your body.

Good luck hope you beat the dragon
Lynn
8092660 tn?1442444098
Yes , That is my understanding, But I am hoping or more than 12 weeks personally.  My liver labs have been very stable despite the cirrhosis for many months now.'No ascites, no edema etc.  Only lingering gremlin is the occasional bout with HE, but it has not become alarming or unmanageable.

I really really, want the best shot at a SVL/ I  stay thinking positive towards it all, plus being realistic to the possibility of failing the treatment.
   Something about my son going through all that he us willing to go through, for me to just infect the precious lobe he is donating.
  As you can imagine, So much of this inner fortitude is based on a spiritual connectedness which teaches acceptance and self honesty
above all, and  being there for others in whatever way I can. As well as the Medical component,  My gratitude is huge, since I have had many close calls already .

The Harvoni has had no adverse effect on me, I started it last Wed, and today  I went for the first labs. We'll see in time how it's going.
I am very interested in attending the end of the month HCV support group that meets on Wednesdays and once a month as well at UCSF. Do you have any info on those ? I would certainly appreciate it.
   I would love the support while i'm in this treatment.

I ope I hear more in detail if you reached a SVL.
Okay checking out for now, It is a bit easier to sleep these days. As long as I stay away from brain deadening  television. But sometimes it helps,

Thank you for your responses .

R
1930700 tn?1327068504
Flyinlynn - (sorry for late response..takes me forever to get back to the site).

That is really a good explanation.  I just picked up my second bottle of Harvoni yesterday...So on to month two.  I understand now - if I am undetectable on 12 weeks - I wait another 12 weeks for the SVR which we all hope to reach.

I rather feel bad that I even said that about HIV...having a daughter and my beautiful granddaughter who was born with the virus - (now 22 - will graduate from college soon) I give anything so they would discover a treatment like they are now doing for Hep c.  I digress.  :-)

I am sorry you did not reach the SVR....I hope your next treatment is the cure.  They say, that even if were are not cure - the time one is on treatment is giving the liver a break so to speak.  

Thank you for you good wishes.  On to beat the dragon....Month 2.....

Thanks to all for the comments.
Avatar universal
Good job Millie....we're all pulling for you.
Avatar universal
I hope you achieve your SVR Roxan
6708370 tn?1471493810
Hey Rox

Will send you a private message re: support group meeting times. I must confess that I have not been as often as I would like. Work in the East Bay makes it challenging for me to be at a support group in the City during the day

But I would Love to see you. You sound very much more lucid and positive about the really Big steps you are taking to get well

I am so moved by your story and the courage of both you and your son. Please know that I think of you often and am sending love and light your way

Gentle Journey to you! I know you can do this and we will both be enjoying our new  Hep C free lives soon!

~ Linda
Avatar universal
had to reset mine also and then they said time was up do it again...glad to be herre
Avatar universal
I'm starting 12 week Harvoni on Mon. 11/17, on my counter for 5 days, but delayed start due to stomach virus(gastro pareses flare actually) Anyway, very grateful for approval & opportunity to treat. Been posting & would really appreciate a support post back,  first time treating, 1200 miles away from hepa & family. , and grateful & nervous. Flyinlynn so glad you got approval & starting soon. A question please, how often are CBC's to be done & is first VL @ 4 weeks? My pharmacy is great, hepa( bless him) away for 3 weeks & just curious about BW protocol. Much hope to us all. Really want to be active in community. Thanks,
Randy
683231 tn?1467326617
Hi Rbeth

Good luck on treatment. The protocol my doctor is using is every 4 weeks on treatment and 12 weeks post. I do not know which ones are viral load but based on the Sol/Oly treatment I just did, I am guessing viral load at week 4 and week 24 EOT and 12 weeks post treatment or 36 weeks after my first dose.

Lynn
962117 tn?1416362216
Hi all, My name is Tanya, I am hepc 1a, type cc, vl 16 million. I was on site a few years ago when I almost started the gilead/bms trial.  I chickened out at at last minute due to no data on 12 wk. svr. I now just picked up my Harvoni prescription after a short uphill battle with my HMO, and I am going to start on Dec. 1st, to give myself some time to get rid of my chest cold first.  Looking forward to finally getting well after 30 years.
Avatar universal
Hi,

Day 19, so far, so good.
So I'm knocking on wood.
Take it at night and
Sleeping all right.
Aches and pains? Not so much
And every few days, a new toothbrush
So onto day twenty, then forty and more
May the Dragon be gone by day eighty four!
962117 tn?1416362216
My doctor, Kaiser Permanente HMO, has made appointments for me to be monitored every 14 days. I have been told they will be doing check ups and bloodwork each time. Best of luck to you and keep us posted during your tx.
962117 tn?1416362216
Glad you're feeling well and thanks for the update!
Avatar universal
Thanks Tanya.
Good luck with your treatment!
683231 tn?1467326617
First Harvoni pill on its journey 167 pills to go.

Had a feeling of warmth on face and cheeks flushed a bit not much else to report
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