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Post Info TOPIC: Reflections on "Harvoni" - Before, During & After


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RE: Reflections on "Harvoni" - Before, During & After
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Ok, so I didn't take Harvoni, but I assume this thread relates more broadly to DAAs.

Before: looking back, I completed underestimated the effects of chronic HCV, which was my coping mechanism.  For the first 10 years there were few symptoms to be fair apart from an icky/toxic feeling and occasional liver pains. In the 2nd decade fatigue crept in, as well as some gastro ones (bloating).  But the nagging, sometimes conscious, sometimes unconscious worry about having a life-threatening illness was the worst of all.

During: some mild flu-like symptoms (hot/cold chills), occasional light headaches and some gastro disturbance for the first few days but then no side effects.  The icky/toxic feeling started to go after the first tablet.

After: Enormous psychological relief at being UND. Some liver pains (which I conceived of as my liver repairing itself) for a few weeks.  Huge increase in energy levels and general feeling of well-being.  Able to wake up in the morning feeling refreshed for the first time in years.  



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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marjim48 wrote:

I start tomorrow. Will take the 20 mg omzerapol at same time as harvoni. On empty stomach....this is correct? A glass of water??


Best of luck to you! You got this!

I am taking my Harvoni and my wife did the same thing. We both take Omeprazol.

20mg max. If you are taking Omeprazol with Magnesium DROP THE MAGNESIUM.

We set our alarm for 5:55am. Took the Harvoni and the Omeprazol at the same time, together each day. Wait for maybe 20 minutes before you eat anything including drinking coffee. ( My Mr. Coffee kicks on at 6:00 am sharp and 15 minutes later MMMMMMMMMMMMmmmm!)

We are both UND at 4 weeks. She has completed treatment. I either have 2 or 26 weeks remaining. ( Long story there LOL)

DO NOT TAKE ANY MORE THAN THE 20 MG OF OMEPRAZOL IN 24 HOURS. DO NOT TAKE ANY OTHER ANT ACIDS.

If you get heartburn, eat a cracker, some bread what ever but NO ANTACIDS.

Do that and I will see you in SVR-12Ville.  ;)

 

JimmyK

 



-- Edited by JimmyK on Friday 24th of June 2016 04:44:59 PM

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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."

Tig


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I'm sure you're on your way already, so good luck to you! You should take it with a big glass of water and then continue to drink that water, all day long. Remember, you MUST drink at least 3-4 liters of water per day! Very important!! That assures proper hydration and minimizes the side effects.



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Tig

65 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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RE: Reflections on
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I start tomorrow. Will take the 20 mg omzerapol at same time as harvoni. On empty stomach....this is correct? A glass of water??

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Miriam

 

68 years old....Genotype  1a....did interferon/ ribaviron in 2002 (unsuccessful )....viral load before Harvoni 234,003.  Alt 30..fibrosis stage F2..  fibrosis score 0.48  ...started 12 week Harvoni 6/24/16. 

4 week bloodwork -undetected.  ALT 18, AST 20.

12 week bloodwork -undetected. 



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RE: Reflections on "Harvoni" - Before, During & After
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Thank you but Edward seems to be more consistent with the Biker side of me. Blends in better at an Ice House.  LOL

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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I'll trade ya a lingering, stubborn Edward for a peaceful, Laughing Bhuda smile



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63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 



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Just a quick update.

Before: Hard to really put my finger on anything. I kind of simply ignored the condition and never attributed anything to it. That said, when I went through my initial treatment of the V-Pack / RBV that one did not sit well with me. Kind of took on a Jekyll /Hyde personality which became more of a Hyde (Just call me Edward) scenario as the treatment dragged along. That plan curled me up pretty good and to no avail. Breakthrough finally (and mercifully) declared with six days of a 12 week regiment remaining.

During: Rested up some for roughly 3 1/2 months and started the current Harvoni Train. At that time is was clear that much of Edward remained yet was subsiding some. Presently (64 days later) I believe Edward has finally left the building. Feel pretty fair. Declared UND at week 4 which was cool. During the present treatment I have maintained an acceptable level of hydration so very few side effects. Bit of acquired laziness along the road and still not getting a proper nights sleep. Other than that, no complaints. With VL UND and labs all in the normal range I am feeling pretty confident that this routine will in fact arrest The Beast. I am kind of missing Edward because sometimes it is just fun being bad. Lacking any further excuses now it makes it hard to have fun. LOL The Little Lady is doing better every day now at 25 days post EOT and that makes me smile as I type this. All is good and I will keep updating as I continue down the tracks.

To God Be The Glory, of this I am sure.

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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I am 1 year post treatment and 14 months undetectable.

Before:   Joint pain, insomnia, nausea, cirrhosis.  Since Harvoni had just come on the market, the drama of who gets treatment first, frequent battles with insurance companies and guilt over being approved and others weren't added to the stress.

During:   Headaches at first, but they went away quickly with correct hydration, muscle spasms in calves, back, and hands/fingers, dry mouth, nausea, insomnia, hair loss, itching, brain fog, depression which was more of a lack of interest in doing the things I usually like to do.  Even with all that, it really was a very easy treatment .             

After:       A1C rose to 8.5 after treatment(during treatment?) but returned to normal quickly, intestinal issues(biopsies haven't returned yet, but stomach was unremarkable), nausea, fuzzy vision, slight depression still . I do feel much stronger now.



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62 y/o F     Genotype 1b  for 40+ years    cirrhosis    Started Harvoni  on 11/23  for 12 weeks       UND  12/22/2014     Ended treatment on Feb 15th.

12 week's EOT viral load      <15 



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Greetings y'all.

I may have missed it and if so forgive me but I believe it is very important to be aware of Harvoni and the need for an acidic environment to be most effective.

This would of course be in regards to DURING.

During Treatment if one is accustomed to taking an acid suppressant such as Omeprozol, it is important to dose properly.

Whereas in most cases if you take Harvoini it is with or without a meal and at a time of day of your choosing so long as consistent in most cases.

NOT SO if you take an acid suppressant. In that case it should be first thing in the morning, empty stomach and at the exact same time as you take the suppressant. This allows for Harvoini to be taken in the most acidic environment over the course of a 24 hour day.

It is highly advised that NO ACID SUPPRESSANT be taken at any other time during the day other than at the same time as Harvoni if necessary.

This can be key to success in such cases so please consider this important.

Some folks don't consider over the counter types of Meds as important to report but they are, ALL OF THEM in particular anything you will take during Treatment.

Many thanks to all here.

 

JimmyK

 

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Before- Bloating and fatigue.  Just that strange feeling.

During - Wife says I was manic - too much energy! 

After - Still a little dull ache sometimes (I have cirrhosis), but overall great.  I can't stop eating though!



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John   non-responder  

Undetected at week 2 on solvaldi/rib/interferon:  stayed through week 12 but virus came back as soon as I stopped.  on   Harvoni and ribravirin 24 weeks undetected after two. 8/2/15  12 week EOT  UNDETECTED!  SVR

1991-2015 RIP

 

Tig


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Bump! Just keeping this in the view finder. Please post your remarks on side effects or anything related. The need for data to make a responsible opinion requires a lot of replies, so keep them coming! Thanks...

 



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Tig

65 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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Hi everyone,

I`m bringing Matt`s thread up again for the benefit of our members on Harvoni.  I think it`s worth keeping this updated by those who have completed their treatment.

Just a few words or short descriptions needed, any positive or negative experiences...   Before, During and After treatment.

If anyone has any other comments or questions regarding Harvoni treatment please could you start a new thread or post in an existing one. 

Thanks! 

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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before: bloating.  fatigue. depression

 

during: manic energy   insomnia   hunger

 

7 weeks after:  irritable   more energy  brain fog  better sleep



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John   non-responder  

Undetected at week 2 on solvaldi/rib/interferon:  stayed through week 12 but virus came back as soon as I stopped.  on   Harvoni and ribravirin 24 weeks undetected after two. 8/2/15  12 week EOT  UNDETECTED!  SVR

1991-2015 RIP

 



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BEFORE I had upper right quadrant pain, muscle aches, insomnia, vision got bad quickly. Digestive issues and bloating all the time.

DURING treatment I was fatigued the first couple weeks.  Brain fog, joint pains and I slept the best I have ever slept in my life. Digestive problems went away completely. Cramping in feet badly!

AFTER I am five months EOT.  I feel better but that took several months.  Still have problems with my hands and feet hurting.  Bad arthritis issues and haven't seen the doctor yet about it.  Liver area pains are gone.  Sleep is pretty good but sometimes alludes me.  Digestive issues returned within a day of ending treatment and still are here.  I take two Zantac a day.  GI doctor isn't interested in any of these remaining problems.  And I am grateful to have been given treatment without any issues from Blue Cross. 



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GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!



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Before:  The fatigue was unbearable.  That was my main symptom, along with brain fog.  I felt as if I had one foot in the grave.  Could only perform one or 2 tasks and you would think I ran a marathon.  Caused me to retire early from a job I was with for many years.

During:  United Healthcare wouldn't cover me -- I was fortunate enough to get 12 weeks of treatment through Gilead Support Path.  Easy to take, one pill a day -- slept well, ate well, a little too much, headaches several times throughout the 12 weeks, especially when I didn't keep hydrated.

After:  5 weeks EOT undetected so far - Unfortunately, brain fog is still there and hasn't subsided one bit; however, that unbearable deathly cloud of fatigue is gone and for that I'm grateful.  I get "normal" tired.  I can do a bunch of things every day.  I feel alive again.  What a great feeling!



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Me: 62 yr. old female, GT 1b, fibroscan 4.5; VL 650,975 as of 2/4/14;started Harvoni 3/6/15; SVR


Hubby: 59 yrs.; GT1b; fibroscan 25-cirrhotic; S/O for 12 weeks started tx 3/20/14; SVR56; fibroscan done 7-7-15 = 8.5

Tig


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Hi Ranelle,

Congratulations on finishing tx and getting that EOT undetected viral load! Big WOOT!! Time for some recovery and celebration. Please share your news on the Harvoni Train thread! Good luck, keep us posted...



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Tig

65 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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Before: No real problems

During: A headache here and there, muscle aches, FOGGY HEAD and Forgetful!!!

After: Well, I just finished on the 1st, labs drawn on the 6th and was told today that Im undetected. So, right now Im in shock, flying high and feel that I am dreaming! My lab values are so normal that I had to read and reread them!   



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Dx:2007; Genotype 1; VL 1.4mil, start triple therapy (peg/rib/inc) 6/2/13 (Failed), Harvoni 12 weeks EOT undetected, 6 month EOT UNDETECTED!



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Now I have a right too

Before: Fatigue, muscle cramps (legs, small of the back), itchy skin, bad sleep and insomnia

During: Headaches sometimes, very good sleep, full of energy, had two weeks of a higher heart rate

After: less of a week but still OK, sometime my sleep is light but  I think it's only my agitation after EOT



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G1b, stage 4, cirrhosis

Harvoni Tx: Jan-Jun 2015 for 24 wks, SVR12, SVR24

PrevTx : relapser, Sovaldi +Peg+Riba for 12 wks, Jun-Sep 2014

My thread



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Hi all!

Before tx, fatigue, but was able to function

During tx slept a lot.  Could not do anything after 6:00 pm.  No pain.  Easy to remember to take 1 Harvoni at 5:30pm.  Mood swings for sure.

now EOt still don't know what or if I'm completely undetected.  My hepatologist told me that while I was on Harvoni everybody is undectecable.  I have to wait until the very end of July.  Will let u know.

my right leg is swollen by my caof, and has little red dots.  I went to a varicular dr yesterday.  I have no pain.  He took a dopplar on both legs.  Thank G D I don't have any blood clots, however he wants to do a procedure with going thru my groin with a laser and laser fibers.  He said I have some kind of circulation problem.  I'm going to get a second opinion because he is a surgeon, and the first thing they do is cut you open.  I will I find out on 7-6-15.  I was wondering if anybody else has had this problem since their EOT w Harvoni?

G D Bless All of You on the Harvoni train and ones who have finished treatment but still are there always for others!  Hugs going your way!  Roey

 



-- Edited by Roey on Friday 3rd of July 2015 01:57:28 AM

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roey

 

 

 

58 y o female genotype 1a naive to treatment, 2-1-15 start Harvoni 



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Good idea Matt!

Before- Fatigue, muscle aches, some depression.  Severe neck pain started about 6 months before treatment. I attribute much of the issues to HCV although age, injuries and life events surely contributed.  Approval was smooth - doctor's office called 11/12/14 and said Harvoni is available and we can ask for approval from your insurance (Blue Cross/Blue Shield Federal Employee program).  I went for blood work the next day and Harvoni was approved surprisingly quickly.  Started treatment on 11/26.

During - Very easy to take one pill a day.  I set an alarm on my phone and kept a pill in my purse in case I was away from home at pill time (I took it at about 8 PM).  The cell phone alarm and the pill in the purse came in VERY handy a few times!  During treatment the neck pain increased. I had one episode of brain freeze that lasted about a minute.  And I had some periods of increased brain fog mixed with heightened alertness/better short term memory. I often had a heavy head upon waking, but I didn't drink as much water as I should have.  Drinking more water is the only thing I would change.

My co-pay was $70 a month. I didn't realize that I would qualify for Gilead Support Path's co-payment coupon until the second month.  When I finally went on their website it was a breeze to sign up - no financial info necessary and the coupon brought my payment down to $5 a month!

After - 16 weeks after the end of treatment I am SVR and feeling better and better. Still have neck pain although it's probably unrelated to HCV or Harvoni.  Otherwise I feel good!  I think my short term memory is better, and overall my energy and mental outlook have improved. I am thrilled to be rid of the virus after 30+ years!!!



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HCV Gen 1a diagnosed 2001; Labs 11/13/14: VL 1.2 million IU/mL, ast 88, alt 111. Harvoni TX 12 weeks.  EOT - 2/18/15, VL UND & normal ast/alt.

4 wks after EOT, VL = UND; normal AST/ALT at 4, 8 and 14 weeks after EOT.  15 weeks after EOT = Undetectable!



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During, energy level was great until I added ribavirin, ultimately had to stop because of toxicity (the ribs only).  Eight weeks out energy level is great.



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Tig


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Great idea Matt! I think this will be very helpful and informative for all of our Harvoni members. It should prove to be a good resource for all of us.



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Tig

65 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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During: Easy, with abnormal exhaustion the main side effect.

After: (I'm SVR12) Energy levels have normalized. But having trouble with sties and canker sores (totally new symptomology for me).

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As we reflect on our personal experience with the "Harvoni" treatment,we ask what stands out in your mind, and what happened that you did not expect, what would you change if you could do it again, Positive or Negative,  Before, During & After treatment.

Before- It takes some Insurance companies a lot longer to get up to speed on correctly handling HCV approvals. Once approved, received the meds way ahead of time via UPS 1-day signature  required delivery. 

During - Very easy to stay compliant. The sides effects of "Harvoni" were never dealt with before treatment by the doctors and nurses, and not really recognized and dealt with during treatment.   

After - (I'm still waiting for my 4 weeks EOT)  but so far the energy level is way down and especially upon waking in the morning things are really slow. This protocol also seem to produce strange sporadic minor pain in various area in the abdomen and joint areas.

Any thoughts?

matt



-- Edited by Matt Chris on Monday 15th of June 2015 07:20:07 PM

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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 

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