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Post Info TOPIC: Starting Harvoni-Not Sure my Doctor is up on it...
Tig


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RE: Starting Harvoni-Not Sure my Doctor is up on it...
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Roger,

Since there has been no "better" time to take your dose, it's best to take it when you experience the least side effects following intake. Some here have experienced more insomnia after taking it at bedtime, so morning with breakfast is better. Whatever schedule you begin, discuss it with your doctor. If you have started in the morning, you don't want to just change it up to night time in a single day. There is a bit of advancing hours suggested when changing your intake time significantly. Hope this helps!

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Matt Chris


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Hello Roger

The official Gilead guidelines says anytime with or without food, but in my experience for me I prefer just before bedtime without food. I would recommend writing down on a calendar the exact time every night so you can be sure that you remembered to take it.

also check out this link / reference on how important it is to take with a proper PH balance of stomach acid.

Click to link http://hepcfriends.activeboard.com/t59686753/pharmacokinetics-of-harvoni-what-is-it-why-we-should-care/

Success to your "Harvoni" treatment train journey

matt   



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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! 
clhndluke


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Thx Tig. Was wondering any rhyme or reason concerning when to take it in the Am. or PM?

 

 

 



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Tig


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Hey Roger,

Congratulations for both standing up and letting your feelings be known, as well as starting treatment! Good job buddy! It's so important to be your own best advocate. Often these doctors and nurses, using your analogy, just run patients through "like cattle" and don't pay the appropriate attention to them. I think they will remember you in the future!

This medications will play with your metabolism the first week or two, so expect a few side effects to happen, however slight hopefully. Insomnia is well known with this protocol. Something like Tic Tac's in your pocket will help the cattle car taste in your mouth. Oral care and plenty of water is very important during treatment. So stay on top of that. Keep up the excellent work, you're doing great! Good luck...

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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clhndluke


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Thx. I finally went to my Primary Doc. and told him the scoop and ask if he would have my back and write the blood test for week 4, he said yes and wrote it on the spot and gave it to me, and said he had my back. I then went back to Gastro guy told his nurse that if they wanted to help I could use it but that if they didn't want to help I would take care of it, well that woke them up and she said I could not start with out them, I told her I could and was ready and I had medicine in my possession, long story short they stated acting better and am on day 2, so a little pro-activeness works, I felt a little foggy tired yesterday, and it is 2:30 am now and so a little insomnia, a lot of cattle in my mouth taste....by the way I have relatives in Stilwell and Salisaw Oklahoma area, so I guess I am on the train but really feel a little like on the cattle car...LOL



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Rubye


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Hi Roger, I used to live in an extremely small town in SE Oklahoma but was fortunate to have one of the Indian clinics available. It was scary how little the doctors there knew of Hepatitis C and how many were prejudice toward those with the disease. My clinic was excellent but when I moved into a larger town I could not even find one gastroenterologist who would see me as a Hep C patient. So, I went to Baptist Integris and was able to receive good treatment there. I don't know what state you are in but most states have a liver transplant center and even though you may not be at that serious a place, they still see Hep C patients and are much more knowledgeable than the local doctors. It can be a long drive but I found my 3-hour drive was well worth the time.

Good luck to you!



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UNDETECTED 5/4/15 - 16 weeks after EOT, 1st treatment - Sovaldi and Olysio, Geno 1a, 67 year old with compensated cirrhosis, over 40 years with HCV.
Cinnamon Girl


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Hi Roger,

Well I suppose it depends what medicines you`re taking and what they are prescribed for.  If they`re not on Gilead`s list of medicines which could interact with Harvoni I guess it`s ok to keep taking them.  It`s not advisable to just stop any prescribed drugs if you`re taking them long term, and certainly not without talking it over with your doctor.

I can see your difficulty when you don`t have a very helpful doctor but it`s not an easy question for us to answer.  

Best of luck with your treatment, keep us posted.






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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.

 

 
clhndluke


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I was just wondering if anyone had any experience with medicines not any illegal drugs, or if there was a thread about it, I live in small town and not many doctors, and the one I have has not even discussed it with me as I think he did not expect it to be approved....I am not going to beg him for anything, I think he is one of those people that  thinks people our age are a drain on the system....Well I will take care of it myself......

 



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Tig


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Hi Roger,

Welcome to the forum! Unfortunately we're not able to provide that kind of advice. That's a question for your doctor and/or Gileads support line. If your current prescriptions are not on the adverse reaction list, chances will be good that they will approve it. But the reason you must check with them first is because the dosage may need to be adjusted. I was taking one medication that was approved for my protocol, but it had to be reduced. Because, when combined with the treatment drugs, it could affect my heart rhythm. I had to be monitored by EKG throughout the treatment period. So I recommend you check with them before taking anything you're not sure of.

Be sure you check out our thread named "The Harvoni Train" in the On Treatment section. I'm glad you're here and look forward to your participation! Good luck...

Tig

http://hepcfriends.activeboard.com/t58762824/all-aboard-for-the-harvoni-treatment-train-enjoy-the-ride-fo/



-- Edited by Tig56 on Thursday 5th of March 2015 10:59:03 PM

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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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clhndluke


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Hey Thanks for info and the welcome, I have Harvoni in hand and I am wondering if there is a thread about if it is ok to continue existing prescription meds if they are not on Gileads list?

 

 



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Tig


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Hi Johnny,

Bill is correct on the Harvoni coupon program. You'll find it via the info I left you earlier. It's a program that works!

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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masbirdies


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Hi Johnny, 

My co-pay was to be $3300.  I went to the Gilead website (makers of harvoni) and there is a sign up for a coupon that will pay up to 25% of the cost of the meds for a $5 co-pay. This reduced my out of pocket to $10-15...depending on if I need 8 or 12 weeks.  The coupon is soooooo easy to get.  I would definitely get that first as you can get it immediately and online without talking to anyone.  It took me less than 5 minutes.  It prints out a coupon that looks like an insurance card with an rxbin number, group number, issuer number and member number.  Just give that info to your provider and it will wipe out 25% of the costs!

 



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56 year old, Geno Type 1a, 2.1mm VL, F3 bridging fibrosis, diagnosed 02/2014, Started Harvoni 02/25 (8-12 wks) Cured date 04/03/15 
Tig


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Hi Johnny,

Welcome to our group! You have found a bunch of knowledgeable people that are more than ready to talk and help you through this. So feel free to look around, check out the search function and note that we have a section established for co-infected members. It's just getting started so please ask questions or post any information that you feel helpful.

I'm glad to hear that you're getting started on your HCV treatment. The newest protocols are proving very effective. I'm going to include a link to some info on current treatments and outlooks on the co-infection issue. It's from the AASLD, so it's spot on. Forget about the success rates of Peg/Riba, these new treatments are way ahead of them.

Let us know how you're progressing and if you need any assistance at all, just put it out here and we'll do our best to help. Good luck...

http://www.hcvguidelines.org/full-report/unique-patient-populations-patients-hivhcv-coinfection

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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johnny


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my name is Johnny, and I live in Virginia beach. I have been co-infected for over 20 years. I started taking Harvoni on feb 13. I receive treatment from Hampton va med center .I have had same doctor for 14 years.she is very knowledgeable ,and has been on the front line with the latest treatment for Hiv/Hep c. I trust her with my life 100 %. I wanted to network with others in a similar situation. I have failed prior treatment 2x with peg and ribo.any feedback would be appreciated .

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John DeMarco
Tig


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Hello Roger,

I want to welcome you here as well! I'm happy that you were approved with such ease. Many are not that fortunate. You should do well.

I want to point out that there are multiple payment assistance programs available to help you cover your costs and copays. We had a member just this week recieve approval for $20,000.00 copay assistance for the Harvoni treatment through the PAN Foundation. As Four Locos mentioned, Gilead has a program called "Support Path". Call them now! They may save you thousands of copay dollars.

You can access that information via the red payment assistance link in my signature or using the following link:

http://hepcfriends.activeboard.com/t56904226/payment-assistance-programs/?page=1#comment-56904226

I'm glad you're here. Keep us informed! Good luck...

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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fourlocos


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30% copay can be quite expensive!  Please check out the support path at Gilead's website.  You might be able to get help with that.



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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!
RudiRoo


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Hi Roger,

I don't know much about Harvoni but I wanted to welcome you to the forum and tell you we are glad you are here. There are lots of knowledgable folks here who will do their best to help you learn what you need to know. I live in a small place too. It can be challenging, but with the help of people here, I just finished treatment and I feel sure you will too.

Welcome to the Harvoni train, next stop SVRville!

Be well

~ Rudi

 



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Hep C since 1982, GT IL28b CC, tx naive, VL 2.5M, normal liver panel, Hepascore F-0, A-1. Sjogren's, Hashimoto's, Raynaud's, etc. SOT S/O 12 wk tx on 10.28.14. EOT 1.19.15. HEP C FREE AT LAST! 4.29.15
Cinnamon Girl


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Hi Roger, welcome!

I`m glad you found us, many of our members are currently doing Harvoni treatment and we`re seeing mostly excellent results coming through.

If this is your first treatment for Hep C you`ll probably be doing a course of 12 weeks and possibly only 8 weeks if you currently have a low viral load of less than 6 million.  The dose is only one pill a day and you`re unlikely to experience many side effects if any. 

Here`s a link to the full prescribing information and if you have a read this will give you a lot of information...

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Feel free to ask questions, this is a very friendly group and I`m sure other people will be along to greet you soon.

Best of luck! 



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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.

 

 
clhndluke


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Hello All: I am new to this and I think my Doctor is too...I am from a small town (20000 pop) I was reading about Harvoni and told my new doctor about, he did not say much so on a return visit I brought it up again at which time he ask if I wanted to try for it, so I  had another biopsy and next thing I knew his office lady called me and said it was approved and my co-pay was 30%( my insurance company had approved it) I ask her for a meeting and she informed me a meeting was not needed, if I wanted the medicine pay the co-pay, anyway I have the financing taken care of..medicine next week, but I thought the Doc would talk to me before treatment started and tell me a little about what is going to happen, interactions, any do's and don'ts.. I am open for suggestions....Thx...   



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