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Post Info TOPIC: New here and needing advice


Guru

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RE: New here and needing advice
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Wonderful news Kristen, no more "in pursuit of", your treatment has finally arrived! You must be feeling excited, pleased, relieved and perhaps still a bit nervous? Don't be nervous though, you will see, it will all work out fine and you will finally be rid of this virus in short order. Instead of feeling nervous, get prepared, set up a bottle or container system (of your choosing), so you can easily count at a glance how much water/fluids you are consuming per day. Make sure you incorporate portable fluid containers (counted in your daily rations) for when you are out and about. WATER, don't leave home without it! A gal a day keeps the sides away! You may not experience any sides, such as headache, but these can be minimzed and even prevented by being REALLY well hydrated.

Good you had that ultrasound (and a fibro-scan?) and that your fibrosis assessments are showing up pretty good. Your doc got all your immunization up to date (the B re-immunization and whatever you might have needed)?

Lovely the co-pay thing worked out for you. Your doc must have been "on it", it has all worked out, I am so glad there will be no more delay for you. 

Congrats on your soon start! biggrin C.

When you have time, do try to work on creating a signature line.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Guru

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Hey Kristen,

Very similar in that I was grade 1 stage 1 also however tried and failed 2 old treatments and then waited years for Harvoni and was finally cured. Thank you God and Gilead! I took the pill in the morning, as did Jimmy K (5:55). As Tig mentioned, hydrate. Water is your friend. Had a few weeks where I may have had a headache or two but not severe and sometimes just needed more rest than others. For me I listened to my body. Took an extra rest day off the gym if needed. As I suffered from insomnia anyhow, I do not know if the meds affected that or not. I did not miss any work. Eat healthy, avoid processed foods and water water water! 

Welcome aboard!

wendy



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 

Tig


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Hi Kristen,

Wow! Things turned around pretty fast for you, that's terrific. Just so you know, your viral load doesn't impact much anymore. Used to determine a lot of things, but with these new drugs, the only difference it has is for people treating the first time, low fibrosis score and have a viral count below 5 million. They fall into an 8 week protocol vs 12. You'll respond well to treatment and dancing on the grave of your soon to be departed Dragon! Take that LIZARD!

Okay, we are very insistent here on instilling a good hydration routine in all of our friends here. By drinking a FULL GALLON of water per day, no excuses, you will avoid most side effects. Most common are fatigue, muscle aches and headache. Some people experience a little brain fogginess with any of these medications. You may not, but it's been mentioned a time or two. I call it a senior moment and leave it at that! Seriously, by simply drinking water, you will avoid most instances of them. I can't tell you that you're going to avoid some fatigue, many do, but you can minimize so much by following a good hydration protocol. Start now, before you begin your medication, get yourself hydrated. You're going to hear this from everyone here. We're serious, it makes all the difference in the world. 

When you take it is really up to you. Many take it later in the evening and sleep through any side effects (that don't happen) but you may feel a little weird for a couple of weeks, until you adjust to the medication. Some take it first thing in the morning and do just fine. What I do have to impress upon you is the absolute need to take it at the same time each day. That's very important! You should get a pill container to remind you that you have taken that pill. We recommend setting an alarm on your phone and a second alert to be sure you take it. Don't think you won't forget, we all managed to do that at least once. Prove me wrong.... Alarms are valuable, especially if you have one of those senior moments I spoke of, ha!! 

If you have any questions, don't hesitate to ask. If you can, please enter your genotype and whatever you can think of in your signature line. That way people can see your bio at a glance when replying to you. You can see some of the stuff I placed in mine, many others have as well. There are instructions in mine on how to set it up if you need them. Good luck and stay in touch. Let the slaying begin!!



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Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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Newbie

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Thank you Canuck and Tig for your responses.  My doc had me do a new viral load which was 6 million and he resubmitted and I was approved for Harvoni!  I had a fibrosis and ultrasound in the past year which also came back with very minor results.

They approved me for 12 weeks and I spoke to the pharmacist a little while ago and he is sending the first 30 days of meds on Monday and I will only have to make a $5 co-pay for each 30 day dose.

Honestly, I'm a little in shock at the moment to think that after 40+ years I might be rid of this.

New questions that come to mind are:

Any advice for best time of day to take the meds?

Anyone have side effects or advice on how to handle/avoid them?

Thank you for being there, it helped a lot.

 

 



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Guru

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Kristen,

Not knowing anything else about you, your health and your liver (and your labs, and any imagings or other tests you may have had done recently), just in general, (if it were me) as a GT1, I would be wanting Harvoni or even Epclusa.

If they keep denying you Harvoni, and your doc keeps fighting on your behalf, he maybe needs more arsenal. You say your 2 prior  biopsies are 10 and "a few years" old, so, your doc must be deducing your current levels of liver fibrosis and dysfunction right now mostly by blood test methods?. Perhaps a current abdominal  ultrasound would be helpful (if it helps to show/document any abnomalities), a fibro-scan may possibly (or may not) reveal a higher Fscore - more current re-assessments "might" help show (or even bump you up just a "little bit" on a scale of progressing severities, even profound fatigue when counted as a dysfunction may help, symptoms, and test results like that (fibroscan Fscores, an U/S and such) might gain him winning an appeal.

I would discuss this with him again (about adding more testing, like a fibro-scan and U/S to his arsenal, and also ask him what truly his number one (and #2, and then #3) ideal drug choice would be for you (in a perfect world). Harvoni, Epclusa or another? 

That's all I can think of. confuse C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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Hi Kristin,

Welcome! It really sounds like you've had just about enough of this run around. I don't blame you. What a strange twist with your former insurance company, it figures.

We have several additional links to information on generics, Greg and others HERE as well as the blue link in my signature There are options out there, keep turning over every rock til you get approval.

If your liver is in good shape at the moment, you may be able to delay treatment until you get this straightened out. The important thing is to never take no for an answer! You keep on them, many of us had to fight for treatment too. We prevailed and so will you!

Canuck addressed many issues and I recommend them as well. Take this time to get all the needed testing, strategizing and planning completed. Sometimes these approvals change overnight. Your doctor needs to appeal the decision and have a peer to peer consult with the insurance MD. Sometimes they aren't even MD's, just reviewers that approve it on demand. They're very sneaky sometimes. We have to outsmart them at their own game!



__________________

Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Guru

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Hi Kristine,

Welcome here. I am glad you are pursuing treatment, but sorry for the difficult and faltering access issues you are encountering though.

Firstly, you asked, ..." Am I better off just living with the HEPC that continues to be pretty asymptomatic? " ... , my answer would be, you are definitiely NOT better off living with HCV, even if "fairly' asymptomatic. You do need to be treated and I am glad you are pursuing it. You will get there, you are close, it will just take some more tweeking and a bit more info and work.

We will try to help as we can here.

Regarding you B immunity status, this is and should all be part and parcel of your assessments leading up to and occuring before your HCV treatment start, i can see your doc has already (recently I hope) reviewed your most current hep B immunity status and deduced (as you say) that you have no (or insufficient immunity to B). In that case, you should be re-immunized for B. As well, if your immunity for A was also found to be deficient, that too may (or may not) need to be given. You need to ask the hep doctor if your immunity levels to both hep A & B are too low, and have him order immunization for you (according to your deficiencies), or have him at least tell you what immunization/re-immunization you require, if he expects you to arrange your own immunization, like at a Public Health Facilty or via your family doctor. 

You sound like you had a case of hep B in the past, and that you "resolved" it all on your own, which may have left you with some naturally acquired immunity, but, if you were given hep A/B immunization 10 + years ago, it could have been because you might not have possesed enough natural immunity then. The magic number (the minimum) they consider the arbitrary ideal, is to possess a B immunity titre of 10, or over (>10). This is what the B immunity level blood test will reveal - it will show if your B titre is below this ideal of 10, or how much over it is. Some people do not achieve "high" levels of immunity in a response to the standard A/B immunization series, most do, and some people find (if their immunity levels were ever checked again by blood test) their immunity levels can decrease (wane) over time. Generally, it has been seen that A immunzations take and hold better, or more readily, than B immunizations.  When in doubt, they say it is "saf-er" to overimmunize a person, unecessarily, than to be under-immunized for A or B. When you have HCV, and/or, are about to be treated for HCV, docs should strive to ensure they know what deficiencies to A and B you have (by testing for same), and, to make sure they bring your A and B immunity levels up to the minmum. They do not do this routinely, but on occasion, they may actually opt to double-dose you with double-strength B immunzations 3 times, as a series, as opposed to the standard regular dose 3 times in the series. I have never heard of anyone being double-dosed to A in a series.You should also inquire of your hep doc about whether you need flu and pneumoccal shots

If your hep doc wants your B immunity increased via immunizations, then you should (at minimum) start the B series of re-immunzations (as he directs) prior to the start of your HCV treatment. I started my HCV treatment while still undergoing and completing my series for A and B. It did not delay my start to HCV treatment.

If he prescribes the standard triple series shots of hep A and B (or other immunizations), you should get started on this as soon as possible. It is good protection for people who already have a hep c infection, as we do not want any other kind of hep infection to happen to us, on top of what we already have, same stands for being protected from flu or pnuemonia, we don't need any of those either, if it is thought we need to be protected from them by immunizations.

No - (to answer your other question), just because your hep b titre may need to be brought up to a higher level, does not mean you will have B reactivation.

You should not have to avail yourself on having to deal with out-of-country Harvoni procurement, I would keep striving to get Harvoni here, I think you are close now - I am counting on some of the others here to help guide you better than I could in the procurement of Harvoni with these co-pay and support path coupon systems, I am not very well versed in them. I want to see you get your Harvoni for $5.00 per month!

Do you happen to know what your "sub-type" is, are you a GT1a or a GT1b?, and do you know what your VL count is? You mentioned a prior biopsy and F1, but have you had a recent "fibro-scan", and have you had a recent abdominal ultrasound (U/S)?

Others will be along shortly to try to add answers to your questions. Glad you are here. smile C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Newbie

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Hi everyone, I have Hep C GT 1 which I likely contracted in 1970 or so but was diagnosed in 2000.  I opted not to treat at that time since my liver tests were only slightly abnormal and a biopsy showed grade 1 stage 1. I decided to wait for an option with less side effects and continued to monitor through liver function tests and another biopsy in a few years ago which had no change. I applied a year ago for Harvoni and was denied by my insurance company since I was not ill enough to meet their criteria. I had the lowest level of fibrosis also.

I then changed insurance and re-applied, this time for Zepatier. Frustratingly, my doc applied accidently to my old insurance which then approved me! Obviously, I could not get it from them since the application was made after my insurance had changed. I thought that approval boded well for my new insurance company to approve. You guessed it, they denied me and when my doc reapplied for Harvoni from the new company they refused that as well. My script was for 12 weeks.

I talked to Gilead support path today and they said they approved me for the coupon co-pay for a $5 fill fee, but my understanding is that is only for the first month and that it covers $23,625.00 when the med cost is $32k per month. That leaves me paying $9k a month? Or more, since they said I could reapply for the 2d month for the same coupon but only could have 2 in a lifetime thus leaving me on the hook for $32k for the last month as well as $18k for the parts of month 1 and 2 that are uncovered?  I would really appreciate any info. folks have on this.

Also, I had Hep B I believe in high school, then my doc about 10 years ago had me do the three shot immunization and then my doc just this month said my bloodwork showed no immunity to Hep B. Does this mean that I should be concerned with reactivation of the B when taking Harvoni? Am I better off just living with the HEPC that continues to be pretty asymptomatic?

One last question, does anyone know about the guy in Tasmania, Greg Jeffries, who helps people get the generic form of Harvoni from India? The cost is $1000 for the entire 12 weeks, is this worth my consideration?

Thanks in advance for any input you might have.

 

 



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