Author Topic: Starting Harvoni!! (Read 375595 times)

scorpio · « **on:** December 01, 2014, 04:08:49 pm »

Hey everyone.. new to the site and been reading for last couple days.. what brought me here was a recent approval for 12 weeks of harvoni..

Breif history; Geno 1a for about ten years from drug use.. been clean now for 16 months.. i never worried to much about it so never really followed up with biopsy, blood tests etc. that is, until i got clean.. the first year of sobriety i was getting a lot of random symtoms that i had never felt and would come and go but consitently get worse... i do construction for a living so the biggest noticeable one was fatigue.. i would get home and just want to pass out.. i was moody all the time.. had random pain in muscles and random arthritis..

i finally decided to get blood tests and biopsy done..my liver values would stay at 1-200..biopsy showed f2 and rediculously high vl...10,000,000..in my followup in nov., my doc was phsyched to tell me about this new medication called harvoni..i had already read about it and kind of figured he was going to suggest it so i was pumped...

my insurance took about a week to approve me for 12 weeks and meds got to doorstep two days later..thank god...i was expecting to go to war with blue cross lol...im out of state visiting younger bro who recently went through bad case of myocarditis (20 year old) that flatlined him a couple times and destroyed his heart to the point where it wouldnt pump on its own..recovering now with an artificial pump in chest..

but anyway i go back to boston tomorow and will have the meds waiting for me when i get there..excited and nervous at the same time and i will be checking in periodically.. thank u all for this forum and for sharing your stories.. ps..my doc doesnt want to see me till 6 weeks for blood work and i had to suggest it...he seemed 100percent confident the meds would kill this virus. should i suggest more frequent lab works??? thank u

lporterrn · « **Reply #1 on:** December 02, 2014, 12:05:34 am »

Wow, you were lucky to get the meds with relative ease. You could ask for more frequent labs, but really, not sure it is clinically necessary. assuming you are "all in" regardless of what the labs show.

scorpio · « **Reply #2 on:** December 02, 2014, 12:57:05 am »

I was shocked at how quick and painless it was lucinda.. My insurance is good through my union but because it is blue cross, i was expecting some kind of speedbumps... In which case my girlfriend would step in to deal with them as she does it every day at work..

The only thing im concerned about is my high viral load..Ive had it about no less than 7 years no more than 9 years and my vl is higher than anyone i know that is infected.. I would like to think that monitoring blood work would make sense so that if not undetected by say week twelve i could fight for prolonged treatment..

I guess im a little worried about how quickly it progressed in me.. When i found out at a rehab in palm springs, my alt and ast were around 1500 a peice.. Yet my cousin whos had it longer, and that i caught it from, who has never stopped using, has his values checked and always in normal range.. (sigh) luck of the draw i guess...Or on a positive note, maybe it was the sky high vl that got me approved so quick.. either way ill take it.

BattleTheBeast · « **Reply #3 on:** December 02, 2014, 07:14:27 am »

Welcome Scorpio,

Sounds like you are on the road to the cure, that's great news! So glad you were able to get the medication so painlessly.

Let us know how you are doing!

~Mel~

scorpio · « **Reply #4 on:** December 03, 2014, 10:41:14 pm »

Thank you mel.. I just flew back from fl. to bostons cruddy weather last night and had first bottle waiting.. Horse pills!! Took my first dose today around noon time and made sure to always have a water bottle in hand.. I experienced mild lack of appetite, and an average headache.. Tried to go without the tylenol but cracked at around 7 and took 250mg.. Headache gone, ate a little and feel fine..

I was lucky to take a layoff from my work for the winter so i could focus on this treatment and my health.. Now, to get my healthy eating back in order and get my butt back to the gym, i know i will brease through this.... I spelt breeze wrong lol..Oh well,there just words.. They dont own us

BattleTheBeast · « **Reply #5 on:** December 06, 2014, 05:49:56 am »

Wow, so awesome you can financially afford to take the break. I'm tempted to go out on leave almost every day and just push myself through another one. Sometimes I am really not sure how smart that is but can't help it. Get to a certain age and we worry about finding that next job or losing the one we have. It's sad but true

Take care of you and listen to your body, water, food rest, etc.

We are going to beat this beast!!

~Mel~

gea · « **Reply #6 on:** December 06, 2014, 07:15:41 am »

Scorpio
I also had "sky high" liver enzymes, it's how I was first diagnosed. However, my viral load is very low. My Doctor owes the high enzymes to an anti-inflammatory that I was taking. They lasted about six months, dropped gradually during that time, and have been normal for the last year. 1A and day 20 of Harvoni.

Marijayne · « **Reply #7 on:** December 06, 2014, 09:30:30 am »

Hi to All !!
My 1st post here..Hopefully many more to come.
Thank you all for being here. Trying to read and catch up on all the wonderful posts and info-

I am currently waiting on Pre-Approval through Medicare/Humana for Harvoni.
It's been awesome reading everyone's experiences..it sounds very hopeful.
I'm so tired of feeling the way I do...Hep C is not silent that's for sure.
Previous treatments were a nightmare as so many of you know. Left me worse then before I started, in my opinion. <sigh>
Is there any info on anything beyond 3 months after treatment??

Diagnosed 1990
Hep C 1a -
Non responder 3x
VL- 9.5 mil
Fibrospect 2 index 47 F2-F4

Islandgirl · « **Reply #8 on:** December 06, 2014, 02:13:54 pm »

Hi everyone!
Reading your posts is is becoming an invaluable part of daily life. Thanks so very much!!

I wrote once before when just starting the insurance approval process and am now on my 4th day of Harvoni! I had a blood transfusion in 2001 which seems to be how I contracted HCV, although I wasn't aware of it until I donated blood to the Red Cross in 1994 and they sent me a very nice letter that left me in denial for a very long time. After finally realizing I couldn't continue that way I started working with my doc to monitor my labs, etc. I'm 1b and through research realized that available treatments at the time weren't worth putting myself through it. At long last my doc and I agree the new meds are definitely in my treatment plan and when I got approval, I confess that I broke down and cried. Side effects or none, I will make it through the 3 months of treatment no matter what!! So far I've had a bit of nausea, minor headaches, and sleepiness - whether or not it's really from the Harvoni, I'm not really sure, but it's OK.

MarijayneI think we have the same insurance) Humana Medicare PPO - I was approved much faster than expected based on everything I've read here, however the co-pay nearly gave me heart failure when I heard it. I was in the coverage gap stage and it would be $3,549.78, reverting to something over a thousand after the first of the year for 28 pills! Fortunately, the Specialty Pharmacy my doc works with (TLC) got help for me with the co-pay in the form of a grant that should see me through the treatment, and if not, they will help me find other assistance. God was definitely in my corner through this! I wish you, and everyone, good luck in obtaining and continuing assistance to afford this wonderful drug (read CURE). The person I spoke to at TLC said there is co-pay help out there - you just have to look for it, and find one you can qualify for. More happy tears? Yes!

Marijayne · « **Reply #9 on:** December 06, 2014, 03:23:19 pm »

Islandgirl-
I'm so happy you were approved so fast and are on your way!!!
Happy tears are a good thing!
I thought I had a week in on waiting to hear from Humana just to find out Pharmacist sent a fax to my Dr to a wrong fax number. I decided to call on Fri to see if they heard anything..guess it was a good thing I did. I use to keep up on stuff to make sure it was done, but anymore my mental energy is drained. ughh -
I'm so glad there is assistance out there for copay's like you mentioned. Hope my process goes smoothly.
Thanks ..♥

Islandgirl · « **Reply #10 on:** December 06, 2014, 03:52:15 pm »

Oops! Should have previewed my post! I said my blood transfusion was in 2001 - it was 1976Talk about fuzzy brain

Sorry, everyone.

Marijayne, you are so correct - we have to keep up on stuff ourselves and for all of us this is a major priority. It wasn't quite as easy as it may have sounded, I made so many phone calls I expect they were sick of hearing from me! Sending you (and everyone) good wishes and lots of positive energy. Focusing on healing and positive outcomes for us all! Islandgirl

scorpio · « **Reply #11 on:** December 06, 2014, 07:41:13 pm »

Darn right we gonna beat this mel.. The only reason i am financially able to take layoff is that im currently living in a sober house.. Very cheap rent and its helped me stay clean and sober for almost 17 months.. I used for many years and put myself through hell.. So getting clean was like starting from scratch.. $0.00...

As far as treatment.. Day 4 and feeling good.. Since the mild sides on the first day, im happy to say i havnt had any since then.. I also drink between 5- 8 20 oz waters daily.. I think that is key for anyone on harvoni.. Make sure ur pee is clear..

Sidenote.. Someone yell at me please.. i ordered pizza again...!!!!

Islandgirl · « **Reply #12 on:** December 06, 2014, 08:01:09 pm »

I'm sure not gonna yell at you, Scorpio! Sounds like you're doing great!!!! Besides, I love pizza too:) ...Islandgirl

John3333 · « **Reply #13 on:** December 06, 2014, 08:49:18 pm »

@islandgirl. I go to the doctor next Friday to get my Harvoni. I will probably start Saturday AM. I too had an easy time getting it, when the letter came from CVS Caremark I was shocked to find it was an approval letter. I have Highmark BCBS PPO. Anyway, it bums me out that not everyone is having as easy a time getting the meds. It's good to read posts from people who are just starting out ahead of me. I will be doing 12 weeks as i did tx hell with rib/int back in 2002 to no avail.

@scorpio I see you are in Boston, I grew up on the North Shore, (Lynn) although I have been in PA since 1995, Boston will always be home to me. Get to the gym it will help you just as much mentally as well as physically. Good Luck!

amy1662 · « **Reply #14 on:** December 06, 2014, 08:56:14 pm »

Hello Scorpio, Congratulation on starting Harvoni. I am on day six and was approved pretty quick also. I thought I was going to have to fight for the Harvoni because I was denied for a prior treatment. I have been lucky so far no side affects. I hear everyone saying they are drinking lots of water with this treatment. Is this something we are suppose to do? I normally drink a lot of water anyway but it would be nice to know if its a must with this treatment. I want to wish you and everyone else the best of luck, we are all going to beat this.

Islandgirl · « **Reply #15 on:** December 06, 2014, 09:31:59 pm »

Amy, re water - I asked the Harvoni support path RN about this and she said it's not mentioned as a requirement and that there is no reason that the drug should cause your mouth to be dry, but it's probably a good thing to do to help flush the virus out of your system. She also said what many have said here too - listen to your body, rest when you feel tired, be patient with yourself and remember that there is one heck of a battle going on inside you that the Harvoni is helping you to fight. So let's flush that virus right out and win the battle!

PS, The first couple of nights I felt really dry, of course, I could have been sleeping on my back and snoring... LOL ...Islandgirl

John I'm happy for you and will be looking forward to hearing how you are doing. I agree, it's nice to read posts from others who are in close to the same treatment schedule and know what they are experiencing. I'm so grateful to have the med and to share the experience with all of you. Orange is my new favorite color:)

scorpio · « **Reply #16 on:** December 07, 2014, 01:03:33 am »

Islndgirl- Unfortuneately, take-out has been a mainstay in my diet since moving into sober living.. Bad habit but then again people are slobs here so the thought of cooking here doesnt sit well.. Could be worse i guess..congrats to you for getting approved and i hope u touch base often and tell us about ur journey.

@John congrats on ur meds bro... I tried moving away years ago but i only lasted 2 years in florida.. I guess if u grew up in new england, its wicked hard to stay away to long lol.. City of sin...Another bostonian...Welcome John

Amy- 2 days ahead of me girl..congrats to you.. Im glad to hear most people are getting there meds and killing this virus.. As far as the water, i was told by my rn that headaches are a side effect and by drinkin lots of water will help if u get em.. I agree with her..Im sure the meds will prbably work the same either way but i noticed when im continuously sippin water all day, i feel better physically and have a lil more energy..

Just my 2cents

BattleTheBeast · « **Reply #17 on:** December 07, 2014, 06:10:18 am »

Quote from: scorpio on December 06, 2014, 07:41:13 pm

Darn right we gonna beat this mel.. The only reason i am financially able to take layoff is that im currently living in a sober house.. Very cheap rent and its helped me stay clean and sober for almost 17 months.. I used for many years and put myself through hell.. So getting clean was like starting from scratch.. $0.00...

As far as treatment.. Day 4 and feeling good.. Since the mild sides on the first day, im happy to say i havnt had any since then.. I also drink between 5- 8 20 oz waters daily.. I think that is key for anyone on harvoni.. Make sure ur pee is clear..

Sidenote.. Someone yell at me please.. i ordered pizza again...!!!!

Scorpio,

So glad you found what it takes to keep yourself sober!! Whatever it takes!

Pizza?? Ok I know it's got some of the major food groups in it but you need to work on your diet especially while fighting the beast. If there's a Whole Foods close by they have a ton of really great healthy prepared foods you could go grab and just heat and eat!! At least you are thinking about it!

I won't yell but I sure do want you to beat this and have many many years of good health in front of you. It's not fun getting to your mid fifties and falling apart. Kinda sucks actually!

~Mel~

Texasdave · « **Reply #18 on:** December 08, 2014, 12:49:31 pm »

I'm new to this forum so this will be my first post. Got hep c apparently after getting stabbed and requiring transfusion back in 1980. Diagnosed a little over a year ago. Fast forward to today. Saw my GI about three weeks ago and found out I am type 1a, VL over 10MM. I see some of the folks on this forum have been in treatment, etc. for drug issues. I too was heavily addicted to pain killers, but finally got to treatment/ rehab last December. Been clean and sober for the last year and doing well. When I saw my doc he was very excited about Harvoni so of course that's what he wanted to put me on. I had done a ton of research on it so I was very excited as well. Well, today I got a call from the nurse at my GI office saying that I had been approved through BCBS which I have through my wife's company. I was surprised and elated as you can well imagine. I'm not counting my chickens yet, as she said that I should be hearing from CVS/Caremark today regarding details, co-pay, etc. Not sure how the doc's people got it approved but am just happy to get the news. I really appreciate all the words of wisdom on this forum, and will be happy to share updates as things progress. Thanks you all for being willing to share your experience and hope.

lporterrn · « **Reply #19 on:** December 08, 2014, 12:55:45 pm »

WhooHoo TexasDave - I hope you will be counting chickens soon!

ma snart · « **Reply #20 on:** December 08, 2014, 01:08:09 pm »

Texas Dave
Just make sure to register with Gilead support path, they can help you with co-pays to maybe just 5.00 per month.
It worked well for us.
Snart

Islandgirl · « **Reply #21 on:** December 08, 2014, 01:12:24 pm »

Congrats and welcome, Texasdave! I'm on day 6 and find the posts and the people supportive and invaluable - it's so comforting to know we're not alone. Keep us posted - I hope you'll soon be getting your first bottle of those magic orange pills

.... Islandgirl

BattleTheBeast · « **Reply #22 on:** December 08, 2014, 01:36:03 pm »

TexasDave,

Welcome and looking forward to having you count those chickens! Hope your treatment goes smoothly and you are UD very soon. Remember just getting the treatment gives your liver a break from the virus!

Mel

John3333 · « **Reply #23 on:** December 08, 2014, 07:46:18 pm »

Congrats TexasDave!! I also have BCBS with CVS Caremark. I go to the doctor Friday to get the meds. I am ready to get going and rid myself of this virus.

@Scorpio and Islandgirl: How are you guys feeling? I am curious as to whether you guys have gained or lost weight, or have had appetite problems since starting Harvoni (Scorpio is ordering pizza, so probably not

Exercise is a big part of my life, I like to run. Do you guys think I will be able to continue with a fitness program while taking the Harvoni?? Just curious.

I am glad more people are getting this great medication now, and just think, within a few years we will be on our way to totally eradicating this awful disease.

Islandgirl · « **Reply #24 on:** December 08, 2014, 08:52:21 pm »

Hi guys - John3333, I'm actually feeling pretty good and have had only minor appetite issues that I'm not even sure are connected . No weight gain or loss, but I've only been on Harvoni 6 days. I take it at 6P and sleep really well and pretty normal appetite. The first day had just a tiny bit of nausea so ate something and it disappeared. I eat pretty healthy most of the time and try to remember to listen to my body.

I'm getting ready to start working out again (took a break after hurting my ankle), I'm not a runner but try to walk most days. I bet if you were feeling like running before, you'll be OK now too. I wouldn't be doing any just "pushing through", just adjust if your body lets you know you're working it too hard. Don't forget you gotta give it what it needs to battle this beast:) Hope we will have few side effects but regardless, it's worth it to finally have a chance to be cured! ...Islandgirl

BattleTheBeast · « **Reply #25 on:** December 08, 2014, 09:21:50 pm »

I started Harvoni on Saturday after 8 weeks of Sovaldi and Olysio and for me the Harvoni has been easier so far. I can tell you I don't have much of an appetite since switching but that could be getting off the Olysio which I had a really tough time with.

It's all good and before we know it we will be cured!

Mel~

Islandgirl · « **Reply #26 on:** December 08, 2014, 10:01:15 pm »

Mel, like you, I would have been on a much harder path starting out - Sovaldi, RibaPak dose pack tabs daily and Pegasys ProClink subcutaneous injector pen once a week - the request was put in in September and the insurance company kept delaying and asking for more tests, which turned out to be a blessing in disguise. When nothing had finalized, and then Harvoni was approved, I asked my doc to change me to Harvoni.

I'm so thankful things worked out the way they did! As you said, it's all good, and before we know it we will be cured!!! Yea us, all of us

...Islandgirl PS, you are a great support to everyone and I appreciate your comments Thanks!

gea · « **Reply #27 on:** December 09, 2014, 06:14:50 pm »

@ John3333
I am an avid bike rider.... about 15 miles a day during the week and up to 30 miles each day on the weekend. I also like to jog, when my knees allow it, and that is something I was beginning to have trouble with over the last months, before starting Harvoni. Inflammation of my liver was really giving me discomfort... But, day 23 for me on Harvoni, and if anything, I am MORE able to get my work outs accomplished! I don't think you will have any trouble with exercise. Fingers crossed for you!

John3333 · « **Reply #28 on:** December 09, 2014, 08:03:51 pm »

Thanks for all the feedback guys! I am excited and a little anxious as well. Ready to get rolling, Saturday can't get here quick enough. Mel, so glad you got the Harvoni, this is going to do the trick for you! Your posts are greatly appreciated. I was also worried about being irritable, I remember being on the int/rib, it was bad. I have a 6 y/o and 4 y/o, so I was a concerned about it. The feedback I am getting is pretty positive with regards to that.

Islandgirl and gea, keep me posted and thanks for the information. I remember doing the int/rib back in 2002, couldn't do anything. I remember I was telling the doctor I was getting very fatigued when I ran, and he about had a heart attack, yelled at me that I can't be running because of lack of oxygen in the blood from the poison he had me on, LOL. After 48 weeks of that, I think I could endure anything for 12. Islandgirl, get out there girl! There is benefit even to a little bit of walking, mentally as well as physically.

gea, like you I am getting ready to turn the page to the bike. My body is starting to wear out, knees, and more recently, an achilles issue that's driving me nuts. I enjoy being outside, and it's become my outlet to decompress.

Take care guys. Keep the faith.

KathyNJ · « **Reply #29 on:** December 09, 2014, 08:58:22 pm »

Just got early Christmas present--I am approved for Harvoni and meds will be delivered tomorrow by UPS. Learned more from reading all your posts than from the doctor. I plan to take the meds in the evening so that I can sleep if fatigue hits. I got hep c from blood transfusions in 1965 after being in very serious car accident. So I have had hep c for 49 years. Liver enzymes are slightly elevated and no liver scarring, but I am anemic. This results from the virus being in my system for so long, that my red blood cells do not replicate like a healthy person. Also, have protein in the urine (protenuria) due to hep c damaging the kidney filters. Kidney function is OK. Tried interferon treatment 3 times and relapsed after each treatment. Praying this is the cure! Nothing could be as bad as Interferon! Thanks to all of you for posting such great and informative info that only the user experiences. Good luck to all of you! Will post again after I start the Harvoni.

badbradley · « **Reply #30 on:** December 09, 2014, 09:27:00 pm »

KathyNJ - Welcome aboard the CURE train,
I can relate to learning more here than from Doc, as with most of us. So Santa's coming early for you this year! What a great Christmas present. It doesn't get any better than that - at this point. Hope you have an easy ride!
Let us know how it goes. Brad

KathyNJ · « **Reply #31 on:** December 09, 2014, 11:43:18 pm »

Thank you! I will look to my fellow Harvoni's for advice as I wind my way through this path to health. I am sure I will have a million questions and need of encouragement along the way. Thank you for caring. Only fellow sufferers seem to understand.

scorpio · « **Reply #32 on:** December 09, 2014, 11:45:51 pm »

Quote from: John3333 on December 08, 2014, 07:46:18 pm

Congrats TexasDave!! I also have BCBS with CVS Caremark. I go to the doctor Friday to get the meds. I am ready to get going and rid myself of this virus.

@Scorpio and Islandgirl: How are you guys feeling? I am curious as to whether you guys have gained or lost weight, or have had appetite problems since starting Harvoni (Scorpio is ordering pizza, so probably not

Exercise is a big part of my life, I like to run. Do you guys think I will be able to continue with a fitness program while taking the Harvoni?? Just curious.

I am glad more people are getting this great medication now, and just think, within a few years we will be on our way to totally eradicating this awful disease.

scorpio · « **Reply #33 on:** December 10, 2014, 01:23:35 am »

@John-- Yes the meds did mess w/my appetite the first couple days.. I think i ate one meal and a few snacks the first and second day which is not like me because i lik my food.. My appetite is 100% back to normal and the only side effect i have after 7th day would be mild fatique that comes and goes.. My sleep schedule has been a lil out of whack also but cant directly link it to harvoni because im layed off and been sleepin in and taking occasional naps

Islandgirl · « **Reply #34 on:** December 10, 2014, 06:52:29 am »

Catching up before an early dental appointment (ugh).

Welcome KathyNJ! A very Merry Christmas and new life to you and us all

Like you, this virus has been in my body for many years - long before it could be identified; and past time for it to be kicked out. Thank God for Harvoni and the support of everyone here!

Thanks for the exercise encouragement, John, I know you are right - and my dog would appreciate a walk too:) Scorpio, yesterday was my 7th day and my experience is about the same as yours, however, I woke up way too early today feeling a bit nauseous. I'm not sure if ti's the med or not. No big deal though - could just be the thought of going to the dentist LOL Regardless, I'm on the CURE TRAIN (love that, Brad) and that makes it a happy day! ....Islandgirl

Texasdave · « **Reply #35 on:** December 10, 2014, 08:21:48 am »

Hi gea: I too am an avid cyclist...20 miles on most days and ride with a great group on Saturdays (40-50 miles). Have you had any problems being able to keep up you riding ? I'll be watching your progress closely, as I should be starting my Harvoni adventure this Friday or next Monday. I am so thankful for everyone on this forum. My wife and I are in the process of separating so I'm kind of alone in this battle. I need to see that I'm really not alone and have all the great folks here to be with. Be sure and let us know details of your journey and stay on that bike !!

BattleTheBeast · « **Reply #36 on:** December 10, 2014, 08:32:26 am »

Quote from: Texasdave on December 10, 2014, 08:21:48 am

Hi gea: I too am an avid cyclist...20 miles on most days and ride with a great group on Saturdays (40-50 miles). Have you had any problems being able to keep up you riding ? I'll be watching your progress closely, as I should be starting my Harvoni adventure this Friday or next Monday. I am so thankful for everyone on this forum. My wife and I are in the process of separating so I'm kind of alone in this battle. I need to see that I'm really not alone and have all the great folks here to be with. Be sure and let us know details of your journey and stay on that bike !!

Hi TexasDave and KathyNj,

Welcome to the forum and this amazing community I found as well. It's been my savior over the past 2 months with all the shared knowledge and support.

You won't be alone in your journey, we are all a PM or a post away!

Hoping this is our last holiday battling this infection!

Mel

Tutu · « **Reply #37 on:** December 10, 2014, 09:32:07 am »

Quote from: scorpio on December 01, 2014, 04:08:49 pm

Hey everyone.. new to the site and been reading for last couple days.. what brought me here was a recent approval for 12 weeks of harvoni..

Breif history; Geno 1a for about ten years from drug use.. been clean now for 16 months.. i never worried to much about it so never really followed up with biopsy, blood tests etc. that is, until i got clean.. the first year of sobriety i was getting a lot of random symtoms that i had never felt and would come and go but consitently get worse... i do construction for a living so the biggest noticeable one was fatigue.. i would get home and just want to pass out.. i was moody all the time.. had random pain in muscles and random arthritis..

i finally decided to get blood tests and biopsy done..my liver values would stay at 1-200..biopsy showed f2 and rediculously high vl...10,000,000..in my followup in nov., my doc was phsyched to tell me about this new medication called harvoni..i had already read about it and kind of figured he was going to suggest it so i was pumped...

my insurance took about a week to approve me for 12 weeks and meds got to doorstep two days later..thank god...i was expecting to go to war with blue cross lol...im out of state visiting younger bro who recently went through bad case of myocarditis (20 year old) that flatlined him a couple times and destroyed his heart to the point where it wouldnt pump on its own..recovering now with an artificial pump in chest..

but anyway i go back to boston tomorow and will have the meds waiting for me when i get there..excited and nervous at the same time and i will be checking in periodically.. thank u all for this forum and for sharing your stories.. ps..my doc doesnt want to see me till 6 weeks for blood work and i had to suggest it...he seemed 100percent confident the meds would kill this virus. should i suggest more frequent lab works??? thank u

Tutu · « **Reply #38 on:** December 10, 2014, 09:54:18 am »

I too am starting Harvoni. I was diagnosed in 2005 and got it from a blood transfusion from surgery in 1990. All my levels were good and biopsies were good until this year. My Dr tried to get approval for S/O but insurance denied it , so he sent in for Harvoni and was approved. My questions are what can I expect? Should I take it in the am or pm? Side effects? I am so excitited about this because I have felt crummy for so long I dont think I remember what feeling good feels like. I am at an F3/4 per recent biopsy with an AST -56 and ALt -82 AlphaFeto is 9 and VL is 252111 Are these ok numbers?

Proudgmma · « **Reply #39 on:** December 10, 2014, 10:37:47 am »

Hello to my fellow heppers. I am new to this site but have been reading posts for a few days while I have been waiting to be approved by my insurance for 8 weeks of treatment. I was notified yesterday that the specialty pharmacy will be shipping Harvoni to me in a couple days.

It took about 3 days to get approved. I am a GT 1a; Fibrosis F1; VL 1.4M; don't know how or when I got infected; have United Healthcare with Caremark pharmacy.

When they told me I was approved you could have knocked me over with a feather. I feel so incredibly blessed that a cure came during my lifetime. Especially when this virus was starting to hit hard for us baby boomers.

This is the best Christmas present I could ask for.

Blessings and praying for those of you still waiting for approval.

bunakia · « **Reply #40 on:** December 10, 2014, 01:44:28 pm »

Hi all,
I am also on Harvoni now at day 10. Have type 1a with some cirrhosis. Seen on MRI refused biopsy. I have had Hep C for at least 2 decades most likely over 3 decades. Never been treated was waiting for a better treatment and now I am glad I am still alive to see this new drug.

I am very chemically sensitive and surprised I am doing well. My side effects are thirst and frequent urination along with the need for pro-biotic pills daily to keep stomach working really well. Also increased hunger. I am more tired on week 2 than week 1. Was very energetic on week 1. Strange for me. I no longer work so it is easier for me to do this.

No insurance problems so far just do not know cost out of pocket as it is major medical not my prescription plan coverage so they will send me a bill.

Love that people are here and I can see how you all are doing and the side effects that may not be listed on the insert.

Ollie · « **Reply #41 on:** December 10, 2014, 01:53:10 pm »

New to the Forum and on Day 4 of Harvoni. 61 yr old female, Genotype 1a Stage/Grade 1. Infected in the 80's. Somehow my Insurance was a breeze. I also used the Gilead Support Path $5 co-pay. I am very thankful as my daughter is also starting the program and has received the meds easily as well. I was freaking out about the cost of the meds as we are self employed and have Humana with a huge deductable! But all is well so far. NO SIDE EFFECTS yet except dry mouth and a general awareness that something is in my system. Feels like a strong antibiotic. That's all. Fingers crossed it's this easy. i will post regularly as I find this forum so helpful and I want to help others! Don't give up trying to get approved. It can be done and we can all be done with this!

gea · « **Reply #42 on:** December 10, 2014, 07:19:00 pm »

Hi Texas Dave!
Another biker! Wonderful ! Love the Rails to Trails and have covered most in my tri-state area! Love to travel to experience a new trail ! I started Harvoni on 11-17 and the first three weeks were awesome! A couple little glitches that I really didn't notice until I read it on here from someone else! ( runny nose, WTH? ) A little bit agitated more so than normal, I think... and another weird one... my stomach growls like a bear after meals..... ? But so far, no sleeplessness, no headaches, no nausea. YEA ! As for working out, it's been awesome! Over the last year especially, after a good ride or jog, my right side felt like someone punched me! Kept checking with my Doctor and he kept saying do what you can... so I kept at it. Almost immediately, within the first few days of Harvoni in my life, I noticed I didn't have that "stuffed" feeling in my abdomen. And the best part is the discomfort on exercise has eased up a LOT ! Much more energy too ! I still get a dull pain in my mid right back in the evening, but nothing I can't live with. My days are sunny, my bike riding is fun again, and I can't WAIT for you, and all here to experience the same!

John3333 · « **Reply #43 on:** December 10, 2014, 10:12:12 pm »

Wow, good to see all the people posting. Welcome Ollie, bunakia, Tutu, Proudgmma.

This is an exciting time with the new medication. I am so happy to see everyone pretty much being able to stick to their routines while on the meds. After completing the hell tx rib/int in 2002 without getting rid of the virus, I just moved on with my life, never really dwelled on having the disease. I just figured if I didn't drink and tried to take care of myself, it would all work out. Reading all the posts gives me hope, and it also makes me realize that there are people far worse off than me, so I try to remember how lucky I am. Even though I am 50 I have a 4 y/o and 6 y/o, so with the new meds, hopefully I will be around to watch them grow up. I am having a so much fun, they keep me busy!

gea, I too have rails to trails close to my house, it's my favorite place to get away and forget about the world for an hour or so. To me, exercise is the elixir for my mental health. If I start to miss days I get a little crazy in the head.

Scorpio, you have it going on up there in bean town buddy, eating pizza and napping, LOL, I am happy for you being able to take some time off while going through the treatment. I have time "on the books" in case it gets a little rough for me, hopefully that won't be the case though.

Islandgirl, get out there and go for it!! Your dog will love you even more.

I am so happy for everyone as it sounds like everything is going well so far.

John3333 · « **Reply #44 on:** December 10, 2014, 10:19:45 pm »

Quote from: Tutu on December 10, 2014, 09:54:18 am

I too am starting Harvoni. I was diagnosed in 2005 and got it from a blood transfusion from surgery in 1990. All my levels were good and biopsies were good until this year. My Dr tried to get approval for S/O but insurance denied it , so he sent in for Harvoni and was approved. My questions are what can I expect? Should I take it in the am or pm? Side effects? I am so excitited about this because I have felt crummy for so long I dont think I remember what feeling good feels like. I am at an F3/4 per recent biopsy with an AST -56 and ALt -82 AlphaFeto is 9 and VL is 252111 Are these ok numbers?

Hi Tutu, I go to the doctor on Friday, probably going to take my first pill this coming Saturday AM. I also wondered which would be better, taking he pill in the AM or PM. With my routine and with feedback from people posting, I decided that morning would be best for me. As far as your numbers, here is what i think, at this point it really doesn't matter, you are going to take the Harvoni and be cured, so don't dwell on them! Stay positive and good luck!

Texasdave · « **Reply #45 on:** December 11, 2014, 08:00:35 am »

Hey John,
Great to hear that you will be starting on the journey to get rid of this monster before too long. Mine should arrive at the dr. Office today, so I hope to be able to start tomorrow or may have to wait until Monday since I'm traveling for work. Glad to hear you are a "excersisor" (is that a word?), and especially that you are a cyclist. I'm with you, that is a great time to just forget about everything. I don't think I could live without it. Since we will be starting our Harvoni about the same time, I'll be very interested in watching your posts to compare notes with you. I'm super pumped as I'm sure you are. Let's get this show on the road and kill this beast once and for all!!

Tutu · « **Reply #46 on:** December 11, 2014, 01:32:40 pm »

Day 1 I did feel like I hit a wall about 2 hrs after taking it and had a dull headache but nothing I had to take Advil for. I went home from work walked the dog about 20 mins laid down for about an hour ate some lean protein and slept well until it was time to get up. Day 2 feeling tired but not bad Side effects are minimal I am excited about being on the road to being cured! My only wish is that my husband was still alive to see me finally healthy...but heaven is a better place

BattleTheBeast · « **Reply #47 on:** December 11, 2014, 04:12:34 pm »

Tutu,

Welcome and congratulations on your journey to a cure. Your husband is with you in spirit and no one can take that away.

Try not to take advil for a headache, I think the recommendation is a tylenol because it is less invasive with the liver. Try to keep hydrated, that really helps with the little naggy headaches.

Listen to your body and rest when you need to, stay positive and keep smiling!

Mel

Tutu · « **Reply #48 on:** December 11, 2014, 04:27:35 pm »

Mel,

Thanks for the encouragement! Actually my Dr told me to take the Advil because Tyelnol is harder for the liver to process?

Tutu

BattleTheBeast · « **Reply #49 on:** December 11, 2014, 04:45:08 pm »

Quote from: Tutu on December 11, 2014, 04:27:35 pm

Mel,

Thanks for the encouragement! Actually my Dr told me to take the Advil because Tyelnol is harder for the liver to process?

Tutu
[/quote

That's a little confusing Tutu, Here's a post from Lucinda about Tylenol

Quote from: lporterrn on March 03, 2014, 10:39:50 am
Hi Sally,
I am impressed and inspired by your determination. There are lots of people who have been through treatment (and yes, wish more were brave enough to). I went through it 3 times before I was cured.
Your doc is right - Tylenol is the better choice over ibuprofen (Advil). However, Tylenol has to be taken as directed - beware of excess doses,, esp from acetaminophen in other sources, such as cold and pain meds. Here's an article I wrote about it: http://www.hcvadvocate.org/news/newsLetter/2014/advocate0214.html#2
Other side effect tips can be found at the same website at http://www.hcvadvocate.org/hepatitis/factsheets.asp Also, I've written 2 books about it, but looks like you are in good shape - you can read a lot of the books for free on Amazon or my website http://www.lucindaporterrn.com/ We are here for you - keep in touch.
Lucinda

Islandgirl · « **Reply #50 on:** December 11, 2014, 05:29:54 pm »

Mel and Tutu, my specialist also recommended Tylenol over any NSAID (all are blood thinners) No more than the equivalent of 2000 grams per day (6 regular strength 325 mg tabs) is her recommendation. I take two of these and rarely need more. I like using the lower dose and drinking lots of water - it's moved on faster and if I don't need more that day, so much the better. Of course, you should always check with your own doc as he/she knows your history best., Good luck to all of us and may our needs for other meds be few

....Islandgirl

John3333 · « **Reply #51 on:** December 11, 2014, 08:04:15 pm »

Texasdave, I go to the doc tomorrow, probably take my first pill Saturday AM. I will let you guys know how it goes. I am pumped for sure! After doing the rib/int in 2002, I thought, no more of that! I am grateful that this drug is now available, and I was lucky enough to be approved.

@Mel, I thought i remembered Lucinda posting something about Tylenol, I am glad you reposted it. I was on Piroxicam, which is a NSAID, for achilles problems. I stopped taking it yesterday as I don't want to be taking anything but the Harvoni and maybe an occasional tylenol.

Good luck all and keep the faith.
John.

KathyNJ · « **Reply #52 on:** December 11, 2014, 09:46:32 pm »

Hi Tutu,
I also took my first pill today at 6 pm. Finished my Christmas shopping today in anticipation of any side effects. Looked at my little bottle of 28 pills and realized this was like holding a brand new car in my hands. 32 thousand dollars! LOL! Hope your journey is smooth. My doc told me only to take Tylenol and very little of it. So far no problems. Good luck to everyone who is so generous with their feelings, experiences and advice.

Tutu · « **Reply #53 on:** December 12, 2014, 01:15:43 pm »

KathyNJ,

Good luck on your journey! I feel so blessed to have been approved for this medicine. I was denied the S/O treatment, which now I am glad that I was because of all the side effects. I feel pretty darn good , I know it's only been 3 days but last night I was a crazy woman with energy actually had a hard time going to sleep but finally did and slept through the night. Today I have a little bit of right side rib pain but nothing I can't handle. I can hardly wait till Jan 7 for blood work it will be my 4 wk mark and Dr wants me to take it for the full 12. Just happy there is a cure and a light at the end of the tunnel! Merry Christmas!
Tutu

icantwait · « **Reply #54 on:** December 12, 2014, 03:05:09 pm »

Tutu,
I also thought of my late spouse and wished she could be with me to share in the cure. I know she is happy for me. It has been 7 1/2 years since she lost her battle with depression and took her life. It was a long road to acceptance.
I started Thursday and will also have the first VL drawn on Jan 7. I pray we are both undetectable. My doctor is having cell counts and liver function panels done for the first three weeks.
I had a slight headache the first day and took a Tylenol as recommended by my doctor. He prefers it and just cautioned not to take more than 2000mg a day. No headache today.

Merry Christmas,
Dan

John3333 · « **Reply #55 on:** December 12, 2014, 09:35:29 pm »

Well, I went to the doc today and picked up my Harvoni. He's a gastro guy but I am dealing with his Nurse Practitioner. She went over my blood work, long story short I am now F3, although she was a little skeptical of that given the rest of my test results which were actually not bad. I was Stage 1 Knodell 6 back in 2002, so I guess I could be F3 now.

Anyway, I am going to take my first pill tomorrow AM.

@KathyNJ, I know exactly how you feel, I walked out with the pills in my hand and I felt like I robbed a bank or something, LOL. I brought them straight home, I kept thinking, with my luck I will run in the store and my car will get stolen or something.

Just want to share that I am only the second person to start Harvoni in the practice, which is quite large. She told me they were getting a lot of denials, so I am very grateful, but sad at the same time, I feel a little guilty I guess. Anyway, glad to hear everyone is doing well, and Mel got great news so I was happy to hear that as well.

Stay positive!
John

BattleTheBeast · « **Reply #56 on:** December 12, 2014, 09:50:00 pm »

Hi John,

I am so happy you got your medication and started it today. It's the first day of your soon to be infection free life!

It's such a mixed feeling some days that I am sick enough to be treated. I mean I just found out I had it a few months ago and I was already pretty sick so my approvals were actually pretty simple compared to others. Then again it kills me that people have to get really sick like I have been the past few months or even worse to qualify for treatment. Something just isn't right with this picture.

I just need to get better and then I can try to help make a difference in this battle for others as well. Once I have Me back then I can do something to help someone else. I think all of us that are fortunate enough to get treatment need to help to advocate for those being denied. We need to fight these outrageous costs being charged for the medications. I mean once the Pharma has made their money back and it's all profit perhaps they will lower the price or maybe it's going to be competition between different Pharma's that helps. Maybe we need to do fundraisers and help people go out of the country for treatment. I am not sure what the answers are but I am determined to get better so I can help.

Mel

badbradley · « **Reply #57 on:** December 12, 2014, 09:51:39 pm »

John3333,
Good luck on your journey! I was thinking the same thing walking out of the pharmacy with my first bottles of meds - someone will break into my car or steal it. I even made a special trip home to secure them! ha ha! Last stop SVR12 brother!

John3333 · « **Reply #58 on:** December 12, 2014, 11:06:56 pm »

Thanks guys. Hang in there Mel, your going to get better, you'll see.

As far as the meds, I think a few short years from now we will be talking about a whole different ball game as far as costs go. I think competition will be key. It still stinks right now, but Harvoni won't be at the only game in town forever. I am hoping all this happens sooner rather than later.

KathyNJ · « **Reply #59 on:** December 12, 2014, 11:15:41 pm »

John 333
Thank you. It is outrageous that who gets the meds is like winning the lottery. Chances are so varied -- there is no reasoning behind the pharmacy decision making. Feels like you are going in front of a parole board to plead your case. lol Anyway, day 2 -- no symptoms yet other than foot cramps -- has anyone heard of this. Drank extra water and warm heat on my feet. Probably did too much running around today. Good luck to all you guys who are making this journey -- we will be the champions.

badbradley · « **Reply #60 on:** December 12, 2014, 11:46:34 pm »

Quote from: KathyNJ on December 12, 2014, 11:15:41 pm

Feels like you are going in front of a parole board to plead your case.

I was just thinking that earlier. Sadly It is like being on "Death Row" for some! Some get a case review' some don't. Some get a new lawyer, some don't have the resources. And some get a call from the governor, SOME DON"T!
It is sad and frustrating what some have to endure with this whole proccess.

badbradley · « **Reply #61 on:** December 12, 2014, 11:48:42 pm »

This Qoute thing is starting to P me off! Mad Brad

John3333 · « **Reply #62 on:** December 13, 2014, 08:50:34 am »

badbradley and KathyNJ, thanks for the support!

Just took my first pill this morning. I had to to call the pharmacy and leave a message with the date. I called yesterday and told them I was taking it starting tomorrow AM. They said I had to call tomorrow and leave a message, I just rolled my eyes, whatever.

With all this talk of side effects, I feel like I am waiting to explode or something, LOL.

I will keep you posted.

BattleTheBeast · « **Reply #63 on:** December 13, 2014, 08:59:49 am »

Quote from: John3333 on December 13, 2014, 08:50:34 am

badbradley and KathyNJ, thanks for the support!

Just took my first pill this morning. I had to to call the pharmacy and leave a message with the date. I called yesterday and told them I was taking it starting tomorrow AM. They said I had to call tomorrow and leave a message, I just rolled my eyes, whatever.

With all this talk of side effects, I feel like I am waiting to explode or something, LOL.

I will keep you posted.

John,

You are going to do amazing, no sides and if any they will be minimal. From all I have read from everyone you may get a slight headache the first few days as your body adjusts. Honestly I think I got so sick when the medications were kicking the infections ass! So maybe 7-10 days in you could have a rough day as your infection is obliterated!!

It's amazing how closely they are tracking us with the new meds, guess that's how it works for Guinea Pigs! Most of the new drugs were approved by special FDA approvals so they are being closely monitored.

You've got this!!

M

Islandgirl · « **Reply #64 on:** December 13, 2014, 10:58:08 am »

Congrats, John! I know just how you feel, I think I'm so on the look-out for sides (today is day 11) that I can't tell whether it's a SE or something that would have happened anyway:) But, I think Mel hit it on the head about how closely they are monitoring us - I just mentioned the nausea and headaches MINOR, and my specialty pharmacy (TLC RX) contact encouraged me to report it to the nurse anyway, that they like to keep tract just in case. My GI's nurse is doing the same, as is the Harvoni support path. I guess if they get enough reports from enough people they can eventually figure out which are side effects?

These may or may not be my SE to date: Mild brief nausea (relieved by eating something) intermittent mild to moderate headaches (I've never been headache prone before - relieved by 2 325 mg Tylenol), occasional gas (yesterday evening severe enough to require gas-x to relieve pain), cramping in feet, sometimes leg up to knee severe enough to wake me (warm socks at night, occasionally heating pad), and last night pain in my upper abdomen (thankfully gone today!) that sort of scared me.

I've never focused on things like this before, I'm more of a brush it off and keep going kind of person . The things that were already wrong I'm familiar with, but wondering about SE from Harvoni, as John said, I'm waiting to explode or something. One thing for sure, I'm completing my 12 weeks no matter what!!

Thanks so much for all your comments and advice everyone, it really helps ...Isandgirl

BattleTheBeast · « **Reply #65 on:** December 13, 2014, 11:25:41 am »

Island Girl,

I think I got the sickest when the medication kicked the crap out of the infection. So those days when I ate more liver friendly and stayed away from the bad stuff the "sides" weren't bad at all however I still don't think my "sides" were from the medications per say, I think they were from me and the medications battling this nasty infection inside of me. I think they are from the cirrhosis I have as well.

This is one stubborn infection and these medications are very strong. I think it's silly to think we can beat this without some impact or "side" effects.

Today is 10 weeks, I am off of the Olysio and on Harvoni as of a week ago and I am completely Undetected. There is no way I didn't have a war going on inside of me to go from a VL of over 8 million to undetected, there is no way I didn't have "sides" getting to where I am today not to mention the FibroSure says I am F4.

So hang on, stay strong, continue to eat as healthy as you can, and I can't say it enough "listen to your body" and share what's happening with your doctor. There is a big bright SVR light we are walking towards and we will get there but we may hit a few speed bumps on the way.

M

Islandgirl · « **Reply #66 on:** December 13, 2014, 12:14:15 pm »

Thanks, I needed that!

Mel, you are such an awesome person and I appreciate you. You are a shining light for us all. Thank you! ....Islandgirl

BattleTheBeast · « **Reply #67 on:** December 13, 2014, 12:29:07 pm »

You are so welcome Islandgirl; its a mutual thing. We all get strength from each other. It's what makes this forum even more special!!

M

JillLynn · « **Reply #68 on:** December 13, 2014, 12:34:33 pm »

about the sides......I truly believe since I am 5' 100lbs the treatments affects me worse. I am super tiny built. My male neighbor had NO problems on any HCV treatment. His wife works for a HCV dr. and thinks I get so nauseas because I'm so tiny and we all take the same dosage. It makes sense to me.

Without the nausea.....I'd be breezing thru this! 27 days to go! whoo-hoo!

Feeling stoked about being virus free!!!!

I know WE ALL ARE!!!!! I am ROOTING for ALL OF US!!!!!

JillLynn · « **Reply #69 on:** December 13, 2014, 12:36:54 pm »

I want to give back too Mel! Fundraisers....protests......whatever it takes so everyone can get cured!

BattleTheBeast · « **Reply #70 on:** December 13, 2014, 12:42:47 pm »

Quote from: JillLynn on December 13, 2014, 12:36:54 pm

I want to give back too Mel! Fundraisers....protests......whatever it takes so everyone can get cured!

Let's get better and do something!

M

JillLynn · « **Reply #71 on:** December 13, 2014, 12:50:51 pm »

it's a deal!

John3333 · « **Reply #72 on:** December 13, 2014, 10:18:45 pm »

Well, so far so good guys. I am still trying to decide who has the best avatar, Mel or Islandgirl, LOL. Every time I look at Islandgirls I think of a nice cup of joe, I love my coffee!!

So far sides are no problem, i think a lot of us did the rib/int so maybe we were expecting more. I know this is going to be a breeze in comparison. Well, one down, 83 to go.

I find everyone on here helpful and interesting too! From bird watchers, to nurses, to biologists, it's pretty cool.

Stay strong and take it one day at a time.

John.

John3333 · « **Reply #73 on:** December 13, 2014, 10:22:55 pm »

Oh, and one last thing Mel, Islandgirl is right, you help a lot of people on here, even people who don't post but just come on and read the forum.

You are always saying when you get well you want to give back, well, you already are giving back by being an inspiration on here to others.

Thanks.

Islandgirl · « **Reply #74 on:** December 13, 2014, 11:16:03 pm »

John, you are so right to remind us that being an inspiration and sharing our experiences (which Mel is so good at) IS giving back!

About that coffee.... Not only am I a coffee lover, I'm known for putting a cup down some place in the house and then looking everywhere for it

I may have to reheat it at times, but I love my coffee (grind my own beans in a small grinder I've had for almost 30 years - a gift from my brother) I couldn't resist that Avatar:) ....Islandgirl

mzmavis · « **Reply #75 on:** December 14, 2014, 09:50:37 am »

Best to all! I am on week 5 of Harvoni. Just had the 4 week labs, liver enzymes are normal for the first time in 30 years! Still waiting to hear about the viral load. I see my ID on Wednesday.

I had headache, nausea, increased insomnia, and body aches, all were mild. Mostly gone by week 3. As most have posted, I have rested when I am tired, tried to eat healthy and drink adequate water.

I have BS HMO and was approved for treatment right away Due to autoimmune disease I could not take the interferon treatment (thankfully). I did sign up for the Harvoni Copay Program which brought the copay down to $5!!!!!!

Thanks to all who are posting. Keep up the fight, the end is in sight!

BattleTheBeast · « **Reply #76 on:** December 14, 2014, 10:39:22 am »

Thanks John and Islandgirl,

I think we all help each other so much. I mean I can't tell you how many times I sent a PM to Bucky, Lucinda or to Rubye just because I needed someone to talk to and they always made me smile even when I was in the dumps.

I wish more people would jump in and join the forum to share their experiences with us. I think the more we share, the more we learn and the more we can help each other. Like when Lynn posted the email address for express-scripts and by using it I was able to help fight to get the Harvoni approved even after they said NO.

I love my new Avatar, when I found out the other day I am really UD I searched high and low for one that I just loved and Mini Punching Ninja Turtle won out! I was actually looking for a Slayed Dragon but then decided that need to wait for SVR24!

MZMavis,

That's great news and so happy you are tolerating the treatment well. I hope more people continue to understand that perhaps the "sides" we feel are more of our body and the new medications killing the virus than an actual "side" effect of the medication especially with Harvoni and S/O (not so much with Rib or Interferon).

Stay strong and keep on keeping on, you are doing a great job!!

Mel

Islandgirl · « **Reply #77 on:** December 14, 2014, 11:14:53 am »

Mel, your comments on what's going on when we experience side effects really helped me. Now, when I think I'm experience something, I react positively and cheer myself on as that magic orange lifesaver fights my battle for me. Crazy sounding or not, this is really helping my mood and reactions to things! Time for another cup of coffee and another thank you to you:) ...Islandgirl

John3333 · « **Reply #78 on:** December 14, 2014, 10:44:02 pm »

Hi guys. Well, day 2 is just about over. Really no problems. I feel a little weird, like you know something is going on, slight headache, but really, nothing to speak of. I actually ran this morning, bad achilles and all. I just needed to get outside, probably should have just walked.

Anyway, there are two more people who posted that they started the Harvoni yesterday too! We are all going to beat this thing!

Islandgirl, I grind my own beans too, love to get wound up on the java, not that I need anything to get me going as a I am type A all the way, LOL. When i have a really good coffee buzz going they start putting helmets on at my office as I am flying around like a nut, LOL. Talk soon guys, take care.

John.

Ollie · « **Reply #79 on:** December 15, 2014, 08:59:58 am »

Day 9 on Harvoni and I'm so excited to report no SE. I think the first five days I could feel it in my system but nothing to complain about. Now my body is used to it and I can't detect medication at all. Good luck to all of you - may your path be as smooth as mine. I'll post next week or earlier if SE.

Islandgirl · « **Reply #80 on:** December 15, 2014, 02:18:37 pm »

John, hope you do OK with that Achilles, yeah, walking probably would have been a better choice since you had to go off your med that helps keep pain and inflammation down. I also had to go off my Mobic for my ankle my next cortisone shot will be after Harvoni is finished. Surgery won't correct it and I'm not about to lose the mobility I have to any other option. In the summer I worked back up to 2 mile walks on the beach daily, winter has me working back up as I can. Getting older, as they say, is not for sissy's:) I'm keeping my boyfriend's (type A, like you) two Jack Russel's right now and have to trade off walking dogs. My dog is NO problem taking for a walk, but those two energetic guys on a lead.... But we'll still be walking; renewing my gym membership tomorrow since it expires on the 26th. Keep encouraging me:)

Ollie, I'm on day 13 - tomorrow is my first blood test and 2 weeks later will be the rest of the series of labs, my doc follow up will be on January 12. Glad you are doing so well! I didn't really have SE to speak of at first, now some intermittent nausea and stomach distress occasionally but nothing terrible. Good luck to us all! ...Islandgirl

John3333 · « **Reply #81 on:** December 15, 2014, 07:28:33 pm »

Two Jack Russels, that's a handful! Get back to the gym! I feel ok today, tired, but I stayed up watching the game last night. Achilles feels ok. I see Ollie posted that his sides got better, which is great. So far I get slight headaches and I am tired, but I am like that half the time anyway between work, the kids, and my sinuses acting up, so it's no biggie really.

Tell me what you guys think of this. I think I posted that I was dealing with the Nurse Practitioner at my doctors office. So I have to go back next month to pick up the next 28 pills because she likes them to be shipped to the office. It's fine with me. I asked her about blood work, and she said no blood work until the end of the 12 weeks. I asked her why and she said she was at the liver conference in Philly, and because the Harvoni is working so well, there was no need to test because everyone is going to finish the cycle of 8 or 12 weeks anyway. I thought that was strange given everyone on here is getting tested at 2 week or 4 weeks. Should I insist on the blood work? I am going to do the 12 weeks no matter what. I was so excited to get my hands on the Harvoni, I didn't really give it much thought until I was driving home. Anyway, glad everyone is doing well!

John.

Islandgirl · « **Reply #82 on:** December 15, 2014, 08:42:58 pm »

John, I haven't heard of anyone not doing the labs from what I've been reading, but maybe someone who's been around longer has - or one of the moderators. Maybe one of the nurses on the Support Path could comment on this.

I would ask the NP if the insurance company doesn't require this. I'm not certain but I thought I heard something about that. If you would feel more comfortable having the results, I'd ask for tests for that alone. Do they charge a co-pay for these visits to pick up your pills? Just curious. Haven't heard of anyone having to do that either. Mine come by FedEx and must be signed for.

I think most of us deal with the nurse or nurse practitioner in between doc visits to follow up on the lab results. Actually, the doc explained that this is how it works during our appointment when we completed the paperwork for her to submit for approval.

I hope you get lots of posts with information - the more we share the more we all benefit. I'll be watching with interest to see what we learn. ....Islandgirl

KathyNJ · « **Reply #83 on:** December 15, 2014, 09:20:02 pm »

To John 3333
My doctor also said to test after completion of treatment (8 weeks). No blood tests in between. My doctor did all the paperwork and when they got the approval, I had to call my specialty pharmacy to arrange for next day delivery from Fedex. I did have to be home to sign for delivery. My pharmacy will notify me by computer when to call in for the final delivery of my pills. I guess every doctor has a different approach to testing.

KathyNJ · « **Reply #84 on:** December 15, 2014, 09:41:47 pm »

John 3333
Forgot to add that I could not qualify for $5 copayment coupon from My Support Path because my retiree supplementary insurance coverage was provided by Department of Defense (worked as a civilian, not military). My insurance charged me $100 copay for 28 pills. Ok with that. Day 5 of treatment and no side effects other than sleeping longer than usual at night. I take my pill at 6 pm. So it just proves that everyone's experience with this healing path is so different, although our end goal is all the same.

Texasdave · « **Reply #85 on:** December 16, 2014, 07:56:35 am »

Good Morning Everyone !

I hope you are all doing well this morning. Well, today is the day...going to my GI to get my first Harvoni Rx and get started. Can't believe this day is actually here. Kind of nervous but extremely happy. I just wish everyone could get this drug and be CURED. I'll keep posting as things progress. I hope ya'll (that's Texan speak) have a great day !

Dave

Islandgirl · « **Reply #86 on:** December 16, 2014, 09:07:28 am »

'Morning, Texasdave! It's a HAPPY DAY for sure:) I got overwhelmed and tearful when I held the first pill in my hand to take - wasn't expecting that, but it's such a momentous occasion for us who have waited so long. My prayer is that every genotype gets a magic pill that works for them and this dragon is obliterated. I/we share the hope and joy I know you're feeling today. ...Islandgirl

KathyNJ, I also take my pill at 6:00 and have my cell phone alarm set to remind me if I'm busy and lost track of the time. I sleep very well most nights but find I need to eat something not long after the pill. ...Islandgirl

Texasdave · « **Reply #87 on:** December 16, 2014, 12:16:08 pm »

Hello all:
Just took my first Harvoni tablet. I felt like I should have had some kind of ceremony or something. So, the journey begins. The nurse that I work with at the GI told me that I was the last insurance approval she has gotten, that the next five were all denied. She said they (not sure which insurance co.) are now requiring Fibroscan scores of F4 and all sorts of other BS ! I can't believe how incredibly fortunate I am. It just burns me up that everyone is not given the same opportunity that has been my blessing to have. As always, I appreciate reading all your posts. Please keep us updated and I'll do the same.

John3333 · « **Reply #88 on:** December 16, 2014, 10:09:31 pm »

Thanks Kathy and Islandgirl. Kathy, I see you also were told no blood work until the end of treatment, I am 12 weeks because I am tx experienced. I have heard other people picking up the meds at the docs office. I don't have a problem with it because both my wife and I work, and I don't like the idea of leaving $30K worth of pills in between my door, LOL. I do not have any charge for blood work from my insurance, which is very good. I have a $5 co pay for the Harvoni, which is just unbelievable, I feel blessed, believe me. Islandgirl, I never considered that it may be a requirement for the ins company. My wife thinks it's for psychological reasons, since most people are now getting SVR, why put them through the stress at 4 weeks if enzymes are still elevated or something like that. Anyway, I will ask when I go to pick up the next batch.The suspense will be killing me!

@Texasdave: Good luck! Today was day 4 so you are right behind me. So far a little bit of a headache. If this is it then it's going to be a piece of cake. I posted before that my Doc is having a heck of a time getting people approved, so yes, I feel very blessed indeed.

So Islandgirl, how is the gym? Was it good today? LOL.

Texasdave · « **Reply #89 on:** December 17, 2014, 06:26:27 am »

Hey John:
Took my first pill yesterday at about 11am. Zero side effects ! Felt great all day. Went and ate a Subway, worked at the office a while then got in 20 miles on the bike. I'm getting ready to fly to Chicago (from Houston). I'm a little worried about carrying the Harvoni with me, but I don't plan on letting it out of my sight. Glad you're doing well...keep it up. We'll all be CURED come early Spring !

Take care, Dave

Texasdave · « **Reply #90 on:** December 17, 2014, 06:28:12 am »

By the way, my dr. wants to do labs at four weeks. Guess they're all different.

Islandgirl · « **Reply #91 on:** December 17, 2014, 12:52:12 pm »

Hi everyone,
Yep, "ya'll" (Texasdave talk) while we have many commonalities, each path is a bit different. While I didn't appear to qualify for the $5.00 copay coupon since I'm on a medicare complete plan, I do think the Support Path finds ways to help medicare patients too. However, the TLC Specialty Pharmacy got me qualified for a grant with Patient Access Network Foundation that helps people with certain life threatening diseases - the list includes Hep C - and I have no copay! Blessed, indeed - I broke down in tears of relief and gratitude. My insurance approved me for 12 weeks and the grant should provide the copay for the entire time and said we could reapply for additional funds if needed. Even though I'm treatment naive, my doc still specified 12 weeks. Day 84 should be Feb 24, 2015 - heck of a late Valentine's Day present!!!!!!! 2015 will be a wonderful year for us all - I'm literally beaming out healing positive energy to everyone. Grab some and send some back:) ....Islandgirl

KathyNJ · « **Reply #92 on:** December 17, 2014, 04:49:00 pm »

Hi all,
The reason they only approved an 8 week treatment was because my viral load was just over 1 million ( for some reason they consider that low) and my liver biopsy was still at stage zero. Got this disease in 1965 after blood transfusions following getting hit by a car. Lost so much blood, they had to give me a few transfusions. Found out in 1994 when I volunteered to give blood at a blood drive. By that time, they had started screening for hep c and I got a letter in the mail telling me of my diagnosis. I did respond to Interferon treatments 3 times but then this insidious virus mutated and reactivated. I am sure this is the final cure I have been waiting for. And of course all my fellow sufferers. We will win this fight this time.

Islandgirl · « **Reply #93 on:** December 17, 2014, 06:14:27 pm »

Quote from: John3333 on December 16, 2014, 10:09:31 pm

Thanks Kathy and Islandgirl. Kathy, I see you also were told no blood work until the end of treatment, I am 12 weeks because I am tx experienced. I have heard other people picking up the meds at the docs office. I don't have a problem with it because both my wife and I work, and I don't like the idea of leaving $30K worth of pills in between my door, LOL. I do not have any charge for blood work from my insurance, which is very good. I have a $5 co pay for the Harvoni, which is just unbelievable, I feel blessed, believe me. Islandgirl, I never considered that it may be a requirement for the ins company. My wife thinks it's for psychological reasons, since most people are now getting SVR, why put them through the stress at 4 weeks if enzymes are still elevated or something like that. Anyway, I will ask when I go to pick up the next batch.The suspense will be killing me!

@Texasdave: Good luck! Today was day 4 so you are right behind me. So far a little bit of a headache. If this is it then it's going to be a piece of cake. I posted before that my Doc is having a heck of a time getting people approved, so yes, I feel very blessed indeed.

So Islandgirl, how is the gym? Was it good today? LOL. John3333, I wasn't ignoring you Keep reminding me - I'll get there. I did get some different stretching exercises to try the help the outside tendon from ankle to knee when I was at the doc's today that I'm hoping will stop/lessen the severe cramps I'm getting there. Busy day and didn't make it anywhere near the gym. Gotta do it! ....Islandgirl

RiseUp · « **Reply #94 on:** December 17, 2014, 07:04:06 pm »

Hey Texasdave,
I'm right behind you. Took pill #1 at 9am today. So far so good. Looking forward to springtime 2015.

John3333 · « **Reply #95 on:** December 17, 2014, 08:35:08 pm »

Hi All. Welcome RiseUp. Islandgirl, that's great how it all worked out for you getting the meds. I was just busting on you about the gym, I swear by the old Nike commercial, Just Do It! Oh, and thanks for the positive energy! I will play it forward for sure.

Texasdave, Don't lose those meds, LOL! All jokes aside, I think I would be nervous traveling with them. Take it easy, with traveling and all, you might not feel so great after a few days.

I was energetic the first 3 days, today I am tired though. We just got through dealing with one sick kid, so now the other one, as well as my wife, are sick. Can't win.

KathyNJ, Can't believe you have had this virus since 1965 and you are still stage zero. It's such a mysterious virus, it affects everyone differently. I had not had a full blood work up for some time, so I was surprised that I had progressed to F3. I think I got the virus sometime in the early 1990's.

I am glad I have you guys to "talk" with as we go through this treatment. It helps.

Stay positive.

John.

Texasdave · « **Reply #96 on:** December 18, 2014, 07:36:42 am »

Good Morning John, Islandgirl and everyone else !

Day two of Harvoni was yesterday. It's all good so far... Had a very mild headache this morning but it went away once I started moving around. John, thanks for the advice. I 'm up here in Chicago (freezing my tail off!) but everything seems ok so far. Not much else to report. You guys please keep posting as you are the only ones I'm able to share this with and get feedback from. I really look forward to "hearing" from you guys every day. It almost seems surreal that I'm actually taking this incredible drug that's going to CURE all of us. I'm sending positive vibes out to you ! Have a great day !

RiseUp · « **Reply #97 on:** December 18, 2014, 09:02:28 am »

Good Morning Everyone! Just took pill #2. Day one was ok, nothing out of the ordinary.

Thanks John3333; Texasdave, stay warm in Chicago.

Islandgirl · « **Reply #98 on:** December 18, 2014, 09:22:10 am »

Good Morning back!

I woke up thinking how incredibly fortunate we are to finally have Harvoni and this forum that brought us into each others lives - we couldn't get this kind of support elsewhere because they wouldn't relate the same way. Thank you all.

Texasdave, I used to travel constantly in my job - entire US, HI & a bit of Canada, flying in and then driving for a week to three at a time calling on accounts. I was thinking what I'd do if I was traveling with my Harvoni (I find myself hiding it when I have cleaners or workmen in, etc.) We learned mom has to do that with her pain med as we know some were missing but don't know who took them. I'd probably only take the amount I needed for the trip, plus a couple in case of delay getting home, and put them in something like a vitamin bottle and probably put in a gym sock with the bottle portion in the shoe; a zip lock baggie works well in a sock too.

Lots of ways to hide or disguise things when traveling. I know you've taken some precautions, just thought I'd share. If I'm out and about near the med time (alarm set on my cell) I have a tiny baggie with a pill in it in my pocket or somewhere safe so I can still take it on time. Man, I never had such a personal relationship with a pill! One I'm glad to have, of course

Like you said, I really look forward to hearing from everyone too, it has become such an important part of my day, and I'm so happy that we are all doing so well! Thanks again everyone (can't say it enough)!! ...Islandgirl

badbradley · « **Reply #99 on:** December 18, 2014, 09:32:47 am »

Texasdave, Kickin' it in the windy city..Makes you feel alive doesn't it? Slip into those longjohns and enjoy!

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