Hepatitis Forums

Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: scorpio on December 01, 2014, 04:08:49 pm

Title: Starting Harvoni!!
Post by: 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
Title: Re: Starting Harvoni!!
Post by: lporterrn 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.
Title: Re: Starting Harvoni!!
Post by: scorpio 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.
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast 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~
Title: Re: Starting Harvoni!!
Post by: scorpio 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
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast 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~
Title: Re: Starting Harvoni!!
Post by: gea 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.
Title: Re: Starting Harvoni!!
Post by: Marijayne 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
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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!
Title: Re: Starting Harvoni!!
Post by: Marijayne 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 ..♥
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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 :)
Title: Re: Starting Harvoni!!
Post by: 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...!!!!
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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
Title: Re: Starting Harvoni!!
Post by: John3333 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!
Title: Re: Starting Harvoni!!
Post by: amy1662 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.
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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:)
Title: Re: Starting Harvoni!!
Post by: scorpio 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
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast 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~
Title: Re: Starting Harvoni!!
Post by: Texasdave 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.
Title: Re: Starting Harvoni!!
Post by: lporterrn on December 08, 2014, 12:55:45 pm: WhooHoo TexasDave - I hope you will be counting chickens soon!
Title: Re: Starting Harvoni!!
Post by: ma snart 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
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast 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
Title: Re: Starting Harvoni!!
Post by: 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.
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast 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~
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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!
Title: Re: Starting Harvoni!!
Post by: gea 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!
Title: Re: Starting Harvoni!!
Post by: John3333 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.
Title: Re: Starting Harvoni!!
Post by: KathyNJ 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.
Title: Re: Starting Harvoni!!
Post by: badbradley 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
Title: Re: Starting Harvoni!!
Post by: KathyNJ 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.
Title: Re: Starting Harvoni!!
Post by: scorpio 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.
Title: Re: Starting Harvoni!!
Post by: scorpio 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
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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
Title: Re: Starting Harvoni!!
Post by: 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 !!
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast 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
Title: Re: Starting Harvoni!!
Post by: Tutu 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
Title: Re: Starting Harvoni!!
Post by: 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?
Title: Re: Starting Harvoni!!
Post by: Proudgmma 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.
Title: Re: Starting Harvoni!!
Post by: bunakia 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.
Title: Re: Starting Harvoni!!
Post by: Ollie 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!
Title: Re: Starting Harvoni!!
Post by: gea 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!
Title: Re: Starting Harvoni!!
Post by: John3333 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.
Title: Re: Starting Harvoni!!
Post by: John3333 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!
Title: Re: Starting Harvoni!!
Post by: Texasdave 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!!
Title: Re: Starting Harvoni!!
Post by: Tutu 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 :)
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast 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
Title: Re: Starting Harvoni!!
Post by: 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
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast 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 (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 (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/ (http://www.lucindaporterrn.com/) We are here for you - keep in touch.
Lucinda
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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
Title: Re: Starting Harvoni!!
Post by: John3333 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.
Title: Re: Starting Harvoni!!
Post by: KathyNJ 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.
Title: Re: Starting Harvoni!!
Post by: Tutu 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
Title: Re: Starting Harvoni!!
Post by: icantwait 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
Title: Re: Starting Harvoni!!
Post by: John3333 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
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast 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
Title: Re: Starting Harvoni!!
Post by: badbradley 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!
Title: Re: Starting Harvoni!!
Post by: John3333 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.
Title: Re: Starting Harvoni!!
Post by: KathyNJ 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.
Title: Re: Starting Harvoni!!
Post by: badbradley 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.
Title: Re: Starting Harvoni!!
Post by: badbradley on December 12, 2014, 11:48:42 pm: This Qoute thing is starting to P me off! Mad Brad
Title: Re: Starting Harvoni!!
Post by: 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.
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast 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
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast 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
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast 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
Title: Re: Starting Harvoni!!
Post by: JillLynn 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!!!!!
Title: Re: Starting Harvoni!!
Post by: 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!
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast 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
Title: Re: Starting Harvoni!!
Post by: JillLynn on December 13, 2014, 12:50:51 pm: it's a deal!
Title: Re: Starting Harvoni!!
Post by: John3333 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.
Title: Re: Starting Harvoni!!
Post by: John3333 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.
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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
Title: Re: Starting Harvoni!!
Post by: mzmavis 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!
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast 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
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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
Title: Re: Starting Harvoni!!
Post by: John3333 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.
Title: Re: Starting Harvoni!!
Post by: Ollie 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.
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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
Title: Re: Starting Harvoni!!
Post by: John3333 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.
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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
Title: Re: Starting Harvoni!!
Post by: KathyNJ 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.
Title: Re: Starting Harvoni!!
Post by: KathyNJ 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.
Title: Re: Starting Harvoni!!
Post by: Texasdave 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
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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
Title: Re: Starting Harvoni!!
Post by: Texasdave 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.
Title: Re: Starting Harvoni!!
Post by: 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.
Title: Re: Starting Harvoni!!
Post by: Texasdave 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
Title: Re: Starting Harvoni!!
Post by: Texasdave 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.
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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
Title: Re: Starting Harvoni!!
Post by: KathyNJ 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.
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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
Title: Re: Starting Harvoni!!
Post by: RiseUp 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.
Title: Re: Starting Harvoni!!
Post by: John3333 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.
Title: Re: Starting Harvoni!!
Post by: Texasdave 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 !
Title: Re: Starting Harvoni!!
Post by: RiseUp 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.
Title: Re: Starting Harvoni!!
Post by: Islandgirl 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
Title: Re: Starting Harvoni!!
Post by: badbradley 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!
Title: Re: Starting Harvoni!!
Post by: Tutu on December 18, 2014, 12:31:53 pm: Day 8 and side effects have been minimal, slight headaches, nausea when I don't eat and acid reflux but I am also off my Protonics. Sometimes I feel like I have all the energy in the world other times I don't know how I am going to make it through the work day. I listen to my body and rest when I feel like I hit a brick wall, trying to drink as much water as I can, but I'm more of a sweet tea girl during the day so that change has been tough! I have to do blood work after 4 weeks and then again at 12 weeks. I can't wait to see what my levels are in January...2015 is going to be a life changing year for all of us!
Title: Re: Starting Harvoni!!
Post by: mario555 on December 18, 2014, 02:15:19 pm: To Texasdave. I can understand you don't want to take a chance on the plane with your pills!!! I will have to fly and stay away for 5 days and I've estimated all the shit that could happen so as to make sure I don't run out of pills away from home! Make sure to keep the pills with you on the plane but make sure they are not getting too hot. The Harvoni instructions say to keep them below 92 degrees (30 Celcius). I thougt it might be a bad idea to have them against my body and also, I will take a few extra (a whole week) in case of snow storms, delays, etc... I told my wife I'd be willing to drive, fly, take the train, hitchicke if need be but I'll make darn sure I don't jump a day. Good luck to you and your treatment.
Title: Re: Starting Harvoni!!
Post by: John3333 on December 18, 2014, 09:19:48 pm: Hanging in Chicago, that's cool. My friend at work grew up there, he's a Bears fan so he's not to happy lately, LOL. $1125 a pill there Dave, keep an eye on them!

Well, today was day 6 for me, little bit of a headache. The weird thing is, I take it around 800AM, and then I get a burst of energy about an hour later. At night I am tired, but who isn't? Feel a little weird sometimes, hard to describe, but really, so far nothing to complain about, really quite tolerable.

Islandgirl, I was doing some reading on Harvoni, and the more I learn, the more I realize how lucky we are to get this drug. It's the "cadillac" of the meds out there right now, and many people can't get it. I guess AbbVie's combo treatment is coming out sometime this month, that may help bring prices down in the long run I hope.

I haven't seen Mel on in the past few days, hope all is ok with her. When I first started reading the forum I learned a lot from her posts.

Tutu, mario, Badbradley, Riseup, Kathy, all of you guys, glad your here. I must say I am very excited. I used to worry so much because I have young children, I am 50 as it is now, and with the Hep C, well, I was always waiting for that shoe to drop. I want to be here for my kids. I used to just push the Hep C stuff to the back of my mind, workout like an animal, try to eat right. No boozing. I made some bad choices in my twenties, worked my ass off to straighten my life out. Now I am blessed with a great wife, great kids. It was always there the though, the elephant in the room that I didn't want to think about. I would worry constantly about being 60 and leaving a 14 and 16 year old without a father, you know? Now hopefully we can all get rid of this thing once and for all!!

Thanks for listening. There is really nobody else to talk about this shit with, it's not like I am going to walk around my office and announce to everyone I have Hep C, LOL.

John.
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on December 18, 2014, 10:45:32 pm: Hey John,

I'm around just quiet (that's a shock, I know). I'm doing ok as well, Harvoni seems to be much easier on me than the Olysio was.

It's amazing that we have this forum and each other. No one really gets all we are and have gone through with this monster and stigma. One day it would be amazing to get in a room with all of you and pass some hugs around and share our stories.

I really have this huge desire to figure out a way to help people battling this and make a difference; not sure how but maybe someday I will be able to make that really happen.

Hope everyone is ready for the holidays and enjoys them. Tomorrow my middle
Child turns 35 so I'm taking her to lunch and just have some chill time with her. She's been dealing with Post Concussion Syndrome after being slammed at a stop light.

Happy almost Friday and thanks to all of you for being here for me; it really really matters and means so much!

Mel
Title: Re: Starting Harvoni!!
Post by: badbradley on December 18, 2014, 11:35:40 pm: Hey Mel,
Forum's a little slow today Mel. Not sure I'm comfortable with you being so quiet .I wanted to comment on the stigma thing and how people around us don't have a clue what were dealing with. For the past 3 years my life after I walk through the doors at work has been spent in large part on the web trying to figure out how to prolong my life. The best foods to eat, foods not to eat, vitamins, herbs-which ones are good which ones are bad. Exercise - how much? Do I tell the dentist,do I tell my boss? And the few people that do know, don't really know. I really am almost to the point of putting it out there. That's a scary unknown, but I too feel an obligation and desire to make a difference. We all have our own story and experience with this disease and telling our stories is the best pay it forward I can think of.
Anyways, thanks for listening-I needed to say this. Brad
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on December 19, 2014, 07:51:57 am: Brad,

No worries, it's all good. I was busy working and I am feeling so much better without that Olysio in me. The Harvoni and I are doing much better together :)

I am thinking about ways to reach out to high school and college students. I know they have all these programs for HIV but I don't think they really talk about Hepatitis they way they should. The kids need to be aware of the dangers of it and that it's a life changer if it turns into cirrhosis. I'd also like to work on the stigma attached to it. Just because someone has hepatitis it doesn't mean they were an IV drug user although that is the perception from so many people I have discussed it with. I mean in the US we didn't even test blood for it until 1992 so anyone who had a transfusion before then could have been infected. People also really need to pay attention at nail salons and make sure they are using good sterilization techniques or bring their own instruments in. For me, I will never be 100% sure how and when I was infected. I know I have been cut over the years getting pedicures, I know I had blood given to me at the age of 14 during an emergency surgery. I don't have any tattoos and didn't use IV drugs but was married to an IV drug user in my early 20's.

I'm not really sure how to go about it all yet but just mulling it around in my head. Maybe even just getting a bunch of stories together and doing a self-published free book. As you said our stories are the most powerful and really tell the tale. Hopefully I will have a long life ahead to figure it out and make a difference in someone's life.

Mel
Title: Re: Starting Harvoni!!
Post by: mario555 on December 19, 2014, 08:02:17 am: Battle the beast and Badbradley. On the subject of helping others I wanted to let you know my experience with ''coming out of the closet'' so to speak... I'm an older accountant (59) with a stellar reputation but no one knew me in my stupid teenage years when I probably got sick with Hep C (1975??). About 1 years ago I decided to do what I could to help other Hep C sufferers. My liver specialist had just received a brand new Fibroscan machine and he wanted to boost his liver department through a press conference. On top of the hospital management, he wanted to have an Hep C patient to address the crowd. I ended up giving a 5 minutes speech on front of the press and approx. 100 people in the hospital lobby. I was dressed as an accountant (suit, tie, freshly cut hair, etc..) and told the crowd about what it was like to have Hep C and what benefit came of the acquisition of the Fibroscan machine (had the first run at it in exchange for my speech). My picture was front page on a local paper and I had to come out with my co-workers. They started giving me a wide berth when coming close to me. I think they were scared to have my viruses jumping at them! It lasted about 2 weeks and then everything died down. I'm sure I must have been the talking subject at supper time on the day I told everyone. And YES, there is a stigma and YES, it is delicate to try to explain where the hell I got this from! I thougt ''f..'' them all, I'd be dying if I wouldn't take the treatment (F4, 8 millions VL) and I really thought I'd be unable to hide the side effects of the new medication that was coming out at the end of 2014 (Harvoni). Also, somebody had to do it! I was lucky to have my own business but be careful if you're an employee. Let your boss know first and wait a while after so the boss can digest the new information... This disease HAS to come out and YES, I did stupid things 45 years ago, so What??
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on December 19, 2014, 08:34:31 am: Bravo Mario!

Thank you for sharing your story.

I actually just "came out" to my boss last week. She's been allowing me to work from home for over 6 months without a total explanation of what was going on with me. I'm a Project Manager and can do my job anywhere as long as I have internet access, a computer and a phone. Luckily my company is pushing more "remote" to save on office space since real estate is a huge budget amount in the NE.

I just finally felt strong enough after knowing about it for 5 months to tell her. Maybe it was the strength from all of you . Maybe it was coming to terms with it inside my head, maybe it was because I am finally starting to feel a little human again. I currently have an agreement to work remotely for a couple more months so I figured well I might as well just tell her, hope I beat this beast and am healthy enough to go back in two months, by then she would have digested it. It could turn out to bite me in the butt but I had to do what I felt was right. I have no reason to be ashamed, what's the difference if it is Hep C or cancer? Would I be ashamed if it was cancer instead?

I am not at the point where I want to actually be in a newspaper, so not quite as brave as you but I am working on finding my courage!

Mel
Title: Re: Starting Harvoni!!
Post by: Texasdave on December 19, 2014, 09:46:55 am: Good Morning All,

Day four and no side effects so far. I do have a little case of the sniffles, but that may be from being here in Chicago in the freezing cold! Ready to get back to Houston where it's q bit warmer.

John - I appreciate hearing about your family and such. I'm about your age but my kids are all grown and gone. Enjoy those kids my friend, it goes by so quick. Before you know it they'll be heading off to college and off to start their lives. You're very lucky to have them and an understanding wife to support you. Unfortunately, my wife and I are separating and couldn't care less about me, but that's ok. I'm truly blessed actually having a real shot at being cured of this monster.

Island girl- I travel all the time for work and was afraid I'd get stuck somewhere and have some kind of horrible side effects or something. Very lucky that there have none so far.

Mario- that's awesome to hear about you're addressing people and the press. I haven't gotten up the courage to "come out" yet. Don't know if I ever will or not. Just have to wait and see.

Mel - I like your thoughts regarding creating awareness about this disease. Have you seen the commercials on tv? Every time i see one I think how crazy lucky I am to have access to this miracle drug.

Everyone - thank you so much for posting and sharing. You don't know how much it means to me to hear how you all are doing, stuff about your lives,etc. It gives me strength to know that I'm not fighting this alone. I always remember all of you in my prayers every day. Keep it up, stay strong and we WILL win this fight.

Dave
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on December 19, 2014, 11:10:05 am: Morning Dave,

Keep on staying strong. I couldn't imagine going through a separation at the same time I was going through this mess. Honestly my mind frame isn't the best everyday and some days it's really hard to stay "even" but as time goes on with the Harvoni I am doing better at that.

Yes those commercials, where were they 10 years ago? Maybe I would have already been tested and known and wouldn't be F4 today. That guy smiling and hugging his wife out in the sun, guess he isn't on S/O because not sun for Olysio,, haha. I can be so cynical, guess it's my Jersey Girl coming out!

Personally, I'd like to give a more real story to people, just saying! Anyway have a good day, I took today off to have a late lunch with my birthday daughter over in PA so I am going to take a nap after a bottle of water to get rid of this little naggy headache.

Much love to all,

Mel
Title: Re: Starting Harvoni!!
Post by: JillLynn on December 19, 2014, 12:24:30 pm: I am not ashamed one bit of having HCV. I had 300,000 people listening every 10 minutes on my radio show and told everyone I was on treatment. As I said before I even did a segment on WXYZ news about it and how one shouldn't be ashamed NO MATTER how they got it. I was 19 when I shared a needle in college with 2 people. 19 years old! I did needles so briefly and choose NOT to hold that against myself.

I know why I used and I still deal with my violent, traumatic, alcoholic childhood when things come up. I have nothing to be ashamed of.

I'm a survivor in every sense of the word and I've come to terms with how fortunate I am. I've worked very hard at loving myself....when you grow up being told you're a no good piece of shit and beaten for looking the wrong way..........NO! shame on violence and people having children when they shouldn't. That's what I'd like to see.....young people learning and being taught how to raise healthy, whole children in school or college. Such a big job and so few do it well!

I have always forgiven my parents. I know they couldn't have done any better. But I know for certain, had I not done alcohol and drugs I'd have killed myself from the pain I was in. Don't recommend it for anybody else....but for me, I got the help I needed and was able to help my family too.
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on December 19, 2014, 12:33:57 pm: Love that new Avatar Jill!

I am not ashamed of having HCV nor do I think anyone should be ashamed no matter how they got it.

For me, being so newly diagnosed I am just coming to terms with it inside myself. It was a huge shock to me and pretty scary in my situation raising and responsible for myself and my grandson who has special needs. I was pretty scared of hearing out of nowhere I am F4. Not to mention the doctors throwing out Thyroid Cancer and sending me off to biopsies and test after test. So I will survive and I will do something to help others so they aren't shocked into an F4 diagnosis. This virus needs to be stopped in it's tracks in the beginning and not be a silent killer.

You are a strong amazing woman Jill and I am so proud to get to know you :)

Mel
Title: Re: Starting Harvoni!!
Post by: JillLynn on December 19, 2014, 12:38:12 pm: thank you Mel....I feel the same about you. AND.....I didn't even know what an avatar was until you started posting about it! Now I'm hooked on them. I like this one too! (smile) its for all of us!!!

yes, your journey with the virus is scary....very!

....I've known since the year HEP C was discovered but ignored it. I had no clue what my gastro and drs were talking about. It was years later I decided to treat it and learn about it.

So thankful it's a new day.......and we have a chance at a healthy "rest of our lives" w/o this darn virus!
Title: Re: Starting Harvoni!!
Post by: mario555 on December 19, 2014, 12:44:23 pm: Congrats Mel and Jill for informing people about the disease. It helps everyone to understand and start dealing with that problem. Now that the means to get rid of that disease globally, we should start advocating to have everyone cured (like with polio). Jill, to mention it on the radio must surely have done lots of good for disseminating the information. Thank you kindly.
Mario
Title: Re: Starting Harvoni!!
Post by: JillLynn on December 19, 2014, 12:57:26 pm: what was really special about it Mario was all the callers that started calling in sharing their experiences.
It was a great format to share all kinds of things.....but that was then......radio as we all know has lost that personal touch.

Thankful for our forum.......no corporation can take this away from us.
Title: Re: Starting Harvoni!!
Post by: catniss on December 19, 2014, 06:11:43 pm: New to the forum and love reading posts. Started harvoni Dec 4th. Taking for 8 weeks since under 6 ml viral load and f1 scaring. Type 1a. Was approved by insurance company a week after my doc started paperwork for me. $17 monthly co pay which I will gladly pay. Was overwhelmed when I got the news because my doc said so many people have not been approved. My insurance is thru my retired military spouse. Was very overwhelmed when I got the pills. Mine are mailed to me. Surprised I did not have to sign for them. I have had no side effects at all. I am a gym rat(run,weights,Pilate's,spin) and I have kept up my 4-5 day a week workouts. Have always ate healthy and only drink water or tea. 1 coffee a day. I was kinda confused about the people getting multiple blood tests thru treatment so I asked my nurse. She said there is no reason for them because it will not affect my treatment plan at all. In other words my meds will not be increased or treatment extended. I will have blood work at the end of my 8 weeks then at 14 weeks then my final be at 20 weeks. Really hoping all goes well.
Title: Re: Starting Harvoni!!
Post by: KathyNJ on December 19, 2014, 06:27:30 pm: Hi everyone,
Jill, you are a survivor and so happy you can let go of your past. For that matter, we are all survivors of a disease that has such a negative connotation. Personally, all my family and friends knew from the first diagnosis and had to be educated about hep c. I purposely never went for a manicure/pedicure after I learned I had Hep C because I did not want to unwittingly give this burden to anyone else. I always inform doctors/dentists and never had any negative feedback. Today, I was at my heart doctor for a checkup and told him I had started treatment. He was delighted and said: the government should make this treatment available to everyone --even people who are incarcerated. Treat it like the Jonas Salk polio vaccine and wipe this terrible disease off the face of the earth. Wow! I agree with him totally. They have all these AIDS fund raising benefits, so why not Hep C benefits with all the profits going to help those not lucky enough to get this lifesaving medicine. I have one week finished with 7 more to go. 2015 will be a great year for all of us.
Title: Re: Starting Harvoni!!
Post by: sunrise on December 19, 2014, 06:32:21 pm: Hey fellow warriors
hope all is well. Hey JillLynn that is so weird when you were talking about your childhood. I mistaked it for mine! although I did not go off the rails until my divorce. My transmission although was due to a transfusion in the late eighties. Not that I was an angel by any means. But I feel that I am NOT a victim and I am happy to be alive today. I think it's great that you guys want to do helpful things for people that don't know about hepatitis C. Rubye posted Abbvie was approved today for their treatment! 2 more doses for me then no more S/O! Yay... Sunrise
Title: Re: Starting Harvoni!!
Post by: catniss on December 19, 2014, 06:34:52 pm: Wow Mario just read your post about how you "came out". You are brave. When I found out in 1995 I told my parents but that was it. I have only recently told my best a nurse and my boss. Hep c has not slowed me down in any aspect of my life. I have always been ashamed of having hep c. I know its crazy thinking. I got it after one of my many brain surgery's/tests when I was an infant in 67. ☺
Title: Re: Starting Harvoni!!
Post by: mario555 on December 19, 2014, 07:23:13 pm: I don't know who is brave! Me telling people around me about Hep c or you guys stories about brutal childhood stories and health problems!! I also read about stories of courage in these posts and I can only congradulate all of us for what we've done under a harsh overhanging clouds. We're hopefully will all be cured soon and we'll come out stronger from our Hep c. Most of us don't drink, drug, we eat well and exercise (I'm not necessarily talking about me because some of you put me to shame...). We will have a wonderful 2015...
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on December 19, 2014, 07:41:38 pm: You are all so amazing, thank you for sharing this little piece of your life with me, I am honored to know all of you!

Mel
Title: Re: Starting Harvoni!!
Post by: catniss on December 19, 2014, 08:12:01 pm: I feel great physically its mentally I'm having issues with. I will never forget the day I got the news from a young blond haired navy lieutenant. I thought I was going to pass out. Over the years I have ignored it at times, pissed off at times, until last year going for a biopsy. Before that never really went to a GI doc because did not think there was anything that would help me. Hated my last year doc so at the insistence of my go I tried a new doc in Nov that told me about harvoni. It was like a divine intervention. For the first few weeks after getting the pills I keep a daily journal of med time, gym activity, and what I had to eat and drink all day. I discovered I was doing this because I was so afraid of eating or drinking something that would be harmful to the meds effectiveness. After talking with my nurse I decided to stop journalling because it was harmful to my mental health. It has been a very long 2 weeks but will get my shit together and make it thru.
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on December 19, 2014, 09:14:25 pm: Catniss,

So glad you found us and are sharing here. You will find the most amazing supportive group of people here. You aren't alone and we are all going through the mental game. I had horrible brain fog for so long I didn't even know my brain was fogged any more. Now all of the sudden my brain feels so much clearer, I am still losing words here and there or forget how to spell something but nothing like it was. Today for instance I couldn't remember the name of the place I made reservations for my daughter's birthday lunch, that's so insane to me!

Oh yeah, the only really bad thing besides alcohol is to take an antacid within 3 hours of the pill! I mean just drink lots of water, be consistent on your time you take you pill and eat as healthy as you can. No extra meds without checking with a dr.

There is so much knowledge on the forum, you can always ask! Anyway welcome and we are happy you are here!

Mel
Title: Re: Starting Harvoni!!
Post by: catniss on December 20, 2014, 07:46:59 am: Mel
Thanks for the support. The occasional brain fog I get I attributed to either my blond roots or old age kicking in. My anxiety is hereditary (thank you mother). I actually check my pill box throughout the day to make sure I have taken my pill. At my two week nurse visit my blood pressure was so high that she started talking blood pressure meds. I told her wait till my eight week appointment you will think I am having a heart attack. I drink chamomile and lemongrass tea and workout a lot to combat this. The endorphins from my gym activity are amazing. We are all going to kick hep c's butt!
Have a good day
Catniss
Title: Re: Starting Harvoni!!
Post by: John3333 on December 20, 2014, 09:56:04 am: Good morning guys, good to hear from all of you!

Texasdave, sorry about your personal life, remember, everything happens for a reason. You'll be Hep C free and ready to move on.

Mario, I think I was surfing the net the one day looking for Hep C info and actually came across your story. Very gutsy of you, and very much appreciated. It does seem Hep C plays second fiddle to HIV. Not sure why that is, Magic Johnson and others have helped that cause.

There is a stigma to the disease, I could never reveal it at my work. It affects my thinking as well, like retirement planning, stuff like that, the question always pops into my head, will I be here then? Can't wait to get hat monkey off my shoulder!

Welcome catniss! I totally relate to the endorphins, LOL.

I remember when I told my wife I had Hep C back when we were just dating, I was scared she would give me the heave ho, but instead she married me. I am sure there are days she wishes she had that one back, LOL! I am a lucky guy as she puts up with a lot of my shit, including all the Hep C stuff.

JillLynn, that's pretty cool you were on the radio. Hep C affects so many people, just look at the diversity on here, for example. I wish there wasn't such a stigma.

Anyway, good to hear from all you guys. I just took pill number 8 today. Can't wait to be over this dreaded disease.

Enjoy the weekend getting ready for Christmas/Holidays.

John.
Title: Re: Starting Harvoni!!
Post by: icantwait on December 20, 2014, 10:16:48 am: I am grateful to be alive today. I got the decease in 1979 as a package deal with hep B. It was not fun going through heroin withdrawal with a bilirubin count of 29. That did get me to change addictions. Three years ago I walked into detox with a blood alcohol of 0.407 and I was purple from the PCT and Cryoglobulinemia. For me, the treatment is clearing up the wreckage of my past.
I am open about my alcoholic recovery if it comes up in conversation. If I can help one person give up the fight against addiction and seek treatment it is worth it. Other than my wife, children and health care providers, I have hidden my HCV status. Many people shun those with hep C and think it can be passed on easily. I was married to my late wife for 25 years and never passed it on to her or my children. I have finally told my brothers and sisters after I started the Harvoni. I am chicken and may be more open if I make SVR24.
It is day 9 and I have had no side effects. I am F3 and first week AST 15, ALT 13, Bili 0.4 down from 25, 23, 0.5. My issue is the a2-macroglobulin which I will not get until week 4 with the VL. I felt more energy after day 4, but I have had good days since becoming sober. I still have leg edema. Patience Grasshopper.
Thank you all for sharing. Today is a beautiful day and I will enjoy each moment of it.
Title: Re: Starting Harvoni!!
Post by: KathyNJ on December 21, 2014, 12:37:19 am: Has anyone on this blog heard or used Fibroscan? It is a non-invasive liver scan that can tell what stage your liver is at without going through the painful needle liver biopsy. Cost is only about $200 vs $2,000 for needle biopsy. In Nj the only place to go is St michaels Hospital in Newark -- way too far from me. I wonder if any private doctors in south NJ have one. Also a blood test called Fibrosure, which measures some abnormalities in the blood that relate to the liver -- maybe the tumor marker test blood test that my Dr. Schedules is the same thing. If anyone knows about these tests, please let me know. Getting into the Holiday Season by swallowing my orange "mink coat" pill every night. Basically symptom free! Compared to interferon this is a cakewalk. Keep the faith fellow hoppers!
Title: Re: Starting Harvoni!!
Post by: Lynn K on December 21, 2014, 01:11:57 am: I have done a fibroscan but in Seattle. Quick question if you ar already on treatment why the fibroscan?
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on December 21, 2014, 01:45:34 am: I had the fibrosure done at LabCorp. Don't you have copies of your blood test results? It's pretty clearly marked on the results. It will say "HCV FibroSURE" and have the results below.

If it's something you really want the Insurance Company may not cover it because it's still considered experimental. Just ask your doctor to add it to the list next time you have your VL taken.

If you are on treatment you really don't need these right now and I would definitely not just get a biopsy unless it was absolutely mandatory!

Mel
Title: Re: Starting Harvoni!!
Post by: catniss on December 21, 2014, 07:46:27 am: Kathynj
My new doc told me about these tests and said they do those all the time versus the liver biopsy. She said they very seldom do biopsy any more. My liver biopsy that I had done last summer was a cake walk and I have a very low tolerance to pain. Didn't feel a thing and no pain afterwards. It was a hassle to have to lie still in the hospital for 8 hours then total bed rest for 3 days afterward. My insurance picked up 100% of tab.
Title: Re: Starting Harvoni!!
Post by: mario555 on December 21, 2014, 08:39:05 am: Catniss, you must be way tougher than me with your biopsy! I've had 2 over the years and both were a terrible experience! It hurts an awful lot, you can feel the 'stabbing' and the doctor repeats it 2-3 times. On the other hand, fibroscan is non-invasive, rapid and appears to be exact (I did it twice in 2 weeks and got the same results). I would definitely suggest to try and find one of those machines rather than being stabbed again with a biopsy...
Title: Re: Starting Harvoni!!
Post by: catniss on December 21, 2014, 08:59:39 am: Mario
I have a very low tolerance for pain. I was deathly afraid of the biopsy that is why I put it off for so long. I felt nothing. I actually asked the doc to show me what she had taken because I did not think she did anything. She showed me a little jar filled with what looked like water and a tiny piece of liver floating in it. I know weird right.
Title: Re: Starting Harvoni!!
Post by: John3333 on December 21, 2014, 11:00:24 am: Good morning guys!

I had a biopsy done in 2003 I think. It was pretty easy, although the doctor was supervising a resident who actually did the needle work which freaked me out a little. If I recall, they gave me a general around the area where they stick the needle in, and they guide it with ultrasound I think. Anyway, mine went smooth, but any invasive procedure is a risk. If you are getting treated with Harvoni, I am not sure of the need at this point.

@icantwait, congrats on your sobriety! Yes, carrying the message of hope will help you stay sober for sure. Not many people know about my HCV status either, in fact, I broke the news to my mother in law the other day, she seemed to take it in stride. She's been battling breast cancer for 6 or 7 years now, so she gets it.

Just took my 9th pill, if this is it for sides, piece of cake. What a miracle drug compared to the Int/rib!
Title: Re: Starting Harvoni!!
Post by: HHburme on December 21, 2014, 12:38:43 pm: John3333...........#9 #9 #9 9th H pill for me today also !!! Smooth sailing so far.
KathyNJ..........Love your "mink coat" Mel........love all your comments, so supportive and caring catniss.......I'm wit ya and Dr bob too
I've had 2 liver biopsy also, 2004 and 2009. Really don't like like the procedure and told my Dr that I did not want a another. They did a blood test called fibrosure last month. Don't really know how accurate it is, just saying

Fight the Good Fight
Title: Re: Starting Harvoni!!
Post by: KathyNJ on December 21, 2014, 03:14:58 pm: Thank you guys for all the information about the Fibroscan and Fibrosure blood tests. I had a regular needle biopsy done last year and it wasn't as bad as in times past. Not that I need a new one, but wish the Fibroscan had been available last year. I am learning so much from the great people on this blog (like I said before you learn more from people with hep c than you do from your doctor). I tried finding a support group in the past but none existed where I live. Why is this disease so shrouded from exposure -- they have all kinds of alcohol/narcotics/diabetes/cancer support groups -- but almost none for hep c. We all have stories and experiences that we would gladly share with those newly diagnosed, but our only forum is through these blogs. Checked my blood tests and never was given a blood test with Fibrosure scoring. Mine were just viral load tests. I guess every doctor (mine is a gastro specialist, not a hepatologist) does their own thing. Good luck to all of you as we go into the holiday season. Our gift of good health is waiting for us in 2015.
Title: Re: Starting Harvoni!!
Post by: John3333 on December 23, 2014, 11:29:34 am: Hi guys, HHburne, glad to know some one is right with me!

Last night I woke up in the middle of the night with a pounding headache and little diarrhea. I am not sure if it's because I have a cold, which, given my whole house has been sick one right after the other, is certainly a possibility. I feel a little better now, took my pill this morning, I was scared I was going to puke it up, but no problems. Nothing is going to keep me from taking the damn pill!!!

Anyway, keep up the fight, we'll all get cured of this sneaky awful virus!
Title: Re: Starting Harvoni!!
Post by: HHburme on December 23, 2014, 12:00:19 pm: J3.... bad headache last night for me too, thinking it is from my BP which has increased since tx. I'm right wit ya buddy, nothing stopping this Harvoni train !!
fight the good fight !!
Title: Re: Starting Harvoni!!
Post by: Tutu on December 23, 2014, 01:10:50 pm: Quote from: mario555 on December 21, 2014, 08:39:05 am
Catniss, you must be way tougher than me with your biopsy! I've had 2 over the years and both were a terrible experience! It hurts an awful lot, you can feel the 'stabbing' and the doctor repeats it 2-3 times. On the other hand, fibroscan is non-invasive, rapid and appears to be exact (I did it twice in 2 weeks and got the same results). I would definitely suggest to try and find one of those machines rather than being stabbed again with a biopsy...

I'm with you Mario, I have had 3 biopsies the first one didn't feel a thing the last 2 were terribly painful. I am on Day 13 and have been feeling ok I do notice if I don't drink enough water then I get the headaches. Has anyone else had any intestinal issues with this med? I'm finding I have to take Citracel a couple of times a week. I also think maybe I should have my BP checked since there are other people BP has been higher since starting this stuff.
This by far is the best Christmas gift I could have received just to be healthy again. I am anxiously awaiting my first blood draw in early Jan. 2 weeks down 10 more to go but hey who's counting!

Tutu
Title: Re: Starting Harvoni!!
Post by: mario555 on December 23, 2014, 01:57:52 pm: Thanks for the support about the pain associated with a biopsy. I was starting to feel a bit cry baby... My blood pressure shot up in the first 4 weeks but I took aggressive natural changes and my blood pressure is not lowered to 135/90. Too high but bearable. I walk at a medium pace 2x a day, lowered my salt intake, drink lots of water and most importantly, I don't let my renewed enthusiasm take over and have me try to do too much! I try to remain calm. I developed tintinnitis (sorry for the spelling, I hear things) and when the background noise increases, it means I'm losing my relaxed pace.
I'm now 6 weeks into Harvoni and I surprise myself undertaking activities I wouldn't have been capable of doing before (like going to my wife's business supper with a gang of drunken individuals)
When I take the pill at 4:30 each day, I have no more side effects to speak of. So go ahead future warriors, the treatment is fairly easily tolerated!
Title: Re: Starting Harvoni!!
Post by: catniss on December 23, 2014, 02:36:07 pm: I am so sorry Mario if I made you feel bad about the biopsy. I did not mean to. You are a brave warrior fighting this horrible disease. My BP is high but I have white coat disease (meaning deathly afraid of any medical personal). Any kind of exercise is awesome for your BP and mental health. Just read an article stating just that. Took pill 19 and no side effects at all. Second months shipment of pills arriving Friday. For the people having stomach issues ginger or mint tea that could help. I drink loads of it. No stomach issues just love it. I'm kinda of a tea addict. Besides exercise I drink lemongrass tea for anxiety. Everyone have an awesome holiday!
Title: Re: Starting Harvoni!!
Post by: catniss on December 23, 2014, 07:15:37 pm: Question for everyone. I feel like I am the only one waiting to get blood work until the end of treatment. Is anyone else waiting?
Title: Re: Starting Harvoni!!
Post by: mario555 on December 23, 2014, 08:54:40 pm: It might be a good idea from your doctor to make you wait... I got my blood analysis done after 4 weeks and I still had fairly high enzymes (no VL yet). I compared my results with others in the group and I wasn't impressed! This is despite knowing Harvoni will punch through anything eventually. I'm in for 24 weeks but I still worried. This is maybe why your doctor said to wait??
Title: Re: Starting Harvoni!!
Post by: badbradley on December 23, 2014, 08:58:29 pm: Hello catniss,
I'm holding my breath right along with you! EOT 11/10, labs on 2/3. Lately been humming that tune by The Beatles - there will be an answer "Let It Be".
When are your labs?
Quote from: catniss on December 23, 2014, 07:15:37 pm
Question for everyone. I feel like I am the only one waiting to get blood work until the end of treatment. Is anyone else waiting?
Title: Re: Starting Harvoni!!
Post by: Lynn K on December 23, 2014, 09:05:16 pm: Hi catniss

That does seem unusual at least to monitor you other blood counts to make sure you are ok on treatment.

Sorry haven't read the whole thread is there a reason your doctor has said he doesn't at least want to monitor your liver functions and blood counts to ensure you aren't having any unusual reactions to treatment?

Best to you
Lynn
Title: Re: Starting Harvoni!!
Post by: Lynn K on December 23, 2014, 09:13:03 pm: Hi again catniss

OK so I read up and see you are treating for 8 weeks and are fairly healthy.

Yeah I wouldn't worry about not being tested really you are only talking about one test at 4 weeks they aren't doing and by the time the got your results you would only have 3 weeks to go anyway.

The big test for all the marbles is the one 20 weeks after you started aka 12 weeks post treatment. If you are SVR12 (sustained viral response) you are cured yay!!!
Title: Re: Starting Harvoni!!
Post by: KathyNJ on December 24, 2014, 12:26:38 am: Hi Catniss,
My doctor is exactly like your doctor. He says to only do blood tests for everything after treatment (for me it is an 8 week course of treatment). My viral load is a little over one million and liver is still at stage zero -- no scarring. I do have anemia from hep c but they consider it mild. No treatment needed. I'm wondering if anemia goes away after the hep c is gone. I never did question the doctor about the blood testing time schedule until I read about all the various blood tests people are taking. I'm just two weeks into treatment and so far no side effects. It's no different than taking a vitamin pill. Hope the next six weeks are the same. Maybe because we are on a shorter treatment course, they just wait till it's completed. Merry Christmas to all and without a doubt, it's going to be a great New Year for all of us on Harvoni.
Title: Re: Starting Harvoni!!
Post by: catniss on December 24, 2014, 03:00:09 am: Thanks for the input everyone.
Badbradley: having first bw done at end of treatment at 8 weeks then again at 14 weeks then final done at 20.
Feeling great and in pretty good shape so I guess that is why no labs. I imagine if I was feeling bad they might do some. Thanks for the earworm yes I am going to let it be

Mario: yes I am a worry wort just going to keep on pushing thru
Merry Christmas everyone
Title: Re: Starting Harvoni!!
Post by: JillLynn on December 24, 2014, 10:06:49 am: there will be an answer "Let it Be".....perfect song Brad!

Merry Christmas to all of you!
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 25, 2014, 11:24:46 pm: A Very Merry Christmas from me too and welcome to those of you I haven't met yet![size=pt] I've been off line for a while and am now on day 23 of treatment and minimal side effects so far - hard to believe I'm already this far along - seems like just a day or so ago that I took my first pill! My insurance approved my second bottle of Harvoni and TLC got it to me Tuesday - New Year's Eve I have labs done and take the last of the first bottle. Starting my New Year right by opening the second bottle! One more after that to go. Yes, "Let it Be" is the perfect song:) Wishing us all the good fortune of being able to say "cured" in 2015! .....Islandgirl

Hey, Texasdave, you still in Chicago? Thinking of you and hoping you're doing well :) [/b][/color][/size]
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on December 26, 2014, 12:45:39 am: Hey Island Girl,

Nice to hear from you, Merry Christmas to you as well. Sounds like you are doing well and ready for the New Year! I couldn't agree more, wishing everyone the good fortune to be able to say "cured" in 2015!

Mel
Title: Re: Starting Harvoni!!
Post by: Texasdave on December 26, 2014, 07:37:36 am: Good Morning Everyone !

Merry Christmas (ok, a day late) to All. I hope all of you had a great Christmas and are looking forward to an awesome, HEP-Free year.

Island girl: So glad to hear you are doing well. What a great way to kick in the new year cracking open that bottle of Harvoni ! I'm back home in Houston where it's much warmer, thank goodness.

Today is day 12 for me - no problems at all so far. Feel great... all's well.

Ya'll have a great day and let's get this done.

Dave
Title: Re: Starting Harvoni!!
Post by: catniss on December 26, 2014, 08:09:08 am: Receiving my second and last bottle of freedom today. Like island girl taking my last pill of bottle 1 on new years eve. Every morning when I take my orange dose of happiness I sometimes get overwhelmed at the thought of being hep c free. I love imagining the harvoni dropping down into my body and exploding like a daisy cutter whipping out hep c. Have an awesome day everyone!
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on December 26, 2014, 09:48:30 am: Morning Dave and Catniss

Dave, so good to hear you made it home safely with your Orange Pills in tact! Hope you had a Merry Christmas and it's awesome to hear when someone is breezing through treatment. It makes me smile in my misery!

Catniss, you get to start the new year like IslandGirl, how fun is that? Magic Pill for 2015, the year that's going to bring SVR to almost all of us. We have pretty good odds going and I'd bet on this team for sure!

Have a great Friday,

Mel
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 26, 2014, 10:14:33 am: Good morning everyone!

Mel, I could just 'ditto" everything on your email, and Catniss, I got cold chills and tearful (the good kind) when I read that you will be starting on your last bottle of freedom as I start my next to the last bottle! Texasdave, welcome home, I'm/we're glad to hear you are doing so well, and back out of the land of snow. Mel, you bring so much to us all in spite of your own "misery" that I'm always in awe and say an extra prayer that it will be a better day for you each day.

For some reason, I woke up feeling alone and lonely, but logged in and here you all are and I know I'm not alone in this. I'm sure it's just the emotional swings of treatment, the Holiday, whatever, but I'm very grateful to have my forum family - thanks for always being there. ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: catniss on December 26, 2014, 10:21:42 am: Island girl
You are never alone. We are all somewhere out there fighting the good fight with you.
Catniss
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on December 26, 2014, 10:50:10 am: {{{{{{{ISLANDGIRL}}}}}}}

Sending you a big hug from New Jersey!
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 26, 2014, 11:23:28 am: Thanks so much guys, I needed that! Hugs back!!
Title: Re: Starting Harvoni!!
Post by: Alaskagirl on December 26, 2014, 03:23:36 pm: I'm new to this forum.

Starting week 7 of Harvoni. I have had periods with the waves of extreme fatigue, primarily within the first few weeks. I also had an odd, throbbing joint pain in those first weeks, which moved around (now my ankle, then ten minutes later my wrist, then a knee...). Mentally I just told myself that the medication was moving around my body, eradicating viral "safe houses" within my joints. Yes, I know that logically it doesn't work like that, but it helped me to not get panicky. I haven't noticed any of that burning joint pain for some weeks now.

I have more energy than when I started (I'm going to the gym again, and walk my dog for an hour or two each day), but still have moments in which my thinking feels "thick" and I want to lie down where I'm standing, and rest...I took FMLA leave at work, but am just keeping it "in my pocket" so that I can take an hour here and there to rest if I need to.

I've been far more open about this at my work than I intended. It is the most meaningful and important thing in my life right now, and I just decided "screw the secrecy" and told many of my co-workers. Hep C is so stigmatized that I've kept it a secret my whole life - I'm done... Having access to a true treatment has radicalized and empowered me.

I've had Hep C since I was 16, so 32 years.

My most recent blood test shows my viral count as undetectable, but we'll see if it sticks. I am - of course - nervous about being part of that little 2%, but that's just the part of me that is scared. I'm so hopeful that it will work, and that I can let go of all the fear and limitation that has accompanied this disease - assuming that my life span would be limited and making choices based on that belief.

So, occasional super-fatigue and roving throbbing joint pain. No headaches.
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 26, 2014, 07:11:30 pm: Hi Alaskagirl, and welcome!

You'll find lots of support here and from the people at the Harvoni Support Path and lots of other sources. I do think you'll feel more relaxed and less fearful if you find someone to help you work through your fear. It sounds like you're doing great but are afraid to trust it and are sort of sabotaging yourself emotionally. I hear a brave strong woman in there who is doing wonderfully, but the whisper of doubt and negativity girl is trying to kick her butt.

I think all of go through this in one form or another and just have to find healthy ways to get up past it. Fear isn't usually a rational foe we can always battle without professional help, but without getting past it we're letting it pour more poison into our bodies and minds. I've had Hep C since a blood transfusion 35 years ago so I certainly identify with where you are - we've walked in each others shoes though we never met; doesn't matter how we got it, it's still been a major chunk of our life span and it's time to let it and the fear go. Not preaching to you hon, just hoping you will find a way to not let the fear diminish your accomplishment and the joy of finally being able to say "cured". I'm giving myself this same message, BTW :), guess I needed it too! ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: catniss on December 26, 2014, 07:29:20 pm: Islandgirl: when you wrote that it sounds like alaskagirl was doing great but that she is having a hard time trusting that feeling you hit the nail on the head for me. I have felt great since starting harvoni and can't believe that this orange pill is going to wipe out this disease from my body. But I know it is. That goes for you to alaskagirl.
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 26, 2014, 07:52:11 pm: Catniss, after I posted that I found myself hoping I hadn't come on too strong, but I also realized I was "reading between the lines" responding to what I sensed was happening with Alaskagirl, with so many of us, and I wrote from the heart. Fear is a poison and can be paralyzing - we can't let it win - we deserve better. The men and women who connect on this forum are all brave and strong, but we are human and vulnerable as well. Together, we can help each other through what for most of us has been a very lonely and fearful journey. Trust? Damn, it's a hard thing to do, but we're in a safe place here. ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on December 26, 2014, 07:55:12 pm: We are a funny bunch here, bonded for life by this awful infection but the positive for me is that it brought me to all of you. On my down days you are there to lift me and on your down days I will lift you. If we are both down then we will drag each other up or someone else will come along and rescue us.

The best time is when we are all up and happy; that's going to be when we are SVR and we will all get there one step at a time.

Mel
Title: Re: Starting Harvoni!!
Post by: RiseUp on December 26, 2014, 07:57:34 pm: Hi Mel, how are you today?
Title: Re: Starting Harvoni!!
Post by: catniss on December 26, 2014, 08:01:05 pm: Absolutely Mel absolutely
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 26, 2014, 08:05:10 pm: You always hit it right on, Mel! What would we do without our Mel - hope you're feeling well today - we love you! ...Islandgirl
Title: Re: Starting Harvoni!!
Post by: John3333 on December 26, 2014, 08:29:24 pm: Quote from: catniss on December 23, 2014, 07:15:37 pm
Question for everyone. I feel like I am the only one waiting to get blood work until the end of treatment. Is anyone else waiting?

Hi catniss my doctor is making me wait until the end of treatment as well, (12 weeks). I really didn't ask her why since I was there picking up the Harvoni. I was so excited to get the pills I really didn't give it much thought. I felt like I had just robbed a bank and I wanted to get the hell out of there, LOL. I do remember her saying that she had attended a liver conference and that's what they were starting to recommend. Maybe because just about everyone will finish the treatment regardless, and with 95% success rate, why bother getting the blood work done halfway through I guess.

HHburne, glad your right with me, day 14 today. I am noticing that the headaches are becoming less and less of an issue. Like catniss, I am having trouble wrapping my head around the fact that this one pill with little to no sides is going to cure me of the the Hep C. I worry I will be one of the 5% that doesn't clear the virus, but if that's what is meant to be, then so be it. I think we are gaining on the beast very quickly now, and within 5 years there will be 100% treatments out there.

I read all the posts, appreciate you guys with the honesty, lots of love and support here, it's great! We never have to be alone when dealing with this.

Merry Christmas and Happy Holidays to all you guys.

John.
Title: Re: Starting Harvoni!!
Post by: John3333 on December 26, 2014, 08:37:47 pm: @islandgirl, when you mentioned "that last bottle of freedom" an image if Mel Gibson in the movie Braveheart popped into my head. Remember, when he is standing there screaming FREEDOM at the top of his lungs.

That will be us soon, can't wait!
Title: Re: Starting Harvoni!!
Post by: catniss on December 26, 2014, 08:41:57 pm: That is exactly what I was thinking john3333. Received my second and last bottle today.
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 26, 2014, 08:52:35 pm: John3333, LOVE IT!!!!!!!!!! That image and that FREEDOM scream is etched in my mind!
...Islandgirl
Title: Re: Starting Harvoni!!
Post by: readynow on December 27, 2014, 07:14:24 pm: Hello:
Going to take the first pill tonight. Been waiting for this for years. Time has come today.
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 27, 2014, 08:01:48 pm: Welcome, readynow! Congratulations and thanks for joining us as we move toward our mutual goal. I agree, the time has come - I wish you an easy time and a complete cure. I'm excited for you ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on December 27, 2014, 08:02:25 pm: IslandGirl - I love you too Sister!

Readynow, Welcome, great name and congratulations. It's such an amazing feeling to take that first pill isn't? I really think anyone who has been there totally gets it and as usual the rest of the world thinks we have lost our minds, That's ok, I need to be a little more mindless once in a while!

Thinking about 2015 and how much happiness it's going to bring to most of us and beyond grateful to all of you! Remember to do something kind for someone else whenever you can, it doesn't have to be financial in nature, it can be as simple as a smile or hello to someone lonely!

Now I am going to sit back and imagine my forum sisters and brothers all holding hands on top of a mountain screaming FREEDOM!

Mel
Title: Re: Starting Harvoni!!
Post by: catniss on December 27, 2014, 08:52:37 pm: Readynow
Welcome!
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 27, 2014, 09:24:55 pm: Mel, thank you; it's no wonder I/we love and appreciate my/our NJ sis!

I totally agree with you on doing something kind when we can. Being petite, I often have asked someone taller to reach something for me in a store - I'm not shy about asking nicely but many elderly or disabled people struggle but won't ask. Offering to help is such a small thing and one that gives us a good feeling too. We could all think of a million things that lift another's spirits and cost us nothing but a moment of time. Thanks for reminding us, Mel. Besides, it's healthy for our own body and spirit when we are kind and considerate to ourselves and others! ...Islandgirl
Title: Re: Starting Harvoni!!
Post by: matradee124 on December 27, 2014, 09:54:03 pm: Very nice :)
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 27, 2014, 10:35:36 pm: Thanks, matradee124 :)
Title: Re: Starting Harvoni!!
Post by: catniss on December 28, 2014, 07:57:54 am: We have more one than one thing in common islandgirl. I am also petite(4ft8in). I often wear tall heels(my friends call them hooker heels) when shopping and still have to ask for help. I have worked for a large nonprofit charity organization for 12 years. It does feel awesome when you can pay it forward.
Title: Re: Starting Harvoni!!
Post by: matradee124 on December 28, 2014, 08:05:48 am: Scorpio good luck congrats on ur time as the program teaches us 1 day at a time pray and God is good I have 32 pills to go my blood work came back Undetected we r all Blessed this Fourm gave me the strength to Believe I was not alone hamels to the Red Sox another pennet for u guys
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 28, 2014, 11:57:41 am: Catniss, I think we're both blonde too? I used to love wearing heels like that, still love them but have problems with an old injury to my right ankle so now only wear them when when I can mostly sit. I'm right at 5', was 5'1-3/4.

Scorpio, how are you? Where are you? Haven't heard from you in a while. If I have pizza now, I always think about you :) Wish I could have sent you some of the turkey soup I made yesterday - tons of veggies in it too. My (long term) boyfriend's son (who calls me mom and is staying with me this week) told me it tasted too good to be" healthy food". Since I can't send it to you, I'll send you a big cyber hug :) Check in, I know matradee124 and I are not the only ones who want to hear from you! ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: readynow on December 28, 2014, 05:50:40 pm: Hi all:

Well the first day dose wasn't bad. I couldn't fall asleep, so just tried to rest most of the night. I felt it coming on strong, but it wasn't really unpleasant. I'm ready for round two. Appreciate the welcoming words.
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 28, 2014, 06:28:20 pm: Good for you, readynow!
My cell phone alarm set for 6:00 EST rang to let me know it was time to take my 26th magic pill and then I logged on to see your post and it made me happy to know you've taken the first step on the Harvoni path to a new healthy you! Keep your spirits up and stay positive - you're on your way!! ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: catniss on December 28, 2014, 06:36:14 pm: Ready now
My first week of treatment I was a wreck mentally. At my two week nurse appointment my blood pressure was so high she was talking blood pressure meds(I refused). Now I'm on day 26 and have calmed down a little. I have had no side effects and only have to take for 8 weeks. Just so excited and nervous to finally be free. I am kilt shopping for April.
Title: Re: Starting Harvoni!!
Post by: Tutu on December 28, 2014, 09:26:02 pm: Quote from: catniss on December 27, 2014, 08:52:37 pm
Readynow
Welcome!

Welcome readynow! This is an awesome site because we all relate to HepC ! You are not alone good luck on your journey I am on Day 18 and besides the fatigue feeling ok. Drink lots of water and try to get out for a 15-20 min walk everyday( this has really helped me). Let us know how you're doing.
Title: Re: Starting Harvoni!!
Post by: readynow on December 29, 2014, 06:18:52 am: Hi: Feel pretty good today. Gonna go to work and I will make it through the day. (Positive thinking). Have a good day everyone.
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 29, 2014, 01:15:39 pm: I saw this earlier today and wanted to share it with everyone, it really hit home with me (if the first word bothers anyone, substitute what works - you get the concept)

KISS YOUR LIFE
Accept it just as it is.
Today. Now. So that those moments of happiness you're waiting for do not pass you by. Kiss your life. Today. Now. Just as it is.

.....Islandgirl
Title: Re: Starting Harvoni!!
Post by: matradee124 on December 29, 2014, 03:23:00 pm: Very nice island Girl happy new year young lady :) ;) :-*
Title: Re: Starting Harvoni!!
Post by: Alaskagirl on December 29, 2014, 06:35:09 pm: IslandGirl -

I think you did read a little bit more between the lines of my message than was there...

I think it is important that we can talk openly about things like worrying that we will be in the 2% that the miracle cure doesn't cure without it being read as self-sabotage. I believe that anyone facing such a round and promising statistic (98%) will have a moment in which they thing "S***, I sure hope I'm not the 2%." I don't think that this means they need to seek professional help to mitigate their fear...

I (like many of us, I'm sure) identify as very brave. Braver than most. I've lived with this disease my whole life, and it has not stopped me from travelling the world, birthing and raising amazing children, climbing mountains, sailing foreign seas, playing in bands, taking risks... What I was trying to talk about (and I'm willing to take responsibility that maybe I wasn't clear) is that every time we do something that transcends the "reasonable limitations" that most folks would put on living with a life threatening illness, it requires that we work through an imposed fear, and that being "cured" and having that go away in only 8 weeks after carrying it for decades, is a dizzying reality.

What will be different should I be entirely cured? I will no longer have to be conscious of having excellent health insurance, and could choose to leave my profession. I will no longer have to research/be aware of traveling/living in third world countries and the availability of medical care. I will be able to count on twenty additional years of vital lifespan. I won't have to inform all my adventure partners that I carry Hep C before undertaking wilderness trips so that they know to use the gloves in my first aid kit if I am injured. I don't have to have "the talk" with prospective romantic partners in which I first must debunk the belief that it is an STD, and then must explain that should they get involved with me, they would potentially have to move through illness challenges with me. I will be able to drink alcohol if I choose, without guilt or reservation - something I've never done.

So, what I'm dealing with (and many of us probably are) is a giant aspect of my being and lifestyle will (God willing) soon just be a distant memory, and I'll be constructing my life and making choices from scratch. My life will be an open and spacious vista, with which I can do anything I choose. And that is exhilarating, and thrilling, and just a little bit scary. But the scary is a teeny drop of water in an ocean of exhilarating, so no biggie.

As to "sabotaging my cure" with fear, not so much. I came into it in excellent health, I'm doing all positive things to surround and support my treatment (eating clean, daily exercise, no toxins, body work, spiritual work). I am surrounded by loving people who are giving lots of positive support. And, if for any reason, this treatment doesn't stick, I'm sure that it represents some mysterious destiny that God intends. I can't imagine that anyone facing something with so much hope and promise wouldn't worry that it might not work for them; to assume that you are automatically part of the 98% strikes me as a little bit...well...entitled. If those are the stats, then out of 100 of us, it will not work for 2 of us. And with all of us having waited so long for a cure, I send love and compassion to whoever those 2 are and recognize that it could easily be me...

that's just the pragmatist in me, not counting my chickens and all. Not throwing the party until the day of the party... but in my day to day reality I am full of joy, and the zinging dancing energy of hope...
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 29, 2014, 08:04:11 pm: Thanks for writing back, Alaskagirl.

First, let me say that I didn't mean to imply that you, personally, needed professional help - so I apologize if it sounded that way. Many times I write in a way that whoever reads it, or needs it, may hopefully benefit -and that can include myself.

WOW!!!!! You have certainly led quite a life. and you are an excellent writer!

Most of us can certainly identify with the things you wrote about your life with Hep C - we've lived it in one way or another too, and face those same challenges - many of us have far greater challenges than you or I from what I've learned on the forum. One does not diminish the other. We are all in this together striving for the same goal.

As far as "self-sabotage", everyone does that at sometime whether they realize it or not. This was not targeting you personally other than to alert you to the possibility - we all need to watch for this. It's unfortunate that I made you feel you had to defend yourself. It sounds like you're doing great and I wish you only good things. ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 29, 2014, 08:08:44 pm: Thanks matradee124, and right back atcha, young man! :) ;) :-*
Title: Re: Starting Harvoni!!
Post by: matradee124 on December 29, 2014, 08:28:12 pm: Island girl u probley surf u r 1 postive woman-- :-* NICE
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 29, 2014, 09:08:50 pm: Island girl, yes; surfer, no; positive woman - always my goal
It's working better for me with all the help and encouragement from my Harvoni family here on the forum, and that includes you, matradee124 Thanks!
....Islandgirl
Title: Re: Starting Harvoni!!
Post by: matradee124 on December 29, 2014, 09:35:20 pm: And thank u my son taught FGC 1 year what part of fla u at I'm in philly :)
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 29, 2014, 09:44:13 pm: NE FL - St. Augustine area. I spent most of my growing up years in Hawaii so the Island life is most natural to me. ....Islandgirl :)
Title: Re: Starting Harvoni!!
Post by: matradee124 on December 29, 2014, 09:46:43 pm: Bet a nice tan sun no good on meds aloha :)
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 29, 2014, 10:05:31 pm: Hopefully meds will be over before summer for sure! Aloha back, matradee124

Hey Scorpio, if you're still on, write and let us know how you are doing!

....Islandgirl
Title: Re: Starting Harvoni!!
Post by: matradee124 on December 29, 2014, 10:08:30 pm: ;)Sleep tight talk to u tomorrow thank u I'm also Scorpio
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 29, 2014, 10:12:45 pm: I'm laughing, but so not fair, "also Scorpio"! Sleep well, I'm off for the night - my boyfriend is getting in from NC and just called to say he's almost here. Have a Happy New Year if I don't get a chance to check in as much as usual. ...Islandgirl
Title: Re: Starting Harvoni!!
Post by: matradee124 on December 29, 2014, 10:17:39 pm: Quality time for u guys have a gd Ngt an a happy new year to u to :)
Title: Re: Starting Harvoni!!
Post by: scorpio on December 29, 2014, 10:33:50 pm: Happy holidays to everyone!! Havnt been on in a while but glad to see so many new peeps got approved and are joining us.

Ill be catching up on reading through the posts tonight but for now just a quick venting sesh..

So i get a letter from xpress scripts sayin suttin like my doc. has to get me reapproved and for me to have him contact them or i will be responsible for last 2 bottles of harvoni.. I call xpress, lady told me i was good and she found nothing wrong... Couple days go by and i get another letter. So turns out xpress is not using caremark anymore and went with acredo for specialty pharmacy.. My doc office told me they would call them and square it away and call me back. Fast forward 1 week and still waiting for a call. I called again today and he tells me same thing (he would call them and call back) never did... so i called acredo my self and they claim they just got the script from my dr. office today.. Hmmmmm

Somebody messed up and i dont like it. My last pill of first bottle i take tomorrow and acredo says it takes 72 hours just to process it nevermind the 1 or 2 day shipping.. So basically i could go a couple days taking none which really pisses me off. Unless doc has samples, which I would have known, if his useless assistant called me back. Im calling bright and early tomorrow to get to the bottom of this..

Other than that, 27th day and feel good most days. Headache and fatique come and go. New years starts clean eating and back to gym for this guy.

Thank u for lettin me share my misfortunes and welcome to the newcomers..
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 29, 2014, 10:45:52 pm: Thanks :) Sounds like you're doing well, in spite of everything - that's a happy thing! Tomorrow is 27th day for me too. Starting the New Year with bottle 2:) Good luck!!!!!!!!!!!!!!!
...Islandgirl (in response to both of your last posts) :)
Title: Re: Starting Harvoni!!
Post by: Texasdave on December 30, 2014, 08:42:48 am: Good Morning All:

Scorpio: I can't believe the issues you are having with your "providers". That almost seems illegal, though I'm not a legal expert by any stretch. Keep fighting.

Island Girl: Hope your boyfriend's visit is great and that you all have a wonderful time together. It's awesome to have someone that your care for and that cares for you there with you.

I'm on day 14 with no side effects at all. In fact, I find myself worrying that I should be feeling SOMETHING. But, I have to keep believing that the Harvoni is doing its thing and that I'll be CURED soon.

I hope all of you have a great day, feel good and stay positive. Believe that everything will work out ! I'll be thinking of you. Keep posting...I'm sending out positive vibes and praying for all of us.
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on December 30, 2014, 08:55:08 am: Quote from: scorpio on December 29, 2014, 10:33:50 pm
Happy holidays to everyone!! Havnt been on in a while but glad to see so many new peeps got approved and are joining us.

Ill be catching up on reading through the posts tonight but for now just a quick venting sesh..

So i get a letter from xpress scripts sayin suttin like my doc. has to get me reapproved and for me to have him contact them or i will be responsible for last 2 bottles of harvoni.. I call xpress, lady told me i was good and she found nothing wrong... Couple days go by and i get another letter. So turns out xpress is not using caremark anymore and went with acredo for specialty pharmacy.. My doc office told me they would call them and square it away and call me back. Fast forward 1 week and still waiting for a call. I called again today and he tells me same thing (he would call them and call back) never did... so i called acredo my self and they claim they just got the script from my dr. office today.. Hmmmmm

Somebody messed up and i dont like it. My last pill of first bottle i take tomorrow and acredo says it takes 72 hours just to process it nevermind the 1 or 2 day shipping.. So basically i could go a couple days taking none which really pisses me off. Unless doc has samples, which I would have known, if his useless assistant called me back. Im calling bright and early tomorrow to get to the bottom of this..

Other than that, 27th day and feel good most days. Headache and fatique come and go. New years starts clean eating and back to gym for this guy.

Thank u for lettin me share my misfortunes and welcome to the newcomers..

Scorpio,

You need to email the magic Express Scripts address our friend Lynn K found, it's been very helpful for a few of us. They deal with Accredo which is what I have too!

Here's the address: ExpressRxHelp@express-scripts.com

and here's the link to one of her posts about it: http://forums.hepmag.com/index.php?topic=1866.msg9376#msg9376

Hope they can help you as well!

Mel
Title: Re: Starting Harvoni!!
Post by: Lynn K on December 30, 2014, 09:58:10 am: Yup not a fan of express scripts but I have no other choice they are they only insurance my company provides

Good luck
Title: Re: Starting Harvoni!!
Post by: matradee124 on December 30, 2014, 10:06:54 am: Great job Lynn I pray I don't relapse so far undetected after 8 wks solv/ol 31 pills to go I was also giving a hard time but I wasn't taking no for an ans be persistant I mean persistant happy new year All
Title: Re: Starting Harvoni!!
Post by: mario555 on December 30, 2014, 10:11:13 am: To Lynn K. Happy to hear that you got results with a little "prod" on your part! All that b. s. about holding back treatment while insured is unnerving. Bureaucrats will now decide on appropriate treatments? It's starting to get ridiculous to see "big boys" duking it out to prove themselves while patients are hurting is insane. Good luck with your providers. Here in Canada it is easier ; nobody pays! I'm lucky to have the only insurance company that covers any medication prescribed with a max 50,000 per year. I was lucky to be at year end so as to get 2 times 50,000... Good luck to all...
Title: Re: Starting Harvoni!!
Post by: Alaskagirl on December 30, 2014, 02:45:20 pm: Islandgirl - Thanks, and I send you wishes for a lovely new year...

Scorpio brings up a great point - I had to RIDE my doctor's office to coordinate the pills and insurance. Because I live in rural Alaska, I had to go to Anchorage to meet with a specialist, who is the one who prescribed the Harvoni for me.
The prescription was fulfilled by a specialty pharmacy in California and express mailed to Alaska (to me, rather than the doc).
I figured that it was the job of the doctor's office to coordinate my second bottle of pills arriving, but LUCKILY I woke up nervous and paranoid a few days before the start of the second bottle, and called the pharmacy to confirm. Turns out that there was a problem with my insurance covering the second bottle, but no one had contacted me (or the doctor's office). It took me hours to get a pre-authorization from my insurance company (really?? they already paid a LOT of money for bottle #1, why would they shut down for bottle #2?). Turns out it was a paperwork snafu. Many phone calls later all was rectified and the bottle was on it's way via overnight express. It made it to me on the day that I needed that next dose.

Lesson learned - The initial set up and confirmation through an insurance company does not mean you can relax. You should call the pharmacy to confirm shipment for each bottle - a week ahead would have been a good idea, with just a couple of days it became a major emergency.

With a medicine that costs this much, losing days in the middle of treatment is just ludicrous.

Don't assume that your doctor or insurance company is making these "confirming" phone calls...

I'm on the 8 week plan, so only needed the 2 bottles, but if you're doing the longer plan, I'd make all those calls for each transition to a new 28 day bottle.

Sending wishes to all of us that 2015 is a year of transformation and healing in our lives...
Title: Re: Starting Harvoni!!
Post by: catniss on December 30, 2014, 06:03:09 pm: Wow! The insurance/pharmacy issues some of you have experienced are ridiculous. My doc did all the set up paperwork. The first pharmacy that called ( can't remember the name) said they could not cover the meds because they did not have a contract with my insurance (retired military). The person I talked with was very apologetic. A day later I got a call from CVS caremark and we set up a delivery date for the Monday after Thanksgiving. I called them that Monday to make sure they were on the way and of course there was a paperwork problem. I was not happy but it got resolved the next day and I received a call from CVS confirming delivery to my house. While on the phone I made sure I had the correct number to call back for refill 2 and I called two weeks ahead a time and set up delivery. I also had them email me the tracking info. They arrived last Friday. Surprised though they started out in the Boston area, then to Kentucky, then back to the northeast. Weird.
Texasdave. I took number 27 this morning and am also worried that I have had no side effects. I feel like I have more energy.
Islandgirl. Have an awesome visit with your boyfriend.

Happy hep c free 2015 everyone!
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 30, 2014, 10:14:46 pm: Hi everyone, just a quick note since I couldn't resist taking a moment to check in:)

Thanks for the nice wishes for the time my boyfriend is here - he's also my best friend and we've been a couple for 14 years - sure nice not to have that "hep C" talk with a prospective partner again that Alaskagirl referred to. I know that's something we all find difficult. There is no easy way to find the courage and the words for a discussion like that. God bless us.

Tonight I took my 28th and last pill from the first bottle (somehow had marked it incorrectly on calendar and thought it wold be tomorrow; not so) So, start my 2nd bottle on New Year's Eve. I actually got a letter from Humana Medicare Complete PPO before my first bottle approving me for 3 months - that was my first clue that I actually got approval! Later that day, I got a phone call from TLC-Rx advising me of same and helping me get a grant for my co-pay (which thru Humanna was astronomical), next a call from the person with TLC who scheduled the FedEx 2-day shipment; FedEx texted me the tracking number and it actually arrived the day before scheduled. With the second bottle, the procedure was the same, although I called them before they called me. I hope the 3rd and last bottle will work as smoothly. Persevere is all we can do; stay strong and positive and never give up - sending positive energy and well wishes to everyone. ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: John3333 on December 30, 2014, 10:52:30 pm: Hi guys! I see the Jersey girls on here acting up, love it! I have not been on for a couple of days, so I had some catching up to do. I am close to you guys, in the Lehigh Valley in PA, right over the line from NJ. Weird huh? We're all kind of close.

Anyway, I saw Alaskagirl's response, and I am like her, until they tell me I am clear, I am not celebrating. I have 9 pills left to my first of 3 bottles, and so far other than a few headaches no problems. Almost too good to be true, if you have done the int/rib for 48 weeks, then you know this is a piece of cake for most.

I saw where some of you are having trouble with your doctors and pharmacies getting getting refills. THIS IS UNACCEPTABLE. Once you start the meds is extremely important that you not stop I am told. Scorpio, maybe there is a way you can pick up the meds yourself?? I actually called both my speciality pharmacy and my doc today, just to make sure of continuity with the meds. With Thursday being a holiday I didn't' want any screw ups. The pharmacy assured me they will be shipped to my doc and I can pick them up Monday.

Good to hear from all you guys. Texasdave, I totally understand how you feel, it's like I can't believe it's working without having to feel sick or like crap. I also feel like i have more energy now, maybe the it's because the meds are working and the virus is starting to die? Who knows, I like it though.

I am hoping and praying for you and guys who are having pharmacy/doc problems. Welcome to Readynow and the other new people.

Keep sending the positive energy island girl!
John.
Title: Re: Starting Harvoni!!
Post by: Mugwump on December 31, 2014, 05:01:09 am: Quote from: BattleTheBeast on December 27, 2014, 08:02:25 pm
IslandGirl - I love you too Sister!

Readynow, Welcome, great name and congratulations. It's such an amazing feeling to take that first pill isn't? I really think anyone who has been there totally gets it and as usual the rest of the world thinks we have lost our minds, That's ok, I need to be a little more mindless once in a while!

Thinking about 2015 and how much happiness it's going to bring to most of us and beyond grateful to all of you! Remember to do something kind for someone else whenever you can, it doesn't have to be financial in nature, it can be as simple as a smile or hello to someone lonely!

Now I am going to sit back and imagine my forum sisters and brothers all holding hands on top of a mountain screaming FREEDOM!

Mel
Thanks for the great post which I feel bears repeating and to everyone here for their encouragement on this journey.

Today I received news that my ALT is down to 28 after only 24 days of treatment. The holidays messed up my blood work timing a little so most likely after the full month my ALT reading is now in the low 20s.

! will know how close to cleared I am in a week or two. So today the tears of joy and flood of good emotions were a tad overwhelming. I have not felt this energized and stable on my legs and in spirit in over 15 years!

Today I made a good curry for my spouse when she got home from work, cleaned house, and managed to play my classical guitar with my left leg elevated longer that 20 to 30 minutes without pain or difficulties. I feel blessed and will do whatever I can to encourage others and help whenever possible.

Having to be on a 24 week treatment is a bit of a downer but I know that right now I could easily do some volunteer visitation work and play some of my music including some very special pieces of music at a seniors center where I once worked cooking and cleaning.

Indeed it is a great thing to try to enrich the lives of others whenever and however you can!

Cheers an tears
Eric
Title: Re: Starting Harvoni!!
Post by: catniss on December 31, 2014, 08:04:28 am: Starting the new year off right! Took last pill of bottle 1. Halfway thru treatment! Got haircut yesterday. Getting 1.5 hour massage this morning. Rocking outfit picked out for party tonight. As you see trying to stay positive. Not going to be in full celebration mode until the end of April when I get my last lab work complete. Then oh what a celebration it is going to be.
Happy 2015 everyone!
Title: Re: Starting Harvoni!!
Post by: catniss on December 31, 2014, 08:06:23 am: PS
Mugwump
Wish there was some way to hear you play your classical guitar. I bet it is beautiful.
Title: Re: Starting Harvoni!!
Post by: Islandgirl on December 31, 2014, 08:50:28 am: Good morning:) I'm getting ready to get lab work done this morning and am on track with Catniss, starting the second bottle today! However, I have one more bottle after this to go. Mugwump, I love classical guitar (most guitar, but especially classical) and I can hear you playing and feeling the joy in my heart. You, indeed, had an awesome day - thanks for sharing it with us. My sweetie cooked dinner for us too last night and will be going to the lab with me in a bit (not necessary, but we try to spend all the time together that we can when he's here). Better get going but I loved this morning's posts and just had to comment. Weather permitting we'll be watching the fireworks display on the beach and listening to a band called Red River later tonight. To be alive and headed toward a cure is the best of all!

Happy New Year, everyone!!! ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: catniss on December 31, 2014, 01:08:22 pm: I can relate islandgirl. During my husbands navy years(20) when he was not out floating around under the ocean on a submarine, we would spend every minute we could together. I could go to the beach tonight but I would probably be myself. A bit cold here.
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on December 31, 2014, 01:12:40 pm: Hey all,

Happy New Year, I will be starting bottle 2 of Harvoni tomorrow to celebrate the New Year. I just got back from a visit with my IdHero and he said that for the first time since he started seeing me in late July my platelets are in a great place and all my other numbers including my BP are great! He's really watching my progress because I will be the only patient who did 8 full weeks of S/O before switching over to Harvoni for we what we hope will be 24. He's really interested in how I progress since he's so involved with all the clinical trials and no one else has done back to back like this. Nothing like being a guinea pig!

Anyway we were talking about the insurance companies refusing to approve anyone F2 or below and what they are doing in his practice is getting them into the different clinical trials or at least on a waiting list for one. He said that he is hoping that the move by Express Scripts gets the price lowered to something a little more reasonable on the other medications but that XScripts is still approving other treatments besides the V Pak if it's clinically necessary and you have a doctor willing to battle for you. That's where it stands as of today.

Peace and SVR in 2015!

Mel
Title: Re: Starting Harvoni!!
Post by: KathyNJ on December 31, 2014, 01:40:12 pm: Happy New Year to everyone on this Harvoni path to hope. Today, I have finished 3 weeks on the miracle pills. I also got fedex delivery of bottle 2 of the pills. Five weeks to go. So far, the side effects are so minimal ( sleeping a little more at night) that I continue to be amazed. My first doctor visit will be on Jan 5th, but the doc says no blood work until the completion of my treatment -- 8 weeks. I'm going to question him about this since reading how often most of you get blood work done. I'm anxious to see how I'm progressing. As far as getting the second bottle, I called the specialty pharmacy to arrange for the delivery. They require that the bottle be sent fedex with a signature required. My copay was $100 for each bottle. Didn't qualify for $5 coupon from My Support Path but the ordering/reordering process with Aetna was very easy. I am very upset that some people are getting a runaround from their insurers. It is so unfair. I look forward to all of us being cured in 2015!
Title: Re: Starting Harvoni!!
Post by: John3333 on December 31, 2014, 09:57:15 pm: Happy New Year fellow fighters!!

@KathyNJ, My doc is not requesting blood work for me until I am done with the 12 week course, there are others as well who have mentioned this, I guess that may be the new protocol. The suspense will be killing me.

catniss, you sound so pumped I love it! Got you hair done, massage, new outfit, good for you! I am home with my sweats on LOL, sitting here relaxing, just put my 6 and 4 yo girls up to their rooms, this is way late for them! Hope you had fun.

Welcome Mugwump! Happy for your good news! I too would love to hear that classical guitar. So many interesting people on here, nice to have support.

@ Mel, I know you have done a lot of research over the years. I know that a liver with fibrosis will heal once the virus is cleared, at least some what. What about if you have cirrhosis? Will the damage start to reverse itself once you clear the virus? I am F3, although my doctor is skeptical of that given all the other data he has on me, he thinks I am still F2. I am just curious, I have read some conflicting stuff on this subject and I am interested in your thoughts.

Anyway, Happy New Year guys keep up the fight!
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 01, 2015, 01:22:16 am: Hi John,

Happy New Year! I am not the person to ask about research, I just found out I had Hep C and Cirrhosis in July 2014 and it's been a whirlwind since then. I only know what my Doctor has told me and what I have read but anything is possible. The liver is the only organ that does regenerate.

I'm F4 and I sure do hope that it does heal itself but if I don't get any worse that will work as well!

Mel...
Title: Re: Starting Harvoni!!
Post by: catniss on January 01, 2015, 08:54:22 am: Did something last night I have never done. I got to share my excitement about being halfway thru treatment with someone else besides my husband. Shared with my friend who is a nurse and she had read that in the next 6 months more treatments are coming and that the medical people predict in 20 years hep c will be abolished. Progress is moving very fast in the hep c world. I know everyone here started the new year just as great as me.

John
I have no kids. I'm jealous with two girls you probably have lots of princess tea parties. I only have my cats to do such things with and they are just not into it.
Title: Re: Starting Harvoni!!
Post by: readynow on January 03, 2015, 04:56:14 am: Hi: Given the half lives of the two drugs within Harvoni , does anyone know how soon after one begins taking it will the maximum level of it be achieved within the body? TIA
Title: Re: Starting Harvoni!!
Post by: Lynn K on January 03, 2015, 04:59:47 am: Here ya go Greek to me

http://www.rxlist.com/script/main/mobileart-rx.asp?drug=harvoni&monotype=rx-cp&monopage=10

Absorption
The pharmacokinetic properties of ledipasvir, sofosbuvir, and the predominant circulating metabolite GS-331007 have been evaluated in healthy adult subjects and in subjects with chronic hepatitis C. Following oral administration of HARVONI, ledipasvir median peak concentrations were observed 4 to 4.5 hours post-dose. Sofosbuvir was absorbed quickly and the peak median plasma concentration was observed ~0.8 to 1 hour post-dose. Median peak plasma concentration of GS-331007 was observed between 3.5 to 4 hours post-dose.

Based on the population pharmacokinetic analysis in HCV-infected subjects, geometric mean steady-state AUC0-24 for ledipasvir (N=2113), sofosbuvir (N=1542), and GS-331007 (N=2113) were 7290, 1320, and 12,000 ng•hr/mL, respectively. Steady-state Cmax for ledipasvir, sofosbuvir, and GS-331007 were 323, 618, and 707 ng/mL, respectively. Sofosbuvir and GS-331007 AUC0-24 and Cmax were similar in healthy adult subjects and subjects with HCV infection. Relative to healthy subjects (N=191), ledipasvir AUC0-24 and Cmax were 24% lower and 32% lower, respectively, in HCV-infected subjects.
Title: Re: Starting Harvoni!!
Post by: John3333 on January 03, 2015, 04:31:56 pm: Hi guys. Today was my 22nd pill, man it goes fast. Whatever headaches I had are gone for the most part. Other than that nothing, amazing!

Hi Mel, I was just curious about regeneration as I started to do some research on it. I find it interesting that your one of the first to have the S/O, and then start the Harvoni right after.

@catniss, LOL yes we do have the little tea set, and I sit in the little chair that I barely fit in and they make believe they serve me tea and cookies hahah. I love it! One thing about having Hep C, or any other life threatening thing, you tend to enjoy those moments, those little things in life, because you never know what tomorrow brings. I try to stop and smell the roses every now and then. I often think, one of the good things about having the virus, is that it made me slow down and appreciate things I probably wouldn't have before.

As Islandgirl would say, sending positive energy your way :)

John
Title: Re: Starting Harvoni!!
Post by: HHburme on January 03, 2015, 10:49:11 pm: John3333................22 for me also. Pretty smooth sailing so far.

Scheduled for colonoscopy this week and a little apprehensive about having this procedure while taking Harvoni. Anybody else had this while treating ????
Title: Re: Starting Harvoni!!
Post by: readynow on January 04, 2015, 07:31:20 am: I would check with the Dr. that prescribed the Harvoni to see what he/she thinks.
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 04, 2015, 12:42:36 pm: Hi John,

Yes, I am a bit of an anomaly and my doctor is very involved with clinical trials at his practice so they are watching me very closely. You never know, it's may be a new treatment path one day.

simeprevir and sofobuvir for ?? weeks then go right into
ledipasvir and sofosbuvir for ?? weeks

It's a feasible option if you think about it but without clinical data I don't think it will make it too far. But it will be great data for those who have a bad reaction to the simeprevir like I did. Honestly that medication really through me for a mental loop as well. Now that I have been off of it for 4 weeks it's amazing how much better I feel mentally.

I am curious about others who have been on Olysio, do you feel like it had an impact on your mental state?

I just pray that we all are going to start hearing SVR as the year progresses; I know this has been a brutal battle for many people.

Mel
Title: Re: Starting Harvoni!!
Post by: John3333 on January 04, 2015, 09:03:40 pm: @HHburne, this is too funny, I turned 50 recently so my doc has been pestering me about the colonoscopy as well. She's the same doc managing my Harvoni treatment. I told her I would deal with the colonoscopy after treatment, one thing at a time!

Mel, I am so glad your feeling better. This Harvoni, for most of us anyway, is a breeze compared to the int/rib or the Olysio. I am grateful to have the chance to take advantage of it. I am also conscious of the fact many more people are being denied this miracle drug, so I do my best to be a good patient, take the meds at the same time every day. NO ALCOHOL. I got mad when my doc told me she was pretty sure that one of the other patients was using alcohol while taking the Harvoni. So many people are trying to get it, if your not serious about treatment, then don't bother I say. If you need help with the drinking then get it and get your butt to meetings, this is your life your talking about.

Anyway, keep up the fight!

HHburne, let me know how you make out with the Colonoscopy, not something I am looking forward too, LOL.
Title: Re: Starting Harvoni!!
Post by: Lynn K on January 04, 2015, 09:49:52 pm: HH

I am having an upper endoscopy in Feb basically the same except for the prep our favorite part lol.

The only thing I am concerned about is forgetting to take Harvoni that afternoon. If your doc does have any concerns about the anesthetic please let us know. I know I am curious about that.
Title: Re: Starting Harvoni!!
Post by: HHburme on January 04, 2015, 09:55:05 pm: Trying to think up any excuse to get out of it......lol.
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 05, 2015, 01:24:30 pm: Well, I hate to say it, but guess I have to recommend the dreaded colonoscopy. I had one in the summer (same doc as for my hep C) after years of putting it off. The doc and I were both shocked to find I had a "few cells" that could have developed into cancer, so I have to have another in 5 years. Based on everything she knows about my health she never expected to find this in a small polyp they removed. I will say, it wasn't as bad as I'd feared (the prep is the worst part), I slept through the whole thing - not like the sygmoidoscopy type where you know just what's going on. Not anyone's fav, but they wouldn't have found those cells otherwise.

I'm happy to hear that things seem to be going well for everyone, though I haven't really had time to read all the posts yet. Day 34 for me and things are going well, few headaches and low energy at times but might have that off and on anyway:) Next Monday I meet with my doc to see what my labs said and just touch base. I think I'm the first patient she has on Harvoni, or certainly in the first group - I hope the others are doing as well too.

Had a great New Year's Eve - walked down to the pier to watch the fireworks display and listen to the bands playing (which I can hear from my house too) then went back home, sat around the fire-pit, roasted marshmallows and listened to the rest of the music there. Quiet and perfect. Happy Monday, everyone!
....Islandgirl
Title: Re: Starting Harvoni!!
Post by: HHburme on January 05, 2015, 07:39:06 pm: I know it is the right thing to do, thanks IG, never had one and 56 now.Take my Harvoni daily at 945 and my colonoscopy is scheduled for 845 with me showing at the hospital at 700. Should I try and take Harvoni earlier or wait until I get home ?? I was told to take it at the same time everyday. Been trying so hard to give myself the best chance possible to let the Harvoni do its thing.
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 05, 2015, 08:01:29 pm: Hi HH,

My suggestion - I'd call the Harvoni Support nurse and ask for an opinion, AND call your doc that prescribed the Harvoni and ask for their opinion. Hopefully, they will be the same. I know some people on the forum have had to change their time and were able to do so successfully. Personally, I might wait and take it when your procedure is over just to be sure nothing interferes with you getting the full dose. Good luck! ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: D Fischer on January 05, 2015, 08:02:51 pm: Hi All,
I started Harvoni on Jan 1, I was diagnosed back in 2000. I almost started the interferon route but backed out after reading about the side effects and the fact that I was asymptomatic. So far there have been little or no side effects with Harvoni I have not experienced the headache, the fatigue or the nausea reported by others in the forum. Granted it has been only 5 days but so far nothing that I can complain about. Last year I went through 43 radiation treatments for cancer and the bouts of fatigue were of the type that kept you sitting with very little energy for around 30 minutes to 1 hour before it abated and you could function. Anyone else out there that is experiencing little or no side effects?
Title: Re: Starting Harvoni!!
Post by: HHburme on January 05, 2015, 08:29:23 pm: IG thanks for the advice. Yes it is the same doc.

DFischer....welcome!! Glad to hear you are getting treatment. Really exciting times for us now. I'm a day 24 Harvoni hopeful and have had some side effects. My BP elevated, occasional headache, fatigue and tinnitus. All in all it has been fairly easy treatment so far.
Fight the Good Fight !!

John
Title: Re: Starting Harvoni!!
Post by: Katie on January 05, 2015, 09:26:02 pm: Quote from: D Fischer on January 05, 2015, 08:02:51 pm
Hi All,
I started Harvoni on Jan 1, I was diagnosed back in 2000. I almost started the interferon route but backed out after reading about the side effects and the fact that I was asymptomatic. So far there have been little or no side effects with Harvoni I have not experienced the headache, the fatigue or the nausea reported by others in the forum. Granted it has been only 5 days but so far nothing that I can complain about. Last year I went through 43 radiation treatments for cancer and the bouts of fatigue were of the type that kept you sitting with very little energy for around 30 minutes to 1 hour before it abated and you could function. Anyone else out there that is experiencing little or no side effects?

Hi DFischer and congratulations for starting the miracle cure! I have had mostly positive results and am waiting for my 4 week blood work results. You can check my other posts if you are curious. All and all I feel 100% better and have improvements in areas I didn't even realize came from Hep C. The 2 most noticeable is no longer having insomnia and sleeping well and my brain fog and fatigue gone. I can hardly believe it and this happened almost immediately. I have some hair thinning and lack of motivation in spite of feeling better but nothing major or anything to even complain about. Hope your treatment is as good for you!

Welcome aboard. This forum is so full of helpful information and everyone is so supportive. Glad you found it!

Katie
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 05, 2015, 09:28:31 pm: Welcome from me too, DFischer! I'm on day 34 and have only minimal side effects, if that's even what they really are. The first week or so I had NO side effects! Then I started getting a bit of nagging headache sometimes in the evening. I've never been a "headache prone person" so I decided it might be a side effect. Two 325 mg Tylenol takes care of it if it happens. Occasionally, I get a bit nauseous if I don't eat something close to the time I take my Harvoni. Mostly, this is a breeze!!!! :):)

John (HH?), I will tell you that the two pills they told me I could take the morning of my procedure (one BP med & one Mobic for my ankle) were looking back at me in the pic they gave me of the colonoscopy! They were at the top of one section like they hadn't taken the plunge yet - perfectly identifiable and not dissolved or working in my body at all! That's part of why I would probably take my Harvoni after to make sure nothing could deter it from giving me all it could - maybe it doesn't make any difference, but like you, I want to give myself the best chance possible for the Harvoni to work. PS, I'm older than you and this was my first colonoscopy too. ...Islandgirl
Title: Re: Starting Harvoni!!
Post by: catniss on January 06, 2015, 08:47:43 am: D Fischer
Welcome. I have been taking harvoni since Dec 3rd and have experienced no symptoms at all. I am on the 8 week treatment plan. Diagnosed in 96 and have been asymptomatic since. My morning gym workouts have not slowed down. I even have more energy. I take my harvoni in the morning between 6-7am. I too was offered the interferon and refused. Good luck with everything.
Have not hit 50 yet so no experience with colonoscopy yet. I won't even take an asprin if I get a headache.
Title: Re: Starting Harvoni!!
Post by: catniss on January 06, 2015, 05:27:11 pm: Hey tea drinkers. I was wondering if anyone could recommend a healthy liver safe herbal tea. I am getting bored with my organic chamomile. I did buy a lemon chamomile but thank god fully read the ingredients before brewing a cup. Along with chamomile it had skullcap and Valerian root which I read online could be unsafe.
Have an awesome night. Only 22 more days to go. Getting anxious. Trying to stay positive.
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 06, 2015, 05:49:33 pm: Hi Catniss, my mother likes Yogi Lemon Ginger and if Green Tea with herbs is OK with you (see below) Tazo Green Ginger - which has green tea, ginger and a touch of pear is a good one. There are others, of course, but these are what come to mind. Yes, I'm a coffee girl but also enjoy tea:)

Green tea is loaded with antioxidants, particularly catechins. These antioxidants have proven to be supremely effective at improving liver function, as well as getting rid of toxins and free radicals accumulated in the liver. It's a totally awesome tea for your liver, and having just a cup or two of it per day is a great way to improve your liver health!

I also like dandelion tea - really good for the liver. Only 22 days! I'm so excited for you and sending lots of positive thoughts and feelings your way - we're all on your team rooting for you! Feel a hug ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: catniss on January 06, 2015, 06:02:27 pm: Islandgirl
I actually just bought the tazo green ginger tea at target. It is so good. I do have a dandelion tea also that is so good. After my 1 morning cup of joe , I drink all sorts of green tea all day. Like to drink a caffeine free tea at night. Thanks for tea suggestions and hug. Frosty hug back from the great white north.
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 06, 2015, 06:24:53 pm: Catniss, you are welcome:) I forgot to mention Celestial Seasonings Sleepytime and Biglow Sweet Dreams, but you are probably already familiar with them - contain chamomile but also fruit and berry leaves, etc with no bad for liver herbs. There is one called Good Night but I forgot who makes it. You should find some new sweet dreams in the choices available - I'm going to take up your habit in the evening too :) thanks for the suggestion! ...Islandgirl
Title: Re: Starting Harvoni!!
Post by: HHburme on January 08, 2015, 02:31:16 pm: Colonoscopy done !! Doc said it was a good thing I didn't wait longer for the test as he found numerous polyps. Biopsy results and 4 week labs should have results in a week or two. Took my Harvoni after the procedure. Day 27 and still swinging, feel pretty good. Hope everybody is winning their battle against the dragon.
Fight the Good Fight !!
JB
Title: Re: Starting Harvoni!!
Post by: azsmitty on January 08, 2015, 04:49:45 pm: Hi everyone
I will be starting Harvoni on Wed. It should be here on Tue sometime. No problems
with prescription or getting a grant. Contracted Hep c in 1980 from a transfusion and
have tried interferon and ribavirin three times over the years. Girlfriend said if I tried it
again she would kill me. I think after interferon for 1 year, I can handle anything Harvoni can do.

Rich
Title: Re: Starting Harvoni!!
Post by: readynow on January 08, 2015, 05:21:25 pm: azsmitty

Welcome to the Club. I'm on day 13. I was always unwilling to try Interferon. Harvoni should no problem.
Title: Re: Starting Harvoni!!
Post by: Katie on January 08, 2015, 08:04:37 pm: Hi everyone.....

So here is my 4 week report!

End of November VL = 2.692,043 [/color][/b][/b]with normal ALT/AST
The virus fluctuated from over 2 million to over 16 million during the past 9 years and I am lucky to not have cirrhosis. This is my first treatment as the old horrible one was not worth it due to the small cure rate percentages, so I refused it.

4 week blood work: VL = 59

So for all of you newbies.....this is a miracle drug and welcome aboard! Don't Worry....Be Happy and we are around to reap the benefits. I feel so blessed and so grateful!

Katie
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 08, 2015, 08:41:40 pm: Oh, Katie!!!!!!!!! I'm so excited for you, I'm almost in tears!!! I learn my 4 week lab report on Monday and both excited and full of trepidation, and HOPE. Congratulations is an inadequate word, but here it is doing a happy dance :) CONGRATULATIONS, KATIE!!!!! ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: Katie on January 08, 2015, 09:03:17 pm: Thank you Island Girl! I will send you good vibes on Monday. My doctor and his entire staff were cheering today! They have 3 others on Harvoni and I think I was the first. It is so excited! My doctor said he has been following this research for the past 4 years and he was as excited as me! He has had cures with the S/O treatment as well, but this is better!!!!

I'll be thinking of you since we are in this together!

Katie
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 08, 2015, 09:29:05 pm: Thank you so much, Katie!

azsmitty - Welcome! I got so excited for Katie that I forgot to welcome you aboard. Like Katie and readynow, I didn't opt for any of the earlier treatments since the chances of success were so small that I couldn't see putting myself through them - I chose Milk Thistle and keeping track of research, being as good to my liver as I could, etc. I am so grateful for this wonder drug and my doc is too - she agreed that it was the first treatment she could recommend for me with good conscious. I hope your treatment goes well and we will all finally be able to say "cured" in 2015!

JB, I'm glad to hear about outcome of your colonoscopy and will be waiting to hear results of biopsies. I felt just like you, glad I went ahead and did it:) ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: D Fischer on January 08, 2015, 10:49:15 pm: Azsmitty welcome aboard, lots of good info and lots of great people
I started Harvoni Jan 1 and so far there has been no side effects I had a slight headache a couple of times since starting but I attribute it to hunger more than the Harvoni. Again welcome,
Title: Re: Starting Harvoni!!
Post by: D Fischer on January 08, 2015, 10:51:43 pm: Congatulations Katie that is definately great news!
Title: Re: Starting Harvoni!!
Post by: kate0b1 on January 09, 2015, 06:19:30 am: @john3333, so funny you mentioned having the colonoscopy, I am 55 and my GI doc told me after i relapsed in the fall, he would not give me the new meds (that were not even out yet) until I had mine done !
Title: Re: Starting Harvoni!! Lot Number
Post by: JoeK9999 on January 10, 2015, 07:32:17 am: I am curious. I have Harvoni Lot # 002984A
Does everyone have the same lot number?
Title: Re: Starting Harvoni!!
Post by: kate0b1 on January 10, 2015, 07:58:31 am: joe, i have 002985A, what made you think of that, if you don't mind my asking

kate
Title: Re: Starting Harvoni!!
Post by: JoeK9999 on January 10, 2015, 08:07:40 am: All 3 of my bottles that came one month apart are the same lot number.
The first 2 came from CVS Caremark and the third from Express Scripts.
I started treatment 2 weeks after it was approved. I was just wondering if we all
had the same batch.
Title: Re: Starting Harvoni!!
Post by: DeeDee on January 10, 2015, 08:17:38 am: Good Morning/Afternoon/Evening Everyone

I am expecting my Havoni to be delivered today, very excited. I will probably start taking it tomorrow morning. Just want to thank everyone for sharing. Prayers for all.
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 10, 2015, 08:58:34 am: Welcome DeeDee! The forum and the interaction here is indeed a blessing and I'm happy you've joined us. May your path be smooth and your cure complete :)

JoeK, I'm on day 39 and my 1st bottle was Lot #002984A - current is #002986A - one more to come :) Guess they've run through that first batch. We're extremely blessed to be on this Harvoni train I may be overusing the word "blessed" but can't think of one more fitting, other than to say I'm extremely grateful!

Mel, haven't heard from you in a while, I hope you're well?

Have a good weekend and stay warm as you can everyone. ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 10, 2015, 10:17:59 am: Hi IslandGirl,

I am doing ok, thanks for asking. Really busy at work this week!

My bottle is also from the lot you have 002986A but I still have 4 more to go after this one. I feel like I have been on treatment forever, I started on 10/10/14, needless to say it's going to be a long winter but I have SVR to look forward to right? If I get all 6 bottles prescribed my SVR24 date is 10/20/15.

Trying to stay inside and warm and wishing I lived by a beach somewhere in the Caribbean. Maybe someday my dream will come true; this Pisces craves the water!

Happy Saturday everyone,

Mel
Title: Re: Starting Harvoni!! Lot Number
Post by: Katie on January 10, 2015, 02:33:11 pm: Quote from: JoeK9999 on January 10, 2015, 07:32:17 am
I am curious. I have Harvoni Lot # 002984A
Does everyone have the same lot number?

Joe: My lot number is 2984 and then 2986 but there isn't an A after it.
Title: Re: Starting Harvoni!!
Post by: HHburme on January 10, 2015, 03:35:15 pm: Hi everyone !! DeeDeee you must be very excited. Blessed is a great word to express how you feel IG. That's how I feel !! Day 29 today, only 55 more to go. John3333 I'm still wit ya. Congratultions Katie !!!
Hoping everyone has a nice weekend!!

Fight the Good Fight !
JB
Title: Re: Starting Harvoni!!
Post by: Lynn K on January 10, 2015, 04:50:51 pm: Received from Express Scripts 1/5/15 sent from Tennessee. Lot 002986A, Exp 03 2016.

8 weeks down 16 weeks to go Harvoni
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 10, 2015, 09:29:54 pm: Hi guys, I'm finally finding time to write back. Mel, I'm so glad to hear you're doing OK. You've been through so much that I tend to worry a bit when I haven't seen you on for a while. PLUS, you're such an inspiration and so encouraging to all of us that I "need my/our dose of Mel" :)

Say an extra prayer for my mom who turns 91 next Saturday. She's got a cold that I'm hoping doesn't turn into something worse. Watching her like a hawk, at her age and her medical conditions, I just can't be too careful and an extra prayer won't hurt :) She came to live with me 6 years ago and I'm her caregiver - has Maccular Degeneration, COPD, heart issues and is on pain management for her back and hip as she is not a surgical candidate. I'm glad I have her with me - it was the right choice. Thanks for listening and for including her in your prayers. ...Islandgirl
Title: Re: Starting Harvoni!!
Post by: kate0b1 on January 11, 2015, 07:03:54 am: @islandgirl, I hope you mom is feeling better, sending thoughts and prayers (I'm not sure my prayers are valid though, I am a recovering catholic), my thoughts are good anyway. And happy almost b-day to her.

kate
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 11, 2015, 10:24:28 am: Thanks, Kate - I think all prayers are heard and we appreciate yours and your thoughts - and the happy almost b-day wish:) She's sleeping and sleep is a great healer for us all. If she starts running a temp I'm taking her to the doc just to be sure, don't like the sound of the cough. I'm learning not to be such an "oh, it'll get better soon" person after I wound up with walking pneumonia myself. Yes, I've had my shot:) Have a great Sunday! ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: DeeDee on January 11, 2015, 12:34:35 pm: Good Morning, Afternoon, Evening

First I like to thank everyone for the Welcomes, It is a blessing to have a forum where we can share our treatment taking Harvoni. I don't feel alone.
Yesterday I missed UPS and became sad. I called UPS because I was attempting to pick it up if I could. I was told I had to wait until Monday. Well G is good because the UPS guy came back and said they make a second attempt on the weekends I couldn't thank him enough and G.
My Lot # is 3444A and I took my first pill last night 01/10/15
We will be cured :)
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 11, 2015, 02:47:02 pm: Hi IslandGirl,

Thank you for the kind words, that was so sweet! Hope your Mom is doing better, you are a good daughter to be a her caregiver and you are also lucky to have all this time with your Mom so cherish each minute. I lost my mom when I was in my early 30's and she was only 58 due to pancreatic cancer. You are way more lucky than you can imagine so just remember that on the days she makes you a little crazy :)

DeeDee,

So cool that the UPS guy came back for you! I have my delivery set up so that I don't have to sign for it just in case I run out to the dr. or the store. I've been here each time but I can only imagine how I would feel if I missed them. You are on your way to undetected first so just listen to your body and you will feel like a new person before you know it!

Mel
Title: Re: Starting Harvoni!!
Post by: catniss on January 11, 2015, 04:41:09 pm: Welcome Deedee, azsmitty, and congratulations Katie. I am on day 39. Only 17 more miracle pills to go until I am done. Doctor appointment and first blood work on the 29th. Feeling great but Really anxious about it the closer I get.
Islandgirl
Hope your mom is OK. My aging parents are a 7 hour drive away and it is hard. They are in fairly good shape but still worry about them. They are the type who won't tell me if anything is wrong because they don't want to bother me. Drives me crazy.

Have a great week everyone
Title: Re: Starting Harvoni!!
Post by: dragonslayer on January 11, 2015, 05:13:20 pm: Quote from: BattleTheBeast on January 11, 2015, 02:47:02 pm
Hi IslandGirl,

Thank you for the kind words, that was so sweet! Hope your Mom is doing better, you are a good daughter to be a her caregiver and you are also lucky to have all this time with your Mom so cherish each minute. I lost my mom when I was in my early 30's and she was only 58 due to pancreatic cancer. You are way more lucky than you can imagine so just remember that on the days she makes you a little crazy :)

DeeDee,

So cool that the UPS guy came back for you! I have my delivery set up so that I don't have to sign for it just in case I run out to the dr. or the store. I've been here each time but I can only imagine how I would feel if I missed them. You are on your way to undetected first so just listen to your body and you will feel like a new person before you know it!

Mel

Mel, how do you set it up so you dont have to sign? You dont mean, they'll leave $30k worth of meds on your front porch, do you? ;)
Title: Re: Starting Harvoni!!
Post by: catniss on January 11, 2015, 05:16:43 pm: Dragonslayer
I did not set up anything with ups and they just left it at my door. No signatures. I was kinda surprised myself that they would just leave it. I worked from home both delivery days just in case.
Title: Re: Starting Harvoni!!
Post by: dragonslayer on January 11, 2015, 05:21:44 pm: Wow.. with the publicity stolen pkgs from people's porches have gotten this past holiday season, that sounds kind of irresponsible of them, considering the importance and the price of these meds... My specialty pharmacy only shipped Fed Ex, priority overnight, signature required. I really cant imagine any pharmacy shipping Harvoni without a signature; cant wrap my brain around it.
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 11, 2015, 05:28:54 pm: You're welcome, Mel. Yes, I'm so lucky to have her with me, even on the days she drives me a little crazy:) I'm so sorry about your mom. That's a tough loss we never really get over. My mom had a severe pancreatic attack several years ago, was hospitalized over a month and the doc thought she probably wouldn't make it. Thankfully it didn't move into cancer. Mom is feeling some better today, thank goodness.

DeeDee, like Mel said, try to get your delivery scheduled so you don't have to sign "in person" for it. I get mine FedEx, they text me the tracking # so I can go on line and choose my options, as well as see where it is. Last time I taped a note to my door with the tracking # listed, a range of dates (both times they have come a day earlier than specified), where to put it on the porch (where it can't be seen) and my signature. When I got home the note was gone and the package was just where I specified. TLC Rx requires a signature and I had to be gone for about an hour that particular day; of course, that's when it came. I hope you can do something similar with UPS.

Thanks, Catniss. My mom was an 11 hour drive from me so I drove or flew when I could and it was too easy for her to hide how much she needed someone with her. She was "living scared" and never wanted to go into assisted living and was so relieved when I told her I thought the time had come for her to live with me. It's been a tough adjustment, but she did what she had to do - we both did. I know you worry and you're right it's even harder when there's such a distance to travel. I hope they continue to stay healthy and have a back up plan they are willing to share with you:) Like you, I'm on day 39 with 17 more days to go on my second bottle - one more bottle after that. I have a doc appt tomorrow afternoon to talk about blood work I had done in December - trying to stay positive. I know that whatever the results, I still have the rest of my three months treatment to keep obliterating this vile disease! :) ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 11, 2015, 06:12:55 pm: Quote from: dragonslayer on January 11, 2015, 05:13:20 pm
Mel, how do you set it up so you dont have to sign? You dont mean, they'll leave $30k worth of meds on your front porch, do you? ;)

Hi DS,

Actually they know to put it between my screen and front door and then they lock the screen door but that's because I have had the same driver forever. I make it a point to be here the entire day a package from the drug store is coming however emergencies do happen so I have that covered as well. I am lucky enough to live in a very low crime community and area so nothing has ever been stolen even after sitting in front of the house for 2 days. I am in a townhouse so if either of my neighbors see something outside I haven't grabbed they will bring it into their place and send me a text to let me know. We all help each other like that.

Each time I order the medication I have to tell them no signature required. It's coming in an plain plastic FedEx envelope so there's no way for anyone to even have a clue what's in the envelope. The return address doesn't even say it's from the Pharmacy :)

Mel
Title: Re: Starting Harvoni!!
Post by: catniss on January 11, 2015, 06:31:14 pm: I also live in a very low crime area on the edge of a small new England town. Mine was packaged in a small very insulated cooler. I also had tracking info.
Title: Re: Starting Harvoni!!
Post by: dragonslayer on January 11, 2015, 08:51:16 pm: Quote from: BattleTheBeast on January 11, 2015, 06:12:55 pm
Hi DS,

Actually they know to put it between my screen and front door and then they lock the screen door but that's because I have had the same driver forever. I make it a point to be here the entire day a package from the drug store is coming however emergencies do happen so I have that covered as well. I am lucky enough to live in a very low crime community and area so nothing has ever been stolen even after sitting in front of the house for 2 days. I am in a townhouse so if either of my neighbors see something outside I haven't grabbed they will bring it into their place and send me a text to let me know. We all help each other like that.

Each time I order the medication I have to tell them no signature required. It's coming in an plain plastic FedEx envelope so there's no way for anyone to even have a clue what's in the envelope. The return address doesn't even say it's from the Pharmacy :)

Mel

That's cool that you can even do that. My specialty pharmacy wouldnt. I wonder who's on the hook for it if it's not signed for. I mean, would it be the pharmacy for not demanding a signature for delivery criteria, or the shipper.
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 11, 2015, 09:02:14 pm: Well considering that they track the trucks and can say exactly where they have stopped and for how long during a day I would assume they would first verify the truck did in fact stop at my place with a delivery. If I had a delivery that was due that day I am normally tracking it myself and waiting on it. If I wasn't then the minute it showed delivered I would make sure someone was around to grab it if I wasn't and if it wasn't there and the website said delivered I would be immediately on the phone with the shipper. I also have text notifications on my shipments and deliveries :)

I guess I am not worried about it because I am normally here working from home and go out of my way to be here on those days. It would only be an emergency that pulled me away and I'd probably ask my next door neighbor to be on the lookout because of what was being delivered.

Mel
Title: Re: Starting Harvoni!!
Post by: Katie on January 11, 2015, 09:08:45 pm: I don't think either would be responsible....just you! :(
Title: Re: Starting Harvoni!!
Post by: Lynn K on January 12, 2015, 12:52:22 am: Express Scripts requires a signature. I also live in a nice neighborhood but it is not your neighbors generally stealing your stuff.

Since I work second shift I get up extra early and wait for my delivery dozing on my couch. The first 2 bottles delivered arrived in the morning at 8 AM.

Last week I was the last delivery of the day so I was 2 hours late for work. I guess if I had a day job I would have missed a day of work for the "convenience" of mandatory home delivery instead of allowing me to drive to a specialty pharmacy to pick up my meds at my convenience.

Still not an Express Scripts fan.
Title: Re: Starting Harvoni!!
Post by: Katie on January 12, 2015, 01:35:19 am: I get mine from my local pharmacy, which I am glad about. I love my pharmacist as he has been so helpful over the past 2 decades!
Title: Re: Starting Harvoni!!
Post by: kate0b1 on January 12, 2015, 06:07:53 am: Mine also just get dropped off, when i was on triple therapy they would drop off a huge refriderated box because of the shots lol, now it is just one small package. And now I may be paranoid about not being home !! MY husband is usually home before me and is almost always home when the fedex guy comes, my shipment is coming on wed with next months pills, maybe i can talk him into staying home to wait for him.

kate
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 12, 2015, 08:07:31 pm: Doing the HAPPY DANCE - GOOD NEWS today!!!!!!!!!!
Undetectable virus on Harvoni at week 6! HCV RNA PCR Quant & HCV RNA PCR Quant Log - NOT DETECTED 12/31/14!! My platelet count is still a little low but much improved, ALT & AST are in the normal range!!! It's been forever since I've seen that:) The news was so overwhelming that I could hardly take it in; I still feel like pinching myself to be sure it's true. Next lab work will be one month after treatment and then 6 months after treatment. She's so sure it will still be fine that she said I could just call for the results. It may take that long for me to feel this is real:) Thanks for all your encouragement and support helping me make it this far. I know it's not over, but the relief and gratitude I'm feeling right now is both joyful and overwhelming. I love you guys and I'm praying we'll all be saying cured and shouting FREEDOM from the mountain top this year! ...Islandgirl
Title: Re: Starting Harvoni!!
Post by: Katie on January 12, 2015, 08:17:07 pm: YAY.. Island Girl. I am thrilled for you. YES! Keep up the good attitude and you are home free! I am so delighted that we are benefiting from this miracle drug and know there are millions more out there who will eventually be HepC free too.

Congratulations!!!!!!!

Katie
Title: Re: Starting Harvoni!!
Post by: Lukey on January 12, 2015, 08:29:10 pm: Quote from: Islandgirl on January 12, 2015, 08:07:31 pm
Doing the HAPPY DANCE - GOOD NEWS today!!!!!!!!!!
Undetectable virus on Harvoni at week 6! HCV RNA PCR Quant & HCV RNA PCR Quant Log - NOT DETECTED 12/31/14!! My platelet count is still a little low but much improved, ALT & AST are in the normal range!!! It's been forever since I've seen that:) The news was so overwhelming that I could hardly take it in; I still feel like pinching myself to be sure it's true. Next lab work will be one month after treatment and then 6 months after treatment. She's so sure it will still be fine that she said I could just call for the results. It may take that long for me to feel this is real:) Thanks for all your encouragement and support helping me make it this far. I know it's not over, but the relief and gratitude I'm feeling right now is both joyful and overwhelming. I love you guys and I'm praying we'll all be saying cured and shouting FREEDOM from the mountain top this year! ...Islandgirl

That's great to hear. Congrats. 8)
My ALT and AST have been 120 and 180 lately but I can remember them being over 300 before. It's time for me to hopefully get them in the right range.

I seem to see what some of you mean about increased appetite. Lately I've eaten 1 or 2 meals in the AM and at mid day, but couldn't eat much at supper. Now I'm wanting a meal at supper too. Maybe the food is now going to feed me instead of my 5.1 million Hep C virii. I feel like I've got a good cold at day 6, with a moderate but not debilitating headache but I don't think I'd stop Harvoni for any reason until 8 weeks is up.
Title: Re: Starting Harvoni!!
Post by: HHburme on January 12, 2015, 08:38:54 pm: IGirl.....Congratulations!!! Sooooo Happy for you !! It's really amazing to have this virus for so long and then it is UND. This Harvoni seems to be the real deal. I had my blood drawn today for 4 week labs and should get my results soon. Hoping that my results are similar to yours.
JB
Title: Re: Starting Harvoni!!
Post by: Lukey on January 12, 2015, 08:40:41 pm: Quote from: HHburme on January 12, 2015, 08:38:54 pm
IGirl.....Congratulations!!! Sooooo Happy for you !! It's really amazing to have this virus for so long and then it is UND. This Harvoni seems to be the real deal. I had my blood drawn today for 4 week labs and should get my results soon. Hoping that my results are similar to yours.
JB

Yes it is. I'm looking for the "Like" button.
Title: Re: Starting Harvoni!!
Post by: Lukey on January 12, 2015, 08:43:28 pm: Quote from: Katie on January 12, 2015, 08:17:07 pm
YAY.. Island Girl. I am thrilled for you. YES! Keep up the good attitude and you are home free! I am so delighted that we are benefiting from this miracle drug and know there are millions more out there who will eventually be HepC free too.

Congratulations!!!!!!!

Katie

This is really an inspiring forum and I'm so glad I decided to sign up here.
I have turned up my nose at HCV Tx for 25 years. I was waiting for something better, and now it has arrived.
Tomorrow is day 7 for me. I wouldn't miss a dose if my life depended on it.
Title: Re: Starting Harvoni!!
Post by: Katie on January 12, 2015, 09:19:12 pm: I'm not sure I could have gotten through this treatment so far without this forum, even though I am feeling better than I have in years. The mental anguish of not having others who understand and are so supportive would be devastating...and especially not knowing what to expect. I want to thank ALL of you for the information, sharing your private experiences, side effects and test results that have meant so much to me. I am on my 40th pill today, almost half way there so keep it up. I need you.

Katie <BIG SMILE>
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 12, 2015, 09:47:42 pm: Katie, I couldn't say it better! We are right together - today was my 41st pill at 6 PM

Thanks everyone - we need each other and we are so lucky to have this opportunity. Today, my doc told me that I am the only patient she has who got approved and she's always had success getting patients approved for the previous kinds of treatments. She's still trying to get them approved, she's not a quitter, but she and I are so very grateful that I'm able to have this wonder drug. Sending positive thoughts out to all of us and to those who area still in need of approval. God bless us all according to our needs. ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: KathyNJ on January 13, 2015, 12:44:16 am: Hi all,
Just a question for everyone. Just had an infected cyst removed today and told the derm about taking the harvoni and how I thought I could not take antibiotics during treatment.!she prescribed a topical antibiotic but said if I had an infection, she would have to get in touch with my gastro doc to see what antibiotic I could safely take. has anyone been in this situation while on Harvoni and what did you take. For the first 4 weeks, little to no side effects, but my immune system seemed to have taken a nosedive. Still suffering from a common cold for the past 2 weeks and now this thing flared up practically overnight. I only have 23 pills to go till end of treatment but I think the major fight going on with the Harvoni vs hep c has stressed out my immune system. Still waiting for my 4 week labs to come back. initially, my doc said he would only test after 8 week treatment was completed, but he changed his mind at my dr. Appointment and decided to test. Haven't been on in awhile but thrilled that some are getting great results. Has anyone else felt this was happening during treatment. Then again it could be the long, cold rainy, dreary winter season. Best of luck to all as we wind our way through these stumbling blacks to the finish line
Title: Re: Starting Harvoni!!
Post by: Mugwump on January 13, 2015, 05:24:10 am: @KathyNJ
It might be a good idea to speak directly with Gilead or at least get your doc to do it! I know Antacids are a no no and reading the big sheet indicates that many drug interactions are not yet determined, for obvious reasons so just perhaps reactions to some antibiotics are not a known factor.

Gilead needs to know the specifics of which medications people are using so they can do the science necessary to determine the safety factors. So you are doing them a service by informing them of which meds you are using, if there is no reaction then that statistical information is as important as reporting a side effect from the medication or combination of meds.

Hope you clear your infections soon and you too join the growing numbers that are being freed from this disease to join in on IslandGirl's happy dance!

I think I will post a good old school mariners dance Canarios gigue in spanish hemiola 6/8 double time to Youtube when I finally read UD on viral tests. So lookout you might just actually hear me playing classical guitar!

All the best
Eric
Title: Re: Starting Harvoni!!
Post by: kate0b1 on January 13, 2015, 05:58:57 am: Islandgirl, I'm doing the happy dance for you !!! It's super cool to wake and see this first, stay well.
@kathynj, I think I saw in another thread someone was on antibiotics, so you should be able to be on one, maybe check with the mama gilead to see what is safe, I also feel like I have had a cold for a million years, I never thought about it until you mentioned it.
kate
Title: Re: Starting Harvoni!!
Post by: Lukey on January 13, 2015, 06:56:08 am: Quote from: KathyNJ on January 13, 2015, 12:44:16 am
Hi all,
Just a question for everyone. Just had an infected cyst removed today and told the derm about taking the harvoni and how I thought I could not take antibiotics during treatment.!she prescribed a topical antibiotic but said if I had an infection, she would have to get in touch with my gastro doc to see what antibiotic I could safely take. has anyone been in this situation while on Harvoni and what did you take. For the first 4 weeks, little to no side effects, but my immune system seemed to have taken a nosedive. Still suffering from a common cold for the past 2 weeks and now this thing flared up practically overnight. I only have 23 pills to go till end of treatment but I think the major fight going on with the Harvoni vs hep c has stressed out my immune system. Still waiting for my 4 week labs to come back. initially, my doc said he would only test after 8 week treatment was completed, but he changed his mind at my dr. Appointment and decided to test. Haven't been on in awhile but thrilled that some are getting great results. Has anyone else felt this was happening during treatment. Then again it could be the long, cold rainy, dreary winter season. Best of luck to all as we wind our way through these stumbling blacks to the finish line

In my opinion, you would have much better results if you would post questions like this in a new, separate post. Attaching it onto this one not only changes the subject, it lessens your chances of the right people answering your question.
Title: Re: Starting Harvoni!!
Post by: catniss on January 13, 2015, 07:37:38 am: Congrats islandgirl! Praying my labs in a couple weeks are just as good. Feeling fantastic and trying to stay positive.
Title: Re: Starting Harvoni!!
Post by: azsmitty on January 13, 2015, 05:59:52 pm: Hi everyone
Thanks for the welcome. I'm not usually very talkative. but I will try to keep up to date with my treatment. The Harvoni arrived this afternoon and will be starting on it in the morning.

Rich
Title: Re: Starting Harvoni!!
Post by: Katie on January 13, 2015, 06:21:50 pm: Welcome Rich! You are on your way to the new you, and don't you worry, this gang will get you talking! Good luck to you!

Katie
Title: Re: Starting Harvoni!!
Post by: HHburme on January 13, 2015, 06:46:20 pm: Rich welcome !! Exciting to hear that you are catching a ride on the Harvoni Train !! Next Stop......Cured City!!
Fight the Good Fight !
JB
Title: Re: Starting Harvoni!!
Post by: KathyNJ on January 13, 2015, 06:59:37 pm: Thanks everyone for your tips on using antibiotics. I will call Gilead directly. Can't screw up now since I got my 4 week blood tests results today and my viral load is undetected. Yaay!!! I've waited many years to see that on my blood test. 22 more pills to go. I wonder who the scientist is who invented Harvoni -- he deserves an award! Praying every one on this pill gets cured.
Title: Re: Starting Harvoni!!
Post by: Katie on January 13, 2015, 07:24:36 pm: Kathy: Michael Sofia Check this out: http://www.newyorker.com/tech/elements/a-better-treatment-for-hepatitis-c

He discovered and figured out how to get the drug into the liver in a form it would work and not go throughout the body causing bad side effects. It was available in 2013 but the inhibitor that is in Harvoni took another year to be available.

It is really a good read and gives me an idea on the challenges in coming up with new pharmaceuticals for illnesses. My doctor told me it is such a time consuming thing to get a new drug out as well, with all the requirements from FDA, trial runs etc, which is good so we don't end up doing more harm than good to our bodies.

It's a good read and Congratulations. We are on our way. My viral load at 4 weeks was 59 and I am totally jazzed with that. For the past 9 years it has fluctuated from almost 3 Million to 16 million so 59 is GREAT!

I am SO happy for you and I bet you are still in a state of amazement!!!!

Katie
Title: Re: Starting Harvoni!!
Post by: kate0b1 on January 13, 2015, 07:26:51 pm: wow congrats on the labs, soo exciting to watch this happening, I hope they have an answer about the antibiotics also. congrats again

kate
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 13, 2015, 07:27:47 pm: Congrats, KathyNJ! I'm so happy for you/for us! I know just how you feel, as my doc said yesterday, I've (most of us) have waited so many years to see undetected that it's hard to take it in now that's it's happened!

Glad you got your meds, Rich, please keep us posted on how you're feeling as the days go by. That's one of the wonderful things about this forum - we care how each of are doing, and not just about the meds - having people who understand and help lift you up when you're down, or give helpful advice is just sooooo wonderful!

Katie, I agree, 59 IS great! Every step is a victory!! Hugs and have a good evening ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: KathyNJ on January 13, 2015, 08:19:05 pm: To Katie- thanks for the great read about Michael Sofia, our patron saint, who should be nominated for the Nobel Prize in medicine. Sofia developed the nucleus of our Harvoni drug (Sovaldi) at a small pharmacy tech company in NJ. They were bought out by Gilead, who combined Sofia's drug with another drug to create Harvoni. This second generation son of Italian immigrants, Sofia was born in Baltimore and went on to attend Cornell and became a medical scientist. His brilliance brought us to where we all are today -- on the path to being cured. Thanks for the good wishes.
Title: Re: Starting Harvoni!!
Post by: KathyNJ on January 13, 2015, 08:29:31 pm: IslandGirl, congrats on your great results, too. It is hard to fathom that you are indeed cured. It's simply amazing. My hands were shaking when I picked up my lab results from my primary doc's office ( he is copied on all lab works) and saw the words UNDETECTED. I know you understand.

Katie and KateObi thanks for your good wishes. Undetected is the magic word!
Title: Re: Starting Harvoni!!
Post by: Katie on January 13, 2015, 08:48:26 pm: Quote from: KathyNJ on January 13, 2015, 08:19:05 pm
To Katie- thanks for the great read about Michael Sofia, our patron saint, who should be nominated for the Nobel Prize in medicine. Sofia developed the nucleus of our Harvoni drug (Sovaldi) at a small pharmacy tech company in NJ. They were bought out by Gilead, who combined Sofia's drug with another drug to create Harvoni. This second generation son of Italian immigrants, Sofia was born in Baltimore and went on to attend Cornell and became a medical scientist. His brilliance brought us to where we all are today -- on the path to being cured. Thanks for the good wishes.

And they told him it couldn't be done but his determination moved him forward and we all him so much...our lives actually!
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 13, 2015, 09:07:30 pm: I agree, what a talented and brilliant man! We do owe him our lives. Not enough words to express our gratitude adequately... Islandgirl
Title: Re: Starting Harvoni!!
Post by: kate0b1 on January 14, 2015, 06:20:45 am: I read an article about him a while back, imagine having that brain! It must be pretty awesome to be the guy who kills hep c.

kate
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 14, 2015, 08:23:47 am: Another Jersey Boy does good! Mr. Sofia does deserve a Nobel Prize in Medicine, he's a true hero who's brilliance will now save many lives. Just amazing!

So happy to hear all the great Undetected news, makes me smile!

xoxoxoxo

Mel
Title: Re: Starting Harvoni!!
Post by: RiseUp on January 14, 2015, 09:45:36 am: Good Morning fellow warriors, today is day #29 and so far no side effects. I will be going to see my doc tomorrow for my 4 week results. Below are my last three blood test results all done in 2014.

1/27 9/8 12/16

ALT 44 71 83

AST 40 53 67

VIRAL LOAD 8,332,930 4,388,630 4,169,633

I will post my 4 week results as soon as I receive them.

Everyone have a great day. The Lord is good.
Title: Re: Starting Harvoni!!
Post by: Long_Haul on January 14, 2015, 01:54:13 pm: Indeed Thanks you Mr. Sofia ! After enduring Interferon, this is a breeze...

Congrats to Island Girl, Katie, and KatieNJ on your great news!

Day 13 sides are now almost non-existent!

We all need to keep at it!

AL
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 14, 2015, 07:05:32 pm: Thanks, Al, and congrats on finally getting to the right treatment for us type 1's - we're the lucky ones!! I'd begun to despair that they would ever develop something for our genotype, Mr Sofia is definitely OUR Harvoni Hero! Keep on the path, we're gonna get there! ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: Ollie on January 15, 2015, 09:34:55 am: Tested at 4 Weeks: UNDETECTED!!!! I'm currently in week 7 no SE happy to report. Humana was easy but now questioning my last 4 weeks of meds. Something about my Prior Authorization timing out? Asked Dr. If I could stop at 8 weeks since I'm Undetected but he said "not if you want to stay Undetected!" Hoping I can get the last 4 weeks of meds!!
Title: Re: Starting Harvoni!!
Post by: HHburme on January 15, 2015, 11:17:13 am: 4 week results are in, UND. So excited that harvoni is working. This is absolutely amazing medicine. Believe infected in 1977, diagnosed 15 yrs ago, and now after 4 weeks undetectable. WOW! 50 more pills to go.
It's a great day. Hoping everyone has a great day and we all roll on together !!!
Fight the Good Fight !!
JB
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 15, 2015, 11:21:45 am: WOOHOO JB!

Congratulations! It's the best feeling ever, well I guess it will be better to get the SVR 24 but I don't know that yet :)

Glad you are doing so well!

Mel
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 15, 2015, 11:25:19 am: Congrats, JB, FANTASTIC NEWS!!!!!!!!!!!! Happy, Sunshine Day, for sure! IG

Wow, Ollie, I hope they get that fixed soon! I have Humana Medicare Complete PPO, is that the type you have? You sure had me scrambling for my approval letter from Humana! It's dated 11/26/14 and the authorization is good until 2/18/15. My last bottle, filled 12/22/14 says there is one more refill and I'll certainly be calling the TLC Rx people to make sure they get that last bottle filled before 2/18/15! If you need the Humana Pharmacy Operations Customer Care number, it's 1-800-555-2546, between 8:00 a.m. and 6:00 p.m. - this was listed on the letter of approval I received. Did you get a letter like this too? Good luck! ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: Katie on January 15, 2015, 03:58:13 pm: The beast is dying!!!!! Congrats to Ollie and JB! Just know you doctor is right in continuing the treatment as the UD result doesn't mean there aren't some minute amounts hiding out and replicating, so stay diligent and take as much Harvoni as you can.

Over 40 years ago in microbiology, I did research infecting bacteria with a virus and calculated their expansion and that's when I decided they were aliens, coming from a far away, dangerous planet....maybe Uranus because they are Ass Kickers. That lab work was a real eye opener for me.

Basically ( and generally speaking) what they do is attack individual cells and inject a nucleic strand, usually RNA or DNA into a host cell and it uses the host cell to replicate which destroys the cell...in our case the liver cells. The host cell explodes and releases them to replicate into other cells. This is what causes the damage to liver tissue or whatever the virus is attacking (Common cold would be mucus membranes) They are usually very specific. One virus infecting 1 cell can produce millions of new viruses so the growth can be fast and furious. The virus is not a living organism and were only discovered once we had an electron microscope. They are much, much tinnier than bacteria.

That may be more information than you want but I think it is important to understand what we are fighting.

Once again.....congratulations and keep in mind how devastating Harvoni is to this tiny, tiny monster. It is a wonderful thing!

Katie
Title: Re: Starting Harvoni!!
Post by: JoeK9999 on January 15, 2015, 04:48:01 pm: Katie,
Thanks for the great explanation in layman's terms!
Could you explain to us how Ledipasvir/Sofosbuvir work apart and together
to destroy the virus?
Thanks much!
Joe
Title: Re: Starting Harvoni!!
Post by: Katie on January 15, 2015, 05:01:09 pm: Joe: I don't really know but my take on it is that Sofosbuvir actually kills the virus and Ledipasvir inhibits the replication. The previous treatment did not inhibit the replication fast enough so even though the virus was being taken down, it was still replicating faster than it was being killed, thereby not clearing it. An UD test could be seen but there were still some hiding out and the concentration wasn't enough to be detected. That too is why it is so important to continue Harvoni, even if you are UD at 4 or 8 and sometimes 12 weeks (for those on a 24 week schedule) Harvoni came up with a new inhibitor and I think that is what is making it so effective.

I should probably read up more on it, but I still have the attitude of Don't Worry, Be Happy, (so unlike me and that is definitely from the medication) so I haven't focused on it.

I will be convinced once I am checked 6 months after treatment and it is still UD but am celebrating each step forward.

This is just my take on it so I may be off base and if anyone has better information, please correct me.

Katie
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 15, 2015, 05:10:31 pm: Ditto!

ROFLAMO, Katie, with your comment, "that's when I decided they were aliens, coming from a far away, dangerous planet....maybe Uranus because they are Ass Kickers". Smart lady with a good sense of humor! Love it:) and thanks for sharing your knowledge with us. Like you, I'm celebrating each step forward and have marked my calendar for that 6 month after treatment lab work date! ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: KathyNJ on January 15, 2015, 06:20:38 pm: Congrats to JB and Ollie for joining the Four Week Virus Free club! It's a great feeling but the pinnacle will be the 24 Forever Club. Happy for both of you.
Title: Re: Starting Harvoni!!
Post by: Katie on January 15, 2015, 07:07:43 pm: Glad you caught that Island Girl...we have to keep our sense of humor and when you are doing research, much of it is very repetitive, boring and extremely slow before you see results with lots of room for errors.
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 15, 2015, 07:49:46 pm: That should have been, ROFLMAO:) I got so tickled, I didn't even realize I transposed a couple of letters! I probably don't need to explain the letters, but just in case someone out there isn't familiar with it, ... Rolling on floor laughing my A off :) Yep, a good sense of humor gets up through a lot of things and laughter is good for us:) ...Islandgirl
Title: Re: Starting Harvoni!!
Post by: Katie on January 15, 2015, 07:54:14 pm: My brain automatically put them in the right order...auto correct. HA! Humor is especially important for healing and gets those wonderful endorphin's going!

I have been on the computer way too much today. Nothing accomplished but sometimes that's the best thing to do. So heck with it! HA!
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 15, 2015, 08:13:28 pm: Same here:)
....Islandgirl
Title: Re: Starting Harvoni!!
Post by: Mugwump on January 17, 2015, 11:13:16 pm: Quote from: Ollie on January 15, 2015, 09:34:55 am
Tested at 4 Weeks: UNDETECTED!!!! I'm currently in week 7 no SE happy to report. Humana was easy but now questioning my last 4 weeks of meds. Something about my Prior Authorization timing out? Asked Dr. If I could stop at 8 weeks since I'm Undetected but he said "not if you want to stay Undetected!" Hoping I can get the last 4 weeks of meds!!
Speak directly to Gilead about that if you can as the 12 week treatment is a standard precautionary measure even though you will be UD on the test at as low as 4 weeks. If you cannot finance the last 4 weeks there is a co- pay option with Gilead that you should explore.

That way they will put pressure on the insurance firm and you will authorize them to inquire as to why they are stopping your authorization without consulting the recommendations by Gilead by making clinical decisions about your treatment duration.

Be pro-active they will listen.

Eric
Title: Re: Starting Harvoni!!
Post by: catniss on January 18, 2015, 03:59:50 pm: Only 10 more pills to go. First doc appointment and blood work in 11 days. The closer I get the more worried and weepy I am. Trying to stay positive but it has been hard lately. No reason why. I have had no issues since starting harvoni. One of my worries is that 8 weeks is just not enough. I want to 24. Crazy I know. Before I found out about harvoni I was plugging along thinking hep c is just something I have and just accept it. Since starting harvoni I am just overwhelmed at the thought of being " normal". I did not realize what a monkey on my back hep c has been. Thanks for letting me get this off my mind.
Title: Re: Starting Harvoni!!
Post by: Katie on January 18, 2015, 04:22:40 pm: Catniss, I looked at your history and find it odd that you are not on the recommended treatment for 12 weeks. If I were you I would talk to the doctor to find out why they feel 8 weeks is adequate. Please scroll down and see my comments on January 15th and discuss this with your doctor ASAP.

Katie
Title: Re: Starting Harvoni!!
Post by: catniss on January 18, 2015, 06:00:07 pm: Kinda of insulted that Katie that you are implying that I went into this treatment blind. Also was not aware that you had access to my medical record. I thought this forum was about support and not members spewing there uninformed opinions. Goodnight all and good luck. I'm out.
Title: Re: Starting Harvoni!!
Post by: Katie on January 18, 2015, 06:11:35 pm: Dear Catniss,
I certainly didn't mean an insult, only worry and I apologize that you took it that way. I just went back and read your previous posts to get an idea of why you were on only 8 weeks. It is a learning experience for all of us and my intent is to support and help in any way I can.

Please don't think for a minute that I wanted to upset you in anyway. We are all like a big scary but wonderful experiment and I send you nothing but good wishes with respect for you and wish for your cure and a cure for all who have dealt with this monster!

Katie
Title: Re: Starting Harvoni!!
Post by: DeeDee on January 18, 2015, 06:36:39 pm: Good Morning, Afternoon, Evening,
Congratulations to everyone who viral loads are undetected...Yeah
It's been a week today, wouldn't miss taking the pill @ 7:00pm. No side effects. Dr has made appointment for blood work on the 6 of May and to see him on the 9th. With all the good news I am reading I am looking forward to the same.

Mel, Islandgirl, Catniss and Katie, My insurance company insist that I sign for it when it's delivered, I will make sure I won't miss the the 2nd one.

7 more weeks to go
Title: Re: Starting Harvoni!!
Post by: DeeDee on January 18, 2015, 06:42:58 pm: Correction March 6 for blood work and the visit is the 9th
Title: Re: Starting Harvoni!!
Post by: Katie on January 18, 2015, 06:52:21 pm: You are on your road to recovery Dee! Keep up that good attitude, drink your water ;) and March will bring you good news! We are bringing this monster down!

Katie
Title: Re: Starting Harvoni!!
Post by: DeeDee on January 18, 2015, 07:08:39 pm: Thanks Katie,

I just read about Dasani water...I will have to change to spring. I also notice others ASTs,Alts etc. Mine has always been within range...no highs or lows. Also my HCV RNA in 2014 was 2017239, 2013 is was 3909882 and in 2012 it was 20122269540. Can you shed some light on this.
Yes Katie I like that we are bringing the monster down
Title: Re: Starting Harvoni!!
Post by: Katie on January 18, 2015, 07:37:28 pm: Dee Dee, I can only speak from my personal experience or what I have read. My ALT/AST was normal at least 80% of the time and did rise slightly to just out of the normal limits when I was sick with something else. I figured my system was just taxed too much when I had a cold or dental problems.

My viral load for the past 9 years started at about 4 million, spiked at 16 million 3 years later (when I was really feeling quite good), came down to 3 million and my last check was about 2,600,000. I think it fluctuates all the time as this is the virus that is in the blood. I had a doctor tell me the blood count really doesn't count all that much, what matters is how many are in working on the liver. So who knows. I never have heard that before or since but I suppose it makes sense as some invade the host cells (liver) and others are in the blood.

In any case, you should be just fine and am glad you are not burdened with side effects. Harvoni is truly a miracle drug and we are blessed that the breakthrough happened when we needed it!

Enjoy your day/evening depending what time zone you are in.

Katie
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 18, 2015, 07:57:20 pm: Wow, DeeDee, after I read your post I looked up Dansani water and agree - why would someone buy it. I don't normally buy it, but will make sure I don't now. I have a Pur water filter at my kitchen sink and know I have control over it so use it for cooking, etc. Bottled water is always Spring - usually Zephyrhills and I buy it by the case. Congrats on how well you're doing, and thanks for all your comments. I do have to sign for my meds, but they will allow someone else to sign if I can't be here; once I did have to be gone to take my mom to an appointment and they used my signed note and left the box where I specified. Again, safe neighborhood, etc. I probably didn't miss the guy by 10 minutes and he wasn't even supposed to deliver until the next day, but to be safe I left signed instructions as I've had him deliver a day early every time and didn't want to miss getting it. I did breathe a grateful sigh of relief when I saw it and sure hope never to have to do that again.

Catniss, I've wondering how you were. I'm positive Katie didn't mean to upset you in any way. We all care about you and want the best for you. Feel a hug from me, and a group hug from all of us. We'll get through it a step at a time. I'm send you lots of positive energy and prayers that your lab report will be undetected too! ...Islandgirl
Title: Re: Starting Harvoni!!
Post by: DeeDee on January 18, 2015, 08:16:56 pm: Katie, I am EST and thanks for shedding some light on the topic. My Fibrospect was FO-F1 <9 and the Dr said that was good. He also said my labs was good. It was just that HCV RNA. Yes I was happy that I didn't have any side effects but my appetite seem to change.

IslandGirl, Once I started drinking water it was Dansai and just yesterday for some reason I was looking at the Spring Water which I will switch over to now. I will look for Zephyrhills. I will google others just in case I can't find it.

I can"t say enough how happy I was that UPS came back because I was ready. I had did my research and was just waiting for the New Year to start Harvoni. My insurance said I have to sign for it at all times. Although a safe neighborhood they normally leave packages in the sun porch so I can understand and I won't miss when he comes back.

Have a good evening ladies and thank you
Title: Re: Starting Harvoni!!
Post by: Lynn K on January 18, 2015, 08:27:51 pm: I drink tap water mostly. Too many plastic water bottles in the world.

Zephyrhills is a town in central FL not far from Tampa so not sure how wide is their reach outside their local area.

You can set up UPS alerts to know delivery windows and when package is on the truck for delivery.
Title: Re: Starting Harvoni!!
Post by: DeeDee on January 18, 2015, 08:29:55 pm: Thanks Lynn
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 18, 2015, 08:40:16 pm: Quote from: Lynn K on January 18, 2015, 08:27:51 pm
I drink tap water mostly. Too many plastic water bottles in the world.

Zephyrhills is a town in central FL not far from Tampa so not sure how wide is their reach outside their local area.

You can set up UPS alerts to know delivery windows and when package is on the truck for delivery.

I think Tap water in your neck of the woods is way better than it is in mine! Tap Water here is overly treated and tastes pretty gross to me!

Mel
Title: Re: Starting Harvoni!!
Post by: Lynn K on January 18, 2015, 08:48:03 pm: Mine comes from a local lake but seems to have a high mineral content looks like calcium residue left on things so I guess I am getting extra calcium
Title: Re: Starting Harvoni!!
Post by: Katie on January 18, 2015, 09:05:54 pm: We don't have wells here and outside of city limits we catch our rain water. We live in a rain forest and get close to 200 inches a year, sometimes more. The water is crisp, cool and sweet. Our city water, from a lake is treated heavily and I can't get it past my nose so am glad I am where I am! Pure water and I am learning to appreciate it more, lately! I wasn't drinking near enough and now I crave it. That's GOOD!

Have a good evening everyone! Off to fill up my water jug!

Katie

and I agree with Lynn on the plastics...plus you don't know the shipping conditions. Did it freeze, did it get really hot? Is the plastic OK in those conditions. Just saying.
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 18, 2015, 09:54:39 pm: Katie,

You are so lucky to have that option. I agree with you and Lynn that bottled water isn't the best choice for everyone but for me given what my options are it's the best I have. They are only in upstate NY so it's not too far away and they use BPA Free

Funny thing is that about a month ago I emailed the company to have them notify me when and where I can start buying Gallon or 2-1/2 Gallon jugs. I am hoping they do the 2-1/2 Gallon soon.

Mel
Title: Re: Starting Harvoni!!
Post by: Katie on January 18, 2015, 10:11:00 pm: Mel, I am lucky and realize those in many places don't have a good option. With our weather changing who knows what the future holds, although, fortunately the rain hasn't really let up. The past 2 summers many people had to buy water (from town :P) because we had some dry spells and if you have a family with kids, the water in your tank goes quickly. I go into conservative mode as soon as they predict sunny weather and don't waste anything. Easy for me with my field camp background where we had to pack everything through the woods.

I know all of us are really health minded and do everything we can to protect our liver and do the best we can.

Getting a larger quantity would definitely make it easier and you know, if you have clear skies you could do a water catch too.

Good hearing from you!

Katie
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 18, 2015, 10:16:43 pm: I live a little to close to a few major cities along with major pollution, this isn't really the place to do that. Perhaps in my next life I will have that option.

Mel
Title: Re: Starting Harvoni!!
Post by: azsmitty on January 22, 2015, 03:13:08 pm: Hi everyone
I have completed one week of treatment and no side effects. I go for blood test at 2 weeks and a Dr. app't ten days later. I will let everyone know of any changes in blood work after my Dr. app't

Rich
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 22, 2015, 03:34:16 pm: Hi Rich, glad you're on your way to FREEDOM! Hope your path is smooth - look forward to you keeping us posted!! ...Islandgirl
Title: Re: Starting Harvoni!!
Post by: readynow on January 22, 2015, 04:22:33 pm: Blood work at two weeks; that's quick. I'm due for blood work at end of four weeks which is a couple more days. My Dr. is talking about eight week treatment total if
blood work is good. I'm treatment naïve with a lower viral count; around 5mil. Have to take it one day at a time, but remember its important to be our own advocates.
Title: Re: Starting Harvoni!!
Post by: Ollie on January 23, 2015, 11:23:02 pm: Does anyone know the protocol for BloodWork post treatment? I'm undetected and no SE at 4 weeks.(yay) With lousy insurance it seems pointless to do the BloodWork again as I finish treatment at 12 weeks. Hoping I can wait and check my levels 24 weeks post treatment. Also, any knowledge if alcohol is detrimental post treatment . Fortunately my liver is not cirrotic.
Title: Re: Starting Harvoni!!
Post by: Katie on January 24, 2015, 12:11:27 am: Don't drink ANY alcohol before you have finished your last post treatment test to be sure you are clear of the virus. When I know I am definitely clear, I MAY have a glass of red wine with dinner every once in a long while but certainly don't want to tax an already compromised liver and I do not have cirrhosis either. Just doesn't make sense. Your liver will heal over a period of time so best give it that time.

Katie

Post treatment testing: My understanding is they usually test at 12 weeks to make sure there is no virus replication but that would be up to your doctor.
Title: Re: Starting Harvoni!!
Post by: Ollie on January 24, 2015, 10:09:09 am: Thanks Katie!
Title: Re: Starting Harvoni!!
Post by: DeeDee on January 24, 2015, 01:52:17 pm: Good Morning, Afternoon, Evening,

Welcome Ready Now, Rich & Ollie :)

Ollie I agree with Katie, no alcohol and Katie it would be nice to have a glass of wine with dinner...but we can wait it out.

I will take my 14th pill this evening and no side effects...yay
Title: Re: Starting Harvoni!!
Post by: Katie on January 24, 2015, 01:59:24 pm: Dee Dee..you are right. I haven't had one sip of alcohol in over 9 years and actually quit drinking a couple months before the Hep C diagnosis as it made me feel crappy,so I can wait a few more months. Actually don't really miss it at all. If you think about it there are lots of good drinks out there that taste better than an alcoholic drink and are better thirst quenchers too.
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 24, 2015, 02:15:52 pm: My wine,beer, alcohol is Fresh Spring Water, in my opinion nothing tastes better!

There is no reason to put something into my body that's going to hurt it. I just can't see what the positive is, that's just me and I never was a big drinker anyway. I'd probably be dead now if I was.

I figure we are all being given an opportunity to be around a lot longer and way more healthy for many years. The cost to treat our infection is HUGE and if you think about all the people who can't get the medication you will realize just how damn lucky those of us on treatment really are.

I know it's a personal choice but IMHO if you choose to drink alcohol then why are you even on treatment? Just saying....

Mel
Title: Re: Starting Harvoni!!
Post by: Katie on January 24, 2015, 03:06:31 pm: I totally agree Mel! I won't say I will never have a small toast with wine in the distant future, but it isn't something I am even considering at this point. Hepatitis isn't the only thing that can cause cirrhosis and alcohol definitely does, so like I said, why would you want to stress out an already compromised, vital organ with something so harmful to it. I didn't mean that in a couple months I would start drinking again as it is the last thing on my mind and I haven't missed it a bit. I was only responding to Ollie as he asked about it and sounded as if he was considering it.

Your energy and wisdom is always so positive and I love your posts!

Here's to a long, healthy and sober life!

Katie
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 24, 2015, 03:36:05 pm: Hi Katie,

I hope you didn't think my post was an attack on anyone who makes a different choice than me because it wasn't meant that way at all, just offering my perspective on alcohol, why I choose not to use :)

Thank you for the compliments, it is honestly helpful for me to be as positive as possible and when I write it down it's good for my soul and helps me to remember what's really important.

Have a great weekend!

Mel
Title: Re: Starting Harvoni!!
Post by: Katie on January 24, 2015, 03:42:16 pm: Mel, Of course I didn't! I just didn't want you to think I was stocking up my liquor cabinet in anticipation. HA!

We are all here for support and thank goodness we have each other.

Katie
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 24, 2015, 03:52:54 pm: Ok good and I didn't think anything of the sort about you!

Anyway each of us chooses our own paths and we will deal with the consequences good or bad from them. Up to us to decide which one is right for ourselves.

I had many years of not eating right and hardly any exercise which wasn't the smartest thing. Having been hit with the Hep C diagnosis, being pretty sick in the beginning and realizing I had some choices to make I picked a path. Honestly eating poorly is probably almost as bad for our livers are alcohol is. I truly appreciate that I have been given a chance to be shocked into doing something about it. When we are young we don't think about limitations in life, when we are in our 30's and 40's we are just living it without worrying so much about the future. For me getting into the mid 50's, being diagnosed, being sick, well that changed me and hopefully for the better forever. This is one lesson I don't want to ever forget...

Mel
Title: Re: Starting Harvoni!!
Post by: DeeDee on January 26, 2015, 07:45:52 pm: Good Evening,

I am not a drinker but occasionally when going out I would have a glass of wine, since being diagnosed I haven't anything. By the way I got some Poland Spring and that's my drink for now on.

Hugs
Title: Re: Starting Harvoni!!
Post by: Ollie on January 26, 2015, 11:10:29 pm: It's great to read everyone's responses. I am def NOT considering a single drop of alcohol while on treatment. Prior to treatment my GI Dr. Said it was ok to have an occasional glass of wine. I was just wondering what info is out there re: post cure alcohol. Trust me, I'm am so thankful to my insurance company and HARVONI I wouldn't do anything to jeopardize the health of my liver now!
Title: Re: Starting Harvoni!!
Post by: Katie on January 26, 2015, 11:36:39 pm: That's GREAT Ollie. I agree and am also so thankful to have this treatment and so Grateful to Michael Sofia for making the breakthrough on something that actually works for 1a.

Here's to crushing the alien monster and getting our lives back. ;D

Katie
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 26, 2015, 11:44:43 pm: Ollie and Katie, I'm just where you are. My GI did say that after successful treatment I should be able to have a glass of wine on occasion - she called it "quality of life", however, I plan to ask a lot more questions before I think I could be brave enough to let myself have that glass of wine. So, I'm also curious about any studies, personal experience, etc others may know about. I still have a pretty healthy liver and no cirrhosis, thank God, but I wouldn't risk any alcohol until way past treatment. I was never a big drinker but did enjoy an occasional glass of wine, but not anything I'd risk my health over. ...Islandgirl
Title: Re: Starting Harvoni!!
Post by: Lynn K on January 26, 2015, 11:47:57 pm: Just a reminder to those of us who do have cirrhosis, alcohol is off the table completely even after beating hep c we still have cirrhosis so no alcohol for us ever.
Title: Re: Starting Harvoni!!
Post by: catniss on January 27, 2015, 07:41:16 pm: Taking last pill tomorrow. Dr.app. and blood work Thursday. Kinda worried. Really hoping everything will be OK. Send positive vibes to Maine.
Title: Re: Starting Harvoni!!
Post by: Katie on January 27, 2015, 07:52:17 pm: I'm keeping my fingers crossed for you catniss and am sure you will have good results. I find it totally remarkable how well everyone is doing and all of the low and UD viral loads in a short period of time. We all have a bit or worry creep into our thoughts, especially when waiting for results.

Hope you are staying warm and safe through the storm and healing thoughts sent to you!

Katie
Title: Re: Starting Harvoni!!
Post by: catniss on January 27, 2015, 07:54:00 pm: Thanks Katie.
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 27, 2015, 08:16:27 pm: Catniss,

You've got this!!!!!

Mel
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 27, 2015, 09:47:26 pm: I know you're gonna be doing the Catniss Happy Dance very soon! Congrats on reaching the "last pill" point too 8)

Tomorrow is my last pill on bottle two, Thursday I start my last bottle of 28. I'll be sending you positive energy and healing thoughts as you meet with your doc and have your labs done. Mel's right, "you've got this, girl"! ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 27, 2015, 10:30:47 pm: Islandgirl,

That's pretty exciting for you as well. I think I will be the last one still on TX while everyone else is SVR! Guess everything happens for a reason but I feel like I am going to be on TX forever. Starting Bottle 3 of Harvoni on Saturday and not sure how many more to go, could be one or three after bottle 3. Wow that means on Friday I have completed 16 full weeks of TX. I sure have learned so much from everyone and I really do feel so much better.

Just need to focus on that, it's what's important and I'd rather keep going now then relapse and have to start over again!

You guys all better stick around or I will chase you down!!!!! Brad's got a big test next week too!

Tomorrow am IDHero Appointment, haven't seen him in a month. My hands seem to be swelling again so he may send me for some blood work. He'll do a full work up if he does.

Mel
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 27, 2015, 11:09:17 pm: Thanks, Mel! I hope your appointment goes well tomorrow. Brad, I hope your test goes well too!

I hope I remain undetected, but I remind myself from time to time that the important thing is to keep doing what it takes to reach cured. None of us want a relapse, yet it could happen, but it just means we have to keep on the treatment path with Harvoni or another drug until we reach cured. I'm not being negative, just trying to keep myself grounded so I don't crash and burn if I don't always have perfect results.

You truly are an inspiration and I respect and admire your courage and positive attitude more than I know how to express. Gotta stay around to see how all my buds are doing - I don't want to deal with separation anxiety on top of everything else 8) ...Islandgirl
Title: Re: Starting Harvoni!!
Post by: Katie on January 27, 2015, 11:20:12 pm: My treatment "ends" February 25th and I certainly will be on this forum for another 6 months to see how everyone is doing and to reassure myself those cleared, stay that way, so you are stuck with me Mel!

I love the separation anxiety IG! I actually was thinking about how much I am going to miss everyone once we get on with our healthy lives. Maybe we could start a blog so we could keep in touch. I am not good at something like that but I just bet someone on here is!

You are a true warrior Mel and have inspired all of us. We won't let you down. Hope everything goes well!

Katie
Title: Re: Starting Harvoni!!
Post by: Katie on January 27, 2015, 11:25:03 pm: Island Girl: I am curious if you are having 8 week blood work? We are on the same schedule and my doctor is just treating me now at the end of 12 weeks. Guess it doesn't matter as it's the post treatment UD we need to have but it is nice to know if it has dropped off more, since I was still detected at 59.

I just have to concentrate on the positive and stomp out the worry wart in me.

Katie
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 27, 2015, 11:48:35 pm: Thanks so much ladies,

Honestly by me writing positive thoughts it helps to keep me positive. I was in such a fumk for so long, now we all know why. Thanks to the beast I lost myself in the dense fog for way too long and didn't even realize it. I actually was almost anti-social which I know sounds really hard to believe but I lost my spark if that makes sense. I want it back and I am trying so hard to claim it. The damn beast hurt me for way to long and it's time for me to enjoy my life again.

I hope all of us have that opportunity. I really hope that when I am cured I can help bring awareness to people. I hope the Pharma's start working on a Vaccine for it.

It's time for the beast to go down once and for us, not just for us but for everyone.

Hugs to all,

Mel
Title: Re: Starting Harvoni!!
Post by: Katie on January 27, 2015, 11:57:21 pm: Mel, I understand exactly what you mean, Well before I was diagnosed, I had thrown a birthday party for a friend and it just wore me out so bad, I think that was the last good sized get together I hosted. I was talking to a dear lady and she asked if I was tired, and I told her...I've lost my spark, and I can't figure out why.

I am a loner to begin with but always enjoyed entertaining a couple times a year, but it has been years since I had more than 3 or 4 people at a time. It just became too much and I really have spent the last 5-8 years in solitary confinement, other than when I was at work. I always tell everyone my social life consists of grocery shopping and doctor's appointments! Sad but true, and maybe that will change once this journey is complete.

Good night ladies!

Katie
Title: Re: Starting Harvoni!!
Post by: kate0b1 on January 28, 2015, 06:21:34 am: @mel, where else would we be lol, and by that time it will be warm and you and i will be out mall walking.

kate
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 28, 2015, 07:31:32 am: Kate,

I am not ready to be a mall walker, perhaps we can be in the great outdoors!

Mel
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 28, 2015, 08:51:00 am: Good morning everyone :)

I'm not ready to be a mall walker either, Mel, but the weather you guys have now might make me try it! I know what you guys mean about losing your spark - that describes me as well and I only seem to get it back (a bit) off and on. I'm better than I was, but not there yet and lack the energy it takes to push myself for more than a couple of days or so at a time. And, like Katie, I've always been a bit of a loner too.

Katie, on my lab work schedule - I had blood work done at 4 wks and 6 wks, then my doc appt to discuss them. She (my GIGoddess? GIHeroine? :)) gave me lab sheets for one month after treatment ends Feb 25 (same as you) and for 6 months after that - so March 25 and again September 25. I guess they all vary a bit? She was so pleased with the labs in January she said she doesn't think I'll need to even come in to see her, just call for the results. I'm not sure I'm ready to cut the umbilical cord yet (me and my separation anxiety? ;)) I never realized how hard it would be to trust that I could really be cured! Guess that's one more thing I need to work on :) I really identified with your comment "I just have to concentrate on the positive and stomp out the worry wart in me".

Thank you all so much for always being there! ....Islandgirl

PS, Looking forward to hearing about your appointment with your GIHero this morning, Mel! Sending you hugs too!
Title: Re: Starting Harvoni!!
Post by: catniss on January 28, 2015, 04:40:14 pm: Wow. Lab work schedules really vary. I am having my first one done tomorrow after finishing 8 week treatment today. Then again in 6 weeks then the final one 6 weeks after that. Just praying everything goes well tomorrow. Then in 6 weeks. Never been a mall walker. You will find me at the gym pumping iron. Trying to fight middle age and the lovely side effects it comes with.
Title: Re: Starting Harvoni!!
Post by: Katie on January 28, 2015, 05:14:38 pm: Congratulations on your End of Treatment!!!

Here's to your cure and I can't wait to Cheer you on, Catniss!

Katie

I prefer pumping iron too but am really limited with all of my joint issues. Just got a bionic knee brace and that's helping to walk, but no Mall Walking for me either!
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 28, 2015, 05:34:30 pm: Good luck with your appointments tomorrow Catniss - I know everything will be just great! BTW, I think the mall walking was just sort of a joke because of all the snow in the frozen North 8) However, for some people it might be their only option - depending on their health and the terrain. Here's to moving it no matter how you have to do it!! Haven't been able to use my gym one time this year, but it's on my list 8) ....Islandgirl
Title: Re: Starting Harvoni!!
Post by: catniss on January 29, 2015, 02:33:31 pm: So had my doc appointment and blood work this morning. I might actually have results tomorrow because the lab runs this test on Thursdays. Doc is quite confident I will be UD. Follow up blood work was a bit confusing. She said my next blood work woud be in 3 months if UD now. I can do it at 6 weeks if I want but if I'm UD then it still does mean I would be 6 weeks after that. She recommend me just wait the 3 months but my thinking is if god forbid I relapse at 6 weeks post I could start the next treatment that much earlier. Opinions?
PS
Well aware about the snow. I was out shoveling all day Tuesday in the blizzard and more to come tomorrow. Having my second massage this week because of sore muscles and stress. :)
Title: Re: Starting Harvoni!!
Post by: catniss on January 29, 2015, 02:37:38 pm: Post correction
If I'm UD at 6 weeks it does not mean I would be UD at 3 months. Hope everyone understands my gibberish.
Title: Re: Starting Harvoni!!
Post by: Katie on January 29, 2015, 02:47:14 pm: I guess they figure 12 weeks is due to the replication time of the virus and I will need to wait that long too. For my peace of mind, I'd prefer another 6 week test but the insurance companies probably don't like the cost. That's just my opinion. I am not real good at waiting so I think that'll be the most difficult part of the treatment.

Good luck Catniss. We are all rooting for you and sending positive energy! Your success gives all of us hope!

Katie
Title: Re: Starting Harvoni!!
Post by: badbradley on January 29, 2015, 02:50:50 pm: Hello catniss,
I personally chose to wait out the12wks for the SVR12test. If my liver condition was more dire, i would definitely have wanted the 4 wk post treatment VL test! As you have reasoned also, the sooner you know the sooner you can get started with a new plan.
You are correct that UD at 6wk post treatment does not mean you will be UD at 12wks post treatment, but it is a very good indication that it will be most likely.
My wait is almost over. Test next week. I hope and pray it was worth the wait!
Good luck! Brad
Title: Re: Starting Harvoni!!
Post by: catniss on January 29, 2015, 03:11:54 pm: Brad
OMG! Will be sending you lots of positive energy next week.
Katie
I know exactly what you mean about peace of mind. That is why I'm considering the 6 week test. But then another part of me just wants to say let it be for the 3 month. Then it will hopefully be over once and for all. The doc did say I do not have to make a decision right away.
Title: Re: Starting Harvoni!!
Post by: Katie on January 29, 2015, 03:28:51 pm: Brad: We will all be cheering you on and are probably as anxious to hear as you. With the treatment being so new, every step has implications for all of us. I am starting my final bottle tonight and the past 8 weeks and the coming 4 will go by much faster than the post treatment 12.

Congratulations for making it to the end of your journey with this alien monster!

Catniss: It's great you have that option and you can decide depending on how you feel. Whatever you decide, please keep in touch with you progress. I'm thinking everyone is going to sail through this (except me; that seed of doubt creeping in every once in awhile, but I stomp it back with a healthy ferociousness >:( ) I know everyone has those thoughts once in awhile and know those thoughts are probably common so I stop them in their tracks so they can't grow and hope you can do that too! It's hard sometimes.

Good luck to you Cat!

Katie
Title: Re: Starting Harvoni!!
Post by: Hepfreein15 on January 29, 2015, 04:12:49 pm: I am new here and this is my first post. But I saw my dr yesterday and we are submitting insurance paperwork for HARVONI. My liver is in great shape ( 2 biopsies) and was diagnosed late 2008. We agreed I could wait and the traditional treatment wasnt very appealing. Thank you to all who post here as it makes me feel so much better about trying this.

I am anxious and nervous about it all but I am a fighter and am ready to be hep C free. Any advise you can give me is greatly appreciated and I will post here ofetn for encouragement and support. Thanks
Title: Re: Starting Harvoni!!
Post by: Katie on January 29, 2015, 04:23:32 pm: Welcome HF-15, and you'll come to really appreciate the support and information on this forum. It is so beneficial to share our battle with those going through the same thing. With your good health you shouldn't have any problematic side effects. It has been a really easy treatment for most of us and much, much better than the old one. It is definitely a miracle drug and we are all blessed this breakthrough came about to help us.

My advise for starting treatment is eat well, rest as needed and drink lots of water to flush out the toxins. I am feeling better than I have in years and actually feel 10 years younger. I have minor little things come and go, but am not even sure if they are from the treatment and most of the changes have been positive in my case.

Wishing you the best and congratulate you on getting on Harvoni!

Katie
Title: Re: Starting Harvoni!!
Post by: catniss on January 29, 2015, 06:02:45 pm: Welcome HF-15
Congrats on starting harvoni. Like you my liver is not in bad shape although I was diagnosed in the 90's. I just completed my 8 week treatment with no side effects at all. I had my first labs done this morning. I was also offered the earlier treatment but really was not option because of side effects. I have only had 1 biopsy(last year). This is a good place for questions and support.
Have a good night.
Catniss
Title: Re: Starting Harvoni!!
Post by: Hepfreein15 on January 29, 2015, 07:10:30 pm: I will post here often .. it could be 30 days before I get my RX but fortunately I was told my insurance has covered it. Feeling very lucky.. just waiting for approval and delivery. Love having the support. There are no support groups in my area for people with HEP C . TY Cat and katie
Title: Re: Starting Harvoni!!
Post by: Lynn K on January 30, 2015, 04:11:22 am: I am thinking about asking my doctor not to do the end of treatment viral load and instead do the test at week 4 and the do the 12 week post. Especially as I relapsed on sovaldi olysio last year I could do without the 12 weeks of total drama
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on January 30, 2015, 05:05:02 am: @Hepfree - So glad you decided to join in, I hope you find the forum to be as supportive as I have. Great bunch of warriors in this crew! Katie beat me to the punch with the most important things and I totally agree with her advise;
1. Water water and more water
2. Make healthy food choices, the cleaner you eat the easier it is on your infected liver
3. If you need a nap take one, if you feel like a walk, take one. Basically some exercise when you feel up to it, even just walking. It's good for the soul to be up and moving. I tell myself I am shaking out those like boogers so the Harvoni can annihilate them.
4. It's ok to share here, no one will attack you (if they do they will be bombarded) . It's really good to be able to let it out in a safe place. I totally whined last night!
5. No extra meds, vitamins, antacids, etc unless you clear it with your Doc or Gilead

Take care of yourself, listen to your body, sleep in when you need to.

Mel
Title: Re: Starting Harvoni!!
Post by: kate0b1 on January 30, 2015, 06:05:41 am: @hepfree, i don't know who your ins co is (and we have had many ins woes here lol) but weirdly the beginning process went very smoothly and easy, i was approved and sent my first meds within 2 weeks, (after that a story for a different day), anyway welcome and i hope it goes smooth for you

kate 8)
Title: Re: Starting Harvoni!!
Post by: Islandgirl on January 31, 2015, 12:40:57 pm: Welcome, HF-15! Sorry to be so long in welcoming you - darn computer issues had me missing out on everything and everyone :-[ I'll simply reconfirm that you're with a great group of nonjudgmental, supportive and knowledgeable people here and it's invaluable to have a Forum Family like this. I hope your insurance and med delivery process goes smoothly and quickly. I got my letter of insurance approval (be sure to keep this handy throughout your treatment) the same day I heard from my Specialty Pharmacy. If the co-pay is too high, start with your SP to see what help is available - next try Gilead through the support path; CALL them. Again, welcome!

Catniss and Brad, congrats on kicking some dragon and sending everyone more positive energy as those test results come in. Keep on kicking 8) ...Islandgirl
Title: Re: Starting Harvoni!!
Post by: DeeDee on February 01, 2015, 01:56:31 pm: Good Morning, Afternoon, Evening

Welcome HF-15, you will find this forum so interesting and supportive, so welcome again. I was pretty much like you and waited for the New Year to start. I am on my 22nd pill today. I have had no side effects and leaning to drink water, water and more water. I am looking forward to starting my second bottle next week and seeing the Dr on 03/09. I have everyone in my prayers.
Title: Re: Starting Harvoni!!
Post by: WaltFrazier on February 02, 2015, 10:13:22 am: Hello All. I've been following this forum for the past 7 months and recently started participating in the forum. My quest for Harvoni/Solvaldi began in July (After relapse on INTRN in 2007). My Old insurance would not pay...I fought and fought and finally decided to switch insurance to one that had it on there formulary. Well 7 months later, I was told my Harvoni will arrive Wednesday. With the Co pay coupon it will cost 5.00. Needless to say, I'm elated but will wait til its actually at my door!. I also have PCT so my skin has been a mess. My Dr advised it will help it tremendously...Anyways great to be sharing this life changing news...Tight lines all!
Title: Re: Starting Harvoni!!
Post by: DeeDee on February 02, 2015, 02:03:50 pm: Good Afternoon

Hello Walt, Well congratulations! I was excited as well to get started. My co pay is $70.00. What coupon as you speaking about?

On the other hand. I have 5 pills left, I have develop a rash on my right side (stomach), my Dr. is not compassionate and I now have to go see my primary.
I am in need of encouragement because I am ready to stop taking it.

Caremark Pharmacist said a rash is possible. The Dr. said it is not and I don't know who to believe.
Title: Re: Starting Harvoni!!
Post by: Katie on February 02, 2015, 02:15:06 pm: Hi DeeDee...you've made the long journey and the end is just around the corner. The rash may be unrelated or maybe not but I would see your primary to get his opinion. Is the rash painful or itchy? Others have experienced a rash and I think everyone's reactions are a bit different as there are so many variables including other health issues.

Personally, I would take the medication and if any other allergic type reactions occur then get to the doctor. It may go away on it's own. => Revised. See next post.

Anyone else with a rash issue can speak to this better than me. Maybe post your question under the side effect thread.

Good Luck and hang in there.

Katie
Title: Re: Starting Harvoni!!
Post by: Katie on February 02, 2015, 02:23:25 pm: Dee Dee, Just so you know, I am not allergy prone so I'm not speaking with any knowledge, but from seeing some friend's experiences, it can be serious, so I encourage you to get it checked out. No sense in taking chances.

Katie
Title: Re: Starting Harvoni!!
Post by: BattleTheBeast on February 02, 2015, 03:04:10 pm: Quote from: DeeDee on February 02, 2015, 02:03:50 pm
Good Afternoon

Hello Walt, Well congratulations! I was excited as well to get started. My co pay is $70.00. What coupon as you speaking about?

On the other hand. I have 5 pills left, I have develop a rash on my right side (stomach), my Dr. is not compassionate and I now have to go see my primary.
I am in need of encouragement because I am ready to stop taking it.

Caremark Pharmacist said a rash is possible. The Dr. said it is not and I don't know who to believe.

Hi Deedee,

Here's where you can get the co-pay coupon: https://www.harvoni.com/co-pay-coupon-registration (https://www.harvoni.com/co-pay-coupon-registration)

It's up to you whether to take the medication or not but I would consult with my doctor before stopping the treatment. It could be something as simple as a detergent change, soap change, lotion, a food allergy, who knows but it is a little odd for you to develop a rash from something you have been on a while with only 4 days left.

Hopefully you aren't snowed in or ice in like some of us in the NorthEast and you can get the rash checked out before you make the decision to stop the meds.

Mel
Title: Re: Starting Harvoni!!
Post by: WaltFrazier on February 02, 2015, 03:48:11 pm: Quote from: DeeDee on February 02, 2015, 02:03:50 pm
Good Afternoon

Hello Walt, Well congratulations! I was excited as well to get started. My co pay is $70.00. What coupon as you speaking about?

On the other hand. I have 5 pills left, I have develop a rash on my right side (stomach), my Dr. is not compassionate and I now have to go see my primary.
I am in need of encouragement because I am ready to stop taking it.

Caremark Pharmacist said a rash is possible. The Dr. said it is not and I don't know who to believe.

DeeDee, BTB posted the location of the copay coupon, Thanks !
Title: Re: Starting Harvoni!!
Post by: Lynn K on February 02, 2015, 04:04:09 pm: Hi Dee Dee

Providers and patients can call 1-855-7-MYPATH (1-855-769-7284) for assistance

From the same link

Pay no more than $5 per co-pay for HARVONI

We believe that cost should not be a barrier to receiving treatment. That’s why the makers of HARVONI offer a co-pay coupon. If you are eligible, you may pay no more than $5 per co-pay. Some restrictions may apply. See Terms and Conditions below.

Co-pay Coupon Terms and Conditions

The HARVONI co-pay coupon program will cover the out-of-pocket costs of your HARVONI prescriptions after you pay the first $5 per prescription fill, up to a maximum of 25% of the catalog price of a 12-week regimen of HARVONI. The offer is valid for 6 months from the time of first redemption
For residents of the 50 states, District of Columbia, Puerto Rico, Guam, and the Virgin Islands. Prescriptions must be filled by a pharmacy in these locations
The coupon is limited to one per person and is not transferable
Coupon is not valid for prescriptions eligible to be reimbursed:
in whole or part by Medicare, Medicaid, or any other federal or state-funded healthcare benefit program.
Title: Re: Starting Harvoni!!
Post by: kate0b1 on February 02, 2015, 05:44:53 pm: @deedee, i was sent an email with a coupon for $5 co-apy (otherwise it would have been $36) witch i would have gladly paid, but wow 5 dollars a month 8). bottle #3 should be here sat (last one).
and like everyone else, you should maybe speak to your doc about the rash and certainly about stopping meds.

kate
Title: Re: Starting Harvoni!!
Post by: Mugwump on February 02, 2015, 07:21:41 pm: DeeDee I would be extremely surprised if your rash is caused by a reaction to Harvoni. It is very unusual for a strong and dangerous allergy rash reaction to happen without secondary symptoms.
You are almost at the end of treatment and for me having gone through treatments that were much worse, there is no way I would stop unless a doctor specifically told me and there was proof that Harvoni was killing me or going to leave me in a hopeless state instead of remove HCV from my system.

On the bright side my current blood work shows all liver functions as completely normal after 9 weeks of pills. For the first time in over 30 years I am sure that if someone was exposed to my blood it would not infect them. I am one happy camper, to me this is a real chance at life without constant worry about someone using your towels, razor or God forbid tooth brush by mistake. Let alone the constant worry about a loved one, dentist, doctor, paramedic, nurse or other medical professional being accidentally exposed to my blood!

Now I can go fishing with my ham fisted friend who couldn't fly cast his way out of a paper bag and not worry about the big steelhead flies that he seems to aim straight at whom ever is fishing withing 40 feet of his 13 foot rod tip! He seems to think he is the greatest spey rod flogger on earth but no one wants to fish with him....HMMM I wonder why ;)
Title: Re: Starting Harvoni!!
Post by: DeeDee on February 03, 2015, 05:42:12 am: Good Morning,

Thank you so much Lynn, Kate and Mugwump for the support/encouragement.
I spoke with MyPath and they are working on the coupon.

The Dr. suggested a coritzone cream which I will pick up today. Did not say which one, I will ask at the pharmacy. Primary wasn't available.

I will call in the next bottle on Wednesday...just was frantic over the rash.

Thanks again and have a good day everyone.
Title: Re: Starting Harvoni!!
Post by: catniss on February 03, 2015, 09:17:31 am: Blood work came back UNDETECTED! Now if I can just stay that way until April 30th I will be fully cured! Wow. On cloud nine.
Title: Re: Starting Harvoni!!
Post by: readynow on February 03, 2015, 09:51:20 am: Congradulations Catniss. I just learned am undetected after four weeks. Will take
a while to process this information for me. Time to relax a little. Enjoy the process.
Title: Re: Starting Harvoni!!
Post by: WaltFrazier on February 03, 2015, 10:52:52 am: Congrats Catniss! Hopefully you will stay that way forever! Forget about April 30th LOL.
Title: Re: Starting Harvoni!!
Post by: catniss on February 03, 2015, 11:02:38 am: Thanks ready now and WaltFrazier. Positive vibes to all.
Title: Re: Starting Harvoni!!
Post by: Lynn K on February 03, 2015, 11:44:38 am: Awesome catniss that is fantastic news fingers crossed for your SVR 12
Title: Re: Starting Harvoni!!
Post by: Long_Haul on February 03, 2015, 12:27:07 pm: Congratulations Catniss! Great News. I am in the same boat as Ready Now, it will take a while to get my arms around being undetected after 30 plus years. You will be undetected at SVR12, we are all pulling for you.

Al
Title: Re: Starting Harvoni!!
Post by: Katie on February 03, 2015, 01:32:11 pm: WoooHooo!!! Congratulations Catniss!!

Wonderful news! Now the waiting begins. I know that will be hard for me but at least the worst of winter is in the past and spring will be coming, with rejuvenation! Do something special for yourself today and enjoy your success!

Katie
Title: Re: Starting Harvoni!!
Post by: badbradley on February 03, 2015, 08:27:25 pm: Quote from: catniss on February 03, 2015, 09:17:31 am
Blood work came back UNDETECTED! Now if I can just stay that way until April 30th I will be fully cured! Wow. On cloud nine.
Good for you catniss! On to SVR12. CURED!
Brad
Title: Re: Starting Harvoni!!
Post by: kate0b1 on February 04, 2015, 06:11:23 am: sorry I'm late cants, congrats! @katie, spring is on the way (I'm calling BS on the groundhog) it was pouring rain all morning lol, I'm having spring !!! ;)

kate
Title: Re: Starting Harvoni!!
Post by: Mugwump on February 04, 2015, 07:18:51 am: Quote from: kate0b1 on February 04, 2015, 06:11:23 am
sorry I'm late cants, congrats! @katie, spring is on the way (I'm calling BS on the groundhog) it was pouring rain all morning lol, I'm having spring !!! ;)

kate
I think what is happening to the Canadian prognosticator(s) might be some weird form animal caused larceny. And they might just be getting even with us humans. There are reports of strange tasting deep fried sweet and sour pork showing in some really bad restaurants in the Wiarton area of Ontario Canada where there is still a large population of ground hogs. But then again the Chinese food in Ontario has always been well known for being vastly inferior to ours out West. I know I ate in one bad establishment on the road years ago in Portage la Prairie Manitoba going to see my wife's parents and had a suspiciously bad sweet and sour pork with tiny bones in it.

Considering that the restaurant was on the trans Canada Hwy and there were a great many little critters that are close relatives of ground hogs that ran across the road and got hit by cars all the time, I suspect that the cheap gnarly meats on the menu might just have been relatives of Wiarton Willey and Punxsutawney Phil. Perhaps they have some kind of union and are going on work to rule campaign. Even though they are fat little critters that should be good for the table rumor has it that they are not good to eat and will bring bad luck upon the diner and cook! I know every time I go fishing in the Cariboo and consider having a fat marmot for lunch bad karma and terrible fishing is the result.
Title: Re: Starting Harvoni!!
Post by: Katie on February 04, 2015, 12:49:31 pm: Eric...that is terrible for my first read of the day. Yuck! An uprising of groundhogs in that area is well deserved at that rate! HA! As for marmots, they are such interesting little critters. I was in the middle of nowhere, driving up an old mining road to a galcier and stopped to photograph them I had one come up to me within 4 feet, and I got some great shots with blooming fireweed in the background.

Another day and I am going to be bad. I am going to make a chocolate cheesescake...just half recipe..as I have been craving someithing rich and creamy. That should do it. shhhhh don't tell anyone! :o

Katie
Title: Re: Starting Harvoni!!
Post by: KathyNJ on February 04, 2015, 05:50:16 pm: Hi Catniss -- congrats on your wonderful news. You will have a wonderful, hep free life! Wishing you and all successful outcomes.
Title: Re: Starting Harvoni!!
Post by: catniss on February 04, 2015, 05:54:16 pm: Thanks everyone for the congrats. Waiting the 4 days for lab results was torture. I really need to stop the negative thinking. Winter is far from over in Maine. I think we are going to have snow until may or June. The snowbanks are so high and it just keeps coming. Chocolate therapy sounds good Katie. I did treat myself to 2 new Kate spade bags for the summer and an extra massage this month.
Have an awesome night everyone
Catniss
Title: Re: Starting Harvoni!!
Post by: DeeDee on February 07, 2015, 10:05:24 am: Good Morning

Congratulations Catniss !!!!! This is such great news.
Second bottle being delivered today and I am not budging until ups comes. Spoke with My Path and this co pay will be $5.00 instead of $70.00. Thanks everyone.
Rash has gone away it stayed for 5 days, I just drank more water than usual. I was snowed in (NE PA) so wasn't able to visit the Dr. It's good to be able to email them.

Have a good weekend everyone. :)
Title: Re: Starting Harvoni!!
Post by: catniss on February 07, 2015, 10:15:50 am: Thanks Dee Dee. Know what you mean about the snowed in thing. Thank god my doc appointment and blood work was between snow events.
Title: Re: Starting Harvoni!!
Post by: Asherah12 on February 07, 2015, 10:31:23 am: Hi Scorpio:
I wouldn't worry about it. I got tested at 5 weeks and then 8; both were no detectable viral load, down from 2 million. I worked the whole time I was on it. Just completed the other day. The best thing I found for the headaches the first few days was self-acupressure massage to liver heat clearing points(ask an acupuncturist). Just below the wrist between the two bones which go to the ring finger and pinkie. Press there. It will relieve the headache.
Title: Re: Starting Harvoni!!
Post by: Asherah12 on February 07, 2015, 10:32:07 am: Hi Scorpio:
I wouldn't worry about it. I got tested at 5 weeks and then 8; both were no detectable viral load, down from 2 million. I worked the whole time I was on it. Just completed the other day. The best thing I found for the headaches the first few days was self-acupressure massage to liver heat clearing points(ask an acupuncturist). Just below the wrist between the two bones which go to the ring finger and pinkie. Press there. It will relieve the headache.
Title: Re: Starting Harvoni!!
Post by: azsmitty on February 16, 2015, 07:17:42 pm: Hi it's been a while since I've been on.
Welcome to everyone that's new and congrats to all that have gone UD.
Readynow, the blood tests I had done at 2 weeks were just to check general blood work. I have now had my one month blood work done and my doctors MA just called to tell me I am UD. My VL at the beginning was 1.3 mil

feels great
Title: Re: Starting Harvoni!!
Post by: Long_Haul on February 16, 2015, 07:40:38 pm: Congratulations AZSMITTY! Great news, keep up the good work. You will be at SVR before you know it.

Best wishes,

AL
Title: Re: Starting Harvoni!!
Post by: Katie on February 16, 2015, 09:22:34 pm: Quote from: azsmitty on February 16, 2015, 07:17:42 pm
Hi it's been a while since I've been on.
Welcome to everyone that's new and congrats to all that have gone UD.
Readynow, the blood tests I had done at 2 weeks were just to check general blood work. I have now had my one month blood work done and my doctors MA just called to tell me I am UD. My VL at the beginning was 1.3 mil

feels great

Way To Go AZ Smitty! Keep doing what you are doing as you are killing that alien monster. Hope I can say the same in a couple weeks!

Katie
Title: Re: Starting Harvoni!!
Post by: Tiger on February 17, 2015, 01:10:55 am: Hello everybody,

New here - but I did read quite a few threads before joining. Thanks to everybody for sharing their stories and progress and wishing you all to get rid of this and forget about it - if at all possible!
Anyway, here's my story:

Age 53, Diagnosed 2007, 1b - could have contracted as early as the early 80-ies - when I was young and careless, or as late as 2005, when I lived in the country where almost every second person has it - from a dentist, possibly...

My wife diagnosed shortly after me, but surprisingly with a different GT - 2, must have gotten it elsewhere, most likely also from a dentist, or a spa/salon/nails place in the same country.

Jumping ahead - she underwent 12 weeks of Sovaldi/Ribo last summer, was UD 4 weeks into treatment and SVR12 in Dec. 24 weeks coming up end of March - keeping fingers crossed!

Back to myself: had a biopsy less than a moth ago - f2, VL about 0.5mil, had slightly elevated ALT for a few years now, but not too much at all.
Recently my primary doctor in consultation with my GI doctor tried putting me on Lipitor, but in a month my liver panel doubled up and they got me off it immediately.

Surprisingly, took a little over 2 weeks after biopsy to get approval from the insurance for 8 weeks of Harvoni, got the first bottle on Saturday and took first pill this morning - Monday.

From reading posts here, was expecting at least some unpleasantness, if nothing else - fatigue (in addition to the regular that I got used to) and/or headache, but am absolutely amazed by lack of anything even mildly unpleasant - on the contrary, kinda feel better - have more energy! Keeping fingers crossed that it's going to stay that way for the entire 8 week course. Will try to keep you posted.

One thing that I noticed though is the feeling in/of the liver - kinda a reminder that it's there and is not doing particularly well, if you know what I mean... It's similar to what I would get if I had couple of glasses of wine, which I haven't done in quite some time. Other than that, so far just great!

One question to you all: I read here you guys repeatedly emphasizing drinking a lot of water and my wife was told the same when she was on her treatment and she did drink a lot of water which was a major discomfort as she had to go almost every 15 min. I spoke with the pharmacist before starting my Harvoni and asked him about this and he said that there's no need for plenty of water other than a full glass when taking the pill to help dissolve it when not taking with food...

Any thought, I don't want to be running to the bathroom several times an hour and then to have to get up at night, which I don't have to do now, but given the age group can easily get to that...

Any thoughts?

Thanks very much and may the force be with you :)
Title: Re: Starting Harvoni!!
Post by: Lynn K on February 17, 2015, 03:19:18 am: Congrats on starting Harvoni

Here is an article from the Mayo clinic about drinking of fluids it doesn't necessarily have to be water.

http://www.mayoclinic.org/healthy-living/nutrition-and-healthy-eating/in-depth/water/art-20044256

Water: How much should you drink every day?

How much water do you need?

Every day you lose water through your breath, perspiration, urine and bowel movements. For your body to function properly, you must replenish its water supply by consuming beverages and foods that contain water.

So how much fluid does the average, healthy adult living in a temperate climate need? The Institute of Medicine determined that an adequate intake (AI) for men is roughly about 13 cups (3 liters) of total beverages a day. The AI for women is about 9 cups (2.2 liters) of total beverages a day.
What about the advice to drink 8 glasses a day?

Everyone has heard the advice, "Drink eight 8-ounce glasses of water a day." That's about 1.9 liters, which isn't that different from the Institute of Medicine recommendations. Although the "8 by 8" rule isn't supported by hard evidence, it remains popular because it's easy to remember. Just keep in mind that the rule should be reframed as: "Drink eight 8-ounce glasses of fluid a day," because all fluids count toward the daily total.

I am going with the Mayo clinic on this. Once accustomed to 8 each 8 ounce glasses plus a bit more you will have less of the every 15 minuets bathroom trips. Part of it is getting used to what you should be drinking anyway. And to avoid the night time trips try to front load the water earlier in the day.

Basically it is to flush out the meds as they are partly excreted through the kidneys so it is to help your kidneys get rid of the meds.

Congrats to you wife and good luck on treatment
Title: Re: Starting Harvoni!!
Post by: Tiger on February 17, 2015, 04:13:41 am: Thanks, Lynn!

I hardly drink any water, but I do get fluids, probably not much less then 2 liters - mostly coffee - a lot of it, 5-8 cups, some tea... my wife tells me that doesn't count - should be water... So I was curious if I should force myself to drink another liter or more of water in addition... Is coffee OK?

One other thing, I usually work out 3-5 times a week - nothing too intense: 2-3 miles/30-40 min on a treadmill with max incline (15%) @ 4.2-4.4 m/h, but it does get my heart rate up to about 145, sometimes 150. Then I do some sauna/steam. Should I continue? Do more? Do less? I do drink some water after workout and sweating, but not too much... Prefer coffee...

Thoughts?

Thanks!
Title: Re: Starting Harvoni!!
Post by: Lynn K on February 17, 2015, 04:21:30 am: I do suggest you speak with your doctor but coffee while it does provide liquid it also has a diuretic effect you still get more fluid than what you eliminate but not as efficient fluid intake than non caffeine beverages also the diuretic effect could also be a factor in those frequent bathroom trips.

My totally non medical opinion would be to trade off some of the coffee for a non caffeinated beverage but like I said for a better answer check with your doctor.

Cheers!
Title: Re: Starting Harvoni!!
Post by: kate0b1 on February 17, 2015, 06:23:13 am: @tiger, i am a coffee girl myself but have traded some in for plain water, i feel much better drinking more plain water. on the w/e i sort of slip back to not as much water and almost always feel crappy by bed time. :)

kate
Title: Re: Starting Harvoni!!
Post by: DeeDee on February 19, 2015, 07:19:12 am: Good Morning Everyone,

It's been a minute since I signed on...Congratulations for all who are UD. What a wonderful feeling! I have 16 pills left.

I am a coffee girl too but have pushed myself to drinking at least 4 bottles of water a day. I feel fine, awaiting Blood work on the 6th of March. Dr apt on the 9th. I was taking vitamin D and I think that may have caused the rash, I stopped taking it for now.

Tiger, my first thought was that I contracted from a dentist also. I remember getting very sick back in the late 70's shortly after visiting a dentist. I was so sick my eyeballs hurt. The Dr. said I had the flu. I had never been that sick. But then I had a blood transfusion in the 80's. So I really don't know how it came on.

I have a question...I notice that the Doctor sent my results to the Dept of Health in my state... Are they suppose to do that?

Have a good day everyone and keep warm.
Title: Re: Starting Harvoni!!
Post by: readynow on February 19, 2015, 06:06:43 pm: Hi:
Department of Health. Don"t know about that. I have two days left of my eight weeks. It went by fast. I want to do twelve, but Dr. said I don't need it. I said "what if I relapse?" He said we can decide about that if it should happen.
According to the Gilead trial results, the same SVR results were recorded in 8 week treatment as twelve week treatment in patients with similar parameters. (no prior
treatment with less than 6 million VL and mild fibrosis) I could do self pay for a few more weeks, but can't really afford that. I'm going to miss the daily evening ritual. I do sleep really well for about four hours after I take it. I guess wanting to continue for 12 weeks has to do with wanting to feel as positive as possible about my future. But the reality is eight weeks of therapy and that is it. Best wishes to all.
Title: Re: Starting Harvoni!!
Post by: Katie on February 19, 2015, 06:46:12 pm: Hi Ready, Best Wishes to you too. I have 7 days left of my 12 week treatment and I am anxious about quitting too. I think we all just want to be CURED forever of the alien monster parasite and not have to look back. I figure since we are the first group to be on Harvoni, we are going to be important in setting future guidelines for the treatment. The big test will come 12 weeks and 24 weeks after EOT and that is what I am really nervous about.

Did you have a 4 week test? I came back with a VL of 59 and at the time thought that was terrific but now with so many showing UD within that time little doubts raise their ugly head. HA! Then I remember it really depends on the sensitivity of the tests and that the big test will be to see if there are any little buggers hiding out and replicating.

What is interesting is that I felt better than I had in years and felt 10 years younger during the first 8 weeks and then week 9 & 10 I had severe fatigue, body aches, my tinnitus got worse and I was all gloom and doom. Then this past week I perked up again and am feeling really good, but do get tired around 2 or 3 where I really don't want to do anything.

So maybe it is time to stop medicating and start clearing my system out and see where I stand. No matter what my results are, I know they are working on this and if I need to try again, I will, insurance willing.

So here's to good luck to all of us and supporting each other through the waiting period is going to be more important than ever. I will have my blood work done on the 26th or 27th so I am right behind you. Keep in touch and I will be thinking good thoughts for your freedom of Hep C! Healing light is coming your way, from Alaska!

Katie
(can you feel it?) :-*
Title: Re: Starting Harvoni!!
Post by: Tiger on February 19, 2015, 06:50:01 pm: DeeDee,

The only reason for your doc's office (it's probably some clerk there - not the doc) to send your test results to the government that I can think of is if they are paying for it...

Other than that, isn't all medical information supposed to be private and confidential? Unless there's some regulation in your state that requires all cases of specific contagious diseases that represent public safety threat to be reported, which would still be surprising for his great country, but I d know that many much less free countries do practice such things...

Perhaps, you should inquire more about it - who knows, you may have a law suit on your hands that could possibly pay you many times the Harvoni treatment :)

Good luck with the remaining 15 and may you forget about it afterwards!
Title: Re: Starting Harvoni!!
Post by: Katie on February 19, 2015, 07:02:26 pm: Doctors do submit information to the infectious disease department, but I think they are anonymous. It's the only way they can predict outbreaks, cure rates etc. It would be interesting to find out though, and I would inquire about it.
Title: Re: Starting Harvoni!!
Post by: Tiger on February 19, 2015, 07:06:21 pm: Ready, my doc also said I only need 8 weeks and that I should be UD after about the first week or 10 days. Keeping fingers crossed!
Katie, I was told no bloodwork until it's over - will be going there right after 8 weeks and then (provided it's UD) again in 12 after that, which as I understand is the new standard replacing 24 - apparently, 99.8% of SVR12 were also SVR24 and then that 0.2% were 2 people with GT3, which seems to the reason, since Harvoni is approved specifically for GT1...

So, Healing Light back to you! :) ...and may we all look back with a smile in a few months!
Title: Re: Starting Harvoni!!
Post by: readynow on February 19, 2015, 07:29:09 pm: Katie: I was UD after four weeks. 59 is almost there. It will be interesting to see
how I feel post treatment. Lets work on keeping a positive thought process about the future. Thankful for the opportunity to be prescribed this medicine and for the forum.
Title: Re: Starting Harvoni!!
Post by: Katie on February 19, 2015, 07:36:25 pm: Hi Tiger..prior to 1980's the sanitation standards were much less in medical offices and then aids came out....and hep C wasn't known until 1989 to test for transfusions and plasma, so things have improved. I have no idea where I became infected and it drove me crazy for about a year until a friend told me "What difference does it make now...you have it so deal with it. " That kind of set me straight and that's a good friend.

I did want to encourage you to make a point of drinking pure water to help flush out your system. If your liver is healthy, it isn't so critical, but everything you drink and eat and even breathe has something the liver needs to work on, so during treatment, I think flushing with water is important. Since it is the organ that detoxifies everything, and it hasn't been able do do it at full capacity for as long as you have had this virus, it just seems to give it as much help as possible. I was poor at drinking water, and after keeping track and making sure I drink 1/2 gallon a day, I am now craving it if I get busy and fall behind. It does help and it will benefit you. When I have a busy day scheduled, I drink a couple glasses of water at once, and use the bathroom in about 20 minutes, and am good to go. I find that is better than just sipping it all day. Give it a try.

I caught your light, and thank you for it. Enjoy your evening!

Katie
Title: Re: Starting Harvoni!!
Post by: Katie on February 19, 2015, 07:39:27 pm: Ready..Yes...positive thought always and I am good at stomping out the negative ones if the creep in.. Thank you! I too am so thankful for this treatment. I had been waiting for something that made sense for me for 9 years and am so grateful the breakthrough came in time for all of us to benefit. It is a miracle and I love science!
Title: Re: Starting Harvoni!!
Post by: HHburme on February 19, 2015, 08:38:23 pm: 69 days so far with another 15 days left. The time has went by fast. Not sure if I have side effects or just worn down fighting this dragon. My tinnitus is worse also. I was UD at 4 weeks so the Harvoni has worked so far, hope I stay UD and get to SVR. It will be interesting to see how I'm feeling post tx.

JB
Title: Re: Starting Harvoni!!
Post by: Tiger on February 20, 2015, 12:39:16 am: Thanks, Katie, for the advice and yes, I did starts drinking more water and also switch from coffee to tea some time about 3 pm. and then 3 mile/800 cal incline fast walk...

I must say it really is a miracle drug - firstly: so many people have already gone virus free! Me personally - it's just the 4-th day, but I most definitely feel substantially better - hard to believe: I just now start to remember what normal used to be and am now realizing what I have been missing!... and no side-effects so far whatsoever!... knock on wood!

May God bless the scientists, the doctors, the insurance and above all this great country that makes it all possible!... and, last but not least, of course us all - the fighters, especially those on the front lines who have gone through cycles and still are in spirits and give encouragement to others! Than you all!
Title: Re: Starting Harvoni!!
Post by: Tiger on February 20, 2015, 01:09:29 am: One other thing, Katie, you're so right about our liver having to work on all of our intakes, including what we breathe and that brings me to one question and I wonder what's the informed opinion about it out there? I'm talking about weed?

I've heard conflicting accounts: my doc says that it adds to scarring, especially daily use... so it can be making matters worse... but other say it helps with a variety of symptoms - and I'm with them on this 100%, I definitely think it kept me going all these years, but hey it may be that I just love that stuff regardless. I've also heard many people say it helps with side effects of treatments, especially the older treatments... Obviously nobody knows how it interacts with these new miracle pills...

What's your take on this? Generally, weed and living with C, weed and going through treatment, etc.

I personally am talking no chances - I figured gotta give this miracle pill all the help I can and let it do its work without any interference: you know, if it may be interacting with Milk Thristle (as it has been mentioned here and also by my pharmacists) which was one thing that kept my liver relatively subdued for almost 10 years - who knows what THC can be up to in this regard... So I have stayed away from weed and tobacco for almost two months before starting the treatment (alcohol has been out for much longer now) and I will most likely continue this way after EOT, at the very least no cigarettes ever again - no going back to that!... but with weed - don't know about that, I may light up in celebration if SVR12!!!

Thoughts, experiences, ideas, comments?
Title: Re: Starting Harvoni!!
Post by: Katie on February 20, 2015, 01:45:02 am: Alcohol...no maybe I'll have a glass of wine in a year or so or maybe even a cold beer on a hot day, but I do not have cirrhosis and I will not rush into it if ever.

Cigarettes....no and congratulations!

Weed....has many medicinal benefits, although I am not a consumer. Never liked it. CNN had a great special on medicinal marijuana that you might want to check out. It's 2 parts and shows how it has helped doing remarkable things but is highly specific and grown for special traits for different conditions. Not just street quality, to be effective. Hep C or the liver was never mentioned and I think you are smart to stay away from it during treatment.

I used milk thistle, reshi mushrooms and lecithin granules (fat emulsifier) for years and believe they helped before treatment as my liver remained in good shape and liver enzymes were normal 90% of the time, and only raised slightly when I had a cold or flu. I stopped all supplements other than some Vit D every once in awhile and Vit B complex as needed, and always about 6 hrs before Harvoni. I am very fortunate because I am healthy other than joint issues and of course the Hep C. Otherwise no pharmaceuticals or any other chronic condition. I feel so fortunate as being med free at 68 is pretty good!

So, I am ready for my last week countdown to get off of this medication and hopefully clear this alien monster and get on with my life. It really took a toll on me the past 3 or 4 years causing me to retire, and like I have mentioned, I feel 10 years younger and better than I have in a long time. Best part, my insomnia of 10 years is GONE! Sleep is a wonderful, healing thing and I hope it stays that way once off Harvoni. I will be devastated if I start having sleepless nights again.

So that's my opinion but I haven't heard of interactions with weed, and haven't even seen it mentioned anywhere so I would avoid it, at least for now.

Good night....bedtime. Sweet dreams to everyone still up!

Katie
Title: Re: Starting Harvoni!!
Post by: Lynn K on February 20, 2015, 02:51:15 am: About the reporting to the Dept of Health. I did a quick search and I would guess it may vary from state to state or maybe not.

I found by searching hepatitis c reporting requirements department of health. A number of states were listed.

Here is what I found for my state Washington:

http://www.doh.wa.gov/ForPublicHealthandHealthcareProviders/NotifiableConditions/HepatitisC

Hepatitis C

Cause: Hepatitis C virus, which has 6 genotypes.

Illness and treatment: Most acute infections are asymptomatic but about 20% of cases have abrupt onset with fever, abdominal pain, and jaundice. Chronic infection is typically asymptomatic until complications such as liver damage or cancer develop; a specialist can determine treatment options.

Sources: Transmission is usually by contact with blood, particularly while sharing drug paraphernalia, or less commonly semen or vaginal secretions of an infected person.

Additional risks: Chronic infection follows acute infection in 75-85% of cases and is more likely for males, those infected after 25 years of age, or the immunosuppressed including HIV co-infection.

Prevention: Use safe sexual practices, avoid sharing drug paraphernalia, and screen blood and tissue products to prevent transmission.

Recent Washington trends: Each year fewer than 30 acute cases and around 5,700 chronic cases are reported. Current chronic hepatitis reports are posted on Washington state's chronic hepatitis surveillance page,
Purpose of Reporting and Surveillance

To identify sources of infection and to prevent further transmission from such sources
To educate cases and contacts about transmission of hepatitis C virus and how to reduce the risk of transmission
To better understand the epidemiology of hepatitis C virus infection and the burden of morbidity from chronic infection

Legal Reporting Requirements
Acute Hepatitis C

Health care providers: notifiable to local health jurisdiction within 3 business days
Health care facilities: notifiable to local health jurisdiction within 3 business days
Laboratories: Hepatitis C virus (detection of viral antigen, antibody or nucleic acid) notifiable on a monthly basis
Local health jurisdictions: Acute cases notifiable to the Washington State Department of Health (DOH) Communicable Disease Epidemiology (CDE) 206-418-5500 within 7 days of case investigation completion or summary information required within 21 days.

Chronic Hepatitis C (initial diagnosis only)

Health care providers: notifiable to local health jurisdiction within one month
Health care facilities: notifiable to local health jurisdiction within one month
Laboratories: Hepatitis C virus (detection of viral antigen, antibody or nucleic acid) notifiable on a monthly basis
Local health jurisdictions: Chronic cases (initial diagnosis only) notifiable to DOH Infectious Disease and Reproductive Health (IDRH) 866-917-4437 within 7 days of case investigation completion or summary information required within 21 days.

The department of health for each state maintains records of illnesses affecting the communities cities and counties under their jurisdiction. Just like when you hear about flu out breaks some where that is where this data comes from.

We are but data points on a chart

Lynn
Title: Re: Starting Harvoni!!
Post by: Mugwump on February 20, 2015, 04:19:01 am: Thanks Lynn
It would not at all be fair or sensible having those undergoing screening for this and other infectious diseases become labeled as "typhoid Marys"!

I am sure many good politicians saw this reality otherwise there would be a different type of data base that would include mug shots and finger prints as well as DNA profiles of all communicable disease infected individuals. To keep a world wide data base of individuals such as that would make the budget of the NSA explode to Mars and would be about as sensible as putting computers on Mars to keep the data base and thus the citizens of the country safe from harm. Full speed ahead to he%$ with the tax payers and budgets!

Fear only fear mongers... oh! and those who bean count human beings while masquerading as politicians or business persons for they are usually one and the same individuals.
Title: Re: Starting Harvoni!!
Post by: Lynn K on February 20, 2015, 04:36:10 am: I believe all infectious diseases are required to be reported to the state health departments.

I have even heard quotes Washington State has a high incidence of Multiple Sclerosis MS than average for unknown reasons they get their data from somewhere.

Couple more links for fans of links

http://www.cdc.gov/mmwr/
Morbidity and Mortality Weekly Report (MMWR)

http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6201a1.htm
Surveillance for Certain Health Behaviors Among States and Selected Local Areas — United States, 2010

http://www.doh.wa.gov/ForPublicHealthandHealthcareProviders/NotifiableConditions/ListofNotifiableConditions
Washington State Department of Health List of Notifiable Conditions

http://www.lung.org/finding-cures/our-research/trend-reports/estimated-prevalence.pdf
American Lung Association Estimated Prevalence and Incidence of Lung Disease

I just look at it as data keeping to monitor trends. I personally don't see it as anything insidious.

How would we know if there was a problem without data tracking to notice anomalies.

For example track records of hospitals for the outcomes of various procedures surly we would want to know these things
Title: Re: Starting Harvoni!!
Post by: DeeDee on February 20, 2015, 07:06:42 am: Good Morning,

Thanks Lynn K :)
Title: Re: Starting Harvoni!!
Post by: DeeDee on February 20, 2015, 07:26:40 am: Good Morning Everyone,

Thanks to you all...This journey has been pleasurable readynow, Katie, Tiger, Lynn K, Mugwump and HHburme :)

I will be looking into the reporting of it further. I read that there are 4 million people who may have it and don't know. My primary mentioned that they are screening people 60 and over for it. I was aware that the CDC are notified.
I am on countdown to having not to take another pill.

Have a blessed day
Title: Re: Starting Harvoni!!
Post by: readynow on February 20, 2015, 09:00:19 pm: Just took my 56th and last Harvoni. On my own now. Labs in four weeks. Here we go. God help us all.
Title: Re: Starting Harvoni!!
Post by: Tiger on February 20, 2015, 09:19:39 pm: Amen!!!
Title: Re: Starting Harvoni!!
Post by: Lynn K on February 20, 2015, 10:09:43 pm: Good luck ready now

Wishing you SVR
Title: Re: Starting Harvoni!!
Post by: Katie on February 20, 2015, 10:16:27 pm: Good luck to you Readynow....you aren't on your own...you have us and we are all sending you good wishes for your cure. May your life be healthy and free of HepC!

Katie
Title: Re: Starting Harvoni!!
Post by: Katie on February 20, 2015, 10:18:33 pm: Lynn...how are you feeling? Hope everything is going good for you.

I am concerned about Mel. Have you heard from her where I may have missed it on a different thread perhaps?

Katie
Title: Re: Starting Harvoni!!
Post by: MEG on February 20, 2015, 11:53:46 pm: Congratulations, ready! Sending you and everyone big huge "undetectable" energy.

How often do we want to test 0?.....LOL....
Title: Re: Starting Harvoni!!
Post by: Lynn K on February 21, 2015, 06:45:29 am: Hi Katie

I am ok hemoglobin is low from Ribavirin but other than that 10 weeks and change to go.

I checked Mel's profile I see her last post was 2/11 and last visit was 2/17 you could always send her a message to say hi :)
Title: Re: Starting Harvoni!!
Post by: Ollie on February 21, 2015, 09:20:15 pm: So many of us are nearing the end of treatment. I have 7 days left. Been an easy 77 days. My only concern is that my pre-treatment ache under my right ribs has returned. It was gone for the middle 4 weeks. I see my Dr. In 10 days. Last time I mentioned this achy area he kind of blew me off. I'm hoping to be able to get a Fibroscan. I want to know the exact health of my liver post Hep C. While I maintain fairly healthy habits, I'm told once we're SVR we can 'treat' our liver as if we never had this monster....My biopsy showed F1 7 years ago. I want to know if I've remained F1. One last thing-have any of you ever had a 'stitch' in your right side after bending over to i.e, tie your shoe or put pantyhose on? It almost feels like something ( my liver?) is kinked - very painful until I straighten up.
I'm so thankful for this forum and appreciate all of you contributing!!
Title: Re: Starting Harvoni!!
Post by: readynow on February 21, 2015, 09:43:47 pm: Hi: Wondering who told you once the virus is gone, you can treat your liver as if you
never had it? I'd be careful of following that advice. I've had different feelings of pressure in the liver area at times. When I have indigestion, that is where I feel it.
Could be psychosomatic, since I'm always consciously and unconsciously aware that I am a carrier of this condition.
Title: Re: Starting Harvoni!!
Post by: Katie on February 21, 2015, 10:55:37 pm: I would tend to think you should protect your liver after treatment, just like you have after diagnosis. The liver has been damaged and depending on the scar tissue, especially if you have cirrhosis, your liver will still be compromised and problems can arise. Granted, the liver can heal itself to a certain degree, but that takes time.

Once you are clear of the virus, for sure, you can no longer infect anyone, even though your blood work will show the antibodies. That is the good news.

Just remember it is the post treatment test at 12 weeks and I am not getting excited until 24 weeks which comes up UD. UD during treatment does not mean that your have cleared it totally because the tests are not sensitive enough to detect down to 0. Also the virus in the blood can be less than what is actually found in the liver tissue. This research is on this forum under the research thread. So always think about what you are putting into your system and what it is doing! Lesson learned having to deal with this alien virus for a decade or more.

Katie
Title: Re: Starting Harvoni!!
Post by: readynow on February 22, 2015, 07:58:26 pm: Katie: That's some good advice. I don't see the research thread. How do I find that? Thanks
Title: Re: Starting Harvoni!!
Post by: Tiger on February 22, 2015, 08:10:19 pm: Hi, actually here are two new threads which provide some excellent information and explanation - highly recommend to check out:
http://forums.hepmag.com/index.php?topic=2237.0
and also
http://forums.hepmag.com/index.php?topic=2236.0
Title: Re: Starting Harvoni!!
Post by: Katie on February 22, 2015, 08:23:31 pm: Quote from: readynow on February 22, 2015, 07:58:26 pm
Katie: That's some good advice. I don't see the research thread. How do I find that? Thanks

Hey Ready..if you go to the top of this page and click on forum and scroll down you will see Hepatitis C Research News & Studies. There is lots of good information there and to be honest, I don't know for sure which post had that info. I've read so much. I am sure you'll find that and the other topics helpful.

Hope you are enjoying your Sunday. I just about have my bedroom painted, but had to take a break and think I'll finish it up tomorrow. Tired out. Feels good to accomplish something though. <Big Smile>

Katie
Title: Re: Starting Harvoni!!
Post by: atomic dog on February 28, 2015, 01:28:22 am: Quote from: lporterrn 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.

On Day 12 and already had blood work, noticeable drop in ALT and AST and it is reassuring to be able to see those numbers--wouldn't want to wait till six weeks, but rest assured that Harvoni is a powerful drug and despite the usually mild side effects chances are high that it's doing its job.
Title: Re: Starting Harvoni!!
Post by: HHburme on March 06, 2015, 11:06:12 am: Day 84..... just swallowed my last orange miracle pill !! The treatment is over ! Now I hope to stay UND and achieve SVR and finally be done with this leech of a disease that had been slowly attacking me since I was 18 years old. Experiencing a multitude of feelings right now and would like to thank everyone on this forum for the support,love,and information that you have given me.
Health and Happiness to all !!!

John
Title: Re: Starting Harvoni!!
Post by: atomic dog on March 06, 2015, 12:55:21 pm: Quote from: HHburme on March 06, 2015, 11:06:12 am
Day 84..... just swallowed my last orange miracle pill !! The treatment is over ! Now I hope to stay UND and achieve SVR and finally be done with this leech of a disease that had been slowly attacking me since I was 18 years old. Experiencing a multitude of feelings right now and would like to thank everyone on this forum for the support,love,and information that you have given me.
Health and Happiness to all !!!

John

Congrats and wishing you good fortune!
Title: Re: Starting Harvoni!!
Post by: Ollie on March 07, 2015, 12:51:46 pm: Loved that last pill-mine was exactly 1week ago. Almost feels strange not to have it as part of my morning routine. I made a countdown pad from #84 to #1 Loved teaRing off each number in the morning!! Onward to SVR, Yahoo!!
Title: Re: Starting Harvoni!!
Post by: kate0b1 on March 08, 2015, 07:05:07 am: @john and ollie, i have 4 days to go ;D, I'm excited and nervous at the same time, best of luck guys. stay well

kate
Title: Re: Starting Harvoni!!
Post by: Long_Haul on March 08, 2015, 10:38:35 am: @Kate, I am 2 weeks behind you, the 4 days will go quickly. Keep working on the cabinets, the time will fly by. Looks like it will be above freezing in VT today, Finally!

AL
Title: Re: Starting Harvoni!!
Post by: kate0b1 on March 09, 2015, 06:18:33 am: @al, jezz isn't it nice to see the snow melting, its going to be in the 40's all this week, maybe spring is really coming 8). I'm so happy/nervous to be done this week. i have labs on friday and then june 5th.

PS the cabinets are done, now I'm on to painting the walls (cause now they don't look right lol)

kate
Title: Re: Starting Harvoni!!
Post by: Katie on March 09, 2015, 12:25:29 pm: Good Job Kate. The carpenters will be finishing up today for me! You'll have to post a picture.
Better get those walls painted before spring gets here, though! Glad the temperature is going up for you guys. What a winter you have had (in more ways than one).

There are mixed feelings with ending treatment and giving up our security blanket. My good wishes and support are right there with you.

I just know you have kicked that Alien Monster's butt and will be free to get on with your life! Hope all goes well for you. Sending a BIG ((((HUG))))

Katie
Title: Re: Starting Harvoni!!
Post by: Katie on March 09, 2015, 03:29:31 pm: Update on remodel: grrrrrr carpenter called and said a big job came up that he couldn't turn down so I am on HOLD. Not happy.....but I really like him and he does great work. He's just branching out on his own and can't afford to pass up on a good paying job with duration. I even baked him an apple pie, from my home grown apples! He groaned when I told him that. Serves him right! HA!

Just had to share that as I have been talking about my remodel on and off for quite awhile now.

It will get there and I'll be a happy camper. It just hasn't been that good of a week for me. That's 2. Wonder what is coming next? (The old saying about trouble coming in threes!)

Katie
Title: Re: Starting Harvoni!!
Post by: DeeDee on March 12, 2015, 06:55:23 am: Hello Everyone,
My Results after 8 weeks...I did not go undected but the levels are no longer 2,017,239. I will give blood in 6 weeks

HCV RNA HCVXD IU/mL <15 A
HCV RNA Detected, Not Quantifiable
LOG OF HCV 0 log IU/ml <1.18 H

HCV RNA COMMENTS
COBAS Ampliprep/COBAS TaqMan HCV Test v2
(Roche Molecular Systems) for the direct
quantification of HCV RNA in plasma of
HCV-infected individuals. The reportable range
for this test is 15 to 100,000,000 IU/mL. The
limit of detection is 11 IU/mL. Results greater
than or equal to 11 IU/mL but less than 15 IU/mL
are above the limit of detection but below the
lower limit of quantitation.

A little disappointed but I will continue the battle...And just a thought I gave blood on the 6th but that night I took my last pill.

Have a good day everyone
Title: Re: Starting Harvoni!!
Post by: zora1959 on March 12, 2015, 09:59:52 pm: Hello Everyone,
I put in my script last Saturday March 7th 2015, at the pharmacy. I am happy to have received my Harvoni & Ribavirin on today the 12th. I'm very surprised that I got the meds so quickly. My viral load was pretty high maybe that worked in my favor, I also am a 2x non-responder. Still waiting to exhale, I will begin my meds on Sunday. I'm thankful to be able to share with you on this forum.
Thanks Zora1959.
Title: Re: Starting Harvoni!!
Post by: Ollie on March 12, 2015, 10:29:32 pm: Good luck Zora. This is YOUR time!!
Title: Re: Starting Harvoni!!
Post by: Katie on March 12, 2015, 10:37:20 pm: Hi Dee Dee, Are you taking Harvoni for 12 weeks or just the 8? I came back detected after 12 weeks and my report was <12 detected, so my test must be a bit more sensitive than yours. It didn't give me the level of sensitivity for being able to detect so that is something I am going to ask about.

It is disappointing, however we are responding to the treatment and if you have another 4 weeks on Harvoni I am sure you will be fine.

My doctor told me today, that I shouldn't stress about it and he wants another test in a month so here's hoping we both come back with that magic word of Undetected.

You aren't alone and we'll be fine!

Katie
Title: Re: Starting Harvoni!!
Post by: catniss on March 13, 2015, 08:22:48 pm: Hi everyone. It truly is Friday the 13th. Got 6 week after treatment labs done Monday. My doc really does not put much faith in the 6 week lab results. Just a positive motivation for me so I had them done. The lab I went to runs the test every Thursday so I call doc office today for results. She called me back and said the lab could not run the test because not there was not enough blood to work with. Now the lab tech was having a hard time with the needle and I asked her to try the other arm but she said everything shouybe fine. Well I guess not and they waited for me to call and ask about it. Needless to say I was pissed. Talked to a customer service person and the head of the lab is supposed to call me back. What a day. My doc called new lab work into a different place but can't do anything until Monday. Thank god this is not the 12 week labs.
Title: Re: Starting Harvoni!!
Post by: Katie on March 13, 2015, 08:33:09 pm: Hi Catniss...I am so sorry. It is terrible on your stress level when incompetence happens. Hopefully all will be fine with you but since you already were UD I am confident you are on your way to a complete cure!. I'll keep you in my thoughts!

Katie
Title: Re: Starting Harvoni!!
Post by: catniss on March 13, 2015, 08:40:56 pm: Hey Katie. Thanks for the kind words. Just had to vent. I read the painted drum and loved it. Also don't know how far you are from the northeast but when you are done tackling your house projects I have a few I could use help with. The pay is fresh lobster.
Title: Re: Starting Harvoni!!
Post by: Katie on March 13, 2015, 08:48:03 pm: Venting is good, Catnis! I am clear across the country in SE Alaska...the Great Northwest, but boy, that lobster sounds good. I could maybe trade for some salmon! ;) Good hearing from you and I'll be thinking of you next week!

katie
Title: Re: Starting Harvoni!!
Post by: Katie on March 13, 2015, 08:49:56 pm: Also..I just ordered another one of her books and read the Round House too. So far, The Painted Drum is my favorite.
Title: Re: Starting Harvoni!!
Post by: catniss on March 13, 2015, 08:54:28 pm: I also read the round house. Good book.
Title: Re: Starting Harvoni!!
Post by: catniss on March 13, 2015, 08:57:11 pm: I lived in the pacific northwest for 5 years and miss the salmon and halibut. My husband made it to Alaska for 1 night. His last boat in the navy was the USS Alaska.
Title: Re: Starting Harvoni!!
Post by: Katie on March 13, 2015, 09:05:22 pm: I have always wanted to visit the New England states. Maybe someday. I love it here and am very content to stay put. If I ever free myself of HCV I may put my wandering shoes back on. :)
Title: Re: Starting Harvoni!!
Post by: DeeDee on March 14, 2015, 09:27:04 am: Good Morning,

@ Katie, it was for 8 weeks, It is disappointing, however we are responding to the treatment.Yes i am sure we will be fine and hoping we both come back with that magic word of Undetected.

@ Catniss, just hang in there, I feel you...it took 3 days before I got my results. One thing for sure Harvoni is working for us. :)

@ Zora1959, welcome to this beautiful forum
Title: Re: Starting Harvoni!!
Post by: catniss on March 18, 2015, 11:45:41 am: Awesome news! I just got a call from the nurse and she said my 6 week labs came back UD! She actually called me instead of me calling her a thousand times. I took Monday off from work to go talk with the lab and my doc to get some answers about the lab mess last week. Its sad that I had to do so much running around and being so forceful to get the treatment everyone deserves and should get. But I guess they know now I mean business. 5 weeks to go to being CURED!
Title: Re: Starting Harvoni!!
Post by: Lynn K on March 20, 2015, 08:10:00 pm: Great news catniss I have read about 70 % or so who relapse do so in the first 4 weeks post so almost home free!!!

Congrats!
Title: Re: Starting Harvoni!!
Post by: catniss on March 20, 2015, 08:12:42 pm: Thanks Lynn. I have tried to look up any research on relapse rates and no luck. Where did you find info?
Title: Re: Starting Harvoni!!
Post by: Lynn K on March 20, 2015, 09:11:08 pm: I think that may have been from sovaldi tx vs riba. When you say relapse rates are you asking about SVR by groups or what is the timing of relapse Like the 70% relapse by week 4 Actually I did find something even better but still for Sovaldi but one would think Harvoni would be similar if not better

Here is a quote and a Link

Concordance data: SVR at weeks 4, 12 and 24.Traditionally, with interferon-based therapy for HCV, the absence of detectable virus 24 weeks after completing treatment has been used to define SVR24. However, recent analyses have suggested that SVR12 and SVR24 are concordant across treatments that include peginterferon/ribavirin and also peginterferon/ribavirin triple therapy including telaprevir and boceprevir, with positive predictive values of 98% for SVR12 and 91% for SVR4 [Chen et al. 2013]. The concordance of SVR4, SVR12 and SVR24 has been assessed in the sofosbuvir phase II program including 590 patients. High levels of concordance were observed between SVR4 and later time points and positive predictive values and sensitivity of SVR4 for SVR12 and SVR24 were greater than 98.5% [Lawitz et al. 2013a]. Increasing reliance on these earlier time points of SVR4 and SVR12 to determine outcomes is almost certainly accelerating the pace of drug development.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3968818/
Title: Re: Starting Harvoni!!
Post by: Katie on March 21, 2015, 04:05:42 pm: Quote from: DeeDee on March 14, 2015, 09:27:04 am
Good Morning,

@ Katie, it was for 8 weeks, It is disappointing, however we are responding to the treatment.Yes i am sure we will be fine and hoping we both come back with that magic word of Undetected.

@ Catniss, just hang in there, I feel you...it took 3 days before I got my results. One thing for sure Harvoni is working for us. :)

@ Zora1959, welcome to this beautiful forum

DeeDee: I wanted to let you know to check the Topic: Detectable RNA levels at End of Treatment not necessarily predictive thread started by Dragonslayer. It has some [positive news for us who have been detected with low levels at the end of our treatment.

Hope you are doing well and have been thinking of you. We are in this together and you aren't alone!!! We are going to be fine.

Katie
Title: Re: Starting Harvoni!!
Post by: DeeDee on March 22, 2015, 08:53:39 am: Good Morning Katie,

Ok I will read that topic. Thank you, you are a sweetheart :) I am just awaiting that 6 week blood work up, praying that it will be ud. Have a great day...Hey It's Spring
Title: Re: Starting Harvoni!!
Post by: Pungarson on March 22, 2015, 08:08:39 pm: Hi Everybody: I am new to the forum but not to HCV. I was diagnosed in the late 1980's with non-A non-B hepatitis. It was later confirmed to be HCV. I have genotype 1a. I am starting Harvoni this coming week. It should be arriving by mail and I am to contact my physician before starting the medication. I was reading some interesting posts last night (which I do not find now) and hope to be able gain some insights into what I can expect. I am taking a shot in the dark with this post and see where it goes. thanks for all those who have posted and to the moderators. Good luck. Thanks
Title: Re: Starting Harvoni!!
Post by: Katie on March 22, 2015, 08:23:56 pm: Welcome Pungarson and you have come to the right place for information and support. I hope your treatment is easy and successful! Harvoni is a great breakthrough and is helping so many people! The Harvoni treatment can have some side effects, but overall is easily tolerated and some of us started feeling better, almost immediately, than we had in years!

If you remember who posted information you want to access, go to the top of the page and you can search them and all of their posts will pop up. There are lots of different threads so it is easy to forget where you saw them. I find the Side Effects thread to be really helpful. If you click on Hep C Forums you can usually find different topics. Hope this helps.

Good luck to you and don't be afraid to ask questions. You aren't alone, and we are here for you!

Katie
Title: Re: Starting Harvoni!!
Post by: Pungarson on March 22, 2015, 08:50:57 pm: Thanks Katie for the quick response and for the tip. I am looking forward to my mail tomorrow. I hope the meds arrive.
Title: Re: Starting Harvoni!!
Post by: Pungarson on April 07, 2015, 06:24:34 pm: Harvoni pills arrived today! I am about to take my first dose of a 12 week therapy. It has been an agonizing few months but I am very grateful to be where I am. I thank everyone who has posted. Your tips will kept close by and I will not hesitate to share my observations or comments should the need arise. I feel like a kid taking a deep breath and jumping in the pool not knowing how deep or how cold the water is. I take some comfort in the knowledge that others have been down this road before me and there is always hope. Well here goes! Thanks