Author Topic: Starting Harvoni tonight...need some encouragement (Read 37789 times)

lockettal73 · « **on:** April 01, 2015, 03:42:15 pm »

So...I started the process to be approved for Harvoni on last Monday and was approved yesterday. I thought it would take weeks. I'm with UnitedHealthcare and they covered almost all of the $31,000 for the 12-week regimen. My copay is only $5. That's a blessing, since most of the other people I know who are on a regimen are paying hundreds of dollars in copays. I keep thinking UHC is gonna call me back and tell me there was a mistake LOL

My first 30-day supply was delivered to my house today and I'm nervous about starting my treatment tonight. I've read a lot of the posts about the side effects. I'm so nervous! Just need some encouragement. I'm glad I have this forum and know I'm not alone.

Scared in Brooklyn,

Anthony

Debula · « **Reply #1 on:** April 01, 2015, 04:13:10 pm »

Hi
I am so glad to hear that you got your Harvoni so easily!
I know how scared you must feel (I am nervous too) but try to stay positive and think of all the good you are doing for your liver and your life!

Keep us posted on your progress

Good luck
Deb

lockettal73 · « **Reply #2 on:** April 01, 2015, 04:30:11 pm »

Thanks, Deb! I will definitely be keeping you guys updated

SIXFOOTFOUR · « **Reply #3 on:** April 01, 2015, 04:44:29 pm »

Congratulations on getting approved and welcome.

I was worried as well when starting but for most of us there are little to no side effects, consider yourself very lucky to get this new generation of medication compared to what used to be available!

Go ahead and get started to recovery, chances are the worst youll have is a little headache or light stomach problems. Drink a lot of water , stay hydrated it greatly helps.

Also on and the $31,000 you mentioned is not for 12 weeks, that is cost of Harvoni every 4 weeks (28 pills, about $1100.00 a pill) 12 weeks tx is over $ 90,000

lockettal73 · « **Reply #4 on:** April 01, 2015, 04:49:37 pm »

Quote from: SIXFOOTFOUR on April 01, 2015, 04:44:29 pm

Congratulations on getting approved and welcome.

I was worried as well when starting but for most of us there are little to no side effects, consider yourself very lucky to get this new generation of medication compared to what used to be available!

Go ahead and get started to recovery, chances are the worst youll have is a little headache or light stomach problems. Drink a lot of water , stay hydrated it greatly helps.

Also on and the $31,000 you mentioned is not for 12 weeks, that is cost of Harvoni every 4 weeks (28 pills, about $1100.00 a pill) 12 weeks tx is over $ 90,000

Thank you for that info! It's greatly appreciated! I made sure to ask if I was approved for coverage for the entire 12 weeks and they said yes. There's no way I could have afforded this medication otherwise. Please do stay in touch. I need all the encouragement and knowledge I can get

anniemybaby · « **Reply #5 on:** April 01, 2015, 06:32:56 pm »

Good luck I know I was very nervous when I started n just remember the side effects are nothing compared to the old treatment my side effects were extreme fatigue in fact I took a leave fr work till I was finished I did the 8 wk treatment an as of I'm undetected just take it day by day n you might not have any side effects good luck

lockettal73 · « **Reply #6 on:** April 01, 2015, 06:50:58 pm »

Quote from: anniemybaby on April 01, 2015, 06:32:56 pm

Good luck I know I was very nervous when I started n just remember the side effects are nothing compared to the old treatment my side effects were extreme fatigue in fact I took a leave fr work till I was finished I did the 8 wk treatment an as of I'm undetected just take it day by day n you might not have any side effects good luck

Thanks for that! I tried the old regimen and couldn't tolerate it. I'm so glad we have this option that there's hope.

Philadelphia · « **Reply #7 on:** April 01, 2015, 07:58:02 pm »

A journey of a thousand miles starts with a step. Take the first step. There might be days when you wonder why you did, but this is an amazing opportunity.

Eyes on the prize!

atomic dog · « **Reply #8 on:** April 02, 2015, 12:48:14 am »

Eyes on the prize, indeed. There can be rough patches, but for most people, for the most part, treatment is easier than Hep C. Remember that the success rate is high and the odds are with you. Hang tough.

SIXFOOTFOUR · « **Reply #9 on:** April 02, 2015, 11:28:34 am »

Hey Lockettel
Did you start last night?

How do you feel first day?

I started my 2nd bottle today and all is good.

lockettal73 · « **Reply #10 on:** April 02, 2015, 11:37:01 am »

Quote from: SIXFOOTFOUR on April 02, 2015, 11:28:34 am

Hey Lockettel
Did you start last night?

How do you feel first day?

I started my 2nd bottle today and all is good.

I feel like I was hit by a train. 20 minutes after I took my pills (Harvoni + meds), I couldn't keep my eyes open. I tossed and turned all night. I feel like I'm walking through water and my brain is foggy. I will likely take off tomorrow and not come to work. I'm off all next week. That should give me some time to adjust. NO MATTER WHAT, I won't be missing any doses.

Thanks so much for reaching out to me. It means the world...

lockettal73 · « **Reply #11 on:** April 02, 2015, 11:37:26 am »

Quote from: Philadelphia on April 01, 2015, 07:58:02 pm

A journey of a thousand miles starts with a step. Take the first step. There might be days when you wonder why you did, but this is an amazing opportunity.

Eyes on the prize!

Thank you, thank you, thank you!

lockettal73 · « **Reply #12 on:** April 02, 2015, 11:38:10 am »

Quote from: atomic dog on April 02, 2015, 12:48:14 am

Eyes on the prize, indeed. There can be rough patches, but for most people, for the most part, treatment is easier than Hep C. Remember that the success rate is high and the odds are with you. Hang tough.

I'm gonna do my best!

SIXFOOTFOUR · « **Reply #13 on:** April 02, 2015, 12:38:27 pm »

lockettal

Im sorry and surprised that you had that much of a reaction to the harvoni. I saw that you had tried previous tx and stopped. Stick with this , really for most of us the side effects on Harvoni are minimal, but everyone is different.

I was approved 2x before for tx but at the last minute declined because I did not think I would be able to work on it do to all the side effects so i waited for this new generation on meds.

Try to remember that in general Harvoni is a walk in the park compared to what was offered before and success rate is so much higher . Stick with it , Ill bet it gets a lot easier for you in the next week. Keep drinking a lot of water , for me that was the single best advice.

Also you said "other meds", I dont want to pry but you may want to try to space out any other med a couple hours away from the Harvoni, it may help. Im also on a lot of other meds due to chronic pain and spinal injury etc, I have to take anti seizure, pain meds, as well and ive tried to make sure that I seperate them as much as possible from the Harvoni

anniemybaby · « **Reply #14 on:** April 02, 2015, 08:55:18 pm »

Lockettal I also had major fatigue n brain fog on harvoni I ended up taking a leave from work till I was finished with treatment stick to it its worth it in the end I did n 8 wk treatment n was undetected at 4 n 8 wks good luck I'm rooting for you

atomic dog · « **Reply #15 on:** April 02, 2015, 09:47:58 pm »

Today was one of my worse days. Fatigue, muscle weakness, joint pain, short winded, pins and needles . . . cripes.

anniemybaby · « **Reply #16 on:** April 02, 2015, 09:58:11 pm »

Atomic dog I'm so sorry to hear that hopefully there's better days ahead I know how your feeling things will get brighter

almost done · « **Reply #17 on:** April 02, 2015, 10:10:31 pm »

Don't be scared! I am 6 weeks in and it much easier than I ever expected. I'm 64 and have continued my exercise classes, skiing, working, pretty much everything! A few headaches the first few days, then pretty much nothing. I have taken a total of 3 tylenol so far. I was pretty spun up (scared) before starting, and am so pleased to not feel as crappy as I did on previous treatments.

I drink lots of water as suggested on this board. Go for it man, your worth it!

lockettal73 · « **Reply #18 on:** April 02, 2015, 10:25:39 pm »

Quote from: almost done on April 02, 2015, 10:10:31 pm

Don't be scared! I am 6 weeks in and it much easier than I ever expected. I'm 64 and have continued my exercise classes, skiing, working, pretty much everything! A few headaches the first few days, then pretty much nothing. I have taken a total of 3 tylenol so far. I was pretty spun up (scared) before starting, and am so pleased to not feel as crappy as I did on previous treatments.

I drink lots of water as suggested on this board. Go for it man, your worth it!

You guys are so awesome in your support!

Philadelphia · « **Reply #19 on:** April 02, 2015, 10:47:40 pm »

We are all walking your journey with you. Some are a ways ahead, some have just started, some have finished. But we're all part of it. We care because that's what people do.

drmhed · « **Reply #20 on:** April 03, 2015, 01:02:27 am »

So you posted on the 1st. Well, here's the first bit of encouragement...I took my first Harvoni pill this morning! You're not alone.

) Also, my copay is only $5 per month. AMAZING! Even though I took mine with food, a little later in the day I did notice kind of a pharm/medicine taste...just a hint. Felt barely queazy for maybe an hour. Otherwise, so far, so good. Hey, we're both (all!) SO BLESSED that these new treatments have come out. A very few years ago, we'd maybe fantasize that we'd someday be 'cured'. Suddenly, it's apparently quite likely!! Just keep taking those daily steps forward. It'll be over (and hopefully successful) before you/we know it! That's our story and we're sticking to it!

)

Philadelphia · « **Reply #21 on:** April 03, 2015, 06:50:10 pm »

How are things lockettal73?

lockettal73 · « **Reply #22 on:** April 03, 2015, 06:55:57 pm »

OMG today was such a great day! Virtually no side effects. I was feeling a little off this morning for a while but I'm much better now! I'm looking forward to tomorrow!

maggie · « **Reply #23 on:** April 03, 2015, 06:59:32 pm »

lockettal and drmhed - I'm only 2 weeks in an 8 week course of Harvoni, but agree we are all walking this journey with you! First 5 days on Harvoni were the worst for , felt confused and scattered, plus headache and fatigue. Very fitful sleeping at first, too. I had been taking a nightly dose of Zantac for stomach acid so weaning myself from antacid before starting treatment was hard. I take the Harvoni first thing in the morning, usually fasting or after a sip of coffee. Drinking copious amounts of water helps but I still have a mild headache and get very tired by afternoon. Taking it day by day and learning to adjust my schedule and try to avoid stress. Eating nothing 2 hours before bedtime helps, too. Best wishes to you both!!

Philadelphia · « **Reply #24 on:** April 03, 2015, 08:41:53 pm »

Great to hear!

lockettal73 · « **Reply #25 on:** April 03, 2015, 08:43:45 pm »

I think I spoke to soon...this unbelievable tiredness came over me a few hours ago. And I seem to be real emotional right now. I think I'm gonna turn in early tonight...

lovinglife · « **Reply #26 on:** April 03, 2015, 10:59:38 pm »

My story - (coming up now on week 10 of 12 weeks Harvoni treatment) is basically as follows: first 2 weeks the most challenging with intermittent chills, mild headaches sporadically, some flu-ish feelings, but nowhere near as bad as a real flu. I worked full time at a hard occupation the whole time. I really tried to drink water, eat healthy, mildly exercise, pray, meditate, and not let myself be psychologically reactive. After the first 2 weeks, sides diminished to basically nothing, except some chills here and then (but it was also deep winter). I am almost CURED and am so grateful. I did not have any significant cirrhosis so maybe this was a factor
in my good tolerance of this med, which seems to be the case with most. We are so blessed!! Focus on the positive! Best to all!

drmhed · « **Reply #27 on:** April 03, 2015, 11:20:53 pm »

Maggie...and others...after two days, it's great to hear how it gets easier as you progress. Day two for me...no queasiness whatsoever. Like just about everybody, I am fatigued. Not horribly exhausted, just fatigued, (and maybe a little bit 'foggy'.) I just remind myself that there have been countless times in my life when I was just as fatigued or more, (work, kids, stress, playing too hard...hehe.) So, in a way, it's no different now. At 65, I'll just forge along through life, and try to get plenty of rest...knowing that the promised land, (or at least a 96% chance at the promised land

), is now LESS than 12 weeks away. IMO, after probably 44+ years, that's a VERY easy trade-off. Again, it is SO great to read the experiences of those of you who are a few weeks ahead of me, and also SO great to read, with the early stages reports, I'm not alone...WE'RE not alone. Everybody take the best of care, and I wish EVERYBODY complete success!

Lindy · « **Reply #28 on:** April 04, 2015, 10:17:18 am »

I started Harvoni and am on my last four weeks. Had headaches and a few joint aches not much compared to other treatments I heard about. After first four weeks virus was undetectable. wish you the best of luck in your treatment. I consider this a miracle drug with such a wonderful cure rate.

Pete · « **Reply #29 on:** April 04, 2015, 02:01:00 pm »

Don't be too concerned with side effects. Most report minor if any at all.

I'm 4 weeks in and no side effects to report so far. Just remember to eat well, sleep well and drink lots of water. Go for walks, keep a positive outlook, be happy to know you've got an excellent shot at being cured.

Important - Take your pill at the same time every day. I find 11am works good for me. I set the alarm on my iPhone just before I go to bed to remind me to place my pill the watch pocket of the jeans that I'm wearing to work the next day. Then again at 10:30, 11:00 and 11:30am. pill time...

Perhaps a bit over the top, but I do not want to miss a dose. Best of luck, you'll be fine.

pete

chaser · « **Reply #30 on:** April 04, 2015, 09:53:21 pm »

11 more Harvoni to go to complete an 8 week treatment. After a few initial headaches and soreness the only minus I find is a washed out feeling. Not a bad tired, more like a sleepy lazy fatigue. I guess I temper that with knowing that the meds are working. Clear after 4 weeks. Some brain fog. Some aches. But all in all just a fatigued feeling. If this is the trade off, I'm more than happy. Going to be 64 in a few days. Had this in me for God knows how long. I hope that you experience nothing worse than I.
Geno 1
6 million viral load
no damage to liver according to biopsy and sound
treatment naive
Looking forward to tomorrow
Good luck

Bituman · « **Reply #31 on:** April 04, 2015, 10:44:56 pm »

Quote from: chaser on April 04, 2015, 09:53:21 pm

Looking forward to tomorrow

Well said Chaser, me too.
Bob

Mike Conwell · « **Reply #32 on:** April 05, 2015, 09:44:40 am »

I myself have 9 pills left on a 12 week tx. Don't worry about it. I have been able to work though the whole thing. Some days are bad but the options in not taking Harvoni are not good. Success in cure rates are great. I've done trial meds went to 0 then last 2 weeks the virus was back with a vengeance. 11,000,000 VL when I started Harvoni. I'm not going to lie to you some days are rough but nothing you can't handle. My advice is keep your head up stay positive and know the virus will be GONE.

.

lockettal73 · « **Reply #33 on:** April 06, 2015, 04:25:06 pm »

Thanks for all the encouragement! As of now, my only side effect is fatigue. But, even that seems to be happening at the same time everyday. I can lick this! I know it!

SIXFOOTFOUR · « **Reply #34 on:** April 06, 2015, 04:42:02 pm »

lockettal

I found I wanted more sleep since being in tx. Are you taking it am or pm. For me early pm works best then try to get at least 7 hr sleep and drink a lot of water and things are good. Once in a while Im more tired then I think I should be but considering what this drug is doing Im surprised its not more...

Stick with it, you tried the old programs so you know how much easier this is and Ill bet it gets a little easier as you progress.

lockettal73 · « **Reply #35 on:** April 08, 2015, 07:07:39 am »

Last 2 days not so good...extreme fatigue yesterday and a huge headache that started yesterday evening...woke up this morning with another headache and aches...the fatigue will hit around 1pm or 2pm and last until I go to sleep...but no matter what, it could be worse. Eyes on the prize!

Philadelphia · « **Reply #36 on:** April 08, 2015, 07:21:55 am »

This too shall pass. You're going really well. Wait for your blood tests, that will perk you up no end, I bet!

lockettal73 · « **Reply #37 on:** April 11, 2015, 06:03:45 am »

Lord, give me strength...gotta take this medicine for 3 months. Been on it for 2 weeks now and these side effects are killing me! Today, I woke up with pain throughout my body - it even hurt to stretch or flex my feet! It's like the ache is in my bones. Eyes on the prize, though! The end result is more than worth it...

Lindy · « **Reply #38 on:** April 11, 2015, 10:10:42 am »

You'll get through it. I'm on my last 2 weeks and was virus free after the first four. Had some horrible headaches and felt like my legs weighed a ton and some fatigue but figure the end results were way worth it. I would take my pills at about 6 p.m. when I'd get home from work thinking I'd sleep through most of it.
Hang in there and I'm sure you will happy with the end results and how being virus free is an amazing gift.

Mike187 · « **Reply #39 on:** April 11, 2015, 11:25:17 am »

I also started this 8 days ago I take it at 7 am every môrning with a Tylenol compared to the injections that had stop working after 7 months I'll take it got body aches headache that ain't to bad I haven't missed one day of work but am extremely tired after work my insurance approved it right away co pays for total is 15 bucks thank god I have this med working to kick this hep c a$$ blood work in 10 days ur not alone in this fight prays for all

debkatgirl · « **Reply #40 on:** April 17, 2015, 09:16:58 pm »

I started harvoni on April 1 2015 so far only a slight headache. My lab results are improving every week.This is the fifth try to cure me and this drug seems to be the one. I had to have a liver transplant in Feburary 2011 due to the hep c . As far as we can tell I was infected by blood transfusion in 1976 during the removal of my right kidney. Now I am being worked up for kidney transplant as the remaining one is working only 19%. With Harvoni it is giving me a chance to be in a healthier state.Will be tested April 28th for viral load, mine is currently at 8million.Everyone I know is tolerating treatment well. Good luck

lockettal73 · « **Reply #41 on:** April 17, 2015, 10:23:29 pm »

Well, the fatigue hasn't gone away - it's actually gotten progressively worse. So, my doctor is taking me out of work on medical leave for 2 weeks so I can rest and try and adjust. This has been hard but under NO circumstances will I be stopping this regimen. I will be cured!

Dragon · « **Reply #42 on:** April 17, 2015, 10:29:46 pm »

This is my first post hope im doing this right just started harvoni three days ago feeling a little achy but so far doin okay it helps reading others post

Mike Conwell · « **Reply #43 on:** April 17, 2015, 11:38:17 pm »

Don't worry about it, it will be fine I just finished 12 weeks it seemed to go in spurts for me a couple weeks at a time. You'll make easy enough

chaser · « **Reply #44 on:** April 19, 2015, 12:45:43 am »

Rather than jump around as I have in my posts here I thought I would try to tag one conversation. I just completed an 8 week Harvoni treatment. Viral clear at 4 week blood work. Last pill was on 4/14/15. Did blood work for my treatment on 4/15/15. Results not back yet. Scheduled fasting blood work with primary care doc back in January before I knew I would be approved for Harvoni and that was drawn on the 16th. Results were given to me over the phone and for the first time since being diagnosed as positive my liver functions were NORMAL. Sweet. Now I await the big lab report. And I wish to report that some of the achey has come back, but I've been worse. AND....I feel much better! As I had said in the beginning, a veil has lifted. It's hard to put my finger on it, but I came to the conclusion, not knowing how bad you really feel, because you take it as normal, and you fight the smaller and greater things because you must.....When a crack of clear light comes through, you realize just how bad you were. To all of you and us and those to come, I hope and pray that this is only the start of something truly seismic. I will come back and tell how I feel in a few weeks......Love one another. And remember, practice makes perfect.

SIXFOOTFOUR · « **Reply #45 on:** April 23, 2015, 11:29:34 am »

Hey Lockettal73

Have not seen a post from you recently. Are you tolerating the Harvoni any better?

lockettal73 · « **Reply #46 on:** April 23, 2015, 11:39:24 am »

Hey guys! Thanks so much for reaching out! I've been feeling fine since last Saturday. It looks like I've adjusted. I haven't been feeling tired and I haven't had any headaches. Keeping my fingers crossed that this continues!

SIXFOOTFOUR · « **Reply #47 on:** April 23, 2015, 11:44:46 am »

Glad to hear!!

best of luck with the rest of the treatment.

Debula · « **Reply #48 on:** April 23, 2015, 12:50:40 pm »

lockettal73
Really glad to hear you are doing better!!
I hope it continues well for you

Maddawg46 · « **Reply #49 on:** April 24, 2015, 02:24:23 am »

I just finished 12 I weeks of Harvoni. When I first started I had no major side effects. I had a slight headache, a little trouble sleeping. I took mine at around 11 pm.i was also taking Ribavirin. After about three weeks I caught a bad cold and got a sinus infection.
Other than my other issues, it was a breeze. My blood test from Monday has me as " not detectable. At 4 and 8 weeks I was detectable but not measure able. I played a game in my head. Sneaky snipers rooting out hep C viruses. Kinda like a video game!
Keep positive. Your on your way to being cured! Hey!!

Maddawg46 · « **Reply #50 on:** April 24, 2015, 10:38:56 am »

Toss your tooth brush and get a new one after you complete treatment. What other things do you have that may have traces of blood on the? The virus can live weeks on inadamate objects. That's what I've heard. Better safe than sorry.

drmhed · « **Reply #51 on:** May 11, 2015, 12:26:47 am »

Update!....My doc wants labs done every two weeks. Started Harvoni April 2nd. Two week lab results...AST only about 6 'points' above normal range. ALT right smack dab in the middle of normal range. Basically, a happy liver, functioning normally! Viral load BEFORE starting Harvoni was about 6 million. After only two weeks, down to 30,000.

Four week lab results. Liver function tests right in the normal range. Viral load...after only 4 weeks...undetected!! Woohoo!

So far, only side effects have been fatigue. But not enough to keep me from doing my normal routine. Although, I do try to get a short nap when I can. ;o)

I'll get the 6 week labs this Thursday. Expecting/hoping the same normal liver function and undetectable viral load! Trying not to get over-confident...even though things are going as good or better than 'advertised'. I wish you/us ALL the very best outcome!

maleman4u2 · « **Reply #52 on:** May 12, 2015, 05:27:59 pm »

Congrats on being approved quickly. I did 12 weeks of S/O from July - Sept 2014. I went undetected during treatment. The virus came back at 6 months which was a few weeks ago. I too have been approved for Harvoni for 24 weeks which I will begin on Saturday. I didn't have much side effects on the S/O mild headaches mostly. I just took advil or aleve. Drink lots of water which i do anyway. I hope I can finally beat this thing, I got down for a minute but I'm up and ready to do battle again. Good luck with your treatment.

maleman4u2 · « **Reply #53 on:** May 12, 2015, 05:30:09 pm »

Congrats on being approved quickly. I did 12 weeks of S/O from July - Sept 2014. I went undetected during treatment. The virus came back at 6 months which was a few weeks ago. I too have been approved for Harvoni for 24 weeks which I will begin on Saturday. I didn't have much side effects on the S/O mild headaches mostly. I just took advil or aleve. Drink lots of water which i do anyway. I hope I can finally beat this thing, I got down for a minute but I'm up and ready to do battle again. Good luck with your treatment.

okmimi · « **Reply #54 on:** May 12, 2015, 09:30:39 pm »

i'm almost 6 wks in on Harvoni. I take my pill with lunch. I have experienced headaches (numerous), some bad (4). But, I had headaches before - just not as frequent. I have had some intestinal issues, dizziness, foggy brain, sleeping issues (at times) and fatigue. None so serious as to stop though! Mostly, just headaches and fatigue. I found the more water I drink, the better I do. If I start to get a headache, I chug some water and it usually goes away. I try to drink at least 70-80 ozs a day and my dr said I was dry! My AST and ALT levels dropped to 22 and 13 from 77 and 95, respectively, The higher levels were from 12/14. My viral load comparisons weren't avaialble yet, but I'm hopeful. Good luck and drink your water!

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Author Topic: Starting Harvoni tonight...need some encouragement (Read 37789 times)