Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: sixfttree13 on September 22, 2015, 08:03:18 pm
-
I started my harvoni treatment yesterday. I waited for 5 years since i was diagnosed for this day. The previous treatment scared me away from it, the regimen of shots, pills and the side effects of the shots. I am ready to get my life back.
-
I started my harvoni treatment yesterday. I waited for 5 years since i was diagnosed for this day. The previous treatment scared me away from it, the regimen of shots, pills and the side effects of the shots. I am ready to get my life back.
Congratulations! If you are like me, you must feel like the light is shining brightly at the end of your HCV tunnel.
-
Yes it is, the black cloud is slowly lifting and maybe i can be me again when I'm free. :)
-
Welcome sixfttree! That's when I found out I had HepC too...2010.My genotype was the hard one to get rid of they told me.Lots of sadness & secrets to flash forward to 2015 ...in one month on Harvoni I am very close to undetected(24)! Surreal .....I wish you the best ...stay hydrated & relax ....Harvoni is a miracle drug!
-
Welcome and all the best! It's a great time to be accessing treatment. How long is your treatment for?
-
8 weeks, 56 pills. The drs told me my numbers were the same on one level and was lower on the other one. I'm still waiting for my lab paperwork so i can see my numbers.
-
Congrats on beginning treatment sixfttree! Welcome aboard. May your journey be smooth. :)
kim
-
Welcome sixfttreet3!
This time will be much better! 56 is not too bad at all!!!
Cheers to your SVR!
bye!
-
Those 8 weeks will fly by. Good luck and best wishes for SVR.
-
Yep, Harvoni is awesome! I have 5 days left on a 12 week run. Been mostly smooth... there's been a few this and that but I try not to focus to much on it and just go for it. Been undetected since about 4 weeks. I wish you the best! Bree
-
Hi I'm my 6 th week of harvoni. I'm still defectsble, but my viral load started at 20000000, so I was told to not be discouraged.
-
Brew that is so cool to be your final leg...almost time to graduate HepC school!
-
Nice handle! And congratulations. :)
-
Hi I'm my 6 th week of harvoni. I'm still defectsble, but my viral load started at 20000000, so I was told to not be discouraged.
I don't think you need to worry, Michelle. Are you on 12 weeks total?
And welcome to the forums! :)
kim
-
Hi Michelle,
Welcome to the forums. Can you put your info in the sung nature so we don't keep asking you the same questions, it's also a good record for you. No don't be discouraged. I had a high viral load too, but it will clear. I'm on viekira pak. But Harvoni rocks as well. Tell us your geno type too. Good luck. Cal :)
-
Hi sixfttree,
You said it succinctly, you will be you again. I am going to be me again too. Cal :)
-
Thanks for all the support, it really helps to talk to people with the same problem as me. I haven't told anyone except immediate family and it put me in a shell of depression. I am climbing out further every day since I've been on here, just knowing i will be free once again.
-
Welcome to the forum. I started at 13.9 million and now I am undetected!! I am on Harvoni also. Think positive, it's gonna go by quickly. I have 25 days left and with the energy boost from the Harvoni I almost am afraid to finish. Good luck
Scout
-
Hi Sixfoottree,
Depression is a big side effects of Hep. It is sometimes hard to know if our thinking put us there or the virus effected our thinking. I'd say a bit of both. We are fighting a huge stigma and it's usually the best kept secret. I have told those I want to know and more as I trust them. I had to tell my 21 yo son after my last tx relapse 4 years ago. He confronted me and I couldn't lie. It has weighed heavily on him, but he has stepped up and become involved in advocacy work. I never would have predicted that. Tell on an as needs basis. In Oz we are not legally bound to tell anyone. But were advised to tell dentists, pathology etc. it's your body, but don't be ashamed just because society says were not as good as others. Because we are, were better in most cases! Glad you are here getting some comfort from the forum. Cal :)
-
Thanks Cal, that means a lot to me, most folks just don't understand how hard this has been, but I'm taking it one day at a time, and it's 9 pm and time for my pill, #4 of 56
-
I started my harvoni treatment yesterday. I waited for 5 years since i was diagnosed for this day. The previous treatment scared me away from it, the regimen of shots, pills and the side effects of the shots. I am ready to get my life back.
Welome sixfttree13!
You will do fine.
I assume from your post you had previous tx?? interferon/riba?? I can assure you ... this is waaaayyyy easier than interferon.
You will have some discomfort but its tolerable. Drink lots of water of course.
dm
-
No previous treatment drummerman, the side effects of the interferon would have probably cost me my job, i work at high elevations installing windows in buildings. So that was one of the reasons not to start 5 yrs ago. The headaches are annoying but tolerable so far, mild insomnia and i already drink a lot of water everyday at work, so a gallon+ a day of water is normal for me
-
Hey sixfttree,,, I had a few mild headaches the first week and then I adjusted when I took the pill....if I took too early in the AM I got a headache...and if I took too late I kind of had insomnia,,, I found noon on an empty stomach worked best for me. Have had basically zero side effects ever since
Scout
-
Hey sixfttree, you must be superman if you are still at high elevations installing windows!Are you doing that now ? Hats off to ya!I agree with scoutdoy that noon has worked best for me too. never any headaches since I switched . Day 21!
-
Omg sixfttree,
Please be careful and do have time off if you need it. Scary. Cal :)
-
No previous treatment drummerman, the side effects of the interferon would have probably cost me my job, i work at high elevations installing windows in buildings. So that was one of the reasons not to start 5 yrs ago. The headaches are annoying but tolerable so far, mild insomnia and i already drink a lot of water everyday at work, so a gallon+ a day of water is normal for me
smart move...no way you could have done interferon and installed windows. I have to take a semester off from teaching and only went in one period per day for rehearsal. It was a struggle.
are you on harvoni or vikera?? I had slight headaches but nothing bad. I have had far worse headaches not on tx. I wound up taking my am dose at 11:30 and my pm doses , 3 ribas at 8pm and in pm vike pill at 10pm.
seemed to work well.
dm
-
I really researched the side effects of that 3 phase treatment, the interferon and 2 different pills every day for 6 months would have crippled me, i chose to wait, against my doctors orders, with hope of something better, and I'm glad i did! I will be calling my doctor on monday because of the insomnia, i cant sleep at all, maybe 3 to 4 hours a night, and it is getting worse, not better. I'm only 5 days into my treatment and this is my only real side effect so far that sucks
-
Hi sixfttree ,
Yep you need to sleep to deal with sxs and just your life in general. Get some sleepers. Also can you fill your profile signature in? I don't know what you're on, or geno, or tx etc. thanks. Nearly a week down, it's the slowest. You'll do well after this. Cal
-
Just looked back at your posts and it says you take your Harvoni at 9pm. For me, it's a buzzy, stimulating medication. If I took it at that hour, I have no doubt I would be up all night. I take it at 10:30 a.m. or so and will probably start taking it even a bit earlier.
It doesn't effect my motor skills at all. Just maybe one hour after taking it I feel extra happy. By point is, I think you could work on it, no problem. It's not disorienting.
Might make all the difference with your insomnia.
-
I really researched the side effects of that 3 phase treatment, the interferon and 2 different pills every day for 6 months would have crippled me, i chose to wait, against my doctors orders, with hope of something better, and I'm glad i did! I will be calling my doctor on monday because of the insomnia, i cant sleep at all, maybe 3 to 4 hours a night, and it is getting worse, not better. I'm only 5 days into my treatment and this is my only real side effect so far that sucks
smart move...wish I had waited.
dm
-
Hi sixfttree, I take mine at 9 p.m. too. I'm almost done... my last pill is Sunday night. My reasoning for that time is that I had read that others got sleepy after taking it and I also thought it could do it's thing while I slept. I'm usually home at that time, etc. It's worked well for me with that time. I do have some insomnia but it's mostly been more recent. I wake up after about 4 hours. Not sure if earlier would have helped.
I guess everyone has to figure out their best time...and use sleep aids when life demands it. Good luck on your journey! Bree
-
Hey sixfttree, I take a Xanax every once in a while on sleepless nights. They really help me sleep longer because sometimes I just randomly wake up at 3 am.
Scout
-
Hey sixfttree, I take a Xanax every once in a while on sleepless nights. They really help me sleep longer because sometimes I just randomly wake up at 3 am.
Scout
I do the same. 1/2 of .25 usually does the trick. Just have to remember to take it early enough and not wait till I'm laying there wide awake at midnight.
dm
-
I will be calling my doctor tomorrow, i want to get my lab results so i can post them on my account here and ask him about my side effects and potential solutions. And once again, only 4 hrs of sleep last night, at least i can nap today, if my 4yr old lets me
-
Good luck Sixfttree, I hope your 4 year old is still taking naps! Cal
-
On a positive note, i didn't get a headache yesterday at all and i slept almost 5 hrs last night, and no headache this morning. Hopefully that is a good sign of my body getting used to that little miracle i take. I set my phone up to remind me to take my pill every night
-
Sixfttree don't freak if you experience some minor liver quivers. We talked about it on here one day and a lot of us experienced them the first couple of weeks on medicine. It didn't hurt for me as much as it feels weird. When I mentioned it, several people said ya....it happened to them too. I thought my liver did a flip on day.
Scout
-
Really? Sounds crazy. How far into treatment was this occurring or is it just random for each person?
-
For me it happened a couple of times the first and second week. Hasn't happened since. That's when I truly thought "I am either dying or the medicine is really kickin" We talked about it one day on the forum and several people experienced the same thing. It didn't hurt or anything. It almost was like a tickle. It's hard to describe. I will try to find the thread where we discussed it.
-
For me it happened a couple of times the first and second week. Hasn't happened since. That's when I truly thought "I am either dying or the medicine is really kickin" We talked about it one day on the forum and several people experienced the same thing. It didn't hurt or anything. It almost was like a tickle. It's hard to describe. I will try to find the thread where we discussed it.
Looking forward to it - it sounds like the death throes of the virus. Yay! (and now it won't scare the crap outta me if it happens! ;))
-
His I fettered,
I had it in first week and then a bit I. About 4 the week. But mine was more like a stab. I put it down to drug punching and spitting in there. Felt good. Cal 8)
-
Sorry about calling you fettered damn I pad corrects everything. :'(
-
I haven't had the twitch yet, but still no headache today, feeling pretty good, feeling positive! If i can get 5hrs plus a night sleep, that would be epic. Worked hard today and a well deserved rest is in order.
-
1st week down my friends, headaches are gone and the last 2 days I've woke up refreshed and energetic. I'm going to post on this every day to not clog up the forum, and it makes me feel good to vent. Plus i will have something to look back on. Thanks to all.
-
Congratulations on a week down sixfttree! 8) 8) 8)
-
Hey sixfttree,,,,you are right at the time when I started feeling more energy and my joints stopped aching so much. That when I could feel the virus was getting its ass kicked in my body. Let me know over the next few days how you feel, and if you experience the "Harvoni high" that a lot of us got. Good for you, you seem to be following the same track as I have gone through, and I must say, it's nice
Scout
-
It only gets better from here on out. :)
-
Sixfttree,
Well done my friend on the first week. Minimal sides too, going good. Cal :)
-
sixfttree, I had similar experience to Scoutdoy... 2nd week into treatment I started to feel really good, even a sense of well-being, like the virus was gone...I kept thinking so this is what it must feel like. Some call it the Harvoni High... I had it at varying times throughout treatment. Glad you are doing so well.
-
2 nights of no sleep, but surprisingly alert, if this is the harvoni high, i like it. Clear headed and feeling good. Just wish my brain would turn off at night, it's like i turn into an astro physicist as soon as my head hits the pillow, or I'm just crazy. Get to see the doctor next Wednesday for labs (2 week blood draw).
-
Sixfttree,,, yes the energy boost is unreal isn't it? It hasn't stopped for me yet, and I only have 17 days to go. I will tell you that several nights I took 1/2 Xanax. My mind and body just didn't want to shut down.
Scout
-
Hello all!!! So happy I found this forum. I took my first pill Sept. 28. So far, I have not much in the way of side effects except I am really thirsty and hungry!! Generally, I did not think I felt bad before I started but maybe I had just gotten used to the feeling after 45 years. I still get up before the sun to get in my daily exercise and as long as I can continue that throughout the treatment, I think I will be doing good. May have to exercise a lot more to counter the extra food :'(
Was it symptoms that caused most to find out about the virus or just a random blood test?
Have had sleepless nights for awhile, think it is age related :'(
Look forward to the journey with all of you and am ready to be cured!!! Will the damage that has been done thus far heal or do we just go from here?
Cindy
-
Welcome to the forums and to the treatment journey, Cindy! :) As for your question about liver damage - if your fibrosis is less than F4 (i.e., less than cirrhosis) it the liver can apparently heal completely(!), if treated well post-treatment. And even people with cirrhosis can expect some degree of repair and reduction of scarring post-tx. Amazing!
Enjoy the journey. :)
kim
-
Thank you Kim,
I think the Fibrosis stage is F2..Fibrosis score is .54. I am going to call the doctor office to get all of my starting numbers as the paperwork they have given me is not as clear as things I have gotten in the past, new doctor.
I try to treat the liver good most of the time but have enjoyed the occasional drink now and again. Keep weight in check, most of the time and exercise regularly.
Here is hoping for healing!!!!
So happy to be on the journey with others that can understand and appreciate everything that any of us may be dealing with.
Cindy
-
Hi Cindy,
You sound good healthy and active. You should be fine. Good luck on the journey. I'll see you around new friend. Cal :)
-
Welcome Cindy ~ You started Harvoni Sept. 28 and I ended Sept 28... a date to go down in history 8)
Best of luck on your journey - it sounds like you are off to an excellent start!
-
I am not even scheduled for my blood work until 6 weeks in. I have gained a lot more information on this site than my doctor has provided but at least he got the ball rolling to get started on the Meds.
I am sure the 6 weeks will go by in a flash. Bree, glad the first part of your journey is over. I assume from what I read here that after 12 more weeks, virus free, you are considered cured?
Cindy
-
Cindy, yes this site has so much information. Not all doctors impart the information (either they don't know or don't think it's necessary or don't have the time). Mine is a minimalist even though he's a specialist but I know he's smart so I overlook it. Best to be your own advocate and educate yourself.
Yep, that's the way I understand it is 12 weeks after treatment (EOT) is pretty much definitive in calling it cured. I am awaiting an EOT VL result (probably will be in tomorrow) but the liver enzymes are all good and I have been undetected since week 4 so feeling good about the outcome.
-
My doc is also a minimalist, straight and to the point, i talked to his nurse today about how i joined this forum, to be among my piers in this fight, and she was amazed at how you call the good feeling the "harvoni high". I called about my insomnia and got some tramadol to help me sleep, but i told her that even though i was lacking sleep, i feel great all day. I'm wore out now, but still feel happy. Pill #11 coming up soon.
-
Hi sixfttree,
This must be the Harvoni high I gave read about on the forum. Why haven't they done your ore tx tests? You need them to see the drop. That's weird. Oh well. I guess you can live without it. I have never heard if anyone not having the ore tests before?
So cool that you are feeling so well though. Cal :)
-
What is an ore tx test cal?, i had blood drawn and ultra sounds done, if that is what you mean.
-
Sixfttree,
That would be my typing or the auto correct. Probably my typing! Pre test. The V/L and LFTS blood count etc. sorry I read Cindys post I think and read the part about not having tests until 6 weeks in. Sorry, I am so fogged as usual. Cal 8)
-
No worries cal, i hope i get my results soon so i can post them, now i really want to see the results
-
Thanks Sixfttree,
Yes those results we become quite exciting! Cal :-*
-
Sixfttree ,,,it's interesting to have your results so you can compare them to people that have similar results. For instance I was at 13.9 viral load, it was awesome that I followed the same path, almost exactly, as others on here with such high viral loads. Also, it relieves stress for me when I came up undetected! What a great feeling that first test that said undetected! I printed it off and have it tacked to my wall above my desk do I can look at it everyday.
Scout
-
Cal, I hate that auto correct too, makes me look like a moron
Scout
-
I took a photo of mine and have it in my phone in case I need to look at it. It was also handy to text to the very few friends that know of my journey. I just texted them the photo image of the blood work that said NOT DETECTED. Music to my eyes!
Scout, we had similar viral loads and we are both UND. That's so awesome!!!
-
Thank you all for the hope. I just started Harvoni a few days ago myself. started to cry when they finally said it was on the way. didn't realize how much emotions had built up over the years.
-
Welcome onmyway! I cried too when I found out I was approved by Support Path after a lengthy insurance effort. Tears of profound gratitude and happiness.
I was in awe. Still grateful and always will be!
-
Sometimes I just smile at strangers just because.... :)
-
Welcome onmyway!
We're here for you anytime!
Marianne
-
Hi only way,
I cried too. It has been emotional having this illness, whether you've txed before or not. Just holding it in is difficult. Keep posting. Make your own thread and fill in the profile and signature then you and we can see your progress at a glance. Cal :)
-
Got my numbers today, 3.6 mil v / l, ast 23 alt 19, geno 1a, he said below 6 mil is 8 wks of harvoni
-
He's right if you are treatment naive and no cirrhosis. My doc pushes for 12 instead of 8 weeks anyway just for extra umph, but depends on insurance, etc.
Sounds like you are on your way... hip hip hooray!
-
Sixfttree,,,so are you on the 8 weeks? Your liver numbers look good. Good for you, your gonna whip this thing and be free!
Scout
-
He said my low numbers are from catching it early, I'm 42, my hcv is only about 15 yrs old and with no cirrhosis and i don't know what naive is, that is why he put me on 8 weeks. Just took pill# 15 and feeling stronger every day. The sleeping pill helps turn my brain off at night so i stop trying to re invent the wheel, lol
-
Treatment naive is whether or not you have been treated for HCV in the past (like interferon/riba or other treatments). If you haven't had previous treatments, they call it "treatment naive". If you have had other past treatments, the Harvoni guidelines call for 12 weeks. So, no cirrhosis, treatment naive, less than 6 million viral load calls for 8 week Harvoni treatment, technically.
I remember once when a nurse asked if I was treatment naive, I was insulted I thought she was calling me naive! Ha.
-
Oh Sixfttree,
Excellent V/L and low LFTs. You'll do great. tx naïve too. You're a winner. Cal 8)
-
Naïve Bree,
I can just see the scenario! You are a card! Cal :)
-
No previous treatment, was scared off from the side effects of the interferon because of my job requirements, heights above 100 ft, man lifts, ect. I'm glad i waited because the cure percentages are way better. Have a wonderful day my friends, off to go play in the sky.
-
I hear you on that sixfttree....that's why I didn't do treatment earlier too. I have to work and I wasn't willing to take on the interf. My friend did it, and I was pretty sure he was going to end up in jail. He totally went homicidal/suicidle/depression. He is still convinced that the treatment is what caused his liver to crash so bad that he had to get a liver transplant. I don't know, but I watched him go through it and it was absolutely horrifying
Scout
-
Interferon and ribas together are an unbeatable combination. I thought it would be flu like symptoms. My ars*! It was a veritable nightmare. You are smart to have waited. I could have but didn't and live to regret this.
Past is past now though and despite losing and damaging some vital organs, I am focused now on my new tx. It's a winner. Cal 8)
-
Cal, you are amazing...attitude of a warrior....We will all get there & you prove it!
-
Hi Rosie,
More a worrier than a warrior me thinks! But hey what an you do. Mindfulness gets me through so much. I would be a basket case without it. But yes we can all make it and will. Let's go fellow warrior 8) Cal
-
I was more of a wreck than a warrior, this affliction has had my life in shambles since i was diagnosed in 2010. Had to have my whole family tested for hcv, all neg thankfully, and since i work with glass for a career, i had to be extremely careful every day. The true warrior, to me anyways, is my wife, she has stuck by me with true compassion. She cried when she seen the harvoni commercial on tv and i called the next day! 17 days into my treatment and i feel like a new man. This forum of great people has helped more than most of you will ever know and i thank you from the bottom of my heart. Have a good day.
-
Sixfttree13, my husband has been my rock too.He was so calm when I told him although I know he was shocked & sad he was just a "whatever it takes" to me.You impress me as a warrior because you are still out there working not just any job but wow on a crane/scaffold with GLASS!!!!Very few healthy people have the cahonies to do that!!!!Have a great day & please stay safe!!
-
I started my treatment about the same time as some of you, Sept 28. My next Dr. appt is not until 11-9 and they have said nothing about a blood test. What is the schedule for blood testing on others? I am going to call today and just tell them to write the order and I will pick up and have the blood test done at the 4 week mark. Don't see much point in going to see him at 6 weeks if there has been no blood work to discuss :-\
-
Hey sixfttree ,,, my blood schedule was so poised to be at weeks 4,8 12, and 12 EOT....but I got a physical at week 6 and my regular doctor ran the test again
Scout
-
I was more of a wreck than a warrior, this affliction has had my life in shambles since i was diagnosed in 2010. Had to have my whole family tested for hcv, all neg thankfully, and since i work with glass for a career, i had to be extremely careful every day. The true warrior, to me anyways, is my wife, she has stuck by me with true compassion. She cried when she seen the harvoni commercial on tv and i called the next day! 17 days into my treatment and i feel like a new man. This forum of great people has helped more than most of you will ever know and i thank you from the bottom of my heart. Have a good day.
Hi sixfttree,
It does leave us in a mess. I decided to have kids knowing I was HCV positive in 1992. I had them tested when they were old enough. But I used to look at them and think I'd been selfish and doomed them. Luckily it didn't pass onto any of them. My husband wasn't happy at first, not what he signed up for. He is supportive physically, that's all I can say really. You are a lucky man. Second chance. Cal :)
-
Hi Cindi,
Hope you're going ok. In Australia I have a GP and she tests me whenever I want, only LFTS AND FBC. not V/L. My specialist does the V/l I see him monthly. I have a ore tx VL, one at 2 weeks, one at 12 EOT weeks, one at post tx 12 weeks. I think it depends in U.S. On your insurance. Hopefully someone can come in and give you accurate info,but I know you need blood tests more regularly and need to be monitored . Cal :)
-
Congrats,
My Harvoni approval came on the first try. Thank God
I started on 9-24-15 on a 12 week regimen. Today is pill number 15
And so far so good. I too am ready
To live life again.
Larry
-
We are close on the same start time Larry, I'm on pill #17 of 56, and feeling good! We are on our way to freedom. I can't wait to be able to be normal again, not having to keep my toothbrush and razor up on top of the cabinet in the bathroom out of reach. Having panic attacks when i get the slightest cut or scratch that bleeds. Ohhh to be free again! Have a great day all!
-
Just checking in, all good with the harvoni, but my insurance company baulked on my meds, come to find out my prescription coverage is to a certain amount, and harvoni has exceeded the allowed amount. So i had to come up with almost $7,000 to continue getting my last bottle. Co pay they call it. Good thing i have a great family that is really supportive and loaned me what i needed. I get my last 28 pills monday. 20 pills down my friends, 46 to go.
-
Not sure what type of insurance you have specifically, but it seems really soon for them to be filling a second prescription bottle. On Friday you posted that you have 11 pills left from your first bottle, if my math is correct? And you're getting the second (and last) bottle Monday?
Here's my point - Mysupportpath.com issues co-pay coupons that will help pay for most if not all of your out-of-pocket. Don't confuse this with their patient assistance program - it is totally different!!! No income qualifiers and you can ask for one over the phone.
Mine was technically from McKesson Corporation but issued by Gilead Pharmaceuticals. It has a face value of $23,625
They will give you the Bin #, the RX PCN code, an insure #, a group # and an ID #. You call this info into your specialty pharmacy and they can immediately use the coupon.
I am a bit ahead of you (started Harvoni Sept. 15th) and I have paid ZERO out of pocket and have received two bottles. I have a really hefty co-insurance to pay before my insurance kicks in at 100%. I believe around $13,000. Repeat, I have paid zero out of pocket - that coupon has covered everything.
Can you call early Monday morning and hold that second delivery off? It's worth trying. I fully expected to be out-of-pocket for my full co-insurance amount.
-
;)
-
Sixfttree,
Well that sucks. I will never understand your medical system. Why didn't they tell you at the beginning if tx? Tests fool wrong. I hope you try Else's suggestion. Cal :)
-
Just checking in, all good with the harvoni, but my insurance company baulked on my meds, come to find out my prescription coverage is to a certain amount, and harvoni has exceeded the allowed amount. So i had to come up with almost $7,000 to continue getting my last bottle. Co pay they call it. Good thing i have a great family that is really supportive and loaned me what i needed. I get my last 28 pills monday. 20 pills down my friends, 46 to go.
Sixfttree,
I think Else makes a good point. You might be getting your meds filled too early, and utilizing the coupon through Gilead's http://www.mysupportpath.com/ is a great money saver.
I take both Sovaldi and Daklinza and obtained co-pay coupons from both Gilead and Bristol Myers - my total copay per month is $5 for both meds.
Good luck. These meds are priceless I know, but saving money is never a bad thing either. :-)
Mary
-
I can only get the medication from the pharmacy at the medical centers specialty department. They called last Thursday just to tell me it was available for delivery or pick up starting this monday and that my ins co was putting a hold on them. I will have 7 pills left of the 1st bottle tomorrow, and will need them before friday or i will miss a dose. I had no idea about the coupon thing.
It was in the fine print in my ins that a co pay was required when i hit a certain amount. Who reads that crap anyways. I've always been relatively healthy and never had to use my ins to this extent. The co pay has already been paid by my family so it is what it is, a life lesson.
-
Support Path may still be able to help. Please try to get the info from them. I got Abbie's (Giliead's biggest challenger for patients) numbers in less than 24 hours. Then if you can give them the bin" group" etc. it'll get paid by the drug co. not you...
Very worth the try.
Abbvie's paid all of my copay.
-
Wow,
So is support path a Government Department or an NGO?(charity?) cal :)
-
Cal , support path is not government...in theory anyway...but the way our country is...just kidding...it's the manufacturer
Scout
-
Cal , support path is not government...in theory anyway...but the way our country is...just kidding...it's the manufacturer
Scout
They're their own government. ;)
http://www.bloomberg.com/news/articles/2015-02-26/gilead-avoids-billions-in-u-s-taxes-on-its-1-000-a-pill-drug
-
No, it's part of Gilead or Abbivie's company's. It has nothing to to with the government. It's the pharma co.
-
Thanks everyone,
If they could just lower the costs a but Australia may be in with a chance. It is the cost of course which is so prohibitive.
I don't want to say anymore, ribas have captured my brain and holding it hostage . Cal :)
-
No, it's part of Gilead and part of Abbvie Cali girl :D
-
HI Marianne,
Yeah I read the link. I see that it's part of the Pharma machine. I'm not criticising the access program or anything. I was talking about how the Pharma's high costs are what is stopping my Government putting it on our free PBS list. That and they our Government) don't care about scumbag heppers. (Sorry I told you the ribas have a knife to my throat atm!) The tax payer will in effect be paying for the drugs and the tax payer would rather spend it on important projects like another tunnel that no one uses. (Ouch shut me up!) Cal
-
Obviously you have never lived in the states!!! I love my country, I served in the army, and I wouldn't want to live anywhere else in the world. Unfortunately, here, the probabilities of one living or dying is directly proportionate to the type of insurance you have. Good insurance, like mine = Harvoni on first request some other insurances = No cure,,your not getting any medicine, your not sick enough. It's unfortunate, that is how it is here. At least your government seems to be consistent.
Go Royals
Scout
-
Hi Scout,
I know the U.S. System is inequitable, from what you lovely people have told me. Isn't there a Hep Organisation of body that is responsible for helping those without insurance?
One thing I was stunned by when I hit the streets in San Francisco for the first time were the number of homeless people and mentally ill homeless people on the streets. I was a young Social Worker who worked in psych at the time and it was upsetting and sad.
Our organisations are toothless tigers I'm afraid, funded by the Government. Our Government is more about getting votes with the new PM and all, and heppers are not vote getters. You know how we're stigmatised and marginalised we are as a group. Yes they are consistent, especially when saying no to preventing a potential epidemic of very sick and dying people.
Cal (bitter and twisted and ribered up!) :P
-
From my understanding, my insurance is not as bad as some folks here in the states. Through my own ignorance of not reading my policy, i had to pony up some money. If i had known about the help from that place i would have took it. As i see it, the way I'm feeling 3 weeks into treatment, i can't put a price on it. Brain fog gone, joint aches gone, and I've noticed today that it looks like i might be loosing weight. Yay for harvoni!
It is bad that ins is required here or you get penalized by our government, but it doesn't help that big pharma makes cures so expensive that nobody can get it. My other meds were usually free or half price until my deductible was met, then i guess they are free until i went above the allotted amount. Now that I'm paid up, everything is free for the next 3 1/2 months.
I'm grateful for the cure, and that i just happened to stumble across this group while researching side effects of harvoni. Have a wonderful day my friends, 6 pills to go till I'm half way cured!
-
Hey sixfttree, you seem to be following my parh on the treatment. I have 5 pills to go and BAM! I am done. I felt great during my entire treatment, and I am almost afraid to finish up. I work full time and have several children at home, and I feel great. My total cost for Harvoni was $75...and Giliad picked up 70.00 of that, which I would have gladly paid, but when my doctors sent in my prescription they also sent a copy of it to Giliad. Giliad picked up the 70.00 before I even got the bill from the ins. company. Yes Cal, the homeless and poor can get Medicaid, but many doctors won't take it. Finding a doctor that accepts it could mean several hours away for people, and sometimes the quality can be criminal. It depends on where you live. There is no consistency in the states. One area may be good, and the next state it may be horrific. Don't let those Ribas get you down,,, your on the home stretch....
Go Royals
Scout
-
GOOD FOR YOU sixfftree 13. And may your journey be a Great one! Life can be pretty darn Cool sometimes.you are in my prayers MY FRIEND. "Just willie g" GatorFalls
-
Me 3... I had a good experience overall with treatment.
Sixft - do you have 6 pills to hit the half way mark or to complete treatment?
Scout - embrace completing treatment... I was a bit scared to finish too but I have to tell you after a dip here and there, I'm doing really well overall, and feeling better than I have in a long time. I have some light-headedness but I think that is low blood pressure (which I have anyway).
My two cents is this is so worth it and it is awesome to feel hepc free!
-
Bree, 6 pills will be 4weeks into tx, 4 weeks to go
-
Hi Sixfttree,
Good on you. It's all in increments. I am 8 weeks tomorrow. Hooray. 4 weeks to go. Cal :)
-
I wish i could post this letter i got from my prescription plan company, whom I've never heard of, but is in control of what i can use.
In short, as of Jan. 1st, 2016, if plan members medication are this "list" (all hcv meds, diabetic supplies, hiv, and other need to be alive) will require pre screening and possible 2nd opinions by another doctor, to find out the severity of the illness and if other options are available besides said "expensive" pills or supplies, or limiting the amount given out.
In my opinion, they don't want to pay out anymore and it is only going to make it more difficult to get the meds people need. Good thing i am grandfathered in, but this is ridiculous. Some meds probably dont have support help like harvoni, and people are going to suffer.
Rant over, have a great day
-
Sixfttree ....wow...did it really say "need to be alive?"
Sounds like they are gearing up for denials
Go Royals
Scout
-
Scout, i was just paraphrasing the large list of medication, which mostly consists of meds to sustain a persons life. I just find it sad that billions are spent on finding cures or treatment for diseases, but the common man can't afford it and ins company's are not willing to cover it. I'm glad i am able to continue with the little amount i did have to pay.
On a happier note, i just got my last bottle of 28 pills yesterday, my little orange ish diamonds of life, almost half way. If my math is correct, eot should be November 12th. Then the 3 month wait for final labs. I go Tuesday for my 4 week labs, cross your fingers for a "undetected" result. Have a great day all!
-
You will either be und. or less than 15......you'll do great! 3 days left for me....woo woo
Go Royals
Scout
-
Sixfttree ,
I hear you on the anger and frustration of the inequitable access to these ridiculously expensive drugs. I understand they had to cover research costs but Gilead must have done that by now. I heard Gileads share prices have gone down with the market about to be flooded with so many other drugs. Let's hope that s not passed on the the consumer. It's bloody criminal. Can you send the letter to you local pepper? I'm all for outing and shamming these greedy ****!!!!!cal :-\
-
It's a long and winding road, Cal. Gilead isn't having to recoup R&D on sofosbuvir (Solvaldi) or ledipasvir (the add-on to sofobuvir to make Harvoni).
They bought Pharmasset who'd already developed the drugs. They're recouping the cost of acquisition of another company not R&D.
Here's the real kicker. Pharmasset was founded by Emory University faculty members and a large part of their research was and is funded by the federal government. So that R&D? Your tax dollars at work. :)
Cute story about how they came up with the name Pharmasset. Get it? Pharm Asset. See what they did there? ;)
In case you think I'm coming down too hard on these guys, try out this quote from the founder of Pharmasset - "The philosophy is very simple. Good drugs save lives and a major side effect is they can also make you rich," he added.
on edit: oops, forgot you were an Aussie, Cal. I guess that's not technically your tax dollars at work. But it's crazy anyway, eh?
-
Hi Else,
I knew that they had to pay for acquiring Pharmasset but I didn't know it was originally a Government funded project? Surely the tax payer owns a large share holding in Gilead then? Stands to reason. ::)
Actually I should hold my slagging off it seems Gilead are negotiating price with my Government. I wonder how many died or got sicker while the Government held off for a better price? Mmmmm I honestly thought AbbVie would be in with a shot but if Gilead negotiate it's price wars here Else!
Meanwhile the generic market is being helped by a few kindly fed up Doctors. Thank goodness for sense. Cal :)
-
Else,
Taking that quote to my Oz forum, they'll love it! Thanks. Cal :)
-
Hey sixtree( forgive spelling but if I EVEN tried to spell all these nicknames right I would end up a little crazier than I am now and I'm far enough gone ha he hi ha. ( that lol thing gets a little old after awhile ,( HEY,,I'm old school) I mean the whole World is LOL so a ha ha he ha or,,, you crackmy sh?? Up. once in awhile won't hurt. Anyway I must keep with the subject, well sixtreeI once missed two days of my MEDS. , I was not a happy camper so after a few hand grenades and a few words later I said to me self ( yes to Me Self,is that Irish ya think) I came up with a plan. Eight days (why eight and not seven I'll never know,,,,maybe it was that impatience thing) and I would call good old descriptors and let EM know it was me and how much I appreciated their help and service, plus a small mention of I had MESS coming I think. " could you check for me please if you have time?"" ( Well who don't like a little maple syrup once in awhile ha ha oh now I know why the eight day thing,,,,it was because I always called on Fridays(which I do with all Dr. Matters. Scripts cancels etc etc ) BECAUSE everyone genarrly are in good moods on Fridays (I think I screwed up back there on some speeling,,, irish?) YES FRIDAYS MY FRIENDS, PEOPLE SEEM TO LOVE EACH OTHER ON FRIDAYS!!!!!! Ignore this whole short story if you don't even have a slight q what this native American is saying. Onah. " Just WILLIE g" GAtor F alls
-
DAM spell check I met. MEDS. not MESS. OR are they the same. Lololololk "just,just"
-
The all mighty dollar cloaks the wolves behind big pharma. They don't want you cured, that would make them lose a customer, that is all we are to them. The bad thing is my last name is the same as one of the largest pharmaceutical companies out there.
Else...... i had a feeling this was a funded research medication, how else would they do it without government money.
After i tested pos for hcv in 2010, and probably 2 or 3 years later, i received in the mail from my state senator during election time, his views on big pharma and this "$1000 dollar pill". It didn't state that it was harvoni, but he was saying how outrageous it was to charge that kind of money for medication to anyone. That was one of his missions as an elected official to look into it and let the people know. And now I'm on that $1000 pill, and have never heard about it again. Good thing for commercials on tv, thats how i found out about harvoni.
Have a good one all
-
ya sixftree I was on s and o and they were 1000 or more two and then Gilead bought them out [I think it was them] and they doubled the prices, thankGOD for the researchers and scientists who plug away aimlessly for us and not just for a paycheck. ''just Willie g''
-
Half way done! Last pill of the first bottle taken last night, feeling good, feeling positive. Almost all my joint aches are completely gone now and the energy in the mornings is tremendous. Hope that doesn't go away after treatment. Have a great day
-
Well today makes day 3 and I'm still alive.No problems yet.I thought it was affecting my vision and then I realized I hadn't put my glasses on.I'm so glad I don't have to deal with insurance companies.Then again maybe they should be glad they don't have to deal with me.lol Onward and upward.
-
Sixfttree,,,the energy is great isn't it? I feel for the ones on RIBA, I don't think they have experienced the Harvoni high as they call it. Going to go get my EOT blood work done today!
Go Royals
Scout
-
Scout, good luck on Your labs. I go this afternoon to get My EOT + 1 week results. I am about to piss all over Myself waiting to get them!!!!! It's been 14 weeks now since I started Tx. & 2 weeks EOT. I got a big ole' Texas size Seegar to celebrate with since the Astros choked up playing Ya'll. Did You get Your dragon banner worked on yet?
-
Congratulations on day 3 billt, my side effects were a mild headache for a week and then they went away, the insomnia required a sleeping pill, but other than that, it has been a breeze. Insurance companies suck, but oh well, at least i didn't have to foot the whole thing.
Good luck on your results scout, come on with the big negative!
The harvoni high is awesome
-
Wow Sixfoottree,
That went quick. For me watching you anyway! Good on you. Cal :)
-
I know, right. Time flies when you are feeling this good! Thanks cal, 28 days to go
-
You're 28 days will fly by in no time Tree and it sounds like it's gone pretty easy for you.I really haven't noticed anything to speak of so it's all good.How have your numbers been looking?
-
All is still going well during the last leg of treatment, 3 weeks to go. Decided not to get the flu shot this year, we get them free from the company i work for, because i didn't know if my immune system could handle it during the harvoni treatment. Last year i actually got the flu a week after the shot that led to an upper respiratory infection, no thanks. Other than that, just living life and counting the days till eot, stay strong my fellow heppers, we will make it through this.
-
That's funny you mention the flu shot Six.I got mine 3 days before I started the treatment and never gave it a thought.By the time I started my immune system must have been ready to anything and everything. :)
-
Sixfttree I had the same thought as you and waited until after treatment to get my flu shot. Got mine on Friday . I wasn't going to even get one this year because of the Harvoni, but I work with the public 40 hrs a week, and I do not want the flu. My company gave them for free too, but I passed on theirs and when my treatment was over I just went to my doctors office
GO ROYALS
Scout
-
I can get a coupon or voucher to get the flu shot at a later date, i just don't want to get sick period. But having small children, 4 and 10 yr old, (germ factories as i call them, lol) it takes a lot of sanitizer and hand washing to keep me from catching anything. Just threw it out there if anyone else hasn't asked about the flu shot, maybe i should make a new post about it, we will see
-
Sixfttree , I called Giliad and they said they have no recommendation one way or the other because it is a dead virus. They said it is up to your own personal physician. That's why I waited until I finished treatment, but I had my own little germ factories get theirs last month
Go Royals
Scout
-
thx SCOUTDOY, its great when something dead is put inside me and I don't have to worry I'm plucking around like a cross between a pig and a chicken right now after reading that ,,, too
the moon ALICE!!!! ''just Willie g'' Gatorfalls can plucking mean flopping too? all you great folks have a great week and THx
-
I haven't been on in a while as my work has kept me very busy. That's a really good thing as my anticipation of my 4 week results have been a roller coaster of emotions for me. After three visits to my primary doc because of a spike in my blood pressure, I finally got my Bp manageable. I didn't know Harvoni could cause an increase in bp.
The great news in "UNDETECTABLE." And only after 4 weeks. It is truly remarkable considering I started with a v/l of 18,600,000
I feel such a relief and now to move on to the second half of treatment.
My hope is to see everyone with this body draining disease cured and feeling refreshed like I do.
God bless to all
-
That's fantastic Lucky!
Scout
-
Way to go luckylarry, 13 pills to go for me after tonights little orange miracle. Still waiting for my 4 week results, actually had the test done at 5 + weeks because I'm battling a pulled back and can barely move. Have to see a chiropractor 3 times a week, but he got me to where i can stand up. Other than that, feeling fine. 13 days till eot and then the 3 month wait for final blood test, going to be a long winter waiting to go back
-
So awesome LuckyLarry!!!
Sixftree So SOON! Woohoo!!!
8) 8) 8) 8)
-
Well done SixFfoot!
Wow that went so fast. If I was finishing my 12 weeks I would be finishing in 10 days! Rats I am doing another month!
Bummer about the back in the middle of tx. I have been having physio every week for my neck! And so it goes on.....Cal :)
-
Just letting you all know, i took my last pill Tuesday night, still doing well and just wanted to say thanks for being there and all of your kind words. Only 3 short months to do the final blood test, and find out if I'm free.
-
Congrats on completing your prescription. Don't let the anticipation get the best of you. I started my last bottle of Harvoni today. 27 pills to go. Best to you!!
-
Keep posting SixTree! :) I look forward to hearing your good news.
-
SixFeet,
I am glad for you and wish you going on feeling good!
Thank you for your posts, you and all others, they are so supporting.
Wish you all the luck of the world,
Madelief (19th day on Harvoni and feeling good)
-
Congrats on completing your prescription. Don't let the anticipation get the best of you. I started my last bottle of Harvoni today. 27 pills to go. Best to you!!
Lucky;
I am right behind you, I start my last bottle on Monday. We will be finished just in time for Christmas 8) 8)
Cindy
-
Well, I took my last BIG pill of Harvoni this morning. Yippee!!
My doc wanted blood work today as well so I had that done.
So far, my results are undetected. Doc wants me to wait for 6
months for the next series of blood work. I have read that 12 weeks
Is the standard time for blood work. Can anyone tell me? I am hoping
to get results in 12 weeks. Also, I have been reading a lot about side
effects after treatment. What's the story there? I've had a few side effects
but nothing to serious. Life already feels better.
Luckylarry
-
Congrats on your completion of harvoni, my doc said 3 months to wait for final blood test. For me, the harvoni high went away after a couple weeks, i still feel good, just not the super energy i had while taking it. Staying positive though, i have to wait till February 20th for the final test, 2 more months.
-
Congrats on taking your last pill, Larry!
Re: blood tests post-treatment... Even though SVR12 is considered to be the definition of cured with the new DAAs, many doctors (and patients too), don't feel rock solid about saying "cured" until 6 months post-tx (SVR24). And so, to save the system money, a lot of doctors just go with a viral load test at 6 months (instead of one at 3 and another at 6). But by all means ask for one at 3 months. Maybe your doctor will give it to you. Or maybe you can get one another way. It is nice for your own peace of mind to know sooner rather than later.
As for the body's readjustment to civilian life post-tx... it seems to really vary person to person. I suspect most people are coming out of treatment feeling better, or at least no worse, than they did during treatment. Some of us, however, have significant post-tx problems lasting weeks or months. I wouldn't really call them "side effects" because I don't think they are a consequence of the drugs but rather of the rapid clearing of the virus (or possibly the result of some changes that occurred in the body during treatment, that were due to drugs, but that are hard for body to undo even after drugs are gone). Nevertheless, from what I can see (my own case included), even those situations resolve themselves with time. I am feeling quite good these days now that I am 5 months post-tx.
kim
-
Hooray Larry!!! Welcome to the other side!
There's something to this post-tx adjustment. I have more physical energy than I've had in many, many years. It feels wonderful. But after a day of hard, physical labor? It's lights-out for 10 hours! :o Or at least that's what happened yesterday. Weird. I can't say I mind sleeping like a teenager.