Author Topic: My journey has started (Read 71366 times)

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.

MaryC · « **Reply #1 on:** September 22, 2015, 08:21:14 pm »

Quote from: 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.

Congratulations! If you are like me, you must feel like the light is shining brightly at the end of your HCV tunnel.

sixfttree13 · « **Reply #2 on:** September 22, 2015, 08:40:17 pm »

Yes it is, the black cloud is slowly lifting and maybe i can be me again when I'm free.

Rosie13 · « **Reply #3 on:** September 22, 2015, 09:15:46 pm »

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!

Philadelphia · « **Reply #4 on:** September 22, 2015, 09:16:21 pm »

Welcome and all the best! It's a great time to be accessing treatment. How long is your treatment for?

sixfttree13 · « **Reply #5 on:** September 22, 2015, 09:52:15 pm »

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.

KimInTheForest · « **Reply #6 on:** September 22, 2015, 09:57:42 pm »

Congrats on beginning treatment sixfttree! Welcome aboard. May your journey be smooth.

kim

byebyeC · « **Reply #7 on:** September 23, 2015, 01:20:34 pm »

Welcome sixfttreet3!

This time will be much better! 56 is not too bad at all!!!

Cheers to your SVR!

bye!

sabre · « **Reply #8 on:** September 23, 2015, 01:47:33 pm »

Those 8 weeks will fly by. Good luck and best wishes for SVR.

Bree · « **Reply #9 on:** September 23, 2015, 04:58:57 pm »

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

Missmichelle27 · « **Reply #10 on:** September 23, 2015, 08:25:12 pm »

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.

Rosie13 · « **Reply #11 on:** September 23, 2015, 09:19:11 pm »

Brew that is so cool to be your final leg...almost time to graduate HepC school!

Else · « **Reply #12 on:** September 23, 2015, 09:25:53 pm »

Nice handle! And congratulations.

KimInTheForest · « **Reply #13 on:** September 23, 2015, 09:45:23 pm »

Quote from: Missmichelle27 on September 23, 2015, 08:25:12 pm

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

Cal · « **Reply #14 on:** September 24, 2015, 03:22:25 am »

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

Cal · « **Reply #15 on:** September 24, 2015, 03:23:38 am »

Hi sixfttree,
You said it succinctly, you will be you again. I am going to be me again too. Cal

sixfttree13 · « **Reply #16 on:** September 24, 2015, 11:28:25 am »

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.

Scoutdoy · « **Reply #17 on:** September 24, 2015, 12:28:27 pm »

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

Cal · « **Reply #18 on:** September 24, 2015, 04:11:38 pm »

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

sixfttree13 · « **Reply #19 on:** September 24, 2015, 10:04:57 pm »

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

drummerman · « **Reply #20 on:** September 24, 2015, 10:10:49 pm »

Quote from: 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.

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

sixfttree13 · « **Reply #21 on:** September 25, 2015, 07:20:04 am »

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

Scoutdoy · « **Reply #22 on:** September 25, 2015, 09:23:55 am »

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

Rosie13 · « **Reply #23 on:** September 25, 2015, 12:39:02 pm »

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!

Cal · « **Reply #24 on:** September 25, 2015, 07:51:45 pm »

Omg sixfttree,
Please be careful and do have time off if you need it. Scary. Cal

drummerman · « **Reply #25 on:** September 25, 2015, 11:33:09 pm »

Quote from: sixfttree13 on September 25, 2015, 07:20:04 am

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

sixfttree13 · « **Reply #26 on:** September 26, 2015, 04:33:31 pm »

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

Cal · « **Reply #27 on:** September 26, 2015, 06:07:15 pm »

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

Else · « **Reply #28 on:** September 26, 2015, 08:33:59 pm »

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.

drummerman · « **Reply #29 on:** September 26, 2015, 08:38:03 pm »

Quote from: sixfttree13 on September 26, 2015, 04:33:31 pm

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

Bree · « **Reply #30 on:** September 26, 2015, 10:10:53 pm »

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

Scoutdoy · « **Reply #31 on:** September 26, 2015, 11:07:47 pm »

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

drummerman · « **Reply #32 on:** September 26, 2015, 11:51:49 pm »

Quote from: Scoutdoy on September 26, 2015, 11:07:47 pm

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

sixfttree13 · « **Reply #33 on:** September 27, 2015, 10:46:37 am »

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

Cal · « **Reply #34 on:** September 27, 2015, 04:55:02 pm »

Good luck Sixfttree, I hope your 4 year old is still taking naps! Cal

sixfttree13 · « **Reply #35 on:** September 28, 2015, 07:23:10 am »

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

Scoutdoy · « **Reply #36 on:** September 28, 2015, 08:23:48 am »

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

sixfttree13 · « **Reply #37 on:** September 28, 2015, 02:08:15 pm »

Really? Sounds crazy. How far into treatment was this occurring or is it just random for each person?

Scoutdoy · « **Reply #38 on:** September 28, 2015, 02:35:35 pm »

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.

Else · « **Reply #39 on:** September 28, 2015, 03:12:34 pm »

Quote from: Scoutdoy on September 28, 2015, 02:35:35 pm

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!

)

Cal · « **Reply #40 on:** September 28, 2015, 04:39:53 pm »

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

Cal · « **Reply #41 on:** September 28, 2015, 04:40:40 pm »

Sorry about calling you fettered damn I pad corrects everything.

sixfttree13 · « **Reply #42 on:** September 28, 2015, 08:37:27 pm »

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.

sixfttree13 · « **Reply #43 on:** September 29, 2015, 08:58:00 pm »

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.

byebyeC · « **Reply #44 on:** September 29, 2015, 09:02:39 pm »

Congratulations on a week down sixfttree!

Scoutdoy · « **Reply #45 on:** September 29, 2015, 10:07:43 pm »

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

Else · « **Reply #46 on:** September 29, 2015, 10:23:27 pm »

It only gets better from here on out.

Cal · « **Reply #47 on:** September 29, 2015, 10:42:21 pm »

Sixfttree,
Well done my friend on the first week. Minimal sides too, going good. Cal

Bree · « **Reply #48 on:** September 29, 2015, 10:49:32 pm »

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.

sixfttree13 · « **Reply #49 on:** October 01, 2015, 07:30:22 am »

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).

Scoutdoy · « **Reply #50 on:** October 01, 2015, 09:14:43 am »

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

Cindy1955 · « **Reply #51 on:** October 01, 2015, 12:22:20 pm »

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

KimInTheForest · « **Reply #52 on:** October 01, 2015, 12:26:10 pm »

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

Cindy1955 · « **Reply #53 on:** October 01, 2015, 01:20:07 pm »

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

Cal · « **Reply #54 on:** October 01, 2015, 07:07:02 pm »

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

Bree · « **Reply #55 on:** October 01, 2015, 07:20:39 pm »

Welcome Cindy ~ You started Harvoni Sept. 28 and I ended Sept 28... a date to go down in history

Best of luck on your journey - it sounds like you are off to an excellent start!

Cindy1955 · « **Reply #56 on:** October 01, 2015, 08:13:11 pm »

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

Bree · « **Reply #57 on:** October 01, 2015, 08:24:32 pm »

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.

sixfttree13 · « **Reply #58 on:** October 01, 2015, 08:37:28 pm »

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.

Cal · « **Reply #59 on:** October 02, 2015, 05:41:25 pm »

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

sixfttree13 · « **Reply #60 on:** October 04, 2015, 09:06:28 am »

What is an ore tx test cal?, i had blood drawn and ultra sounds done, if that is what you mean.

Cal · « **Reply #61 on:** October 04, 2015, 07:33:10 pm »

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

sixfttree13 · « **Reply #62 on:** October 04, 2015, 09:53:52 pm »

No worries cal, i hope i get my results soon so i can post them, now i really want to see the results

Cal · « **Reply #63 on:** October 04, 2015, 11:11:28 pm »

Thanks Sixfttree,
Yes those results we become quite exciting! Cal

Scoutdoy · « **Reply #64 on:** October 04, 2015, 11:14:25 pm »

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

Scoutdoy · « **Reply #65 on:** October 04, 2015, 11:17:03 pm »

Cal, I hate that auto correct too, makes me look like a moron

Scout

Bree · « **Reply #66 on:** October 04, 2015, 11:37:39 pm »

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!!!

onmyway · « **Reply #67 on:** October 04, 2015, 11:41:19 pm »

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.

Bree · « **Reply #68 on:** October 04, 2015, 11:53:30 pm »

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!

Bree · « **Reply #69 on:** October 04, 2015, 11:55:11 pm »

Sometimes I just smile at strangers just because....

byebyeC · « **Reply #70 on:** October 05, 2015, 11:02:47 am »

Welcome onmyway!

We're here for you anytime!

Marianne

Cal · « **Reply #71 on:** October 05, 2015, 06:10:57 pm »

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

sixfttree13 · « **Reply #72 on:** October 05, 2015, 08:00:41 pm »

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

Bree · « **Reply #73 on:** October 05, 2015, 08:36:57 pm »

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!

Scoutdoy · « **Reply #74 on:** October 05, 2015, 09:23:33 pm »

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

sixfttree13 · « **Reply #75 on:** October 05, 2015, 10:26:41 pm »

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

Bree · « **Reply #76 on:** October 05, 2015, 10:31:28 pm »

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.

Cal · « **Reply #77 on:** October 06, 2015, 03:41:54 am »

Oh Sixfttree,
Excellent V/L and low LFTs. You'll do great. tx naïve too. You're a winner. Cal

Cal · « **Reply #78 on:** October 06, 2015, 03:43:05 am »

Naïve Bree,
I can just see the scenario! You are a card! Cal

sixfttree13 · « **Reply #79 on:** October 06, 2015, 07:31:19 am »

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.

Scoutdoy · « **Reply #80 on:** October 06, 2015, 10:39:20 am »

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

Cal · « **Reply #81 on:** October 07, 2015, 01:21:25 am »

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

Rosie13 · « **Reply #82 on:** October 07, 2015, 01:03:35 pm »

Cal, you are amazing...attitude of a warrior....We will all get there & you prove it!

Cal · « **Reply #83 on:** October 07, 2015, 11:42:13 pm »

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

Cal

sixfttree13 · « **Reply #84 on:** October 08, 2015, 07:31:07 am »

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.

Rosie13 · « **Reply #85 on:** October 08, 2015, 09:12:40 am »

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!!

Cindy1955 · « **Reply #86 on:** October 08, 2015, 10:03:23 am »

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 $:-\$

Scoutdoy · « **Reply #87 on:** October 08, 2015, 12:57:20 pm »

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

Cal · « **Reply #88 on:** October 08, 2015, 07:37:50 pm »

Quote from: sixfttree13 on October 08, 2015, 07:31:07 am

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

Cal · « **Reply #89 on:** October 08, 2015, 07:43:53 pm »

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

luckylarry · « **Reply #90 on:** October 08, 2015, 08:28:12 pm »

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

sixfttree13 · « **Reply #91 on:** October 09, 2015, 07:31:05 am »

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!

sixfttree13 · « **Reply #92 on:** October 11, 2015, 05:17:28 pm »

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.

Else · « **Reply #93 on:** October 11, 2015, 05:48:35 pm »

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.

Rosie13 · « **Reply #94 on:** October 11, 2015, 07:36:10 pm »

Cal · « **Reply #95 on:** October 11, 2015, 07:38:18 pm »

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

MaryC · « **Reply #96 on:** October 11, 2015, 07:43:53 pm »

Quote from: sixfttree13 on October 11, 2015, 05:17:28 pm

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

sixfttree13 · « **Reply #97 on:** October 11, 2015, 08:55:13 pm »

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.

byebyeC · « **Reply #98 on:** October 11, 2015, 11:30:42 pm »

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.

Cal · « **Reply #99 on:** October 12, 2015, 05:22:49 am »

Wow,
So is support path a Government Department or an NGO?(charity?) cal

Forums Index

Welcome

Author Topic: My journey has started (Read 71366 times)