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Hep C Discussion Forum -> Living With Hep C -> Pinch me please!
Post Info TOPIC: Pinch me please!
SeeTheLight


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RE: Pinch me please!
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Hi Iris,

Like WOW! I was a little bored this morning and just read through your threads. What can I say....Golly Gee! Unbelievable the fight you have had had to get treated. Congratulations on not giving up the fight. Reading all this makes me so grateful to be in Australia where we treat all sufferers regardless. No one is excluded. Even current IV drug use does not exclude you. As my nurse told me the other day, there was a time when your liver had to be in a very bad way indeed, before you could gain treatment.

Over the years I had found that was the case, I was always led to believe something else would kill me before the Hep does.  Now they realise the error of their ways. That have now seen how quickly that can change in the untreated, meaning they will later need to provide so much more care. They would like to eradicate Hep C entirely in Australia. Doctors are now more aware to look further when a patients Liver Function Levels are elevated. I think the main obstacle now is awareness of the availability of these treatments. I had known I had it for close to 20 years, but only became aware of the new DAA's in July last year.

Anyway Iris, reading your story certainly makes me feel blessed to be live where I live. You must finally be able to feel blessed also. I am so pleased for you. It certainly has been a long time coming.



__________________

66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment Gen 3a Fibroscan 8.7

Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30 .....Oct 16 2018 SVR12 UND
Tig


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Hey Iris,

We'll be waiting for the starting whistle to blow! You've got all of us standing by with our Pom Poms at the ready biggrin



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Iris Dragonfly


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Oh holy cow you guys, I think I'm going to cry. Well... I did when the insurance company called and said they approved my appeal, but I wasn't really believing them, and then I went on vacation. Actually I think the dr. had quite a bit of input on that appeal. Thank you all on your good wishesbiggrin and encouragementbiggrin, it feels good to know I'm not alone. I will let you know when the meds arrive. I plan to start on the first of July for 12 weeks the course, they said.  

Blessings!, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
5-1-18


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I have some really dumb fears I guess,... one is I won't know how to act, I've become so accustomed to my illness and the ways to cope I don't know what to expect by feeling well.

not dumb, for realzzzzzz! i had the same feeling. and now i am just so over come with deep appreciation for the healing we get to have

that some one knew we mattered enough to find a cure for us, and provided us this gift for free or low cost, wow.

but yea, living hep C free .wow! free to let our immune system take over and work it's own magic on our liver.... on our lives.

we wanted this and it's happening for us

oh yea, my Mr. smoked pot the whole time, he cleared by 4weeks and EOT.  mid july will be his 6 month after EOT 

i don't like how pot makes me feel so i haven't smoked since early 70's.

happy, joyous and free of HepC , that is us

 



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0
Observer


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oh hurray! Im so pleased for you Iris...finally getting treatment after all youve been through  

I used pot when I was on treatment. I have enough trouble bothering to eat and the tx I was on, I had to eat an extra twice a day before the pills, so pot helped me with that.

I am a big believer in going on and off vitamins for periods of time anyhow, because I dont think they work as well if you dont have a break, so ask your Dr or nursie and if you have to go off them dont fret, the time will fly by.

Thanks so much for sharing your awesome news with us...cant wait till you get on that train and start stomping your dragon.



__________________

61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
Canuck


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Oh my Iris, these days have been SO long in coming for you! It was so unfair to have kept you waiting like this, for so long, making you have to try so hard, for so long. But happy days now - all your patience, perseverence and hard work has paid off! Finally, finally your "DAY ONE" approaches! biggrin

You'll have to update your sig line, and please keep us fed with the blow by blows, we will be hanging on your every detail, and watching you (with great relief and satisfaction) getting your cure you rightly deserved long ago!

Lovely Iris, that it is really happening, this time! biggrin C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
SeeTheLight


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Good luck Iris, apprehensions and all. Like you I have similar what ifs. I try to push them aside, but they do still sneak to the forefront. I am sure my what ifs will plague me some until I hit SVR in October, but they wont be controlling me. I plan to keep busy and try not dwell on that. I still have 4 1/2 weeks to go to EOT so making that is my goal for now.

The meager payment most of us cop is amazing when you look at full price of these medication. 



__________________

66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment Gen 3a Fibroscan 8.7

Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30 .....Oct 16 2018 SVR12 UND
5-1-18


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yay iris! , 

this harvoni train is a real trip! a life saving trip 

my 8 weeks went by fast. some days were longer than others but over all it wasn't too bad.

i paced myself and paid attention to anything that made things worse for me [foods,when to take the pill, working, resting] But it gave me something to focus on while i was on the tx.

i only have 3 pills to go and now i also have medical time off for some extra days to cruise on to EOT.

did the pharmacy give you any ideas how to store your pills?

i look forward to your "on treatment" thread.

5



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0
Tig


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Congrats Iris! I’m so happy to hear you have finally gotten the groundwork finished and are ready to drop the hammer on the Dragon. A treatment that has been elusive for you. All of that is over and you’re about to undertake the journey you’ve been ready to start for years.

The $5.00 copay is common. Many people have mentioned the same cost. Many times, Gilead offers a copay coupon that helps people reach that price. Many pharmacies handle that coupon submission for you, which may be why you got that great price! I’m so glad you got that, I know how the costs have been a concern for you in years past. No more worries now, you did it!

So when do you start? Remember, we have that Harvoni Train thread, you need to post your good news there once you get rolling. We used to have a lot of fun and interesting discussions there. I don‘t think there’s much info on pot smoking and Harvoni. Used to be some insurance companies would drug test you before treatment was approved and a positive drug screen would disqualify you. As far as booze is concerned, absolutely no alcohol during treatment and most advise against it afterwords. Depends on your current level of fibrosis and extra-hepatic manifestations. Give it a pass. You’ve waited too long for treatment, don’t risk success. Just my

Good luck, Sister!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Iris Dragonfly


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biggrinbiggrinbiggrinWellllllll, I just had a conversation with the "nurse" from the pharmacy company, she answered bunches of questions. She made me feel a lot better but I still have a great deal of anxiety over this.

I have some really dumb fears I guess,... one is I won't know how to act, I've become so accustomed to my illness and the ways to cope I don't know what to expect by feeling well. And what if it fails, I fall into the 1.5% percent or whatever it is, and what if I die?  It will be arriving at the heat of summer here and I do not have AC. It gets pretty hot in here, I told her I thought about waiting until fall but she said I would have to start the process over. I know this is coming at the right time but it is freaking me out. I take a regular aspirin and vitamins on a less regular basis. I do smoke pot but the pharmacist said there really wasn't any data on that. I forgot to ask about the vitamins. He said alcohol is not recommended but didn't say it would counter the affects. I have no worries about abstaining for the duration. I do consider fermented food beneficial and wonder about other such consumptions which I also forgot to ask. Too much on my mind...the thing that is shocking me the most is my co pay will be 5 dollars each month, can that be correct??? wow. The journey is about to begin. 

(is everybody in? the ceremony is about to begin)

signed a shocked surprised stunned surreal, Iris 



__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
lamassu


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Hi Tig,

Thanks for the tip! I just checked the formulary for my Medicare Advantage HMO for 2018 and found it interesting that Harvoni and Epclusa were covered but Vosevi and Mavyret were not. Not a problem for me as my hepatologist insisted Epclusa was the best treatment for my genotype 2 HCV with 99% success rates documented.

For someone new to Medicare and deciding options do your due diligence, make sure the plan you choose covers the DAA your hepatologist thinks is the best fit for you. I had already chosen my plan and lucked out (thank God!) You can only change plans during a yearly window from October 15 to December 7.



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Male, 67, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24. 8/15/19 F2 8.8 kPa.
Tig


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Hey John,

Don‘t forget, that entire $6100 is deductible on your taxes. It will reduce your out of pocket expenses a little bit! We have to take advantage of every opportunity!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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lamassu


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I was fortunate: Medicare used a specialty pharmacy that would ship to me FedEx or I could drive an hour and pick up and pay in person. I chose to make the drive each month rather than risk missing FedEx. Somehow it was comforting to have the pharmacist hand me the Epclusa personally. I was worried FedEx might lose a $25,000 bottle of Epclusa. Total cost to me was $6100 for 12 weeks, Medicare paid the rest.



-- Edited by lamassu on Friday 1st of June 2018 12:35:46 AM

__________________

Male, 67, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24. 8/15/19 F2 8.8 kPa.
5-1-18


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iris, yes, it all unfolds perfectly eventually.

our meds  were delivered via fed-ex and someone had to sign for them. they gave us the exact date they'd be here but a wide time.



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0
Tig


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Don’t worry, Iris! I have that feeling, and it never lets me down. Your time to Tx is near!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Iris Dragonfly


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Yea, now it's  a wait again situation. The insurance said call the pharmacy, uh...well, they didn't have any rx for me. Lady said she only saw request back in Jan of 2017...that must have been the time they called me, boy did that get my hopes up.

Now we are back to the ID number snafu from the beginning of the year, (a very long story) Anyhoo called the insurance gal back and told them the trouble, she saw it was the ID number problem as well as it appeared the dr. was sending to the wrong pharmy. I called tthe dr. today too but they did not call back. We'll have to deal with this tomorrow says insurance gal.

Sigh...hurry up and wait...Ive waited this freaking long, suppose a couple few weeks isn't  going to make a difference now. And as I understand these meds will be delivered by mail. Just gotta make sure husband will be on the lookout (he's not coming on the trip.) 

Signing out, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
Tig


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Congratulations Iris! That’s wonderful news and long overdue. You’ve been working on approval for years and I’m so happy to hear that somebody finally figured out the error of their ways.

If you can pick up your medication and store it at home, without requesting a delay, do it. Otherwise, follow their advice. If anyone hesitates, I’d resort to the former...

127281CE-A064-4FFB-8584-1FC7BADB5BA1.jpeg



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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5-1-18


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iris, let them know ahead of time that you need to postpone tx till you are back in town. [doctors and pharmacy]



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0
Loopy Lisa


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Congratulations, denied three times? These insurance companies are sure fast to take our money and slow to cough up aren't they! 

Happy treating, it is worth it, and afterwards it is weird to have no worries. :D



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Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Iris Dragonfly


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I'm still in a state of shock, just got off the phone with Heath Net. The Dr. and I have appealed their denial of Harvoni for the third time, I think it is. Is that truly going to be the charm? I have been so pissed at Health Net for all the snafus in payments and other garbage which I wont go into now, but  They said my appeal has been APPROVED!!   WHAAAAAAAAaaaaaa Are you sure? was all I could say. I asked her over and over if this is really true. I couldn't contain my self. I'm a blubbering mess. She will be calling back with the confirmation number and I can call the pharmacy. I still don't want to get my hope up too much, what if it's a mistake?

To top this all off I'm going on vacation in 3 days, will be gone a half a month. Now I'm worried they will take it back because I cannot start right now. She said it shouldn't be a problem but I really tend to worry about things. 

PINCH ME! I'm not sure if this is really going to happen

Wow, Iris



__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
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