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Author Topic: Picked up my new best friends - starting the AbbVie treatment  (Read 12965 times)

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Offline Philadelphia

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Picked up my new best friends - starting the AbbVie treatment
« on: March 23, 2015, 07:06:31 am »
So I'm in Australia, and everything here is a little different. Chief difference, the drugs are not publicly available here. I am on a Special Access Scheme and consider myself lucky to be on it.

I also live 400km from my treating specialist and the hospital he works from.

I have a spreadsheet they gave me of test dates, scan dates, reminders and alerts for myself, my normal GP and the liver guy in my neck of the woods who wants to kept in the loop. I have ready access to my nurse via phone and email. Also the specialist.

I was in today for all the "stuff" - a fibroscan, ECG, bloods, blood pressure, grease & oil change, tyre rotation. Then I got to pick up the drugs from the hospital pharmacy - a huge amount for a month. It's a little more complicated than normal because as I said, they are not really available here unless through this special process. I went back to the nurse and we chatted some more about what to expect, how I was feeling and what would happen next.

Then back to the hotel and I start tomorrow. I also head home tomorrow.

This has been a roller coaster ride so far. But forward motion is forward motion, no matter how many loops it might involve. :)



Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Ruthie

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Re: Picked up my new best friends - starting the AbbVie treatment
« Reply #1 on: March 23, 2015, 09:45:01 am »
That's a lot of work to get your meds! Good luck in killing the monster!
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Offline Philadelphia

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Re: Picked up my new best friends - starting the AbbVie treatment
« Reply #2 on: March 23, 2015, 04:22:46 pm »
It is, Ruthie. But not as hard as the fight I've had to get to this point.

As I said, the new DAAs aren't available in Australia yet, so all you guys with (relatively) good access to Sovaldi, Harvoni, V-Pak - cherish that access and know how lucky you are. Because over here we need to have a specialist prepared to find a trial or access to the drugs through the company, fight the paper war with the government to allow importation through the SAS and then deal with the organisational challenges.

I was prepared to travel to the States and spend roughly $100,00AU on drugs, then the cost of living there for at least 3 months, air flights, doctor's costs and lab/hospital costs to get access so this is a lot easier than that. And even then I was lucky - my family, who clearly must love every much, were prepared to pay for it. I guess they didn't want to have to pay to bury me ;)

So I feel immeasurably lucky, and I hope to be able to pay it forward by supporting other people who are going through what I am and lobbying the government to change their minds on allowing these drugs onto the PBS here in Australia.allowing the new DAAs on to our PBS (Pharmaceutical Benefits Scheme) would mean easy and cheap access for those who need them.

And finally, if there's one thing you'll work out from reading my posts, it's that I like to talk!
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Ruthie

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Re: Picked up my new best friends - starting the AbbVie treatment
« Reply #3 on: March 23, 2015, 11:48:47 pm »
This is definitely making me thankful for what I have! I never would have thought those of you in Oz wouldn't have the same access to the meds. Apparently I live in a bubble.
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Offline sapphire101

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Re: Picked up my new best friends - starting the AbbVie treatment
« Reply #4 on: March 23, 2015, 11:59:01 pm »
Great to hear from you Philly! I have not a clue how far 400km is but if you are in a hotel this must mean it was quite a road trip.

What medication treatment are you on? I am very curious what the land down under is providing you.
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Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline Philadelphia

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Re: Picked up my new best friends - starting the AbbVie treatment
« Reply #5 on: March 24, 2015, 05:39:17 am »
Hi Sapphire, It's about 250 miles one way. Long enough that I don't eat to drive there and back in a day!

I'm on paritaprevir/ritonavir/ombitasvir, dasabuvir and ribavirin. 24 weeks, owing to cirrhosis and 1a.

Lots of tablets, but that's okay. :)
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline sapphire101

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  • "Stop worrying and start living"
Re: Picked up my new best friends - starting the AbbVie treatment
« Reply #6 on: March 25, 2015, 12:03:08 am »
I'm on paritaprevir/ritonavir/ombitasvir, dasabuvir and ribavirin.
Welcome to "Club V" for Viekira Pak with Riba Philadelphia!
I was not sure what combo meds you would be getting from your posts and these are the same DAA as in the USA. You can follow my journey on my post "Viekira Pak started on February 17th". I am posting weekly to help anyone that is coming along on this new medicine. We are only about 10% of the Class of 2015 and I am very glad you could join us.


My first two weeks I felt the most side effects and it has been fairly smooth sailing since then.


One bonus with a lot of tablets is that it certainly keeps me drinking the water and hydration is very good for us.
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Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline Philadelphia

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Re: Picked up my new best friends - starting the AbbVie treatment
« Reply #7 on: March 25, 2015, 12:25:58 am »
Trust me, Sapphire, your posts have been at the top of my reading list. :)

I'm only two days in and very aware of not going all psychosomatic. So far I feel fine but hey - two days. One swallow does not a summer make! I've taken this week off work to see how I feel. I work in what can be a pressure environment and I am the boss, so it's not fair to anyone for me to be there and be scattered.

As I've said before, I feel like I've won the lottery with this chance, so I'm prepared to put up with a fair bit to stick it out. Hey, it's got to be better than interferon, right?
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline sapphire101

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  • "Stop worrying and start living"
Re: Picked up my new best friends - starting the AbbVie treatment
« Reply #8 on: March 25, 2015, 12:56:57 am »
Amen Brother!
I was first trying to get on the one pill a day harvoni train, but when that did not work out I was thrilled to get Rx for Viekira Pak. Any regimen with 97% SVR is like winning the lottery and absolutely better than interferon. Look at the numbers - very few people drop out of the new DAAs even with ribavirin. Many could not take interferon and most waited for decades until medication without interferon was available.


Most awesome that you can take this first week off to take good care of yourself. Keep in touch.
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Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline Philadelphia

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Re: Picked up my new best friends - starting the AbbVie treatment
« Reply #9 on: March 27, 2015, 05:46:07 am »
Day 4:
Despite being off work, I've been in twice for various things.but I corralled other work off and only did what I needed to do.

I've arranged to have every Friday off work. I think I owe it to myself, having worked hard for many years, with relatively dodgy health.

I wake up, have breakfast, take the medication, do my usual 3km walk with the dog, come home, fill the day with whatever I need to, feed dogs, cats, chooks, horses, have dinner, take the medication, veg out on Netflix, go to bed.

I feel okay. I feel itchy if I think about being itchy. I find I rub my face a lot. I don't feel nauseated much, I don't feel any more tired than normal, I do feel mentally scattered. I get names wrong. I sometimes repeat something half an hour after I've siad it initially.i don't know if that is due to lack of focus and concentration because  I'm not working, or brain fog.

All the other things - the anaemia in particular - no idea. I haven't fallen and lay gasping on the floor, so I guess so far, so good.

I feel better than I did when I was(ever so briefly) on interferon/riba. Then I felt agitated and almost ADHD. In the two weeks I was on those drugs I painted all the ceilings in my house, then painted my daughter's bedroom. I think part of it was a determination not to let interferon get me down. It did, by shredding my neutrophils and platelets, but I didn't want it to be the boss of me. So I fought against it.

This time, I'm embracing the treatment. I'm welcoming it into my life and my body and hoping we can work together. It's not the enemy, the virus is the enemy and we are going to very politely show it the door.

I had a stellar morning this morning though - got up, stubbed my toe, jammed my finger in a door, picked up 4 wheelbarrow loads of horse manure, then came inside to find the cat had thrown up all over the kitchen floor. The positive in all that? It was a vinyl floor.
« Last Edit: March 27, 2015, 05:48:58 am by Philadelphia »
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Lynn K

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Re: Picked up my new best friends - starting the AbbVie treatment
« Reply #10 on: March 27, 2015, 06:04:46 am »
Love your attitude lol especially glad you had a great morning always good to start the day right lol

Somehow I can see you and your syringe of interferon hopping along politely escorting hep c to the door and down the road.

You have a great day and hope you have an even better day tomorrow!
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Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Ruthie

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Re: Picked up my new best friends - starting the AbbVie treatment
« Reply #11 on: March 28, 2015, 08:48:26 pm »
Hey, Philadelphia, glad you had a great morning LOL

I have to ask-what is a chook?

Watch out for anemia. It can sneak up on you and you may not even know it. I was sent to a hematologist for something else and he discovered I was severely anemic. He likes people to be between 100-400 on iron counts. I was at 3. He escorted me to the infusion room for an iron infusion. I had to beg him to let me call my mom, who was watching my child. I was SEVERELY anemic and really had no idea. I was tired, but I'm always tired with HCV.
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Offline Philadelphia

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Re: Picked up my new best friends - starting the AbbVie treatment
« Reply #12 on: March 29, 2015, 07:09:00 am »
Chook is just slang for chicken Ruthie :)
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Red Hen

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Re: Picked up my new best friends - starting the AbbVie treatment
« Reply #13 on: March 29, 2015, 05:55:33 pm »
Hi, Philadelphia. Welcome to Club V. Hope all goes well for you!
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genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline Ruthie

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Re: Picked up my new best friends - starting the AbbVie treatment
« Reply #14 on: March 29, 2015, 11:52:32 pm »
Well, I learned something new!
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