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Author Topic: Cal on Vierkira Pak & Ribas  (Read 366713 times)

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Offline Cal

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  • Posts: 957
  • Cal on Viekira Pak
Cal on Vierkira Pak & Ribas
« on: August 22, 2015, 09:42:42 pm »
Hi all,
I am in Brisbane Australia and started compassionate access Veikira Pak and Ribas for 12 weeks. I am on Day 3. I am a previous non responder after having a bad reaction to Ifn on a trial which put me in a Psych unit with agitation. So I am a little anxious about what this tx will bring, so am asking kindly for your support on this journey.

I have some weakness and breathlessness already but was advised by Phoenix and Philadelphia on another thread that this is typical. So I am pushing forward and hoping that the next few weeks will see a calm down of some of the symptoms, if not, never mind. :)

I am resolute to slay this dragon this time. Looking forward to getting to know you and your wisdom's and kind words. Thanks. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Philadelphia

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  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Cal on Vierkira Pak & Ribas
« Reply #1 on: August 22, 2015, 10:29:41 pm »
AUSTRALIANS ARE TAKING OVER THE FORUM ONE VIEKIRAN AT A TIME!! ;)
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 slats1056

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  • Posts: 765
  • SVR to all and to all a good life!
Re: Cal on Vierkira Pak & Ribas
« Reply #2 on: August 22, 2015, 10:35:38 pm »
 I'll see Your Viekira & raise You a half a dozen Harvonis there little lady.LOL. BTW , how the heck are You going to Take over something that is allready Yours??  HA HA HA!!!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Philadelphia

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Re: Cal on Vierkira Pak & Ribas
« Reply #3 on: August 22, 2015, 10:41:03 pm »
Just out of curiosity, how old are you Cal? I'm 56 and often wonder whether tiredness and the like isn't just part of getting older.
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 Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #4 on: August 22, 2015, 10:52:49 pm »
Hi Philadelphia,
I just turned 59 ::) did you get the tiredness too? Mines a weakness where I have to sit or lay down. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline dearprudence

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  • Posts: 121
Re: Cal on Vierkira Pak & Ribas
« Reply #5 on: August 23, 2015, 05:55:30 pm »
Welcome Cal,
I am another Viekiran (with riba) and just finished treatment on 8/2/15.  EOT bloodwork still shows virus undetected (had been since week 4).  Praying for week 12 results to be the same.
About side effects, all I can say is wow - acid stomach, emotional ups and downs, crying for no reason, sleepless nights, etc. But remember, everyone is different and docs can prescribe an anti depressent temporarily if you feel you need it.  Towards the end of treatment my skin felt like I had little tiny bugs walking up and down my arms and all through treatment I had a horrible dry cough - sometimes felt like my throat was closing and I could not speak because I was coughing so badly.
Always carried water and a large supply of Ricola berry cough drops.  :-)
Twenty days post treatment and I am sleeping much better, have acid once in awhile at night, and still coughing, but less and less. I did become slightly anemic and so energy level is out of whack - takes time to get moving in the morning and I get tired earlier in the day. (This too seems to be improving slightly.) All in all, side effects were manageable (although my husband might disagree!).
Would do it again in a heartbeat to be rid of this HCV.

Saw doc last Monday and said to give myself another 2 weeks and I should see a drop in side effects. Will do blood beginning of September and again beginning of November.

ONE VERY IMPORTANT NOTE: I discussed self-reinfection with doc because it was brought up in forums. As soon as I was undetected, I ran to dollar store and bought diposable razors and toothbrushes. Virus can live outside the body. Doc told me that since I brought it up he is telling all new patients to switch out things that can reinfect as soon as they become undetected.

Good luck Cal!  Hope to see you on the flipside! 
Prudence

Offline Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #6 on: August 24, 2015, 12:58:00 am »
Hi Prudence,
Thank you for the warm welcome. Wow you made it through tx! Well done. It sounds like you had it a little rough. Post tx sounds promising, I had been wondering about that. I went to the chemist today and got antihistamines and indigestion meds. Experiencing both already on Day 4.
I can't take anti depressants as I have Serotonin Syndrome, so I just have to suck it up and swallow some concrete. I'll check you're thread to see if you txed with ifn before etc. It's very different to that thank goodness.
Thanks for the tip on reinfection/ I had not heard of this before. So you can still reinfect yourself if you are UND? Interesting.
I am sure we shall have a few more conversations! Thanks for your good wishes. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #7 on: August 24, 2015, 01:02:47 am »
Day 4. I went out today, sticking to my routine as Philadelphia advised. I was glad I did, even though I had to find a comfy chair in the Department Store! Bit less energy there :D
No terrible sxs today so far, palpitations once, no breathlessness, but need a rest now (it's afternoon here).
I'm also having those ribas 12 hours apart now. I wasn't doing that before.
Feeling waterlogged though! Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Philadelphia

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  • It only looks like I know what I'm doing
Re: Cal on Vierkira Pak & Ribas
« Reply #8 on: August 24, 2015, 01:32:57 am »
If you find the ribavirin affecting your sleep you can take them earlier (so said my nurse practitioner at St Vincents).
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 Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #9 on: August 24, 2015, 03:22:03 am »
Hi Philadelphia,
Is it okay to have the ribas less than 12 hours apart then? This is what  I was doing before. 7.30am and 6.30pm. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

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  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #10 on: August 24, 2015, 03:31:47 am »
Hi Prudence,
I can't find your thread. I was going to read it. Cal :)
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Philadelphia

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  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Cal on Vierkira Pak & Ribas
« Reply #11 on: August 24, 2015, 05:26:09 am »
I was told to keep the pink and beige ones 12 hrs apart but I could move the riba if I had trouble sleeping.
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 Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #12 on: August 24, 2015, 06:16:23 am »
Hi Philadelphia,
That makes sense. Thanks.
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline dearprudence

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  • Posts: 121
Re: Cal on Vierkira Pak & Ribas
« Reply #13 on: August 24, 2015, 09:59:02 am »
Hi Prudence,
I can't find your thread. I was going to read it. Cal :)
Hi Cal,
I'm not writing too much now as I am in the waiting game. I post some on completed treatment forums with Sapphire. I come back to the on treatment forums because I feel that if I can answer questions or give support to newbies on this journey I should do that. I had Philadelphia, Sapphire, Kimintheforest and others helping me with information and support, for which I am eternally grateful.
Realize that the chances of reinfecting yourself are very small, however I was not willing to take the chance. Since theoretically the virus from your own blood can live on your own razor / toothbrush., it is possible to reinfect yorself.
I contracted HCV in the early 1970's and was diagnosed as non A/non B. I am 64 years old ( got you and Philadelphia beat!) I was very lucky to progress slowly with this disease and since 1998 I have progressed from grade 0 to 1 to 2. Interestingly, my doc, who is into research on hvc and was involved in the research for this treatment, tells me that the disease seems to progress faster as we age and that when infected at an early age, men seem to progress faster than women.
I was treatment naieve because I was lucky enough to be able to wait for these new treatments.
I have also been told to eat at least 3 egg whites a week (or eggs), as the albumin in the egg whites seems to help with cell regeneration.
There are other threads here talking about foods to eat and the impotance of antioxidents.
I have been posting all over this forum, but don't  think I ever stared a thread.
I have been posting my journey on blogspot.com  - curing my hep c with viekira pak and ribavirin - if you have any interest  you can read it there.
All the best, Prudence
 
« Last Edit: August 24, 2015, 10:04:39 am by dearprudence »

Offline dearprudence

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Re: Cal on Vierkira Pak & Ribas
« Reply #14 on: August 24, 2015, 10:12:47 am »
Hi Prudence,
I can't find your thread. I was going to read it. Cal :)
By the way Cal, you can click on any member's name and then click on posts to see everything they have posted on these forums.

Offline Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #15 on: August 24, 2015, 06:15:48 pm »
Hi Prudence,
I will try to check out your blog. I was dx with non A non B at first and told go away prognosis good, it's like Hep A. I went away and was hit with severe fatigue and told when trying to get pregnant and having various blood tests that I had hep C. I was told not to have children, to adopt and have protected sex with my new husband. (I have 2 beautiful uninflected sons) I had a nervous breakdown. That's interesting about the research. I am unsure what my fibrosis score is yet. I have a fibroscan in a couple of weeks. I don't have cirrhosis though. You were lucky to be tx naive. I bitterly regret txing with ifn it ruined my life and my family's.
Thanks for the tip of clicking on members names, much appreciated.
I hope SVR is round the corner for you. Goodness knows we all deserve it and have earned it. Cal :)
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #16 on: August 24, 2015, 07:40:24 pm »
Hi all,
I was wondering about pain killers. I was on morph for a year and gave it up to wait for Veikira Pak. I now take Ibuprofen. Is this ok? I didn't ask the Doctor. I forgot. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #17 on: August 24, 2015, 07:55:43 pm »
Hi Prudence,
I couldn't find you under D or P in blog spot.com? Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

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  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #18 on: August 25, 2015, 01:03:09 am »
Day 5. I forgot to put that in just for the record. 8)
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline dearprudence

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  • Posts: 121
Re: Cal on Vierkira Pak & Ribas
« Reply #19 on: August 25, 2015, 05:46:31 am »
https://www.google.com/url?sa=t&source=web&rct=j&url=http://curinghepc.blogspot.com/&ved=0CCsQFjABOBRqFQoTCLenp-X3w8cCFcp-kgod3AIHXw&usg=AFQjCNGyenn5BlVOR4FMi6AHE51y2LBA9A.

Hi Cal, this is the link for blog. Or try curinghepc.blogspot.com/ . If you Google curing my hep c with viekira pak and ribavirin, the blog usually shows up about 3 pages in. We were all so naieve about what this disease was and how it could be passed on. Thankfully that is over!
FYI - my doc always told me Tylenol and not to overdo it.
Prudence
« Last Edit: August 25, 2015, 05:50:14 am by dearprudence »

Offline Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #20 on: August 25, 2015, 07:58:02 am »
Oh thanks Prudence,
I'll have a peek at your blog. Also what is in Tylenol? In Oz we only have  paracetamol and ibuprofen? Cal :)
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Philadelphia

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  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Cal on Vierkira Pak & Ribas
« Reply #21 on: August 25, 2015, 08:04:24 am »
I think you'll find Tylenol is Panadol. It's recommended that people with cirrhosis take Tylenol/Panadol only to reduce risk of internal bleeding.
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 Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #22 on: August 25, 2015, 08:15:52 am »
Hi Philadelphia,
I don't have cirrhosis,  can I take ibuprofen? I was on morph before and stopped it to go on these drugs? Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Philadelphia

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  • It only looks like I know what I'm doing
Re: Cal on Vierkira Pak & Ribas
« Reply #23 on: August 25, 2015, 08:38:25 am »
Sorry, I thought you had cirrhosis - usually that's what it takes to get compassionate access. If you don't, ibuprofen is fine from memory. There's an old thread about it here somewhere.
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 Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #24 on: August 25, 2015, 07:28:19 pm »
Thanks Philadelphia,
That's a relief. No I got compassionate access because of co morbidities. I'm very ill, but determined to grab back some health. My Professors believe some of my illnesses will be helped by tx. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Philadelphia

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  • It only looks like I know what I'm doing
Re: Cal on Vierkira Pak & Ribas
« Reply #25 on: August 25, 2015, 07:40:16 pm »
Cal, I had both my children without knowing I had hep C. One beforehand (I haemorrhaged and was given blood transfusion, most likely source of infection) and one after. Neither have the virus. One is a regular blood donor so her blood is checked all the time, the other has had a test.
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 Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #26 on: August 25, 2015, 09:32:46 pm »
Hi Philapdelphia,
It's such a relief to know the kids are clear. Mine are too, I had them tested. I had them knowing I had Hep C, but my Professor said there was such a low chance of transmission to go ahead. I am sooo glad I took his advice. Eldest son is in counselling because of how ill I am. He is terrified of me dying. He has ridden in the Ambulance with me a number of times! My husband isn't particularly supportive. I have to svr for my boys. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline drummerman

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  • Posts: 538
  • For those regarded as warriors....
Re: Cal on Vierkira Pak & Ribas
« Reply #27 on: August 25, 2015, 09:56:45 pm »
Hi Cal,

Welcome, nice to have another vike on site.  So many harvons on this site.  Even the ads are all harvoni... lol.

I had all the typical vike/riba sides.  2nd and 3rd week were the worse , but do-able and I went to work each day.  After 3rd week, every day got better.  Still have stupid riba cough that comes and goes.  Some times  I can't even tell I am on tx.

Everyday is better. 5 and 1/2 week to go.

dm
« Last Edit: August 25, 2015, 09:58:35 pm by drummerman »
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #28 on: August 26, 2015, 12:42:16 am »
Hi drummer man,
Day 6. Ooo oh 2 nd and 3 rd weeks worse. Yuk! Something to look forward to 8) are you doing 12 or 24 weeks? You're on the home stretch. I'll check out your thread fellow vike :) cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #29 on: August 26, 2015, 02:24:18 am »
Hey Cal, I was reading your posts earlier and I felt the need to comment on your husband not being very supportive. I had the same thing here. I had NO support, he didn't understand the daily pain I was in for years...and never went to a single doctors appt. with me. Some days I would literally crawl to the coffee pot because my joints hurt so bad. The difference you and I have was that I decided not to tell my children the entirety of my illness, because I didn't want any stress to influence their childhood, because of worry for me. I just told them I was getting old and had bad arthritis ..and left it at that. I still had a 17 and 7 yr old at home and chalked his lack of concern for me to be bone chilling. It literally ate my heart to the core on a daily basis. One day about 9 months ago  I couldn't straighten my knees or my elbows ...he sluffed it off as usual...I looked at him and said ya know what Tony...I would rather be alone and be lonely than to be married and be lonely.....and I did it....I told him to go find a new place to live.  Financially I am hurting a bit but my children are much happier because  I am not angry every day. I got motivated to get myself treatment and decided that surely some day I will meet a man who truly cares and supports me no matter what. I guess some people just can't understand what this dreadful disease does to your body, and added stress from the lack of support I think made it much worse. For me anyway. I thought I was the only one who's husband just didn't care or understand what was going on... We have 5 kids...but enough is enough. Mentally I am sooooo much happier...and I think it helps with the treatment to not have the stress. I have 7 weeks of treatment left..I feel great physically and emotionally and this woman is taking the world by the balls!
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Re: Cal on Vierkira Pak & Ribas
« Reply #30 on: August 26, 2015, 12:43:32 pm »
Good for you, Scoutdoy!! What an empowering story! Took a lot of courage to do what you did. But each act of courage makes us stronger still.

Right on,
kim

Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Cal

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  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #31 on: August 26, 2015, 06:06:47 pm »
Hi Scoutdoy,
Thank you for sharing that with me. It is very lonely. The reason I txed in 2011 was to leave him, but I became disabled by the tx and that plan was ruined. I planned not to tell my kids but 6 months ago I couldn't hide it from my 21 yo any longer. He asked me and I couldn't lie. He went on to write something about hep c and it's impact on the family and his mum which was published and presented to parliament with other stories in hope if getting the orals approved here in Oz. He was also part if a huge petition which was also presented. I am very proud of him. However, it is stressful for him and his younger brother 17 yo. The youngest looked at my Viekira Pak drugs and said these are anti virals,  what's gong on? I told him they were experimenting with the drugs on my Primary Aldosteronism. But I think he is starting to think hard. I don't know how much longer I can lie to him. But I have to, as he has an anxiety disorder from Autism as a child. He would think he could get it off me and it would be awful for him.
If I had a supportive husband these burdens would be shared. Ho hum. I am glad you were able to get out. Good on you. It's financial and being so ill that stops me now. I have lost a lot of confidence.  Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

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  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #32 on: August 28, 2015, 01:30:36 am »
Hi all viekerians,
I have been told that my SVR success rate is 80_90% now! because I previously was a non responder on NS5a drug Ledispavir. My GP showed me a letter from my specialist. I have had a blood test for resistance, but the test results take some time.
But stunned, but trying to focus on rates which are still good. Has anyone else come across resistance issues from trial drugs. Has anyone else txed twice with a trial drug?

Dazed Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline badbradley

  • Member
  • Posts: 294
Re: Cal on Vierkira Pak & Ribas
« Reply #33 on: August 28, 2015, 09:34:26 pm »
Hi Cal
           There is a forum member named pappy that failed a short course (8 wks) Harvoni therapy and is retreating on Viekira-Pak 24wks w/Riba. He is about halfway through treatment but he has not posted in quite some time. Hopefully he will post his progress soon. 
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Re: Cal on Vierkira Pak & Ribas
« Reply #34 on: August 28, 2015, 09:49:23 pm »
Hi all viekerians,
I have been told that my SVR success rate is 80_90% now! because I previously was a non responder on NS5a drug Ledispavir. My GP showed me a letter from my specialist. I have had a blood test for resistance, but the test results take some time.
But stunned, but trying to focus on rates which are still good. Has anyone else come across resistance issues from trial drugs. Has anyone else txed twice with a trial drug?

Hi Cal. The issue of resistance developing to the first generation NS5A inhibitors (ledipasvir, daclatasvir, etc.) is being discussed more and more now. Here is a 2014 paper on it:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3961994/

It appears that the second generation NS5A inhibitors now in development (GS-5816, etc.) have improved but not totally escaped the problem of resistance.

It seems to me that just because you didn't respond to (or get cured by) ledipasvir in a trial, that does not necessarily mean your HCV has developed resistance to NS5A inhibitors (although it is possible). There could be other reasons why a trial drug doesn't work on a person. Was the ledipasvir combined with sofosbuvir (Sovaldi) in your trial? Because that combo is Harvoni. And did you receive that combo for 12 weeks?

I think it is good that you are being tested for resistance to NS5A inhibitor. Stay hopeful and positive while waiting for the test results. The news may not be bad. Your current treatment could still quite possibly work for you. And even if it doesn't, so much is in the pipeline right now, that problems of resistance will  be solved along with everything else.

Good luck!
kim





« Last Edit: August 28, 2015, 09:51:32 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Cal

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  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #35 on: August 28, 2015, 10:33:55 pm »
Hi Bad Bradley,
Harvoni is sophos a polymerase and Ledispavir the NS5a. I only had the Ledispavir with another numbered but discarded PI.
My Doc isn't concerned about the PI just the NS5a. But if Pappy is on it after failing Harvoni, it'll be interesting to see his posts. Thanks. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #36 on: August 28, 2015, 10:41:08 pm »
Hi Kim,
Thanks for all that info. I responded really well in the trial UND at 2 weeks but, I developed issues with the ifn which made me stop at 11?weeks. Nothing to do with not responding. You're right I may not have resistance, but if I have then I still have a good chance at SVR.
I've seen others on viekira pak after Harvoni doing well, so it's just a Russian roulette, which other txs in the past have been.
Thanks for such a positive and uplifting response Kim. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #37 on: August 29, 2015, 08:33:00 pm »
Day 10. Feeling ok. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #38 on: August 29, 2015, 09:04:46 pm »
Good for you cal
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Cal

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  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #39 on: August 30, 2015, 04:29:25 am »
Thanks Scoutboy. Hope ur ok. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #40 on: August 30, 2015, 07:39:03 am »
Hi all,
Am having a lot of liver pain today and tonight. I used to have it say once a fortnight/week before. I like to think it's the drugs kicking virus ass! Any experiences, thoughts? Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Lou66

  • Member
  • Posts: 18
Re: Cal on Vierkira Pak & Ribas
« Reply #41 on: August 30, 2015, 09:36:05 am »
For Cal, hi i'm Italian and take info on this forum, very important for me because in Italy haven't info in the forum like this.
In Australia are there the private healt insurance like USA or the state healt care give the therapy for the Austrialian?
For the side effects, I'm on Harvoni only treatment, and start a week ago, have a strong headaches, but from the 4 days. Hope the body , like your, stay to fight the hole of the virus!!!
Stay strong stay cazzuto! Bye
« Last Edit: August 30, 2015, 09:40:39 am by Lou66 »
Hcv since 1986
2003 peg inf.+ riba nullrespond.
Genotype 1a
Fibroscan 18,1  F4
Viral load 3800000
Start Harvoni 24 weeks 24 aug. 2015

Offline Cal

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  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #42 on: August 30, 2015, 07:08:51 pm »
Hi Lou,
We have both here in Oz. Private and public. I see my Gastro privately which means I pay, but the drugs were on Compassionate grounds so through the Government and AbbVie so I don't pay for the drugs. None of the orals are available in Australia. You can only get them through compassionate access or on a clinical trial. I have a lot of friends who are thinking if going overseas to buy the generics from India. It's really bad here. I have very sick and dying friends, not everyone is given compassionate access. Without getting political we have a Government who just won't let the drugs become available.
Good luck with the Harvoni. I had headaches to begin with too, they get better. You're doing well. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #43 on: August 30, 2015, 09:45:42 pm »
Cal this may seem a little strange but I swear the first couple of weeks I felt like my liver would twitch every once in a while. I kind of thought I just moved in a weird way but it happened several times the first couple of weeks. It hasn't happened since then though. It didn't hurt, just kind of strange.

Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #44 on: August 30, 2015, 10:56:37 pm »
Hi Scout,
It's odd isn't it? The pain has been all over too not just the usual place. So maybe it is  drugs kicking ass? Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #45 on: August 30, 2015, 11:19:07 pm »
I think you may be right Cal. Although my 4 week lab still showed that I was detected, my viral load went from 13.9 million to >12.  That's like over 400,000 a day decline. I can't be too upset about that.

Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Cal on Vierkira Pak & Ribas
« Reply #46 on: August 30, 2015, 11:36:23 pm »
Scoutdoy & Cal, I'm with You guys on this, Major war going on inside. Some days even My hair seems to hurt. I started getting the LIVER QUIVERS ( for lack of a better term ) week four. No pain but it startles the crap out of Me when it happens!
  Fight the good fight everyone. Let us beat the virus into submission and enjoy life once again.
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Re: Cal on Vierkira Pak & Ribas
« Reply #47 on: August 30, 2015, 11:44:41 pm »
  Fight the good fight everyone. Let us beat the virus into submission and enjoy life once again.

Such great advice, Tommy! May we all get there. :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #48 on: August 31, 2015, 12:00:48 am »
Tommy, were you undetected in August when you had your labs done?


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Cal on Vierkira Pak & Ribas
« Reply #49 on: August 31, 2015, 08:44:00 am »
Scout,  Lab lost some of the results , part of which were the viral load. Last time I checked back with the Dr.s' office still no more info. I really liked the other numbers that came up once I got a chance to digest them. I have not in My memory had a panel that looked like that. Something is cooking inside Me and I like the smell so far!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #50 on: August 31, 2015, 10:27:32 pm »
Hi Scout, I have a high viral load as well so maybe it's working extra hard! Your drop at 4 weeks is something I would aspire to. Good on you. Cal :)
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #51 on: August 31, 2015, 10:33:48 pm »
Hi Scout,
I have a high viral load as well, so maybe it's just working extra hard! Your week 4 drop s amazing something I aspire to. Good on you! Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #52 on: August 31, 2015, 10:35:16 pm »
Sorry Scout I didn't  think the last one posted.
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #53 on: August 31, 2015, 10:46:52 pm »
Hi Slats,
I like that "Liver Quiver". I think I'll use that 8) Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Cal on Vierkira Pak & Ribas
« Reply #54 on: August 31, 2015, 11:21:59 pm »
 Hi Cal, Use it ? Hell You can have it, scares the crap out of Me when it comes from out of no where very unexpectedly!!! Hope all is well down under in Aussie land. I know we are worlds apart , but I think it's cool chatting with You & Philly Girl, OOPS I mean Phil-O!!!! LOL!!!! Couldn't be more different than kangaroos and armadillos.
  Just curious if anyone has noticed a correlation between the side effects of the different treatments compared to the length of time one has had the virus or level of damage to the liver?
  I have just started the halfway point of twelve weeks of Harvoni tx, Thank God the sides have dialed back quite a bit! Apparently I am on the two to three percentile team that has pretty bad sides. Oh well , I have put Myself though worse in search of a good time in the past,
  Cheers to You Guys and all the Hep Warriors down under, keep kicking Hep butt & taking names.
  THE PATH TO SVR IS A SUCKEE ONE , BUT ACHIEVING IT WILL BE SUBLIME!!!!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline dearprudence

  • Member
  • Posts: 121
Re: Cal on Vierkira Pak & Ribas
« Reply #55 on: September 01, 2015, 10:04:31 am »
Hi all,
Am having a lot of liver pain today and tonight. I used to have it say once a fortnight/week before. I like to think it's the drugs kicking virus ass! Any experiences, thoughts? Cal

Hi Cal,
yes, I had these "liver quivers" too (I like that description). I, too, had these before treatment and kicking in like crazy in the first few weeks of treatment. I visualized little VP and Riba warriors penetrating the HCV and kicking butt!
They calmed down after awhile and have only had them once post treatment. Hoping it is just my liver healing and cleansing.
Prudence

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #56 on: September 01, 2015, 12:21:19 pm »
Happy September 1st everyone, here is to a new month of recovery for us all!! I just received the actual lab numbers from the tests done last week. I don't know if the nurse who called me was reading my labs or someone elses, because the one in my hand shows I am going anemic ,,,and under Hep C RNA, PCR Quant it reads <12 (negative IU/mL) ....can anyone tell me what that means? Does that mean it's there or not there? Damm, I knew I should have paid more attention in Anatomy class in college..LOL

Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #57 on: September 01, 2015, 06:26:14 pm »

Hi Tommy,
Thanks very generous of you lol!
I see no correlation between sxs and length of time you've had HCV. I've had it for 35 years and so far sxs are manageable. Sounds like you've had a hard time poor thing. This HCV is so unfair.
Yep alls good here in Oz,mexcept our D, head  prime minister.  ;) won't let these drugs through.
BUT spring  is here and it's  warming  up. Are you in  warm place? The cold really messes with my temperature problems of sweats etc.
I agree the path is sucked for sure. Cal :)
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #58 on: September 01, 2015, 06:27:46 pm »
Hi Prudence,
I am putting the liver pain down to virus kicking butt too! Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #59 on: September 01, 2015, 06:30:21 pm »
Hi Scout
Sounds like you're UND to me Scout. When do you see your Doc again? You need to address the anaemia. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Philadelphia

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  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Cal on Vierkira Pak & Ribas
« Reply #60 on: September 01, 2015, 06:40:32 pm »
It's spring, the fruit trees are growing, things are warming up and I have five days left. 163 down, 5 to go.
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 Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #61 on: September 01, 2015, 11:07:46 pm »
Hi Philadelphia,
You are the bomb 8) Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: Cal on Vierkira Pak & Ribas
« Reply #62 on: September 01, 2015, 11:15:18 pm »
 Hey Cal, Well I at least hope the V-pac Meds are being good to You. I am hoping that the bad sxs are because My little Harvoni  army is kicking butt. Yea , I guess You could say it's warm here , mostly in the mid to high nineties. A week or so back it was 100-105 for a week & a half. Went to the Docs' to pick up My last four week Rx. , also told the nurse to make sure that the Lab had the directive to make sure all the tests came back in full , especially the viral load that got lost last time.
  Hi to You to Philadelphia, Man that is good news , the finish line is coming up and the winners circle is in sight! I just completed week seven , five more to go for Me. October 6 I believe, it looks like I'll have to wait until the New Year to get My twelve month EOT results back.
  Had a most excellent freaking day today! First day in seven weeks that there were NO SIDES except a little fatigue. The old pea brain was clear as a bell. Even though it was a bad day at work it didn't bother Me at all. Wish You all a beautiful spring in the land of Oz!!

   WE ARE BUT PAWNS IN THE LARGER SCHEME OF LIFE , HOWEVER THE LOWLY PAWN HAS THE ABILITY OF KICKING THE KINGS BUTT PROVIDING HE PLAYS THE GAME WISELY AND NEVER GIVES UP!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline slats1056

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  • SVR to all and to all a good life!
Re: Cal on Vierkira Pak & Ribas
« Reply #63 on: September 01, 2015, 11:19:30 pm »
 Scout , Looks undetected to Me. I guess this Hep Crap just won't let You enjoy success without a little dying kick at Your shin one last time. At least the anemia is addressed easier than the Dragon. Happy for You!!!! Good Luck , best wishes , and happy September first to You,
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Scoutdoy

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  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #64 on: September 02, 2015, 12:17:26 am »
Great news for you Philadelphia...your soooo close to the finish line!! I bet your very excited. I have to say that the anemia I am experiencing is probably self induced. I haven't been eating very well the last few weeks, I just really haven't had an appetite. That's unusual, because I am normally a pretty big eater. I know better than to not eat regularly, I just let it slip, I am going to make a better effort to eat more and see if that helps out. I am getting my yearly physical next week and I am sure this doctor will run labs.  Cal, it's 95 degrees and very humid where I live, it's been brutal. I am very ready for fall.

Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #65 on: September 02, 2015, 07:15:47 pm »
Hi Tommy,
That's hot baby! We get temps like that here too. Crank up the air con. I am having a few sxs fron the Viekira pak drugs. I get a bit of anxiety now. Hoping that passes too. Sorry you had such a hard time, but I put it down to kicking butt too :) as long as you can get those test results in your hot little hands! I think you'll do really well. It must have seemed unreal to have no sxs and a clear mind after 7 weeks, wow that's doing it tough. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #66 on: September 02, 2015, 07:21:45 pm »
Hi Scout,
That is hot, I don't know if you're on ribas too, but stay out if the sun and moisturise. You must eat properly. I make smoothies with kale, carrot, celery, apple whatever, they are great when you can't be bothered or don't want to be eating. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Scoutdoy

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  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #67 on: September 02, 2015, 07:47:03 pm »
Thank goodness I am not on ribas...just harvoni. I shouldn't bitch I have really had minimal side effects other than a couple of headaches and this little anemia thing going on. Ate a bunch of spinach today and I am grilling a big fat T bone steak tonight. That should boost the iron up a bit....might clog the old arteries but what the hell...LOL


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #68 on: September 02, 2015, 09:25:02 pm »
HI Scout,
You've probably already been told this, drink lots of water. Flush out the toxins. These drugs can dry us out too.Glad you're not on Ribas, they ain't no picnic! Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

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  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #69 on: September 03, 2015, 07:10:37 pm »
Hi all,
I got my 2 weeks results and I am dehydrated and have to drink 3 litres a day. Yuk! I am struggling but I have to have an ultra sound of the kidneys and bladder just to be sure. But I haven't been drinking enough water. HOWEVER, I got my LFTs. No VL yet still waiting for it.

LFTS Normal

AST 23
ALT 21
GGT 24

Doesn't look like resistance is an issue (hopefully I know it's not over till the EOT and 12 weeks bloods) But I am stoked baby! 8) 8) 8) Normal! Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline KimInTheForest

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  • Believe in yourself
Re: Cal on Vierkira Pak & Ribas
« Reply #70 on: September 03, 2015, 07:33:02 pm »
Way to go, Cal!!! Keep it up. You got this!

As for drinking 3 litres of water a day, squeezing lemon juice into it does make it a lot more interesting. I found I would drink more water with lemon in it than just plain water. And the lemon is beneficial in other ways too.

kim :)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Philadelphia

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  • It only looks like I know what I'm doing
Re: Cal on Vierkira Pak & Ribas
« Reply #71 on: September 04, 2015, 06:17:14 am »
Did they pick the dehydration through your e-GFR, albumin and creat. levels? If it's any consolation mine were wacky in weeks 2-4 and they dragged me in for the same tests. For me, it was nothing too serious, a reaction to the drugs (probably riba) and slight dehydration. They reduced my riba dosage and it started to return to normal.

Carry a water bottle. All the time. Have a glass of water when you find yourself near a tap. Drink little but often. And remember, it will be easier when the weather warms up.
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 Scoutdoy

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  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #72 on: September 06, 2015, 09:47:27 pm »
Hey Cal,,,,how are you doing? Hope you are doing better day to day. I have been drinking the protein drinks 3 times a day since I found out I was going anemic....wow, what a difference, or it could be that I am making myself eat even if I am not hungry. Hope everything is going good way over there where you live. Man, I would love to go to Australia some day. I have an appt with my primary physician Thursday, I think I am gonna ask to have my vitamin levels checked, what the heck , it's a physical so why not. Let me know how your doing, haven't seen you post today

Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #73 on: September 07, 2015, 03:45:46 am »
Hi Scout, hi everyone!
I just got home from 3 nights in hospital. My sodium levels dropped from drinking too much water, I think I went over 3 litres! I also have a rare genetic condition called Bilateral Primary Aldosteronism (there will be a test on this ::)hehe. It's of the adrenals and I take sodium sparing and potassium building drugs. So I had to go off those and they've tweaked them and let my sodium come back to normal. They also restricted fluids to one litre a day, that includes soups, juicy fruit, custard, cereal milk etc. so I was pretty pleased when they told me I was normal and to try drinking two litres first and then build up if can. My Gastro came over and briefed them all on Viekira and has consulted everyday. My ribas were cut from 5 to 3 until Thursday when I have a fibroscan with my Gastro and I can ask him if tests show I can go back up. Had to have a bit if medication but can't be helped. I thought I was going to due. My head was stoned, my body felt like walking through treacle. Now I am just weak and tired. So that's my drama. But main thing still on drugs hooray. I was so scared I would be told to come off but no one had that intention but to get me through.
Scout you should come to Australia, it's amazing I live in Brisbane Queensland. I have been to Los Vegas, San Francisco and Hawaii. I love your country every is extra sized. When I went to the Grand Canyon, we drove and stopped Rosie's Diner (is that what you call them) it was like in the movies. I ordered pancakes and Rosie said to me, if you can eat the whole thing you get it for nothing. Well it was enormous and Rosie got paid for that pancake. Lotta fun. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #74 on: September 07, 2015, 05:00:40 am »
Hi Phily,
I have no idea what tests revealed the dehydration sorry. I had struggling kidneys and had a scan on them. But was told in hospital that the kidneys were now fine.  Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

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  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #75 on: September 07, 2015, 05:05:00 am »
Kim,
I'll get some lemons, that makes it much more palpable, though the thought of getting back the headache I had in hospital is enough to have me drinking that wTer! Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Scoutdoy

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  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #76 on: September 07, 2015, 08:48:55 am »
I have read that too much water can be harmful. Glad your ok and get to continue the mess. I have been to Las Vegas several times but I have never been to Hawaii or California. I live in the Midwest, it's hot, sticky, and everything is big. From your yards to the steak you order...lol. Have you gotten any tests back yet about your viral load? Hopefully since they tweeked  your meds you will have less side effects. Glad your still on the treatment train....


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Cal

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  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #77 on: September 07, 2015, 08:37:18 pm »
Hi Scout,
Yes it was very harmful for me. I loved Las Vegas, but I didn't gamble, I just watched everyone and everything. Its sensory overload! What is your Capital city so I can look at the map. I don't get my VL until next Thursday when I see my specialist. I'll see him for my fibroscan 2 days, I don't know if he'll tell me then? Yes they've tweeked by Primary Aldosterone drugs and my ribas just for now. I am still feeling blah, but I've been in hospital I need to recover. Yes still on the treatment train. I'll be near death before I come off of that. This is my last chance. So it gets precedence.
You ok? Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #78 on: September 07, 2015, 10:58:10 pm »
cal, the protein drinks 3 times a day have helped me tremendously. I was starting to get a little tired, I am pretty sure the anemia was the root cause of that. I have also been making myself eat 3 times a day even though I really have no appetite. I am a manager at a large retail store and I average between 25,000 to 30,000 steps a day when I work. Being low on Iron along with work kind of kicked me in the ass, but now I seem to be back on track. I live in Kansas City Missouri. If you look it up on the map, look right in the middle of the United States. Good luck on your dr. visit, I bet you come out undetected. It took about 4 days to get my results from the time they took my blood. That was as kind of stressful just waiting for them.


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Cal

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  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #79 on: September 08, 2015, 12:19:06 am »
Hi Scout,
I am really pleased the shakes are giving you energy. It's hard to deal with anaemia, you just wanna lay down. You have an energetic job and need it.
I found Kansas City on the map. It's a big city with a big river going through it. Because my vision is still blurred from the sodium drop I couldn't see the name of the river.
These bloods are my 2 week ones , it would be a miracle if I was UND! But never say never. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #80 on: September 08, 2015, 12:32:37 am »
Cal, it's the Missouri River and yes it's very big. The city is large too, but I like it because it is very spread out. I have read people on here be undetected on their 2nd week test, that's just amazing. I wanted to ask you how you feel about these forums. I found that they really help me in several different ways. One is that people on here understand what I am going through. Unless you have this disease one cannot possibly understand what it is like. They can sympathize, but cannot truly understand what it's like having this beast on your shoulders. I also have found that I had been experiencing some self pity about why me? And how horrible my life is because of this disease. It made me realize how lucky I am that I am in much better health than I thought compared to a lot of people, and how grateful I am that I was able to get the medicine to cure this beast. It's nice to give and receive advice on even little things that I had no idea other people were experiencing also. It's been very therapeutic. Has being able to talk to people in the same situation helped you out stress wise?


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Cal

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  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #81 on: September 08, 2015, 06:19:42 am »
Oh Scout,
I agree, it's great to be amongst people who really understand you.  I feel at home here. Others without HCV cannot understand what we have gone  through and going through during tx. Thank goodness for these good people I am sincerely grateful.

 The support and information is priceless we are very lucky to have each other online. Cal :)
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

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  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #82 on: September 08, 2015, 06:21:55 am »
I woke up this morning feeling speedy. I know I read someone else was speedy on ribas? Did it last long and did it go away? Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

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  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #83 on: September 09, 2015, 03:38:19 am »
Hi all,
Just returned from GP. My sodium  has dropped again so 1 1/2 litres water a day and Aldosteronism meds cut by 2/3 let's hope that does it. Don't want to go to hospital again.
V/L  results from 9 mil to 54! Winner winner chicken dinner! :) today's bloods show LFTS have dropped a couple of points again. :)

Officially anaemic too.  8) I feel like I've joined an Elite club of RIBA takers.

Fibroscan tomorrow so more to report soon. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #84 on: September 09, 2015, 09:16:01 am »
Your viral count is looking great. Hang in there. Hope the anemia goes away. I am going to GP tomorrow to see how my anemia is doing. I have been slamming those protein drinks and eating better. We will see.


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Philadelphia

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  • It only looks like I know what I'm doing
Re: Cal on Vierkira Pak & Ribas
« Reply #85 on: September 09, 2015, 05:10:31 pm »
Congrats on the anaemia! It tells you your body is absorbing the riba! ;)
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 Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #86 on: September 09, 2015, 05:47:09 pm »
Hi Scout,
Yes Happy with viral count and that was the 2 week  one. It's 3 today, so one can only hope for................ (like Voldermort, cant say it :P)
Yes the anaemia is rotten. I feel my legs bowing and my heart rate is mental. As soon as I get off this fluid restriction I'll be back on my protein drinks, though they haven't helped thus far! I think though like Phily says that with Ribas its a good sign. I recall being anaemic in my first tx  too. Cant wait to hear what your  GP says about it. Cal :)
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

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  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #87 on: September 09, 2015, 05:47:56 pm »
Hi Phily,
Yep a sure sign! 8) Yuk! Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #88 on: September 09, 2015, 07:36:43 pm »
Cal me too....I am hoping she will run a crapload of tests so I can see where I am. My GP is really nice. I am taking my other test results from the hep doctor so she can see where I am at.  I am like a cow in a cattle line at the hep office, but my GP has been seeing me for years


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #89 on: September 10, 2015, 06:36:15 am »
Hi Scout,
It's so important to have a good GP when you're txing. My GP and specialist talk once to twice a week so she is really involved. Good luck with yours my friend. Cal :)
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Scoutdoy

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  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #90 on: September 10, 2015, 10:23:35 am »
Just got back from my GP...she is testing me for everything...lol...vitamin levels and a bunch of stuff. Jeez... They took 8 vials of blood....gotta love her. My children really like her too. It's nice to have someone you trust and who believes you when you say something is wrong. My best friends doctors don't even listen to her, unfortunately her insurance is lousy and doesn't have much of a choice on who will see her.

Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #91 on: September 10, 2015, 07:01:05 pm »
Hi Scout OMG! DO you have to have insurance just to see a GP???????? We have Medicare here. Anyone can  access a GP and it's up to the GP whether they "Bulk Bill" (charge the Government the recommended amount) or whether they want that and a bit more then you pay the gap.  Hope that makes sense. What a strange system you have?
Anyway she sounds good. Your Vit D may be low, it often is in Hep patients. I take Vit D and Zinc. Cal :)
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #92 on: September 10, 2015, 09:54:17 pm »
Cal, yes you need insurance to see a GP unless you want to pay cash. There are so many different kinds of insurance here in the states. It makes it very unfair to a lot of people. If you cannot afford insurance and don't make much money you can get Medicaid. It's government sponsored and I have heard and read horror stories about doctors not accepting it, and them not covering medications. I think a lot of people who have any kind of government sponsored insurance (including the VA) are getting denied hep c treatment saying they are not sick enough. I am lucky, I work for a large company and we have wonderful insurance. They covered my request for harvoni on the first request and honestly my liver numbers are really good. Even my doctors were surprised that they covered it for me. My GP will get all my tests covered by my insurance...she said it's all about how the doctors office codes it to the insurance. My best friend can't hardly get a basic blood test paid for because she has such lousy insurance. Here in the states it's all about the money!

Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #93 on: September 11, 2015, 12:27:31 am »
Hi Scout,
I see your liver numbers are really good on Harvoni. I am stunned about the Insurance. So it's about who you work for. Work provides insurance. So non workers do they have insurance? Can they buy it. I also have private insurance but that's about staying in a private hospital and getting your optometry, physio, dentist that kind of thing paid for. It's optional. But the public system us good and I was in a public hospital last week and it was fine. You get good care, just have to share a a room. My private hep Doctor came to see me there, they. Ross over. It's sad that Government medicals are denying tx to our brothers and sisters. It's equal access here. Mind you none of the orals have been passed by the Government yet. We are all waiting. They keep promising it will pass them. Meanwhile my HCV brothers and sisters are sourcing from India and China. Generics costing $900 and $3,500.00 respectively. Our HCV community as a whole has been treated dreadfully. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #94 on: September 11, 2015, 12:36:46 am »
Sorry about typing mistakes I still have blurred vision from low sodium last week. Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #95 on: September 11, 2015, 11:51:00 am »
Yes you can buy insurance if your job doesn't provide it...but it's pretty expensive. We have government sponsored insurance that will pick up part of the tab to help people get insurance, it goes by your income. That insurance. Everyone here is required to have insurance. It's a mess honestly. The kind of care you get is directly relevant to what kind of insurance you have. It's unfortunate, but it's true. My best friend is literally dying from this disease and she cannot get the medicine, and yet I got the medicine and I don't even have liver damage yet. Hope you are starting to feel better now with the side effects. You are on week 4 now aren't you?
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Philadelphia

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  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Cal on Vierkira Pak & Ribas
« Reply #96 on: September 11, 2015, 03:56:06 pm »
Here in Australia everyone has a level of cover. Health care is universally provided. Those who pay tax pay a Medicare levy of one or two percent of their income, in addition to the usual income tax.

This provides us with free access to public hospitals as a public patient, along with the in-hospital care required. It provides us with a heavily subsidised access to GPs and specialists. Some GPs only charge the amount they are reimbursed by the govt, others charge extra.

All medication goes through a process of assessment and evaluation to go on the PBS - pharmaceutival benefit scheme. If it is approved by the PBS and listed, we pay a minimal amount for it.

You can take up additional private insurance, which gives you access to private hospitals and the soecialist of your choice. It costs a varying amount depending on whether you are single if have a family and which level of cover you choose. My medium level private insurance for my family which covers my husband, children until they are 25 and me costs me $180 either a fortnight or a month, I forget. I don't really need it and frankly I'm not quite sure why I have it.
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 Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #97 on: September 11, 2015, 07:33:22 pm »
Hi Scout,
I really feel bad for you and your dying friend. I have 2 dying HCV friends as well who are past tx. It's not fair that your friend can be saved and insurance is not letting her. We have a substantial lobby group here for the meds to be listed on the PBS, thereby giving universal access, of which I participate. I have had my story, told from me and from my son printed in a book with other stories which has been presented to our Government to help the cause. I also did an interview on TV about access to the new drugs. We all do what we can. Do you have a strong lobby group there she could contact? Here we can also go to our local Member of Parliament  in offices near our home and ask for an audience to put our case across. Individually it won't help, but as a collective bombarding our MP's we hope to make a mark. We have been promised November for the PBS listing....we'll see. Meanwhile people get sicker and beyond tx or die. This hcv is so stigmatised, lots are terrified to be identified. Myself included. Is it the same over there?
Yes I am on Day 23 (but who's counting?), so 5 more days and I'm 1/3 of the way through. I am starting to feel a bit better thanks. My sodium is still low but it has stopped falling, so that's good. I am being monitored very well by my Specialist by having tests every second day, so I know what my LFT's are on a running basis! Not sure when we have another V/L. We are only allowed 4 a year (paid for by medicare) I've had 2 already. I'll find out when I see my specialist again on Thursday. Bit more energy though. Cal :)
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Cal on Vierkira Pak & Ribas
« Reply #98 on: September 11, 2015, 07:39:27 pm »
Hi Phily,
You explained our system really well. I don't seem to be able to string two words together right now >:(

I wonder why I have my private Insurance too. But you know the law of averages, if you cancel it, you'll need something done that has a 2 year public waiting list!

When did you get comfortable with the anaemia? I can't recall being anaemic last tx, but it was a nightmare from beginning to end :-\. I feel a little more energised this morning. I couldn't do anything for weakness and breathlessness and palpitations this last week. Cal :)
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Cal on Vierkira Pak & Ribas
« Reply #99 on: September 11, 2015, 10:47:57 pm »
Yes having hep c in the U.S. Is very stigmatized. It's like you have the plague or something. Even doctors and nurses sometimes treat you like your a drug addict or a whore who got this disease because of living a bad lifestyle. I did not get this from doing drugs...pretty sure it was from the military, but even if it was from drugs who cares?? I certainly don't think anyone deserves a disease that kills for any reason whatsoever. But that is how people get treated here, it's ignorance. I had a nurse ask me over and over  and over if I did drugs. I promptly called the state nursing board in our state and made a formal complaint. I also informed her that I hoped that if she had children that she didn't pass on to them her ignorance gene. I read an article about a guy (Jeffries I think) who was buying meds in India for citizens in Australia because the government won't pay for them for you guys. that's just a dam shame. My friend is too weak to work so she has state Medicaid...therefore she is considered to have insurance, so Giliad won't help, and Medicaid keeps denying her...if I can somehow get her the meds from India for 1,000.00 I am gonna try to get them for her. The way she is going downhill she won't make it waiting for the prices to go down here for sure.

Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

 


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