Help needed to initiate treatment.

This topic has 18 replies, 9 voices, and was last updated 8 years, 6 months ago by Ariel.

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20 March 2016 at 1:06 pm #14266
thetoxickiwi
- Topics: 1
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- Novice
@thetoxickiwi
Hi all.
I need some “Expert” advise with regards to how I go about getting treatment started.
I’m at the point where I’m able to order my 1st 12weeks supply of meds.
I am a 50yr old male, live in NZ and have HCV Genotype 1A.
I’m classed as a responder / relapser from a past 48week treatment of Pegulated Interferon & Riavirin.
December 2013 Fibroscan has shown fibrosis at F4.
I now have cirrhosis.

Working my way through the “HCV Decision Support Tool” I am unsure what to check on the “Guidelines” options section.
It has “Peg/Riba free” already selected but I may need Ribavirin as part of my treatment.

I believe I will need a 24week treatment and am wondering if I can pay for 1st 12 weeks now & pay for the 2nd 12 weeks before completeing the 1st 12weeks of treatment. Reason I ask is because I am a beneficiary so it takes a while to save $$ but I need to get started ASAP.

Do I have to download the authorization form, print it out, complete it, scan it and then email it.
My GP is prepared to write a prescription and has asked me to get information for him to help with this.
What should the doctors prescription form say on it regarding what medication, quantity etc.
Does his prescription need to be scanned and emailed or do I send the actual script to the Buyers Club?

I am having a liver ultrasound done on 24th March, 2016.
Should I wait for the public health system liver specialist to send scan results to my GP before initiating treatment (unsure how long this will take) or should I proceed now?

Thanks very much for help with these queries.
20 March 2016 at 1:33 pm #14267
Chapel
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- Guardian Angel
@chapel
Hi Toxic,
I am not an expert but can help with some of your questions; In the Guidelines, you just deselect Peg/Riba and choose one of the others, say Australian or European.
With documents, I printed the authorisation and faxed it.
With the prescription from your doctor,an emailed scanned copy will be fine I think.
As to the prescription wording, I will leave that for a doctor. I have mine for generic harvoni whch I would be happy to email you if that would be helpful.

M, 57, Live in Wellington,NZ.
Genotype 1a diagnosed in 2013.
Treating for the first time since October 31 with Buyers Club Sof/Led. Thanks so much guys. Minimal side effects apart from sore throat at the start..
Viral load 5.4m when treatment started, Undetected at 4 weeks, 8 weeks, End of Treatment and 12-weeks post EOT. Yay!
20 March 2016 at 1:42 pm #14268
thetoxickiwi
- Topics: 1
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- Novice
@thetoxickiwi
Hi Chapel,

Thanks for your input.
I have sent you a private message with my email address.

Regards
Andrew
20 March 2016 at 2:10 pm #14269
Gaj
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- Guardian Angel
@gaj
Hi and welcome,

As Chapel says, but in a bit more detail:

Put in GT 1a
F4
Failed Interferon Riba
No to Harvoni CI (assuming you don’t meet any of listed conditions/meds)
Aust guidelines
Then your numbers for platelets, weight, eGFR

Calculate

Scroll down and press [Show Trials]

You can then change the guidelines to see what EASL/AASLD say in their guidelines.

Your options for meds will most likely be Sofosbuvir, Ledipasvir, Daclatasvir and Ribavirin so focus on the best percentage options for those across the various recommendations and trials that inform them. Most likely it will be Sof/Led (Harvoni) for 24 weeks +riba.

Script should be for 12 weeks/84 days with “one repeat” assuming the recommendation is for 24 weeks. I believe you should still be able to pay for the repeat when you need it to be shipped but check with help@fixhepc.com

Was the U/S scan just a routine check up? I suspect your GP will get the U/S results pretty quickly and well before you get the meds anyway but would wait till he has it to actually commence treatment.

G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
20 March 2016 at 4:36 pm #14274
Dr James
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- Guardian Angel
@fixhepc
I am a 50yr old male, live in NZ and have HCV Genotype 1A.
I’m classed as a responder / relapser from a past 48week treatment of Pegulated Interferon & Riavirin.
December 2013 Fibroscan has shown fibrosis at F4.
I now have cirrhosis.

12 weeks Harvoni gives you a 94% SVR (the past failure has more impact than the cirrhosis). If your platelets are > 100 and you’re up for it 12 weeks with Riba moves that up to 96% but you will need monitoring every 2 weeks for the expected anaemia, etc. 24 weeks without Riba should deliver 99% odds.

If money was no object doing a full 24 weeks without Riba would be the gold class option, but 94-96% odds are still pretty good.

Sofosbuvir Ledipasvir

NAIVE
default: svr: 97%, trials: ION-1 98% (142/145) ION-3 96% 96% (165/172) Aggregate 96.8% (307/317)
gt1a: default: svr: 97%, trials: ION-1 98% (142/145) ION-3 96% 96% (165/172) Aggregate 96.8% (307/317)
gt1b: default: svr: 99%, trials: ION-1 100% (67/67) ION-3 98% (43/44) Aggregate 99.1% (110/111)
F4
default: svr: 97%, trials: ION-1 97% (32/33)
w12: svr: 97%, trials: ION-1 97% (32/33)
w12riba: svr: 100%, trials: ION-1 100% (33/33)
w24: svr: 97%, trials: ION-1 97% (31/32)
w24riba: svr: 100%, trials: ION-1 100% (36/36)
FAIL
default: svr: 94%, trials: ION-3 94% (102/109)
w12: svr: 94%, trials: ION-3 94% (102/109)
w12riba: svr: 96%, trials: ION-3 96% (107/111)
w24: svr: 99%, trials: ION-3 99% (108/109)
w24riba: svr: 99%, trials: ION-3 99% (110/111)

YMMV
20 March 2016 at 4:41 pm #14276
thetoxickiwi
- Topics: 1
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- Total: 7
- Novice
@thetoxickiwi
Hi Gaj,

Thanks for clarification.
My upcoming Ultrasound is routine monitoring.

Regards
Andrew
20 March 2016 at 4:56 pm #14277
thetoxickiwi
- Topics: 1
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- Novice
@thetoxickiwi
Hi Doctor Freeman

Thanks very much for your reply, it is exactly the sort of treatment advice I was looking for.
24weeks of generic Harvoni it is then.
At Buyers Club prices money is no barrier to treatment, especially when its my life at stake.
My gastro specialist recently told me treatment may become available through the NZ public health system in 2 years but I cant wait for that to happen.

Thanks again
Andrew
20 March 2016 at 5:07 pm #14279
Dr James
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- Guardian Angel
@fixhepc
You are welcome. At F4 waiting is not a great plan – we are running out of wiggle room.

YMMV
24 March 2016 at 8:27 am #14399
thetoxickiwi
- Topics: 1
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- Novice
@thetoxickiwi
Just a quick update,
All Paperwork has been completed and forwarded to MonkMed & FixHepC
The overseas Doctor rang me this morning.
I have completed the bank transfer of payment to FixHepC.
Now the waiting for delivery begins.

Many thanks to the people that helped me understand & complete the process.
24 March 2016 at 12:13 pm #14407
Dr James
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- Guardian Angel
@fixhepc
All the very best for your treatment…you are certainly in good hands.

YMMV
25 March 2016 at 5:18 am #14434
zhuk
- Topics: 5
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- Guardian Angel
@zhuk
It won’t be long, kiwi (thoughI know it seems like it takes a few years lol)

Definitely you can’t wait for Pharmac to move on the new meds, good on you for seeking Dr James out.

You will be on the road to UND, as so many of us have travelled before you. All the best

GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 – 6 weeks UNDETECTED
AST 26
ALT 26
25 March 2016 at 2:42 pm #14461
Tina-Hill-facebook
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- Guardian Angel
@tina-hill-facebook
Hi TK

Congrats on getting treatment you have done the right thing…and I really dont think Pharmac is any closer to making DAA treatment available in NZ in the near future….I waited 5 years and after that length of time I was over it and didn’t want to become any more ill than I was.

Best decision I made and haven’t looked back since Thats great the process has been straight forward and your meds are not far away. Wishing you the best for a hep c free future.

SVR 24
15 April 2016 at 7:12 am #15508
thetoxickiwi
- Topics: 1
- Replies: 6
- Total: 7
- Novice
@thetoxickiwi
Quick update.
Everything has fallen into place quickly and easily.
Meds have arrived for the first 3 months.
Had routine liver ultrasound scan done, no changes since previous scan done 08/2015.
Pre-treatment baseline Liver Function and Viral load bloods done. Should have results next week.
I’ll start on the meds this weekend.
Will post my bloods results when I get them.

Cheers
Andrew
15 April 2016 at 7:52 am #15514
Gaj
- Topics: 29
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- Guardian Angel
@gaj
Hi Andrew, great to hear that another Kiwi’s on their way!

Looking forward to hearing your progress.

G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
8 June 2016 at 7:40 am #18658
thetoxickiwi
- Topics: 1
- Replies: 6
- Total: 7
- Novice
@thetoxickiwi
Have added pre-treatment bloods and week 4 bloods results to my signature. Everything is looking great so far.
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