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6 years 8 months ago #4280

Hey Chejai, hope you get some movement on the fibroscan possibility, or if not arrange for your bloods re the Hepascore route. It does sound likely that your specialist was merely in PYA-mode, considering they were so well disposed to the idea initially. Fingers crossed its a bit smoother sailing for you from here on :)

And as for the trials...me, impatient? :whistle: Lol


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
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6 years 8 months ago #4422

Well, now I finally got to talk to the Clinic Hep nurse - that the Specialist told my GP for me to contact if I wanted to proceed with the generics - and I'm more confused than ever!

I gave her the whole rundown of what's happened since my last visit there. She knows of this club and people getting tx but no other details, hasn't actually been on the site. She wanted to know WHY was I calling her? She didn't know what she was supposed to do and the Specialist hadn't spoken to her about my case. I asked if she could arrange a Fibroscan - she wanted to know why I needed that, was it a requirement to buy from the Club? I told her it was to see if I had cirrhosis because tx was different re the script. She wanted to know how 'recent' the results needed to be, since I had one in March 2013 - score of 4.7 - my liver was obviously fine and couldn't possibly change that significantly in that time. If it had of been an 8-9+ then yes, it would be advised. I told her that the Specialist who did the Fibroscan told me it was a good score BUT 'a lot can happen in 2 yrs given your age and length of infection.'

She told me it was looking good for the generics to be available 'early 2016' but that the Specialists/Dr's would know by the end of December what the plan is - will GP's be able to write scripts, will there be priority listing etc. So, she suggested waiting to find out! I told her I'm sick of being told to 'wait'! Why was the Specialist insistent I don't put it off? He even said he didn't believe the Gov were going to put it on PBS.

Then it got interesting because what she did say was, 'I believe everything your saying... I've been in the clinic and heard these things said. The problem is ...let me put it this way, he doesn't always follow through with what he says. I can tell you this - there has not been ONE script written for these drugs from this Clinic!!'

She suggested, 'I would imagine, ideally for you, given your location and situation with your son, that we get the script written and sent to you and you can go through this club and your GP should be able to monitor you. We'd see you at some point during your tx. But, how does he even know how to write the script? Which medication/dosage?'
I told her the info was on the site.

Since he is only there on Fridays, she said she would speak to him and call me when he's in the room.

So, now I 'wait' until Friday. Looking more and more like I will have to do the GP2U route...

Does anyone know if the GP2U process requires a Fibroscan more recent than 2013, or probably just the bloods to calculate the Hepascore?


QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec '15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb'16 VL UND #woohoo!
AST 24
ALT 26
GGT 50H

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6 years 8 months ago #4428

Seriously Chejai I feel like /headdesking on your behalf! :pinch:

Really mate you've shown the utmost patience but it sounds like you're hitting roadblack after roadblock with the clinic. Yes the specialist is talking the talk but it seems that he is not prepared to walk it...no contact with the nurse about your case. And for all the candidness of the nurse, I can't see how she can suggest that "nothing could have happened in 2 years" if you haven't had a fibroscan. How could she know otherwise? :unsure:

At this point I would just sign up with GP2U and go the Hepascore route to get current results...then Dr James can write your script, and get the ball rolling. Finally!


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
Last Edit: 6 years 8 months ago by zhuk.
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6 years 8 months ago #4430

Beautifully put Zhuk - 'headdesking' - that's exactly how I felt afterwards and still today, lol.

I too was shocked that she didn't think there could be any change in my liver. My LFT's always elevated, sometimes 2-5 x the max range. I'm on a range of medications and i do drink wine. Yes I know I shouldn't drink at all!!!! I try but I'm still working on my coping strategies with anxiety. :S

Yes, I have been too patient ahhhhh I was trying to save $$ being bulk-billed for visits and blood tests - thinking it would have been simple - the way he put it initially!
I'm in the middle of my son's assessment/report writing for homeschooling this week, I can wait until Friday. I'm quite sure the nurse will be frank with me if he's back-pedalling. Either a script done then or a Green light for me to GP2U.


QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec '15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb'16 VL UND #woohoo!
AST 24
ALT 26
GGT 50H

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6 years 8 months ago #4435

Gotta say even wiith a personal positive experience at RPA, my specialist explained they couldn't write a script for me so wouldn't be surprised if your rather more obstructionist doc won't either, Chej. I'd guess that is some kind of political directive from above, as my doctor seemed quite apologetic.

It's an academic question in any case - we are very fortunate to have online access to Dr James.


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
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6 years 8 months ago #4437

Agree zhuk,

My specialist, who I saw at my clinic, went to great pains to explain clearly to me that he was writing me his own "private script" and it definitely was not a clinic script even though he wouldn't charge me for it. Sadly all part of the comically grotesque game being played out in the theatre of hepatology at the moment.


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
:cheer: :cheer: :cheer:
Last Edit: 6 years 8 months ago by Gaj.
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6 years 8 months ago #4438

Hi Chejai
Chejai you must have the patience of a Saint. If you don't get any further on Friday, I'd give myself a early Xmas Present and and go through GP2U. You surely deserve it after the run around you've had to put up with. Let us know how you get on.
All the best :)


G1 Had since 1979-80?? Started Sof/Dac through Buyers Club on 5/11/15 Liver biopsy done 2005 and 2010 both F1. Fibroscan done 19/10/15 F0.
Week 4 viral load UND and Bloods normal
Finished Tx on 27/1/16. Bloods normal.
Week 6 SVR 10/3/16 UND Bloods normal.
Week 12 SVR 21/4/16 UND Bloods normal
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6 years 8 months ago #4478

Fibroscan from 2 years ago is encouraging and we can do a hepascore to confirm you are/are not cirrhotic.

Happy to help if needs be or talk to your GP about it.


YMMV
Last Edit: 6 years 8 months ago by DrJames.
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6 years 8 months ago #4555

Thank you all for your encouragement. I think you're right come Friday if they call at all it won't be getting the ball rolling at all, it will be more promises and told to 'wait'. Personality flaw of mine that I do persevere even when the writing is on the wall very clearly regarding negative outcomes. Nevertheless, that same perseverance has saved me and gotten me through some dark times.

Dr James has said here that he can work with a Hepascore since my Fibroscan from 2013 was good.

Ok, so how do I use GP2U to get Dr James Freeman personally and not another Telehealth DR?
Also, do I need to setup Skype?

Completely off-topic - why do my posts have a pink highlighted 'EDIT' button in corner long after I've posted? I kept thinking I'd made mistakes but surely the program wouldn't be that pedantic ;)

Appreciate anyone's advice.
So glad I found this site everyone is so supportive.


QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec '15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb'16 VL UND #woohoo!
AST 24
ALT 26
GGT 50H

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6 years 8 months ago #4565

Hi, just joined this forum and am really eager to start on treatment after a friend directed me here. Heard last night his VL is Und after 4 weeks.
I've probably had HepC since the 70s or 80s but not detected until early 90s. Had several visits to Dr. Desmond at St.Vincents liver clinic in Melbourne. I don't recall my VL but had fibroscan and he said scarring was present but not severe. I have Gt1a.
Will be seeing my GP tomorrow who has been ok with monitoring LFTs. I'm hoping he will give me copies of the fibroscan and other tests from StV as he was sent some after the first visit before fibroscan. It is very unlikely he will prescribe for me though.
Also trying to contact my old GP who originally diagnosed HCV and was very supportive and will try to convince him to prescribe. Not able to get appointment at StV again till Feb but that's too far away.
Have been living with many strange symptoms for many years that I put down to many causes. Originally thought some were side effects or withdrawal symptoms of heroin/methodone/paroxetine use but have not touched any of that for nearly 10 years. Also some symptoms consistent with depression/anxiety so it's been frustrating. I now see much of it could be mainly hepC symptoms. They also have been seriously worse since I spent 8 days in hospital in June with dengue fever.

My most viable treatment looks to be Harvoni. So my questions at the moment are -
- what test results do I need to have for the prescribing doctor?
- does buyers club deal with Harvoni or do I need Sofosbuvir + Ledipasvir separately prescribed?

If I have no joy with my local GPs I will be contacting GP2U on Friday.

Cheers all! Still living life but it's a battle sometimes. ;)


M 61yo HCV+ ~ 30 yrs Gt1a F2 VL 223,000 ALT 54 AST 42 Tx start Sof/Dac 17Dec15.
SVR4 at 7Apr16 ALT 22 AST 22
SVR12 at 9Jun16 ALT 23 AST 25
Melbourne, Australia
Last Edit: 6 years 8 months ago by sonix.
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6 years 8 months ago #4568

Hi, your prescribing doctor will need to know your genotype, whether you have treated before, your level of fibrosis and any other drugs you might be taking.

When I got my drugs through here, sofosbuvir and ledipasvir were supplied in separate capsules and as far as I know they still are, although there are many combo generics also available. Harvoni is the official name for Gilead's mixture.

So your script needs to read something like this:
``Sofosbuvir Powder 400mg, 1 oral daily, quantity 36g, no repeats
Ledipasvir Powder, 90mg, 1 oral daily, quantity 8.1g, no repeats.'

See also GP cheat sheet under `Forum'


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!

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6 years 8 months ago #4569

sonix wrote:

Hi, just joined this forum and am really eager to start on treatment after a friend directed me here.

Hi Sonix and welcome to Fixhepc.com all the information you require is on the website.

fixhepc.com/getting-treated/how-to-do-it/buyers-club.html

These are what is required from your Doctor if he is writing the script.

You should ask for (this is 12 weeks treatment)

Sofosbuvir 400 mg od x 84
Dalcatasvir 60 mg od x 84

OR (Harvoni generic components)

Sofosbuvir 400 mg od x 84
Ledipasvir 90 mg od x 84

If you need 24 weeks ask for the same as above + 1 repeat

If you need Riba you need 1000 mg daily if < 75 kg and 1200 mg daily if > 75 kg

Ribavirin 1000 mg daily in 2 divided doses x 84 days
Ribavirin 1200 mg daily in 2 divided doses x 84 days


You can get the script and download the authorisation agreement
fixhepc.com/images/forms/BuyersClub.pdf

Have a good read through the site to inform yourself og the options available.

cheers


Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
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6 years 8 months ago #4570

Hi sonix, welcome to the forum.


Paul has set you on the right track with the basics; armed with your test results/fibroscan score you will be able to be advised which of the meds is best suited. When I had my online consult with Dr James I had initially thought as a G1a I'd be going for a Sof/led combo but the doc explained that sof/daclatasvir is just as efficacious, and with a higher logkill ratio. He will be able to sort you out and give you the script, so no need to worry if your GP isn't amenable.

Hear you on not being able to work out what are hep C symptoms and what might be other issues...particularly if you've been prescribed paroxetine in the past, can have a nasty withdrawl profile. I'll be interested to see if treatment improves my pain level; I've had chronic pain for 14 years and I never really know how much of it actually is that, or the hep :P


Hey Chejai :) For my GP2U appt I didn't use skype, if you have Chrome browser that works fine. My appt was arranged with via phone, but if you check out the site you will see Dr J's available slots.


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
Last Edit: 6 years 8 months ago by zhuk.
The following user(s) said Thank You: Paul-Jarman-facebook, Chejai, honker

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6 years 8 months ago #4572

Hi,
You can go to gp2u.com.au and check for appointment with Dr. James Freeman.

All the best!

HP


Nishkama Karma
Cùng nhau loại bỏ Viêm gan C trên khắp thế giới!
The following user(s) said Thank You: Paul-Jarman-facebook, Chejai

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6 years 8 months ago #4581

Can anyone help with GP2U? I registered and downloaded the iPad app-froze on video demo, so got nothing there. I went to Book Appointments and there's no Dr James Freeman. I type in his name to search and says '0 Matches'.

So, how do I book with him?


QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec '15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb'16 VL UND #woohoo!
AST 24
ALT 26
GGT 50H

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