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6 years 8 months ago #3688

Hi Chejai,

When you get that fibroscan, make sure you fast for a few hours before.
Nobody told me that before my first one & the results were worryingly high,
when I had my next one about a year later, I didn't eat for hours before & the result was startlingly different, much less!!

So, just in case nobody tells you, not sure if the doc's have figured that out yet or not, maybe they warn the patients now, not sure.
Good luck anyway. :)
x


J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
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6 years 8 months ago #3696

All the best on your journey to wellness Chejai :)


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 #3868

Well, FINALLY I got to see my GP now that she has finally spoken to the Specialist. Essentially, this is what she said he told her -
1. there's no rush since I'm not 'severely' ill
2. why not WAIT for the PBS orals that the gov will approve in Feb 2016 (really???) and save $$
3. if i want to go ahead I have to see the Specialist; GP is not qualified to know about these medications, how to prescribe them or do the monitoring
4. I have to contact the RBWH clinic hep Nurse and discuss how to proceed

Again, I explained my frustration at being told in the past 5 yrs, I NEED treatment and not to put it off, I should get ready for the 'new drugs on their way' that will be available on PBS. I haven't had a Fibroscan since early 2013 so who knows the condition of my liver, ok I'm not 'severe' or 'dying' but I'm fed up with being told to 'wait' while also being told 'not to put it off'. I've only been with this GP a few months so she really doesn't know me or my history. From the look on her face yesterday I don't really think she gets it.

So, now a call to the clinic and see what the nurse says.....ahhhh :angry:


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 #3872

Hey Chejai,

Sorry you've come up against another dead-end with your GP & the specialist...its the same thing so many of us were told, same old broken record.

Yeah I might not be "severely ill" either, but who wants to wait until they have sickened to that point? when surely its goitta be easier to be cured before that stage. It just does your head in, doesn't it :pinch:

As for 'Feb', on the hepaustralasia boards they're saying 'May' now - and who knows how much longer? Doubt the Govt is going to beat Gilead down to a price cheaper than 50K and then it will be triaged...and those not "severely ill" like you and me will be at the end of a bloody long queue.

Of course certain specialists will want to talk up the idea that only they are capable of prescribing & monitoring people...where's the power in their status otherwise? but I doubt any GP in the country is going to be as experienced and knowlegable as Dr James. Find somewhere you can get a fibroscan, get your stats and get onto the doc...take the power back from those who would prevent you from having control over your own health.

To that end, I got the magic parcel from the postie this morning - incredible to think how much $ those two seemingly innocuous bottles represent! I feel so fortunate and grateful to all concerned, especially to members here and Dr J for his tireless efforts to help us all beat this scourge. Can't wait tor January and the trial start (and I thought I was impatient before) :)


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 #3887

I can well understand your frustration Chejai. I went private re the Fibroscan/Liver scan.I had to wait a fortnight to have it done. It cost 189$ and I got 94$ back on Medicare. The blood work cost nothing,it was bulk billed. It may help if you printed out the GP Cheat Sheet and show it to your GP if you decide to go back to her.Personally I think Zhuk advice is good. Make a appointment with GP2U and take it from there. Who knows when the new antivirals will be available on the PBS.
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 #3889

How did you get a private Fibroscan? Did you have to see a private specialist first? Or can you just request one somehow? Seeing the specialist costs money on top of any charge for the scan. And then you have to deal with whatever their agenda is. There's no doubt the big step from GP to specialist is mined with booby traps and snafus.
My GP referred me to a specialist who he said did Fibroscans, but its looking likely I'll have to wait a year to see him public. It's probably a pipe dream getting scanned any time before early next year even if I pay for it, which is frustrating.
Everything is an uphill battle when you try and take charge of your own health. Even getting copies of your own test results is resisted. I suspect they are worried about future liability when you consider what a disaster Hep C treatment has been in the past.


F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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6 years 8 months ago #3896

Hi Flying Fox
That's a good question re Fibroscans. I went to a Specialist who referred me to a Radiology Practice.The Specialist was expensive. There are other ways to find out the level of Fibrosis. Dr Freeman has a thread Fibroscan v Hepascore. A hepascore is a blood test which can measure the level of Fibrosis. You need to know your level of Fibrosis so length of Tx and Riba can be determined. I gather from reading the thread Fibroscan machines are thin on the ground. I live in Tassie,population 500,000 roughly and there is one machine. I had to drive 220 km to Hobart for it. The thread is on page 2 and in the Experts Corner. It may be easier to just go through with GP2U
It's absolutely disgraceful the run around involved and the hoops some people are made to go through by certain members of the Medical profession. It's worth it though. Hope this is of some use. 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 #3898

Thanks neilo,
i read about the Hepascore thing. That's why I've been trying to get copies of all my blood tests. Very tempting to jump ship on that whole shower of bastards lol. Its quite likely I will end up at GP2U.


F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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6 years 8 months ago #3899

Reading Greg Jefferys blog he is really scathing about Brisbane specialists:
See entry for Nov 20
hepatitisctreatment.homestead.com/generic-indian-harvoni.html
"I believe that Brisbane's " Liver Specialist Hierarchy" is dominated by a bunch of ego maniacs who feel threatened by the fact that patients who they have failed to heal are going and healing themselves outside of the "system". Getting results where the "specialists" could not.
These people are control freaks, bloated on their own self importance and they can not cope with the idea that people are taking control of their health, of their own lives and getting results!"
Oh dear ._.
Still a big country town at heart.


F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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6 years 8 months ago #4045

zhuk wrote:

Hey Chejai,

Sorry you've come up against another dead-end with your GP & the specialist...its the same thing so many of us were told, same old broken record.

Yeah I might not be "severely ill" either, but who wants to wait until they have sickened to that point? when surely its goitta be easier to be cured before that stage. It just does your head in, doesn't it :pinch:

As for 'Feb', on the hepaustralasia boards they're saying 'May' now - and who knows how much longer? Doubt the Govt is going to beat Gilead down to a price cheaper than 50K and then it will be triaged...and those not "severely ill" like you and me will be at the end of a bloody long queue.

Of course certain specialists will want to talk up the idea that only they are capable of prescribing & monitoring people...where's the power in their status otherwise? but I doubt any GP in the country is going to be as experienced and knowlegable as Dr James. Find somewhere you can get a fibroscan, get your stats and get onto the doc...take the power back from those who would prevent you from having control over your own health.

To that end, I got the magic parcel from the postie this morning - incredible to think how much $ those two seemingly innocuous bottles represent! I feel so fortunate and grateful to all concerned, especially to members here and Dr J for his tireless efforts to help us all beat this scourge. Can't wait tor January and the trial start (and I thought I was impatient before) :)

Hey ZHUK - Great News you got your parcel - Why is January your 'trial start'?
I tried printing off the GP Cheat Sheet - It cuts off the whole right side margin and made no sense. I tried to export it as a pdf file and the same deal even though that's how i got a copy for my brother - so go figure?
I told her about this info sheet but it was very clear she didn't want any part of it. I suspect the Specialist has put her off - as you say they want to maintain the power. She asked if I wanted to be referred to him privately to get things going but suspected it would be too costly.
I did tell her that the PBS thing is looking much later than Feb '16 and she did admit that even when things like that do go through it doesn't mean automatic access. So, when I finished my rant - I wasn't in a good mood :angry: - I got the impression she understood why I wanted to do this and stop the endless waiting.

I wanted to do this before I entered my last Specialist appointment at the RBWH in October - I'd been reading Greg Jefferys' Blog. The Specialist said that was great but he knew of a better way of 'importing' and showed me his phone with the Fixhepc website - told me to go home research it and get back to him and he would send a letter advising my GP of this.
Turned out the whole 'getting back to him' has been the problem, weeks before my GP could finally speak to him BUT I'm not allowed to, no not the lowly patient. I have to wait until next year to see him publicly or pay privately!!

The only place in Brisbane to get the Fibroscan is a Private Hospital clinic - you need a Specialist's referral, especially for any medicare rebate. I paid $250 in early 2013 and don't even remember if/what medicare rebated.

I've been deeply depressed this week, I'm exhausted from all the endless back and forth BS and having to justify and repeat myself every step of the way. I've had this for 34 years and dealt with so many DR's /Specialists along the way. I'm so tired and want to crawl into a hole and give up. BUT, I have this beautiful little boy, 10 yrs old completely dependent on me and I want to be well, not just for me, but for him.
I homeschool him as he has ASD and my plan had been to start in January and get the tx underway, in case i get ill from side effects, before our 'learning journey' gets heavy.
Anyway, I will call the RBWH clinic to speak the Hep Nurse today (I put it off for a few days I just wasn't up to it) and see how I go about getting the Fibroscan referral and the script. If I at least get the Fibroscan I could go the GP2U route with Dr James as Neilo and Flyingfox66 have discussed.
Fingers crossed i don't hit another roadblock:(

Again, great news you're ready to start - looking forward to following your progress Zhuk:)


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 #4051

Hey Chejai,

Damn, what a runaround...I don't blame you it must be exhausting and bloody frustrating, on top of everything else you have to cope with. It wouldn't surprise me either if your GP has been "warned off", esp if Brisbane specialists are the type of 'old boys club' which Greg Jeffreys has described :pinch:

Can you organise the blood tests to work out a Hepascore, as Dr J has suggested? Might be a viable replacement for the fibroscan, then you could go straight to GP2U and cut out all these refractory middlemen?

http://fixhepc.com/forum/experts-corner/362-fibroscans-vs-hepascores.html

See how your GP responds, it shouldn't be too difficult just to get bloods for that (fingers crossed)

Thanks for all the well-wishes mate :) Dr James has posted the Redemption trial timeslines as Jan > March, so I'm attempting to be patient until then heh.


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 #4054

Hi Zhuk, very exciting news that your meds have arrived - good luck with being a patient patient for another month. I couldn't do it! :lol:


NSW Australia. Genotype 1b 30+ years, F0-F1, VL 91,000 Feb 2015 (740,000 in 2010), Tx naive.
Ordered Sof/Dac from Buyers Club 21 Sept, received 14 Oct.
Virus UNDETECTED at 3 weeks AND 12 weeks (EOT) AND SVR4 AND SVR12 AND SVR24. :-)
A thousand thankyous to Dr James and the amazing FixHepC team.

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6 years 8 months ago #4056

Hi Chejai,

You must be so weary from running into brick walls but hang in there - you've come this far and you're nearly there.
Zhuk's suggestion about the Hepascore is a good one as it does seem to be an easier way to get what you need.

We're all in this fight together. xx


G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...
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6 years 8 months ago #4058

Thanks Joy! Ha I know...I've already gone and checked up on them a couple of times, just to kill the "Dreaming? No I'm not dreaming" feeling :P lol

Seeing one of the RPA nurses tomorrow, get the pre-tx bloods taken go over my other medications re contraindications etc. I have also been taking milk thistle for some years, so probably better to allow a bit of breathing space on that before treatment as well. All good :)


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 #4060

Hi Zhuk, I took Milk Thistle on and off for years (also recommended by the liver specialist) but stopped when I started Tx, along with vitamin supplements.

No you're not dreaming. Hep C free-dom on the horizon.


NSW Australia. Genotype 1b 30+ years, F0-F1, VL 91,000 Feb 2015 (740,000 in 2010), Tx naive.
Ordered Sof/Dac from Buyers Club 21 Sept, received 14 Oct.
Virus UNDETECTED at 3 weeks AND 12 weeks (EOT) AND SVR4 AND SVR12 AND SVR24. :-)
A thousand thankyous to Dr James and the amazing FixHepC team.
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