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New member Intro 4 years 3 weeks ago #3010

  • Chejai
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I just want to say hi and introduce myself. I'm a 52 yo female and have had chronic HCV G3a for 34 yrs, Fibroscan 2 1/2 yrs ago put me in F0-F1. Never had treatment. I've been a public outpatient in a Liver Clinic in a Brisbane Hospital past couple of years. I didn't qualify for Interferon treatment and wouldn't have done it if i did! My Specialists change regularly and Thank God for my last one because the one I had for a few visits had Very Strong Religious Views re the HepC patients he was seeing. He lectured me on our disgusting western lifestyles and how appalling we all were. I cried my eyes out the whole time. He'd decided he couldn't watch this anymore and transferred to another area. I had heard about Greg Jefferys and was reading his biog, gathering info for my recent visit down there. This new Dr was Great and after years of being told to 'wait it out' I finally had someone tell me Don't Wait Any Longer! My brother has the same as me BUT he has cirrhosis. The Dr gave me the info on this website, told me to research it and if I wanted to proceed he would provide script and monitor me, along with my GP.
I'm planning on the Sofusbuvir + Daclatasvir combo. I'm waiting to get appointment to organise this. He'd said before I would likely need 24 weeks rather than 12 of treatment - not sure Why?
My brother has been trying to get into a clinic where he is in NSW but he's waited all year. I'm sending him info about this Club and hoping his GP can help him. I feel very inspired and motivated by all the stories I'm reading on here and hope that my journey will be a success too. I'm sick of living with this virus and fed up with being judged :angry: Thank you and Good Luck to you all :)
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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New member Intro 4 years 3 weeks ago #3017

  • coral
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Hi Chejai,
Welcome! I have had the virus (G1a, F2-3) for about the same length of time as you and started my Sofusbuvir + Ledipasvir treatment 6 days ago. All is going well so far with no detectable side effects. So sorry you had such a bad experience with the specialist but well done with perservering to find the ones who can work with you not against you. I have also had a lot of trouble finding medical support in the past. Following the recent publicity I made an appointment with the wonderful Dr James Freeman at GP2U, ordered the generics through the Buyers Club and 4 weeks later I started my treatment. I know I am in safe hands.

There is a way forward for your brother as well.. Good luck to you both. Let us know how you are travelling.

Coral
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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New member Intro 4 years 3 weeks ago #3019

  • DrJames
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With F0/1 the guidelines suggest 12 weeks is sufficient.

The 12/24 week decision hinges on the presence of cirrhosis. No cirrhosis 12 weeks. Cirrhosis -> 24 weeks

Here are the guidelines: fixhepc.com/getting-treated/genotype-spe...-hepc-treaments.html
YMMV
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New member Intro 4 years 3 weeks ago #3093

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Thank you James Freeman, once i returned from that appointment i looked up this site and read that article and hence decided on the Sof + Dac treatment - noted it did say 12 weeks was recommended. I'm waiting to get back in to see my GP because she wanted to call the Specialist and discuss things with him. I was hoping she could write the script so that I don't have to travel to Brisbane - it's a big hassle a whole day, bus journey lots and lots of sitting around and putting my son in Respite Care :( I'll know within a week anyway.
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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New member Intro 4 years 3 weeks ago #3098

  • Chejai
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Thanks Coral, so what is the GP2U you mentioned re Dr Freeman? I feel like I've spotted it written somewhere else but can't remember.
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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New member Intro 4 years 3 weeks ago #3103

  • CJ
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Hi Chejai,

Just read your story & am disgusted at the treatment you got from that specialist, what a creep, how dare he treat you like that.
You'll find Dr James the complete opposite, he's very compassionate & kind
.
I don't know why people like your past specialist choose to work in this field if they have those opinions.They should be wanting to help people instead of putting them down. :(

Anyway, glad you're on the right road now, you'll find the generics very easy to get through.
Soon you'll be free of the virus :cheer:

Love Cindi 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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New member Intro 4 years 3 weeks ago #3105

  • Joy
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Hello Chejai and welcome.

To have an online consultation go to gp2u.com.au.

Dr James is not always available but there are other doctors and this is a very fast and easy way to get a script - no bus or respite care required!

All the best with taking the first step and the treatment to follow...
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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New member Intro 4 years 3 weeks ago #3131

  • coral
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Hi Chejai,

I am just catching up with the forum messages. Joy has provided the contact for GP2U. It was the first time I had tried a consultation by skype but it works really well. After the consultation Dr James forwarded the referral for a blood test and a script for the generics on the site which I printed and organised the same day. Very smooth.

Please ask away if you have any questions. Someone in this forum will know the answer!

Cheers

Coral
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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New member Intro 4 years 3 weeks ago #3153

  • Chejai
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Thanks to Joy and you Coral for that info. I spoke to my Medical Centre yesterday, my GP has been off this week, so I don't know if she has contacted the Specialist in Brisbane yet to find out if he can send the script or if she can write it herself. I now have to wait until next week to see her. This GP2U option sounds interesting - what does it cost? It might be a way for my brother to do this. I've sent him the genotype treatment article and other sections from this website to take to his GP because he's fed up waiting to get into the Liver Clinic down there. He has cirrhosis and is not well at all but really wants to do this.
I'm relieved to have Dr Freeman say I will only require 12 weeks instead of the 24 my Specialist had thought. I've been reading the posts on Sof + Dac side effects to get an idea what I might be in for. I have to plan my son's homeschooling for next year and factor in my treatment/health issues.
This is a great site and everyone is so supportive. I was registered with another HepC forum a couple of years back and a particular person was unnecessarily unkind to me so I left.
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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New member Intro 4 years 3 weeks ago #3157

  • coral
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Hi Chejai,

My consulatation with Dr Freeman at GP2U was $69 and it is exactly the same as going to the doctor's surgery only you do it by skype. It's particularly good for people in regional/remote areas and ofcourse it's an important link for many of us in becoming Hep C free. It was in fact my starting point (and will be my middle and end point).

Your brother's situation is more complicated and I would not begin to provide advice however an appointment with Dr Freeman or one of the drs at GP2U will provide an opportunity to discuss and be better informed about ALL of his options for treatment (not just those currently available through government agencies).

In relation to side effects I am one week in with the generic Sofosbuvir and Ledipasvir and my sides are minimal (slight headache and a bit fluey). I think I have been a little lucky so far but the sides are nothing like the horror stories associated with the old interferon treatment.

I know you are trying to think about your brother, your son and your own health but you are definately in the right place.

Coral
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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New member Intro 4 years 2 weeks ago #3202

  • Chejai
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Thanks Coral, I've decided i'll see what my GP says next week and what my brother's says when he gives her all the info I printed out and if we get more 'wait until...' answers then i'll go the GP2U route. Because I know from experience the Hospital clinics pretty much shut down over xmas school hols period and i won't get to see the Specialist until Feb. I'm sick of waiting.
Sounds like your sides aren't too bad. Given what i've been living with for so long now, fatigue, nausea, severe bouts diarrhoea, migraines, peripheral neuropathy and joint pain - surely can't be worse ;)
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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New member Intro 4 years 2 weeks ago #3263

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Hello Chejai

Welcome. Good to hear your considering going down this path. I have had the virus for 40 years and never had treatment. I was F2 for years but recently progressed to F3. I have just started treatment 15 days ago and have had a few sides like fatigue and insomnia. The fatigue is manageable but you will not know how it will affect you until your on them. When I finally took the drugs Sof/Dac 12 weeks, I thought "this is doable". One thing I noticed was the constant years of nausea has gone. Its a relief. I had my 2 week bloods done yesterday and my liver functions are Normal. Its incredible. Once you get the script then you will be on your way. This forum is very informative, supportive and helps break the isolation. I wish you and your brother all the best.
GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015
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New member Intro 4 years 2 weeks ago #3425

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Thank you Joan. It is amazing to read people having good LFT's after such a short time on treatment. I have never had mine in Normal range since 1st contracting it. I am interested in other chronic symptoms people have had for years BEFORE treatment. Fatigue and nausea seem typical. I frequently register high levels of Urea and my Cholesterol level has been steadily rising over the past year - can't be explained by diet or hereditary factors - my Dr can't explain why? Severe bouts of bright orange diarrhoea that was lasting up to 5 days, I couldn't leave the house. I've been prescribed Lofenoxal. I use Inner Health capsules daily - that helps. I understand we are all individuals and will react to the treatment side effects differently.
I just want to get started on it :(
Thanks again for sharing.
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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New member Intro 4 years 2 weeks ago #3429

  • flyingfox66
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Hi Chejai,
I'm looking at visiting a Liver Clinic in Brisbane (mainly to get a fibroscan).
Can you tell me which hospital you had such a bad experience with? I know you say that specialist is gone now...but I still wanted to check if there was any clinics you knew of that I'd be wise to avoid.
Thanks
Sarah
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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New member Intro 4 years 2 weeks ago #3430

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Hi Sarah, I used to pay privately for a Gastro Specialist (at Caboolture) he was the one who sent me privately for a Fibroscan. Realising I needed a Psych assessment and ongoing monitoring and I couldn't afford it he referred me to the Royal Brisbane - their Liver New Clinic. I had to wait a long time - more than 6 mths? to get in. being public. You don't get any choice about who you see hence the 'nice' Dr with highly prejudiced views :( It was decided I was not eligible for Interferon (Yay! didn't want it anyway) but 'new' drugs were on their way and I needed to stay in the system. So, I've been waiting in the system for the past couple of years or so. Finally, got a great Specialist that encouraged me, somewhat conspiratorially, to contact this site, do some research and offered to give me a script and monitoring. I'm just waiting to see my GP this week who's supposed to have contacted him to discuss my plan.
So, if you go public then you get no choice who you see. If you want to know the name of the private Specialist who did my Fibroscan I can tell you but you will still need referral.
Good Luck :)
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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