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TOPIC: Joan Started treatment

Joan Started treatment 3 years 10 months ago #5701

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Hi Joan,

I fully agree with your comments about waiting for the PBS. For me an April 2016 appointment would have meant another five months of feeling shyte and having my already damaged liver pummelled more. The battle was not about getting treated - eventually, but the WAIT.

Others in the world who don’t have the prospects of waiting, that is they live in places where the drugs will not be affordable anyway, should be assured by what happened in Australia, that if people take their own care into their own control things will change. Dr Freeman and FixHepC enabled this here.

I cannot remember anyone other that Dr Freeman et al. (along with the forum) carrying on about Hep C treatment and I guess these guys in Tasmania seem to be a catalyst for this change.

Yours

J
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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Joan Started treatment 3 years 10 months ago #5704

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Great News Joan. :) I too wondered should I have continued the 'wait' BUT NO! Like You taking my health into my hands has been far more empowering than more 'waiting around'.
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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Joan Started treatment 3 years 10 months ago #5726

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Hi Joan,

Totally agree with you. Thanks to Dr Freeman's initiative and also the seemingly tireless workers at the Buyers Club who help us to source the generics, I haven't felt so good in too many years to remember.
I ordered my second 12 week prescription on Friday.....absolutely no regrets! And hopefully treating myself with generics helps someone who really needs it to get govt assistance.

G
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:
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Joan Started treatment 3 years 10 months ago #5729

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Lovely to read you are doing so well Joan.

In England, we have the medicines on the NHS coming 'In March' 2016, but my Dr has said He 'hopes to be able to treat me sometime next year' and that is not something I wish to rely on.

Like you, I believe I carried this virus for many years and this I feel, combined with being over 50, hightens the risk factor, so I am also taking my treatment into my own hands.

Happy Christmas :-)
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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Joan Started treatment 3 years 10 months ago #5735

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Good on you London girl, you never know how long you'd have to wait.

The same here, they say the orals will be for "all" but I bet there will be a long wait for some..

I'm so glad I got the generics for my son, no regrets at all.
I can imagine how long underage people will have to wait.

I know they were just starting up trials for the orals with kids overseas, so....
that will take years....

Never been happier in my life to have got the generics, thanks to Doc James & the hepC buyers club & this forum :cheer:

I don't trust the Gov one bit.
I bet there wont be enough cash to cover everyone with the virus.
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!!
Last Edit: 3 years 10 months ago by CJ. Reason: spelling
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Joan Started treatment 3 years 10 months ago #5759

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Hello

I have been on treatment 6!/2 weeks now….the first few weeks I couldnt sleep and the fatigue was overwhelming I was comparing myself to others on the site and wondering why I wasn't feeling that great and full of energy. It was hard not compare myself, I wanted to be that person who had a new lease on life and my expectations were high. Then it was suggested to focus on my own experience as everyone is different and compare myself to myself and observe the changes in my symptoms.

The improvement in the 61/2 weeks is absolutely incredible. Its been gradual and over this time the meds have done there job. My body has integrated them and yesterday I did so much. I say this because from 11.30am to 12midnight I was active. I managed to do it all from creative endeavours to christmas party with a level of energy that I have not had for approx 30 years. I wasn't pushing myself, dragging my arse around stressing about how I was going to get through the day and night. I just paced myself and breezed through with energy. I remember that was how I used to feel way way back. I was thinking this must be how people feel. They have a healthy energy to do things, to live their lives. I also ate what I wanted and am ok ish today. Liver a little tight..but ok I have a clear head no brain fog. Friends are commenting how well I look and how present I am. The old me is starting to emerge. This is half way through treatment…I look forward to improving overtime and am starting to think about the possibility of getting work which was something I just couldn't comprehend a year ago. I feel like I'm rising from the Ashes!!! Its exciting to feel I am getting well and look forward to the future.
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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The following user(s) said Thank You: Joy, LondonGirl, Bloot, Paul-Jarman-facebook, Chejai, Gaj, zhuk, honker

Joan Started treatment 3 years 10 months ago #5760

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Great to read your post, Merry Christmas I know its gonna be lovely for you after so long. Take care !
Treatment naive
F 3/4
Genotype 1 a & b
V/L 17 MILLION
Started Harvoni 11th Dec 2015 for 12 weeks
4 weeks VL UND
6 WEEKS ALT 32, AST 34
EOT 03/03 2016 ! UND
ALT 34, AST 26
04.04.2016 SVR 4
26.05.2016 SVR 12
16.08.2016 SVR 24
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Joan Started treatment 3 years 10 months ago #5761

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Thank You Darbara Merry Christmas to you too and hope 2016 is a good one.
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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Joan Started treatment 3 years 10 months ago #5818

  • isaing4
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Hi Joan,
I am happy for you. Thanks for sharing so good news. :lol:
I am new on the forum and 2 weeks on treatment. I am feeling good till now .

Merry Christmas!
Happy new year with NOT DETECTED! :cheer:
HCV since I don't know. Diagnosed in 2010.
GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive,
started 12 wks Twinvir on 06.12.2015. Feeling great and grateful :)
virus not detected 06.02.2016 & SVR24
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Joan Started treatment 3 years 10 months ago #5927

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Thanks Asaing4

I wish you well on your treatment and all the best over the holiday season.
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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Joan Started treatment 3 years 10 months ago #6044

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Thanks for sharing Joan, sounds great for you to be feeling so good in yourself and energy levels.
Looks like you'll get to enjoy xmas better than usual :)

Wishing You a good One and Fabulous 2016!

Good News asaing4 that you have the UND news before Xmas - yay for you :woohoo: Wishing you a Good One too!!
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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Joan Started treatment 3 years 10 months ago #6254

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Joan, I'm so happy for you! You did well!!! Hope to speak to you one day! :) :) That would be so awesome!!
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Joan Started treatment 3 years 10 months ago #6255

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Chejai! I had the same! Aweful time! Sleeping-problems from day one...took xanax to sleep aswell...Chejai wrote:
Thank you very much for sharing your experience Joan. Your description of your insomnia pattern is exactly what I've had forever! For many years the struggle to fall asleep but always waking around 4 am and then unable to get back to sleep until about 7am, very deeply and full of lively dreams! But I've been on an antidepressant for years that I take before bed because it's sedating - so fall asleep easily (most nights) BUT still wake at 4 am etc.
I only have coffee in the morning and if I have tea at night it's herbal. Careful with diet, don't tolerate a lot of things especially sweet/sugary things. I drink lots of water though.
As you say it's going to be different for everyone just as our experience of living with Hep C has been.
Wishing you well :)
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Joan Started treatment 3 years 10 months ago #6292

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Hi Joan,Thanks for sharing your success I feel optimistic that I might feel better
soon I,ve been on Harvoni for 1 month 6 days.I enjoyed reading all your posts
and wish you a much better life in the future.I have noticed I have a bit more energy.
Sue Health2299
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Joan Started treatment 3 years 10 months ago #6321

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Hi Sue, Life and Chejai

Thank you all for your well wishes and support. I hope you've had a good Christmas and a good rest. I had a good Christmas the best in years because I feel better. I ate some things off my diet "hey its Christmas" and now feel a little foggy and tired. But well worth the indulgence. I feel confident my energy will come back. Its very erratic. One minute I feel good and start planning all these things like going to get a job, maybe will drive down to Melbourne for NYE or whatever and the next day I feel tired and wonder how the hell will I be able to manage a job let alone a 10 hour drive. The roller coaster hey!! But its good to have the possibility of a future…

Sleep is getting better. Generally I wake up early but I am not waking up five times a night. Just rolling with it.

Wishing you all a healthy and HCV free 2016.
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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