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Liver Clinics and Generic Rebels 6 years 10 months ago #2859

Hello everyone I have taken my first dose of my medicine last night......long way to go but hoping my four week tests will come back undetected :)
Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!

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Liver Clinics and Generic Rebels 6 years 10 months ago #2863

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I hope so too Lynne, and it's highly likely. Now is the time to be a patient patient. :)
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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Liver Clinics and Generic Rebels 6 years 10 months ago #2864

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Hi Lynne,

I started mine 2 nights ago so it looks like we'll be travelling this road together. We'll aim for some collective patience!

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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Liver Clinics and Generic Rebels 6 years 10 months ago #2865

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All the very best with it Lynne, and coral :) The road starts here and I wish you both a smooth one.


Hope to be following you all in a few weeks, with a bit of luck...I know that feeling of impatience 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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Liver Clinics and Generic Rebels 6 years 10 months ago #2947

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Hello Lynn and Coral,
wishing good luck on the path to health..what an amazing thing you are doing!! Wishing you a smooth journey.
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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Liver Clinics and Generic Rebels 6 years 10 months ago #2968

i couldn't believe how backward thinking Geelong hospital have been. I have always found there clinic odd. Asking questions was apparently and unusual thing for patients to do there. It always seemed justified to travel to Melbourne. i'm glad you have managed to teach them a thing or two and hopefully people will have an easier time now because of you. I do know a lot of people who do the drive to Melbourne hospitals because of there attitude.

Glad you persevered and got your treatment and monitoring.
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Liver Clinics and Generic Rebels 6 years 10 months ago #3022

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Yes Nonna. Their attitude towards clients is condescending and authoritien. Geelong is Victorias biggest regional City, only an hour from Melbourne. It makes you wonder. The clinic nurse is really good though.
I hope I have made it easier. The registrar still treated me with disdain. She was very non chalaunt about my results when they showed no virus detected warning me that they still diddnt really know the long term side effects of the DAA's.
What a party pooper!!
I'm into week 9 with only three more to go. I'm virus free and am feeling better than I have for ages.
All the very best Nonna

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Last edit: by Vicki.

Liver Clinics and Generic Rebels 6 years 10 months ago #3036

Hi Vicky Nonna unbelievable story about Geelong hospital. they were trying to justify their unkind attitude by scary talk of long term effects of generics. Where was their heartfelt concern about the use of poisonous interferon used in the past 3 decades. Many people have been damaged by this drug and it failed more often then not. They tried to push it onto every poor desperate person looking for hope. The hospitals couldnt care less about the effects and patients were left to suffer alone ofter without out patient care. Suddenly they are concerned about the effect of these drugs which actually cure. Also I would be pointing out to these health care professionals the long term side effects of having hep c. Whats wrong with these people dont they realise people have been putting up with this suffering for years and we all die eventually, we are just trying to have some quality time before we go. Have mercy .
Geno1a 35years fibrosis 2 or 3 different results from different hospitals ??
24weeks mesochem sof/led as unsure of fibrosis status.
currently UND. No bad side effects
Have svr12 ... waiting for svr 24
I now have SVR 36 weeks.
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Liver Clinics and Generic Rebels 6 years 10 months ago #3050

Well said Poodle. I have recently had a 'consultation' in a London hospital with a consultant whose manner towards me left me left me feeling upset. It is not acceptable. The 'Blythe' tone as DT described it is totally unecpessary and can leave patients distressed even leading to depression. There is nothing positive whatsoever in this attitude from those are supposed to be helping.
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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Last edit: by LondonGirl.

Liver Clinics and Generic Rebels 6 years 10 months ago #3051

I had the same experience with a specialist. here in Bendigo. I paid to see him privately so he could arrange the Fibro Scan etc. which came back F0 thank goodness. My viral load is 3.3m. Before I even sat down he said "I won't be able to treat you but can answer any questions you have"! I always thought that is what specialists were meant to do, look after their patients. Needless to say I will not be seeing him again. I have a supportive GP. I received a letter form the Bendigo Base Hospital telling me it could be up to 18 months before I get an appt. at the clinic. Then I found FixhepC. And I agree that the sickest will get the trial drugs here (and I have no problem with that whatsoever) and those of us that are in a relatively less afflicted position at the moment will have to just wait and see.........just taken my fifth dose tonight and apart from insomnia and a bit of constipation (too much information) I feel good!!
Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
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Liver Clinics and Generic Rebels 6 years 10 months ago #3052

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Oh YES Poodle EXACTLY what I thought.
How dare that party pooper say that about the generics, when they never even admitted that the old drugs had after affects.
I know the ifn + Ribas did terrible things to me.
I found out last year after having a brain MRI scan, that my bad fuzzy memory is probably because they could see evidence of 6 small strokes I've had, & these were probably from the Ifn, after all I had to endure that poison 4 times. Without any specialist saying, "oh wait, by the way we aren't sure if they have any long term affects" :(
And then our specialist had the nerve to try to push those dreadful old drugs on my son!!

How dare they NOW be concerned that they aren't sure what the generics do. I'm sure they are MUCH kinder on our bodies compared to that other stuff. The side affects of the Ifn was horrifying.
These generics are gentle, Ifn isn't & neither is 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!!
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Liver Clinics and Generic Rebels 6 years 10 months ago #3155

My Liver Nurse is a really lovely person I notified her I had accessed the generics she was so happy for me and wanted to monitor my progress at the clinic. Still have text message on phone, she was going to talk to Doctor since then nothing it has gone quiet obviously pressure has been applied.
Went to local Liver Clinic was told that they are that busy best to be monitored by Doctor who wrote script that's fine . ;)

ps. My Liver Nurse did suggest I add Riba to the mix.
Genotype 1b 42 years.
2007 48 Weeks Interferon + Ribavirin Relapsed.
2015 6 Weeks same as above + Sempivir Too many sides stopped.
7/11/15 started Sof / Dac + Riba 24 Weeks. Kingswood Pharmacy.
VL Before tx 3 million.
1st bloods 8 weeks undetected
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Last edit: by Wayne. Reason: Add a bit

Liver Clinics and Generic Rebels 6 years 10 months ago #3194

Good morning everyone Does anyone have any hints as to what is okay to take for headaches while taking the medication. I have had a horrid headache since Wednesday and just can't shake it. Other than that I am dealing okay with the insomnia (which I still have) and energy through the day not too bad at all :) Hope you are all travelling well.

Lynne
Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!

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Liver Clinics and Generic Rebels 6 years 10 months ago #3198

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Hi Lynne,

I was told Paracetamol is ok, I gave my son 2 panadol yesterday.
Hope you feel better soon.
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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Liver Clinics and Generic Rebels 6 years 10 months ago #3199

Hello everyone!
I'm just starting my journey towards the cure, though I've been wrestling with this disease for twenty years. I'm trying to choose a Liver Clinic in Brisbane to be referred to and I'm wondering if anyone had any experiences to share...warnings or recommendations?
I am lucky I have a very supportive GP but I need a specialist to help determine what combination I should go for. (Plus the Fibroscan of course). I'd like to avoid any unpleasant experiences such as described here.
How awful to be fighting on every front as we have all been for so long.
Love to you all
Sarah
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia

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