emo has your hep dr rejected the medicine?

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6 years 5 months ago #7367

Hi Apcail,

I'm really sorry you have had this additional stress when you are halfway there with your purchase of the meds via Greg Jeffreys through the Buyers Club. Expecially when you are keen to have the support of a specialist who initially seemed to be on board.

I also bought my meds through the Buyers Club and I am in my 8th week and on my way to being clear of Hep C. I had difficulty finding someone to support me where I live but to be quite honest I prefer to have Dr Freeman as my monitoring dr anyway. I defy anyone to find someone more knowledgeable and compassionate about this epidemic. I can have a consultation with Dr James via skype and feel totally supported. I haven't had to do so but if I needed to I know that he is only a phone call away.

This is such a personal decision but please don't feel that there are not options now to take your meds and Dr Freeman is such a good option to consider.

Hang in there.

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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6 years 5 months ago #7420

Hi Apcail, I know all this stuff can be stressful, but at this point, I don't see what you are waiting for? Each day you wait, you let those things nibble away at you a little more, even though you have the medicine to stop it at your fingertips.

I did a skype consult with Dr. Freeman from the US, and although at time our video was a little choppy given the distance, all in all it was great. He's a really good Doctor, can answer any question you have, and probably the quality of video you would receive would be better than mine.

I popped those pills almost as soon as I got them. I went from here to Australia to get them. I was clear at 4 weeks, and now I'm past my 8 weeks. From what I read on here, there are also now plenty of doctors scattered about Aus that are willing to monitor generics. Lastly, the "monitoring" with these meds, unless you are taking ribavirin, likely won't amount to much more than ordering your 4 week, 8 week, 12 week tests, etc. I have had no side effects to speak of, other than some weird insomnia where I either have trouble going to sleep, or I sleep for 3 or 4 hours and then wake up...but in 3 more weeks I expect that will be gone when I finish up.

Get well soon, best wishes to you.


GT 2b; since 80's, no prior tx, sofosbuvir and daclatasvir compounded from API's at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. " I feel GOOD!! I knew that I WOULD!"
Last Edit: 6 years 5 months ago by 2b. Reason: typo
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6 years 5 months ago #8269

There is clearly some nervousness among health professionals especially those in the large public and teaching hospitals in Australia which I totally understand
It's really just about finding the 'best fit' for yourself and the Doc you find will monitor you. Even the source of the generics seems to be a consideration for some medicos who are yes prepared to monitor but who have experience with say the Chinese vs the Indian meds or vica versa. We know that the medicine that James and Greg supply is the real deal, as a patient we have already made our decision based on enough evidence of integrity, professionalism, empathy (a rare gift to a HepC patient) and the thousands already clear because they have treated with the generic medicines.
At the end of the day it's about simply finding your practitioners preferred source and ordering via James or Greg and then being monitored.
I personally have found that the compassion and kindness of both these men to be outstanding as I travel along the road to wellness, using generic Harvoni and being monitored by a specialist in my State where I live.
Day 5 today of generics and never looking back. Goodbye peg/inf you were no friend of mine. :evil:


Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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6 years 5 months ago #8727

Definitely a case of finding the right doc Ariel, and some can be hidden in deep cover amongst collegues in the same clinic who are steadfastly against the monitoring of those on generics...it was just a fluke that my usual liver doc happened to be one of those well disposed. The increasing numbers of professionals in Australia willing to monitor as time goes on is a very positive move, and can only increase as the Govt-supplied meds eventually roll out.

I could not agree with you more that we are extremely fortunate to have men of such compassion as Dr James and Greg who dared to stand up against the rest of the medical profession and take the courageous steps to help sufferers, when no one else was prepared to take the risk. What a debt we all owe them.


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 5 months ago #8737

I could not agree with you more that we are extremely fortunate to have men of such compassion as Dr James and Greg who dared to stand up against the rest of the medical profession and take the courageous steps to help sufferers, when no one else was prepared to take the risk. What a debt we all owe them.

Oh zhuk, I SO agree with you.
How lucky are we!!!!

Dr James & Greg deserve a medal!

My child is a different person now & I'll never forget Dr J's kindness & courage.
He's J's hero AND mine ! :cheer:


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 5 months ago #8774

Cindi, yours and J's story and journey to recovery is one of the most moving I've read on this site. That your boy now has a life ahead of him, unburdened by the fear of what may happen down the track...and that the conventional medical profession wanted to give him Intf/Riba :blink:

Well I don't think the word 'miracle' is too strong...I reckon nothing short of a AO for both of them :)


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 5 months ago #8776

Lesser men have been sainted.....


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forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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6 years 5 months ago #9310

Hello, on day 7 generic Havoni and a newbie :) on forums

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6 years 5 months ago #9319

Hi Anna and welcome,

Congratulations on making the decision to take control of your health. Lots of friendly, supportive people around here so please feel free to ask any questions you may have, join in the chat and tell us how your treatment is progressing. :)

I see you say you are a newbie on forums, did you post in this thread because of lack of support from your hep doctor or just didn't know how to start your own thread. If the latter than just scroll to the top of this page, click on the New Topic tab and away you go! :woohoo:


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 5 months ago by Gaj.

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6 years 5 months ago #9353

A big ol Arkansas Howdy Do to you!
Indeed, you have found a great place to talk, listen, learn and get well. Getting well seens to be a very contagious state around here.
Good luck and welcome!
Mike


This email address is being protected from spambots. You need JavaScript enabled to view it.
forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
The following user(s) said Thank You: Hazel

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6 years 5 months ago #9390

Hi Anna and welcome to this great place I am just on Day 15 and this is a loving and informative place to be on treatment any questions no matter how insignificant they seem are supported we even have a girls corner just browse around that's how I got started x #flower
Love from Ariel for a good tx outcome


Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18

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6 years 4 months ago #9399

Hi Anna and a warm :) welcome from me too

You can put some details (eg GenoType / Which medicines you're on etc) in your profile by clicking on the 'profile' tab above.
This can help others to help you better if you have any questions.

I hope your treatment is easy for you (it should be on Harvoni)
and I wish you the very best possible outcome.

#flower


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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6 years 4 months ago #9405

A quick hello and welcome from me Anna. Well done you for taking the leap into the rewarding world of generics.
Good luck with your treatment.

Cheers

Coral :cheer:


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 4 months ago #9439

saw this quote related to something else, puts me in mind of this topic for sure:

"When a true genius appears in your world, you may know him by this sign; that all the dunces are against him in a confederacy."
—Jonathan Swift


Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
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6 years 4 months ago #9453

When a true genius appears in your world, you may know him by this sign; that all the dunces are against him in a confederacy."
—Jonathan Swift


Good one hazelnannon !!
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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