emo What's best info for specialist on generics?

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6 years 7 months ago #3583

Make sure you have some paperwork at hand Cindi Maybe even show him your meds for J,


Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV

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6 years 7 months ago #3586

Hello CJ,

Anyone who fought for our country deserves to be looked after.

Please send me his details and we will help paper over the cracks.

The US Marines say "No man left behind", so at the risk of plagiarism....

The FixHepC goal is simple:

Everyone, everywhere with no one left behind


YMMV
The following user(s) said Thank You: Joy, CJ

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6 years 7 months ago #3601

Hi Cindy

just incase you haven't thought of it, write a list of questions to ask the specialist before you go. Its very helpful as you can easily get sidetracked. Also if he is a patient they will have all his records, everything. Still take what you can but it will all be there. I have never had a problem with this specialist he has always been helpful.

All the best for you and your friend.


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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6 years 7 months ago #3603

Thank you Dr. James, beautifully said.

Unfortunately our Gov hasn't really lived by that type of saying, many veterans are forgotten & fall through the cracks.
Including my husbands cousin who died last week of liver failure, he was a Vietnam vet.
It was too late for him.

Very sad.

Lets hope it's not too late for our friend.
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: 6 years 7 months ago by CJ. Reason: added a bit

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6 years 7 months ago #3664

Hi Joan,

Thanks for that, I managed to get his records of all the meds he's on from the nurse at the clinic he's currently at ( he has PTSD )
gave these to his liver specialist to see if there will be any interaction with the orals if he gets them.

His doc was unwilling to "advice" our friend to get the generics, but willing to monitor him, which is what we expected.( although seemed a little put out)
But our friend's a bit scattered & didn't understand, doesn't want to offend his specialist, He's rather him to RECOMMEND them, think he's worried about that.
it's taken a lot of explaining, but I think he finally understands.

Hope things can get started soon.
But may be a while before his specialist gets back to him.... ( this would be typical).. so we'll try to keep on top of it all for him.

This is his 2nd liver transplant, so it makes sense to stop the hep from destroying this one.
Although his doc is mainly worried about the Bile Ducts which are bad & he has to have stents put in every few months.
I guess it's all a bit complicated, but..

Still think a hep free liver would be a happier liver.

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 7 months ago #3669

CJ wrote:


His doc was unwilling to "advice" our friend to get the generics, but willing to monitor him, which is what we expected.( although seemed a little put out)
But our friend's a bit scattered & didn't understand, doesn't want to offend his specialist, He's rather him to RECOMMEND them, think he's worried about that.
it's taken a lot of explaining, but I think he finally understands.

Hope things can get started soon.
But may be a while before his specialist gets back to him.... ( this would be typical).. so we'll try to keep on top of it all for him.

Tell your mate not to worry about it CJ - RPA said the same thing to me, they are fully supportive and happy to monitor, but can't "officially" endorse/prescribe the meds...no doubt some directive has come down from on high. So, nothing to get stressed about.

This is his 2nd liver transplant, so it makes sense to stop the hep from destroying this one.
Although his doc is mainly worried about the Bile Ducts which are bad & he has to have stents put in every few months.
I guess it's all a bit complicated, but..

Still think a hep free liver would be a happier liver.

x

Couldn't agree more. You are doing something wonderful for him, when our system sadly cannot.


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
The following user(s) said Thank You: CJ

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6 years 7 months ago #3670

The offer to monitor him is a good one I think even though I understand the specialists reluctance to approve the generics it makes me annoyed. My best friend was a Vietnam Vet who died of cancer a few years ago so I have been interested in seeing how your friend gets on Cindi.

cheers


Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
The following user(s) said Thank You: CJ

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6 years 7 months ago #3674

Hi Cindi,

As the others said, the refusal to provide advice seems to be standard practice. My hepatologist wouldn't either but was prepared to tell me what treatment he would prescribe if/when it was available on PBS and what my prognosis was in the meantime. He was happy to write me a script and monitor based on my informed decision......sigh, and so we dance the dance!

It must be so difficult to explain these sort of subtleties to someone like your friend. Perhaps Dr James has the right type of paper and glue to help per his comments above?

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:
Last Edit: 6 years 7 months ago by Gaj.
The following user(s) said Thank You: CJ

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6 years 7 months ago #3691

Hi Paul,

Sorry about your friend, so sad. Did he have the virus?

It's amazing how many war vets are finding life so hard, our friend is often staying in a clinic because he gets so down & struggles with the hep.
& visiting there you see so many from Vietnam war & even younger ones from the Afghan war, all poor lost souls, struggling so much with PTSD.
I do think a lot of them get forgotten out in the real world, but the nurses here are always really kind to them.

At least your buddy had you as his mate Paul. :)

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 7 months ago #3694

CJ wrote:

Hi Paul,

Sorry about your friend, so sad. Did he have the virus?

At least your buddy had you as his mate Paul. :)

x

He did much more for me than I for him Cindi he also was very instrumental in getting PTSD up as a war caused condition when he was at the VVA. A lot of Vietnam vets are much better off today for his efforts. He didn't have this virus but he had other issues PTSD and effects of Menangitis from Vietnam.


Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV

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6 years 7 months ago #3702

Hi CJ

Although the specialist didn't give your friend a script or openly support the generics he will monitor. Take that as a yes and try to get the drugs as soon as you can. I understand his (your friends) dilima.. you really want the specialist's approval as he seems to know it all!! I felt like that, however, when push comes to shove its his body and his life and it is very empowering to side step the authorities (specialist) and make a decision for your life!! From what you have said he is confused and why wouldn't he be? The impact of his failing liver would make him feel very very unwell and vulnerable. Let alone all the other things going on. He's condition is complicated and I can image the dire state he feels. But if you can help him understand that what he is doing is legal and there are many people going on treatment via FixHep C and that if it wasn't safe then the specialist would never consider monitoring.

Also the longer the delay in the negotiations with Gilead/Gov then the more people are going to be approaching the hospitals with there own meds for monitoring. The hospital must see the increase in patients taking this into their own hands. The only reason I found out that they monitor was when I saw my nurse I asked if they would support me and to my surprise she said yes. Then I asked if they were supporting others and she said yes!! I had no idea that the support was there. They don't tell you because of liability incase something goes wrong. So I think its their way of quietly supporting by saying yes if you ask.
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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6 years 7 months ago #3703

Definitely what I found too Joan. When I first asked about the possibilty of generics RPA didn't seem keen and were still adhering to the "wait until next year & the PBS"; but once I contacted them saying the meds were on their way - all good from there. I don't doubt that they have no qualms whatsoever about the efficacy of the drugs, but for political purposes can't be seen to be actively promoting them. The ball is in our court on that to take it into our own hands.

I'm also sure from a clinical perspective they would be interested to have us as "test cases" for the new meds, and will apply knowledge gained through the generic rebels for when the Govt does give the go-ahead. Provided the drugs haven't been superceded by then lol


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 7 months ago by zhuk.

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6 years 7 months ago #3705

Hi Joan & Zhuk,

I understand what you mean & I did get the feeling like he'd be happy to monitor him. I also think our friend is understanding it all more now & would like to get the orals.
Now it's all up to the specialist, I gave him a sealed file of his meds from his clinic he's currently staying at, so he could check meds against the generics fo interactions, I would have rathered also send one to Dr James, but they're all weird about confidentiality etc. The doc said he'd get around to it.........
This worried me.
The next day I contacted his clinic nurse, mustn't be same one as you guys have though, because this one was quite snooty & didn't know about the generics, ( so she said) and hadn't heard of dr James & she just said "is he a liver specialist?" and when I said please, have you checked his meds for the interaction with generics, she got all huffy & was evasive & eventually made out that would take ages to get around to. Like it's not important.
Felt like pulling my hair out. SO frustrating. :(
I'm going to try to get a hold of his meds list again & fax them to Dr James I think?


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!!

Please Log in or Create an account to join the conversation.

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6 years 7 months ago #3706

Hi Paul,

Wow, Paul your mate was a hero, good on him.
He & our mate may have been friends.
He knows a lot of the old Viet vets.

xo


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!!
The following user(s) said Thank You: Paul-Jarman-facebook

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6 years 7 months ago #3717

Hi Cindi, replied to your PM


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

Please Log in or Create an account to join the conversation.

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