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TOPIC: Background info on Sussan Ley's announcement

Background info on Sussan Ley's announcement 3 years 4 months ago #6134

  • Alsdad
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I would suggest that your acquaintance's specialist is the one who needs to do some learning. All the best new evidence suggests that, for F3/F4 patients, Ribavirin is yesterday's medicine:


fixhepc.com/forum/gt3/369-gt3-high-svr-r...ith-daclatasvir.html
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Background info on Sussan Ley's announcement 3 years 4 months ago #6140

  • DrJames
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To add to Alsdad's point here is part of an email conversation with a widely respected Specialist

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Re GT3, my recommendation is 12 weeks SOF/DCV for F0-3 and 24 weeks for F4. I also do not like RBV. It may help in patients with decompensated cirrhosis, but they are the patients least able to tolerate it. It may enable shortening of therapy so 16 weeks SOF/DCV/RBV probably equivalent to 24 weeks SOF/DCV for GT3 F4, but given how well tolerated, I would prefer latter regimen.

Again, with GT1 F4 (treatment experienced) can use SOF/LDV 24 weeks or +RBV 12 weeks. But, particularly with PBS listing being up to 24 weeks for this group (same for SOF/DCV in GT3 F4) I will probably recommend 24 weeks without RBV.

A simple decision support tool would be a great idea. There will be Australian HCV consensus treatment guidelines released early next year, but these will be quite detailed, wordy etc.

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We are just double checking the output of the Decision Support Tool now.
YMMV
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Background info on Sussan Ley's announcement 3 years 4 months ago #6146

  • Paul-Jarman-facebook
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Nonna wrote:
. Her particular history required 24 weeks treatment not 12 and also ribavirin.

.

Treatment guidelines seem to be changing almost weekly with the release of new data and given that treatment is monitored along the way there is scope to add to the treatment length. It is also legal to import 12 weeks supply of meds not 24 If your friend was to clear the virus in 14 days 24 weeks could appear to be excessive but her prior history would probably be taken into account whilst on treatment..

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
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Background info on Sussan Ley's announcement 3 years 4 months ago #6181

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IF I simply went by the US official FDA guidelines, and what my very specially trained, Gastroenterologist knew, I would presently be suffering under the horrible side effects of Ribavirin right now! A Gastroenterologist, and she's at a well respected clinic, and she's not dumb, STILL didn't know as much as Dr. Freeman on this subject with the generic meds and treating without Ribavirin.

Instead, I knew from my own research which was thankfully confirmed by Dr. Freeman, that I didn't need Ribavirin, all I needed was Sofosbuvir and Daclatasvir, which I'm now 7 weeks into, and undetected and NO side effects.

A year from now I'll bet no one will be prescribing Ribavirin anymore--Even our backwards US FDA is only saying its for GT 2 anymore, and I've read that's only because there are so few of us that no one has put in the effort to do testing of the new DAA's on the GT2's because there aren't enough of us to make for a "profitable" market supply.
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!"
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Background info on Sussan Ley's announcement 3 years 4 months ago #6790

  • Nonna
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This particular patient had previous exposure to DAA meds and the treatment was unsuccessful . i would love to see the disappearance of ribavirin but even more than that i would hate treat with the new meds and not clear. i think doubting recommendations of a Professor based in a large teaching hospital who is actively involved with managing patients with complicated histories. He is also very much involved with clinical trials and has worked in the field for the twenty years I have known him is a bit ripe.

These meds are new and a lot of individuals needing them can have very complicated histories that can't be discounted.

He is not the only specialist prescribing in the field with up to date knowledge that feels the need to add in riba in some patients.

just think it is important that people consult with a specialist if they have complicated history and in particular previous exposure to DAA meds.
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Background info on Sussan Ley's announcement 3 years 4 months ago #6794

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UNonna wrote:

just think it is important that people consult with a specialist if they have complicated history and in particular previous exposure to DAA meds.

Hi Nonna,

As one of those people, I totally agree with the quoted statement. That was exactly my approach, go and see my specialist and discuss my treatment with him, get his recommendation of the most appropriate treatment, then cross the bridge of whether he would prescribe it for me (he did) or whether I needed to get the script he recommended elsewhere.
As your friend apparently has a supportive specialist, I'm trying to understand why she felt a need to get advice via a forum instead of a medical consultation, presumably used that to ask for (and was given) an inappropriate script from her GP, then ordered the DAAs and only after that told the specialist?

Anyway, hopefully you friend is now on the correct treatment as advised by her specialist and on her way to SVR. :)
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: 3 years 4 months ago by Gaj.
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