Numbers of SVR's / relapses / breakthroughs

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16 October 2015 at 2:20 am #2314
Bloot
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- Recovery Champion
@bloot
Just to add to the above
Looking at the video posted on this site. 24 weeks is recommended for those with Cirrhosis or significant scarring
The thick scar tissue makes it more difficult for the tx to penetrate into the liver
I think it added an additional 5% cure rate

The addition of ribavarin added another small % to that cure rate
But those having used it previously may have resistant viruses so may be of no use

I have done the iner/ riba nightmare and Dr Freeman suggested that riba would be of little benefit
My liver had significant damage 12 years ago, so I’ve pretty much decided on 24 weeks of sof/ dac

Video link
https://www.youtube.com/watch?v=vCcpES8O6P0

52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.
16 October 2015 at 2:54 am #2315
Chester
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- Guardian Angel
@chester
Also to add to the above, nurse said of the patients she’s personally monitoring (don’t know how many that might be or what their personal characteristics are – quite a few patients I’d imagine given I’m in Hobart), no one who was UND at 4 weeks had relapsed so far. And the EASL guidelines for cirrhotics is 12 weeks with RIBA. That’s why my specialist wanted to add in the Riba in case there was some cirrhosis there given assessing fibrosis is not an exact science no matter how you do it.

So while I’m taking some risk by not extending, I’m confident that it’s a small enough risk it’s worth taking. But of course, not only do everyone’s individual characteristics influence what decision they make there may also be different personal factors to consider. Like whether to you can go get the drugs if a worst case scenario eventuates and exports of generics are stopped.

Oh and nurse said once you are UND on treatment you will stay UND while on treatment (provided you continue to comply of course). You can’t go backwards while on treatment. Hope she’s right and I’m not spouting rubbish. Perhaps the doc can confirm. So my next VL is scheduled for immediately after end of treatment. Next one after that will be 12 weeks after which hopefully I’ll be done. Got sent away with an FBC form but only to be used if I start seeing any signs of anemia. Now at the end of week 7, that isn’t happening yet so doubt it’s going to be a problem.
16 October 2015 at 3:58 am #2316
Bloot
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- Recovery Champion
@bloot
That’s all sounding very positive (being negative) Chester

Regarding the 12 weeks + Riba
I don’t think the EASL would take the $ considerations into account
But somewhere on this site the good doctor has talked of the ‘bang for buck’ of conventional government funded treatment
12 weeks worth of the new drugs is hideously expensive, whereas Riba is as cheap as chips
So assigning a $ cost to an extra 12 weeks of treatment for only a few more cases of +ve outcomes does not make for a great ROI
For those not previous users of Riba, the low cost to +ve outcomes gives a greater ROI

So as Chester says, it is an individual decision
For my wheezy old liver, an additional 12 weeks can increase my chance of success by 5% (I think i have that correct)
If the price of this is $1500 (as opposed to the exorbitant price the govt would have to pay those swines from Gilead)
Then it is a price worth paying

52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.
16 October 2015 at 9:53 am #2319
SShady43
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- Treatment Warrior
@sshady43
Hi Dointime,
I think you are in UK? I have heard the docs there, along with the US docs are VERY reluctant to write scripts for generics. did you get your meds without a script, or did you manage to find a doc who was willing to do that for you? I’m so anxious to get my meds before our avenues to do so get shut down. I am just going to start pounding the pavement and Knocking on doors til I find a doctor who is willing to help. Thanks for any input. Keep fighting the fight.
16 October 2015 at 1:39 pm #2324
dointime
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@dointime
Hi SShady43,

Mesochem supplies meds without a script.

It is very difficult to find a doc in UK who will give you a script although Alsdad did find one and posted details here on another thread. I can only add that in my personal experience the UK docs will just give you a dose of deep depression from dealing with them, which is the last thing a person with hepC needs. I have come to the conclusion that not only are they backward, the whole system is mediaeval, worse than you could expect in India or many countries which they arrogantly dismiss as 3rd world, like they dismiss the generics. If you don’t want to feel suicidal (or homicidal) then don’t have anything to do with them.

If I were looking for a script then I’d ask Doc Freeman’s advice.
Good luck
dointime
17 October 2015 at 10:53 am #2381
miko3
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@miko3
It seems I am in the same catagory as chester ( 1b, naïve, f3/4) I am doing sof and riba from India,dac from Mesochem.
My specialist is confident 12 wks is enough.However,the 6gm from Mesochem gives me an extra 16 days,and I have extra riba,so I will probably try an access some extra sof to give me the extra.2wks.Why waste good dac.I approached the pill onslaught with “fear and trembling”.I am 10 days in and much to my surprise,I feel great.The only side effect has been some truly bizzare nightime dreams.
Went for a 60k bikeride yesterday.If it remains like this it will be a breeze.My only fear is forgetting to take the stuff.
I watched the Graham Foster video about 10 times and studied the Ally trials and am fairly confident in the 12wk regime advice of my specialist.As has been mentioned it is an individual decision,but most of the anecdotal evidence seems to be positive about 12wks being enough if el cheepo riba is added.

Gen 1b 40yrs,tx naive, f3/f4.VL too high to quantify.
Started tx 12Oct.sof and riba India via greg.Dac from Mesochem.
4wk result virus not detected,all liver functions in normal ranges.
Only SE intermittent insomnia.Feel great and grateful otherwise
20 October 2015 at 12:58 am #2507
SShady43
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- Treatment Warrior
@sshady43
Hi Dointime,
I am in the US, and recently sent an email to Rachel as Mesochem. Here is her reply (received today) to my inquiry:

Dear Sir,
Good day!
Thank you so much for your email, we are supplier of daklatasvir
But our product is powder form API, not medicine, can’t be used for treatment directly, sorry we can’t sell.

Best wishes,
Rachel

It seems that it’s getting harder to access from this company now. Anybody else heard anything? Also does any body know if the new TTP is a signed, done deal? I read that it looks like 8 years on patented drugs before generics can be made. Are we in danger of losing the India and China suppliers? Would These countries be required right away to stop making generics? Not exactly sure how this works, if someone could send a link, so am better Informed?? Thanks.
20 October 2015 at 2:08 am #2515
Alsdad
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@alsdad
Afaik you can get API’s from Rachel if you provide a letter from a pharmacist confirming that they will encapsulate the API’s for you.
20 October 2015 at 2:52 am #2519
dointime
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@dointime
Hi SShady43,

As you are in the US I am guessing that you have a snowballs chance in hell of getting a letter from a US pharmacist confirming that they will encapsulate the API’s for you.

Anybody know if this letter for Rachel is just a formality to cover their ass at Mesochem, or is it a serious legal document that they must pack with the shipping documents for customs? Who checks it?

dointime
20 October 2015 at 3:03 am #2520
dointime
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@dointime
Hi Sirchinenge,
I guess I missed those “well documented” ways of getting around the problems with that particular factory in china. Do you think you could point me to the well documented stuff please?
dt
20 October 2015 at 3:25 am #2521
Alsdad
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@alsdad
Can Greg Jefferys’ blog be considered to be “well documented”? I think most of us here read it?

http://hepatitisctreatment.homestead.com/generic-daclatasvir.html

10th October entry.
20 October 2015 at 3:31 am #2522
Alsdad
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@alsdad
dointime wrote:

Hi SShady43,

As you are in the US I am guessing that you have a snowballs chance in hell of getting a letter from a US pharmacist confirming that they will encapsulate the API’s for you.

Anybody know if this letter for Rachel is just a formality to cover their ass at Mesochem, or is it a serious legal document that they must pack with the shipping documents for customs? Who checks it?

dointime

Price, who works with hepc+ US war vets, stated that it’s quite easy to find chemists who will encapsulate in the US:

http://fixhepc.com/forum/buyers-club-nodes/141-would-you-like-to-be-part-of-a-social-movement.html?start=36#1327

Post 1327.
20 October 2015 at 3:41 am #2524
dointime
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@dointime
Huh, so I guess it’s only the UK people can’t come up with those pharmacist letters. What a state this place is in.
dt
20 October 2015 at 4:51 am #2526
emilio
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@emilio
Hi Alsdad

And if it were me wanting APIs sent I would also provide Rachel with a GP script to tuck into the packaging just to be sure. Rachel will also put authentication docs in as well. Em
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