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Seymour Wrote
“Treatment guidelines provide indisputable evidence based recommendations on which medication is suitable for patients depending on genotype, fibrosis, treatment history, comorbidity,”“indisputable evidence”??
You have to be kidding Seymour.Ever taken a close look at the figures that make up these tx guidlines?Ever had to educate your GP where to look and how to interpret them?There is probably at least 10 people on this site who have more knowledge of tx requirements than the majority of GP’S in Aust.
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 otherwiseDarbara.
I am f3/f4.I am into wk 11 of Sof Dac Riba.I have elected to add another 12wks of sof dac(if it arrives in time from the Buyers Club) and another 6 wks of Riba,(which is when my Riba supply runs out,I don’t want to have to buy any more,and I fall a couple of wks short of it being on the PBS).
So that will make a total of 24wks of sof dac and 18wks of riba.
According to the EASL guidelines this is overkill.According to the AASLD guidelines its what is required.From the experts I get a mishmash of opinions.I want to be in the 95% plus success cohort.The Riba hasn’t been kind at times,but it hasn’t clipped my wings at all.My partner often asks when is she going to get the real Miko back.
What has been my biggest encouragement is a guy up the street that is 10yrs younger than me and who has Parkinsons Disease.I often see him painfully shuffling down to the shop.I look at his agony and think “what the hell have I got to winge about,at least I have a good chance of a cure,He has none.”
It is amazing how quickly time passes.It’s so little to put up with for so much to gain.
Go for the max Darbara and cut down your risk of failure to the minimum,and don’t even contemplate failure..
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 otherwiseJust hope the deal the Gov’t has done with Big Pharma doesn’t include a caveat to crack down on the importation of Hep C Generics.
No way the figures stack up in the short term.Methinks the Buyers Club is going to be needed for a long time yet.
Big Pharma has long tentacles and sharp claws.
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 otherwiseSo how does anyone other than the fund manager know how much is in it?
Just curious,as it is an interesting social experiment.
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 otherwiseWhere do you find the thermometer on the donation site?Looked everywhere
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“If it comes back just hit it again?” Just up the dosage?” etc. and she said yes, you’d basically just need to hit it harder for longer”
Thats only an option for a very select group of people.If a health service is paying,forget it.Even with generics it would be pushing the financial limits for a lot of people.
With a 24 wk tx length is there any evidence of the efficacy of changing regimes at the 12 or 16 wk mark?It is probably something that the drug companies would resist trialling for commercial reasons.
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 otherwiseGaj
I will recount my own visit to a Specialist before I began tx
I had not met him before.He was very friendly and polite.
Naturally the first thing I asked him was if he had anything against Generics.
He replied forcefully that he was all in favor of anything that could lead to a cure,he didn’t care what it was.
I had carried in a sheaf of summaries of trials and recommendations collected over months with everything pertaining to me highlighted.
He looked at the pile with a smile.I could see what he was thinking.”another smartarse” “what do you want to do”,he said ”
I was a little taken aback,but gave him what I thought IMHO were my options.
“Right” he said “which one do you want to go for.
I Replied a little stunned.”This is not my field of expertise,I’m just a dumb layman on this subject,I was rather hoping for an expert opinion.”
He turned the open palms of his hand upwards and said,”All your options are good,take your pick”
Now this guy has quite a reputation,both as a Gastro and the field of Virology.He looks after many HIV patients.He had just come back from the Vienna conference,where the previously posted Video was recorded.
He went on to say that we are getting some stunning results from the new DAA’s,but everything is made difficult by costs and the reluctance of drug companies to cooperate on combinations, and we just don’t really know the optimal treatments.The rest of the conversation reverted to mutual mountain bike riding experiences,but I left with the feeling I might just as well seek out a Voodoo Priestess to slaughter a chicken and examine the entrails.
I am aware that this conversation probably detracts from Doc Freemans originall posting so if a moderator want s to move it.okay.
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 otherwiseGaj
I think this guys opening statement says it all.Its still” have a good guess ,and take your chances science.
In my own case the IDSP recommendations are as confusing and different as the EASL Guidlines.https://www.youtube.com/watch?feature=player_detailpage&v=oKeYXZjw9Rc
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 otherwiseAs someone with a background in physics and mathematics,I look at many of these results as representing nothing
but a confusing statistical absurdity.
2 examples of many
The Ally 3+ results. of sof dac +/- riba
It would appear that if you have f3 fibrosis there is no advantage in extending treatment from 12 to 16 wks.
If you have cirrhosis there is a 2% dissadvantage in extending tx to 16 wks.
That is until you look at the numbers involved which are so small as to represent a statistical joke.
How can they call this a scientific study?
When you look at the European GT3 study of sof dac +/- riba
for the child pugh class A cirrhotics it is positively harmful (-15%) in adding riba to the tx.
These are just 2 examples of many I can see in these results.
The cohort numbers are to small to offer any useful and meaningful help.
How can any physician offer a tx regime,based on anything but personal evidence based guesswork on results like these?
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 otherwiseWell that explains why the original 6mg of dac I got off Mesochem made the 100 capsules I got back from the compounding chemist.
I wonder why a competant compounding chemist didn’t pick up on that one as Declatasvir Hydrochloride was on the sealed packet?
Anyway I still got virus undetected at 4wks on the lowered dose,in case anyone else is panicking.
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 otherwisemaybe we should all send a xmas card to Gileads hierachy with the link to this great video
http://www.gilead.com/about/leadership/senior-leadership
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 otherwiseDo in time
You are making too many quantum leaps here to answer one by one.
It is true Gilead has no obligation to lower its price.Corporations Law requires a company to maximise it’s profit in the interests of its shareholders.Its not just Gilead.I have seen how agricultural chemicals banned in the first world are actively promoted in the third world.I have seen stacks of new asbestos roof sheeting in warehouses all across south east asia.Asbestos kindly supplied by Canada,with the excuse that if they don’t ,it will get sourced from Kazakhastan,so we might as well get the money.I have seen children playing in the dust of broken sheets,The promotion of sugar products,and the subsequent diabetes 2 epidemic far overshadows Hep C.The list goes on and on.And don’t even start on tobacco.
Corporations are as ruthless with each other as they are to their clients.It is a ruthless,merciless system that hides behind such meaningless epithets such as “Freedom,human rights,democracy”,and bomb into oblivion anyone that gets in the way.
Kindness,generosity,decency,have no place in their world.What they are doing cannot be considered a “war crime” because there is no defined war as such The rare Jonas Salk’s of the past are looked on as foolish abberants.And therein lies the problem.It is an human ethical problem for which there are not and can never be any laws.
As human beings we have an obligation to be nice to each other.It is incumbent on the ultimate survival of the human species.But no law can ever enforce this.If a car driver comes across a crashed cyclist bleeding to death on the side of a lonely road and says yes I will help you,but first sign over all your worldly belongings to me,he is probably not breaking any law,but if found out,would have to endure the derision and scorn of all decent people.Look what happened to that idiot dentist that shot the Lion in Zimbabwe.
And that really is the answer with Gilead.Hold it up to scorn and derision.Throw every kind of abuse possible at its lack of ethics.Support countries that say that when it comes to a life saving drug,stick your patent up your “fat corporate asses”Do what Greg and Dr Freeman,and all the others are doing and find ways of circumventing the process.It is the only real weapon.
Use any means legal or otherwise of breaching their defenses.
My real hope is that someone will come up with a biosimilar,which will really send them screaming in agony.I believe some European group is already searching 3000 existing molecules to find an effective replacement for sovaldi.
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 otherwiseThanx for the reply em.If anyone else,in the next 3wks, living in Aust (or NZ) wants to split a 12wk of sof dac riba send me a private message.
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 otherwiseemilio in an earlier post of yours.
” Talking with rachel from mesochem now to see if I can get 1/2 batch if not I’ll order a full course and go from there. . Em ”
How did you go with this enquiry,as I note you were at the time considering extending your tx to 18wks.
I am doing the same .Through circumstances too long winded to explain I am short 42 days of Sof,21 days of dac,and 18 days of Riba.
All quotes I have got (except for Mesochem),but including the Buyers Club,and Aust compounding chemists.resulted in prices that were so close to the 12 wk prices that I may as well get the 12 wks which will leave me with a heap to give/throwaway,which seems a waste.
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 otherwiseI have the same problem.Intense sleep with crazy vivid dreams for about 4 or 5hrs ,and then wide awake with the brain going like an out of control bus.
I’m convinced its the “speed like effect riba has on the brain”.I dug up a box of 100- 10mg of diazapan I had bought while in Laos 2yrs ago and never used.I find one cut in 4 with a tablet cutter.ie 2.5mg does the trick,and quickly puts me back to sleep..As far as can find out there are no adverse effects on tx,and I don’t expect to have to keep using them.
A period of deep meditation during the day seems to help too.Exercise too is important,at least for me.A day without it and I notice the adverse effect immediately.
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 -
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