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Dear Dr Freeman,I was once married to a doctor,I have a brother who is a doctor,and several others that are close relatives that are medicos..None know I have this virus.One thing I learnt from them all was that if you have a serious illness always get a second and even a third opinion,so I hope in posting the following i am merely trying to add to the pool of knowledge and not challenging you in any way.
The folllowing is an email I sent some time ago to Prof Graham Foster,who you may remember is the author of the much posted you tube video. on Ribavirin.“Dear Professor Foster,
I am writing on behalf of a number of patients here in Australia who have all watched your excellent you- tube video “which DAA’s need to add Ribavirin.”
And carefully taken note of your advice.As f3/f4,f4 cirrhotic Hep C patients.
We acceot a regime of 24wks of sofosbuvir and Daclatasvir or sofosbuvir ledispovir is necessary.
It has also suggested adding 12 wks of Ribavirin as being sufficient,and efficacious for max effect..The question that concerns us is this,and we would like your opinion as an expert on Ribovirin
1. Is 12 wks of Ribavirin along with the 24 wks of the other DAA’s sufficient for maximum effect.
In other words does 24wks of Ribavirin have any added benefit over 12wks if the other DAA’s are continued for 24wks?2. It has been suggested to us that it would be more efficacious to take the 12wks of Ribavirin in the last 12wks of treatment,rather than the first 12wks.
Is there any scientific basis for this?
Since the range of possible options is up to us to decide we urgently seek a second expert opinion.I apologise for intruding on your time,as I am sure you are extremely busy.
But your expert opinion would be very much appreciated.”To my complete surprise I received a gracious reply.
“Thank you for asking for my opinion
We don’t really understand how ribavirin works and we don’t really know the best way to use the drug so it is hard to give an evidence based answer.
My own personal approach is to recommend that for treatment regimes where ribavirin is needed (and for many Genotype 1 infections it is probably not needed with the new DAAs) the best thing to do is to take full dose ribavirin for the full course of therapy. This may be overkill and may (will!) cause a few more side effects but treatment failure is devastating and reduces future treatment options so I think most patients prefer to struggle through rather than have to go through a second course of therapy.
If the side effects really are dreadful then stopping ribavirin early is clearly necessary and it does not seem to have major effects on response.
I hope this is helpful and am sorry to be so indecisive.
You will appreciate that I am writing in general terms with a personal opinion and you should discuss treatment choices with your doctor as the need and tolerability of ribavirin is very personal and differs from person to person
Good luck with your treatment
BW
Graham “
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 otherwiseJohnboy.We should be very grateful at the growing number of GP’S and Liver clinics that are supporting the use of generics.
But I cant believe any sane GP would be willing to monitor your tx with sim knowing how you got it.Nor have we any right to expect them to.
Much better a safe source of generic simeprevir that can be tested is found overseas.
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 did some time ago try to find out if any followups were available.I emailed the Texas Liver Institute and got nowhere.I was hoping something might be presented at the AASLD conference.The important thing to realise is at normal prices the combination is totally impractical because the cost is getting up towards the cost of a liver Transplant..However,if you are talking generics it is an option that could well be investigated further,and I was more than willing to try it.I am wondering if Dr Freemans suggestion of using riba for only the last 12wks of a 24wk tx could also be replaced by using simeprevir for say the last few months if a generic source could ever be found.
Johnboy,I think you are mistaken that simeprevir is readily available on the PBS.My specialist showed me the restrictions and formfilling that he would have to go through to get it.One is that it has to be used in combination with Peg INF.Dr Freeman has posted these impossible restrictions elswhere.It is certainly not available on the PBS for use in combination with overseas aquired generics.
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 otherwisehttp://www.natap.org/2015/EASL/EASL_30.htm
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 it looks like my question was partially answered 1 min before I posted.I think it would be necessary to pay to have any of those selections tested before taking them,unless someone else has had experience of their probity.
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 otherwiseIs generic Simeprevir available ?
I wish someone could answer that question Paul.Before begining tx on 24wks sof dac riba I tried everywhere to find a source of generic simeprevir to replace the riba.My specialist was not against the idea even though he pointed out the data on the combination was thin .There is a trial in place at the moment called the Impetus 2 In the end I had to stick to the riba,which fortunately,so far,has not been the problem I expected.
Dr Freemans idea of taking the riba in the last 12wks or less, is a novel one.It would be interesting to hear an opinion from Graham Foster,the riba Guru on that one.
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 otherwiseThere is possibly another reason for Australians to buy their medications now apart from the horror post of Dr F.
It is almost inevitable that sooner or later the American Federal Reserve will raise interest rates in the USA.The prognosis is that it will occur sooner.It is also likely that our institutions such as the Banks,BHP etc will not be able to continue paying the high dividends that have attracted so much foreign capital to Aust.The net result will be a fall in the AUD relative to the USD.The RBA have often stated they would like to see it fall to around $65.Many involved in the inward tourist industry,and exporters would like it to fall much further.
So as the future outlook appears now,if you have not bought your medications,and they are priced in USD it would be pragmatic to buy them sooner rather than later otherwise you could be paying quite a large amount more.
Of course in finance nothing is ever certain.
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“A persuasive individual should be able to get them to fund generics.”
Good luck with that one Berrinice.Will be delighted to hear that someone actually succeeds.
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“Let us own and provide “treatment for all” stance.”
I agree Berrinice.I am not super wealthy,but I would not object to a small surcharge on each hep med purchase to help
someone who genuinely cannot afford it,and needs it.If I reach SVR I will certainly be willing to make a gratitude donation to a charity that supports this.
It doesnt matter how you got Hep C,not everyone got it from drug use,there is no heirachy of shame in this.The most costly, dangerous,socially traumatic and PBS money consuming drug in Australia is legal,and the second most treatment costly is also legal.
At least their stance in Canberra from Dr F’s account does not appear to be anti generic.In fact if they are not rubbing their hands in glee
at the growing numbers paying for their own treatment they must be really stupid.
Thanks ,Dr F for giving up your time to wallow in the cesspit of beaurocracy.It must have been a frustrating experience.
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“Its diwali festival in India so all closed this whole week ”
since when did all India close down for Diwali.Certainly not in the 2 times I have been there during this festival.
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 otherwiseFrom this video which has been posted several times already, it appears 12wks of riba adds about a 5% advantage in cirrhotic or hard to treat patients.
So far I have not been able to find the answer to the question of whether 24wks of riba has any significant advantage over 12 wks.
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 otherwiseThank you to all for posting the latest guidlines,and best wishes to PanamaJo on your journey,but there is something that puzzles me.
It seems the evidence is there that in this particular case sof dac riba for 24 wks is a recommended tx.
But one presumes that by wk 12 vl is 0, amd continuing for another 12 wks is a proven choice when cirrohsis is present.
But why add the riba for the extra 12wks.I would presume that by this time the continued use of riba , considering it is a very weak DAA is adding very little compared to the first 12wks of its use.When one considers the negative side effects of riba on the rest of the body,is its continued use justified?I have so far been unable to find any statistical evidence justifying its use beyond 12wks,or is just wild speculation that excessive overkill is best,without any real data.
If the data is there I would love someone to point to it.
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 otherwiseHas anyone got Mesochems latest prices for Hep API’S
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 otherwiseCJ
Thanks for educating me on the iron iissue,on which I was a little ignorant.One of my personal reasons for taking Kale was that
my diet is largely vegetarian,and Kale does have a lot of other useful vitamins and minerals.One of the very noticeable symptoms I have had since starting tx is intensely strange and vivid dreams.It is sometimes a welcome relief to wake up.I would have been able to give Freud and Jung enough to provide a whole extra book.
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 otherwiseC j wrote
it’s a good idea to stay clear of Iron, this is bad, the hep loves it.
So maybe go easy on the kale.CJ can you point me to any info on the” avoid iron bit”?.I was always under the impression iron was essential to the creation of red blood cells that the Riba is simultaneously knocking out.
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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