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1751426 tn?1399007484

canadian options

It was a while back in November that my specialist told me I should wait for better treatments to come out in 2014.   He told me because I am GT1a and failed my clinical trial with a study DAA from Boehringer Ingelheim, no matter what treatment I am prescribed it would have to include interferon & ribavirin.  I am hearing so many success stories with the all oral combo's and the advent of a new drug later this year I wonder if this still holds true.  Not only was I one of the unlucky 17% that did not achieve SVR I had severe side effects that I never fully recovered from and in addition I am now dealing with FMS.  My question I guess is, has anyone in Canada done a combo tx without interferon and what is this great new drug about to hit in the fall?  I would like to treat again but without interferon or ribavirin and the cost will mean I only get one stab at this so I want to get it right.  Thanks.
10 Responses
Avatar universal
I was geno 1a.
I did several treatments with peg-interferon and ribavirin (peg/riba).
One treatment included celgosivir with peg/riba.
One treatment included a protease inhibitor (DAA or direct acting antiviral) telaprevir (incevik) with peg/riba.
I did several peg/riba only treatments before they defined the null responder (I was a null responder).

I succesfully treated with Sovaldi/ledipasvir and ribavirin in 2013. Now cured.
MANY who had been treated with a protease inhibitor, (incevik or boceprevir, both DAA's) , PLUS peg/riba  have been cured with sovaldi/ledipasvir.

It depends on what DAA you were on previously. You may have developed resistant strain of virus if you failed therapy with it (although the virus tends to revert to "wild type" within a few years there are always a few that will carry the resistance). If you were given an NS5a inhibitor it is possible you have virus resistant to other forms of NS5a inhibitors such as Ledipasvir.

If you have been given a non-nucleotide analogue polymerase inhibitor, you may have resistant strains to other non-nuc polymerase inhibitors.
Sovaldi is a Nucleotide analogue polymerase inhibitor, I do not think there have been treatments with this type of compound in the past (unless you were in a clinical trial).

So, having failed previous attempt with DAA does NOT mean you have to go the peg/riba route. That is a bunch of rubbish.
Either you have gotten what the doctor told you confused or the doctor is not well informed.
GET ANOTHER OPINION!

Many have failed previous treatment with DAA or DAA with peg/riba and been cured on Sovaldi/Ledipasvir in clinical trials throughout 2013.
I'd say success rate for patients who previously failed treatment with peg/riba and a protease inhibitor is in the high 90's percentile when treated with Sovaldi/Ledipasvir with or without ribavirin.


Cheese

Avatar universal
Forgot to add...  sovaldi and ledipasvir is expected to be approved for sale in the fall of 2014. Not sure what date Canada will approve but it should be about the same time, maybe within a few months.
Avatar universal
Just checked your profile.
You say you treated with Peg/riba and BI 201335 (a protease inhibitor).

I am not a doctor but I do believe I know what I am talking about.
You are an EXCELLENT candidate for Sovaldi/Ledipasvir with riba... in my opinion.
3230925 tn?1397615965
  Alas in Canada we are far behind when it comes to new meds and treatments.I treated in 2012 in BC at a well reputed research clinic.In 2012 they were doing trials with incivek  in the meantime it was on the market in many countries around the world.The protocol is treat with treatments that are available and dated if that doesn't work and if your lucky you can get on a trial on a treatment that is already on the market
in many countries but not here.I blame the complacency of our universal care system.
1751426 tn?1399007484
Thanks for the responses and yes my study drug was BI201335 with peg & riba.  I did not realize how valuable my "naive" status was, cause now that I am a relapser no one wants to know as far as clinical trials go.  My specialist now is one of the leading GI Dr.s in Vancouver at St. Paul's Hospital and my initial clinical trial was headed up by Dr. Yoshida at VGH.  My best bet is another clinical trial but there are none for those who fail.  It is hard to hear about all these lucky people who are getting all oral tx with little to no side effects and I am left out in the cold while my liver progresses to F2-3 (fibroscan).  It is ironic that 15 years ago I was told to wait because I wasn't sick enough to warrant tx and now that I am really sick I can't get the best available tx.  I may try contacting the drug companies directly for compassionate release or look for any new trials.  Are there other options?
1689583 tn?1387752394
I know what you are going through I live in Quebec and seen my hepatologist yesterday . I am F2 and we have been waiting for these amazing cures and with dismay our provincial government's here in Canada have not approved any of them yet . It is still the S.O.C here , the older treatments.  I have contacted Gilead and my specialist is sending the forms to my insurance company and Gilead to see if I can get approved. I am GT1A interferon ineligible . It is very discouraging for us who live in Canada to see everyone curing themselves of this devasting disease and we are still way behind the 8 ball.  I will have to now wait and see what happens . It is very heartbreaking unless you have the money to pay for these drugs that is the only way . There are not any clinical trials done here neither, it is mainly the U.S and Europe. Let's hope our government's realize that the price of these drugs are priceless in comparision   to the many lives that can be saved  I have cried many nights over this , and I pray for a miracle for all of us .
1689583 tn?1387752394
I am also tx naïve.
3230925 tn?1397615965
Oh my i miss Quebec,I've been in BC for 14 years now.In BC they do have trials on new meds,but like I said on drugs already available in the US and other countries.The reason being BC has the highest amount of folks with Hep C in Canada,given the high amount of IV drug addicts.


To WTBleep.....You're in Van right try your luck at the Lair center they always have new trials that are a bit dated on the newest drugs.
Avatar universal
Hang in there. A few more months and Sovaldi/ledipasvir will be available for use in Canada.
Though you may have to wait a bit longer if you expect provincial medical insurance to cover it.

Cheese
1689583 tn?1387752394
I can only imagine the cost of that combo, yikes.
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