Hep C Discussion Forum

That is great! We will pray for continued success and that you feel better with each passing day!

One day this will just be a time in life to reflect on instead of worry about.

All the best to you !

Duane

Am  not well at all, I think this is because the chest and kidney infections I had did not clear up and are causing problems.  My GP tried to send me to the Acute Med ward today but I managed to persuade her against it as they don't know anything about these drugs and would probably end up killing me off.  Will keep you posted.

Nirmalee

Dragonfly, 

Thanks for your posts and good luck to you. 

Hi dragonfly:

I have high sensitivity to most drugs so I get weird side effects too.  There are always going to be side effects that aren't listed especially on new drugs.  Most side effects will be transient and not serious. If you feel like the weird things are serious, however, get medical help right away.  Even the "safest" drugs can be harmful to some people.  You already know this I'm sure.  

I think you are right to have confidence in this combo.  Granted, most of our information is coming from pharma (and I trust them as far as I can throw them) but Sovaldi has been in the US market for almost a year and so far it is still looking safer than any hepc drug we have seen before according to a few independent sources as well as people who have taken it. 

Hang in there!  

P.S.  Don't young people read Steinbeck?  Sheesh, what is the world coming to?  

Hi everyone,

I have had a weird reaction to the new drugs but my GP told me that in the UK most of the trials have been on cute bunnies, mice and men.  I tried to make a joke about John Steinbeck but I think he was too young to understand!  I remain convinced that this is my best chance.

Hi Jill,  The Riba is making me feel quite sick but I have excellent support from my partner.  I had promised my nieces that I would take them to the Tower of London last night (we know the Yeoman Warders) which probably was a bit optimistic.  We saw the poppies and they were able to go to the Beefeaters bar and have their pics with them and wearing their hats and gloves!  It was well worth feeling rubbish.  Even though it is early days I feel this is working, I now no longer have referred pain in my shoulder and the pressure from my liver is subsiding - I hope everyone who needs this treatment gets it.  Hang on in there.  Nxxx

Very reassuring words from your consultant, Nirmalee  ""we are throwing everything we can at it"!

Apprehension about starting a new treatment and having blood draws done all on the same day is certainly enough to make you feel drained and a bit poorly, as well as the initial dose hitting your system.  How are you feeling now?  Keeping my fingers crossed for an easy ride! 

I`ve just logged in to see how you were doing, Nirmalee...well done for taking your first dose!  I know you must have been feeling apprehensive  but you did it and you`re on your way now.  Even though you`re taking ribavirin again at least this will be a shorter treatment and the side effects should be so much easier for you this time around without the peg shots. 

Wishing you all the best of luck and do keep us posted with regular updates!  Jill x

Tomorrow!

I did a clinical trial 5 years ago with BMS interferon and ribravirin- relapsed

 I also just relapsed with solvaldi with those two.  

I am wondering if i will be elligible for the solvaldi - daclisivar in october???

Hi Nirmalee, sounds like you had a wonderful holiday...just what you needed to prepare yourself for the next round!  This time it will be so much easier for you though than your previous treatments, and no shots to do!

Best of luck for Thursday, how exciting! 

Bills wrote:

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Hi Jill

Just read that article on the          

            Compassionate Use Program  http://clinicaltrials.gov/ct2/show/NCT02097966

This is the way it should be as a minimum world wide

In the US they ask 1. Whats your name 2. What insurance you have?  And it's not just Hep C it's almost everything from Cancer to a broken arm to a knee replacement. I always side with the underdogs. Whats right doesn't matter here is Money and stacking the deck for the rich and powerful. America should be doing better in this area.   LOL there I go again 

Good luck Nirmalee a Higher Power has seen your desperation 

Peace 

BS 

 

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 I agree Bills, 

Hi Jill 

I apologize for my passion here This subject is sensitive to me because. The Trial I was on  treatment failed and  I had continue another round with with Incivek when it was possible that I could have pushed for  Solvadi / Delatasvir  but Gilead canned it That's why I said if I'm reading this right, I tend to jump out at things.

And more appreciative that Nirmalee is getting such a great treatment.

Anyway  I am on line for the one pill, I even asked for an Oct 10th Appt. but my doctors only in on Mondays LOL 

I am quite certain that Solvadi- Ledipasvir will do the trick and is my best option and thank God it's here very soon. every thing I have read and been told is this is almost as good / just as good etc. I'm counting days like I'm in Jail. 

I've been reading this last 18 months there were still many people here presented with the combos still using Riba and Intf.   And the partial Riba / Intf  did work for many here. Just such a drag about the side affects and unknown long-term use of interferon. We are all different G-Type and liver damage. It's a great day for all the newbees the worst is over.      And today is     HEP C DAY      GOOGLE  it there's lots of articles.

Thanks everyone and good luck to all in TX  hang in there 

BS

Isiscat2011 , thank U so much for Dac+Usunapr news!

I had no idea that this commbo is already approved in Japan. Great news!

Hi Sssveta:

I have no idea about pricing.  D/A has been approved in Japan.  Here is some information about it: http://hepatitiscnewdrugs.blogspot.com/2014/07/japan-approves-hcv-daklinza-daclatasvir.html

Here is some more information about what the drug manufacturer BMS is up to:  http://hepatitiscnewdrugresearch.com/daclatasvirasunaprevirbms-791325.html

Hi Bills:

Gilead is the one in the news; they are spending the most to make sure of that.  "Any press is good press" so even when the news is complaints about costs, Gilead gets to respond "Yeah, but we are that good! That's why we can charge so much."  The public wants it even more!

If you want to find info about Abbvie, Merck, or BMS drugs you have to dig, because they aren't out front and center advertising.  But the bottom line will be what docs prescribe and what insurance companies pay for. 

We all know that the S/L one pill combo is scheduled for approval Oct.10.  From what I have gathered the Abbvie combo should be approved in December. BMS has filed for FDA approval for its Declatasvir/Asunaprevir combo, which will be two separate pills, and has also been FDA fast tracked.  It will probably be available by the end of 2014 or early 2015.  Mercks combo will come later, probably well into 2015 or 2016.  

So, by the end of 2014 and into 2015 docs are going to have some prescribing options because there will be the Gilead combo, the Abbvie combo, and the BMS combo.  Olysio will also be in the mix but it isn't likely to get much play.  The old standby Riba may still see some action for certain HCV populations. If the BMS combo is ONLY approved for use together (Declatasvir + Asunaprevir) then docs would have to go off label to prescribe Declatasvir + Sovaldi.   Off label is usually harder to get insurance approval for.   Also, docs may not get their first choice of tx if insurance companies opt for something cheaper that has similar efficacy profiles.

In summary, you could be waiting a while for the Sovaldi/Declatasvir combo in the US.  That's my take on the situation.  

Yes, there are still Phase III trials going on.  She was probably on one of those.   

JIme wrote:

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It's the best combo to date that I know of. I guess they are selling the drugs separately now. Gilead made their own version of Datclatisvir but it is not as good as the BMS original that you are getting. 

_________________________________________________________________________________________________________

Sovaldi is FDA approved but Declatasvir is not.  Gilead refused to work with BMS and opted to make its own NS5A inhibitor, Ledipasvir.   The Sovaldi/Ledipasvir one pill combo is scheduled for FDA approval October 10.  Meanwhile, on April 7, 2014 BMS applied for approval for a different combo: Declatasvir (an NS5A inhibitor) and Asunaprevir (a NS3 protease inhibitor).  The BMS combo is likely to be approved in late 2014 or early 2015.

The Sovaldi/Ledipasvir combo has gone through more clinical trials than the Sovaldi/Declatasvir combo and the SVR rates look fairly close. However, it is certainly possible that neither the Gilead nor the BMS combo will work as well alone as they would have together.  Only time will tell.  It is quite possible docs will begin prescribing Sovaldi and Declatasvir off label after Declatasvir is approved.  Much will depend on cost.

Interestingly, BMS is looking more to the European markets and has also already made a deal with Japan for the D/A combo. Europe may see more of the Sovaldi/Declatasvir combo than the US does.  I expect the US will also see more relapses since our market is profit driven while theirs is more health driven. JMO. 

It's the best combo to date that I know of. I guess they are selling the drugs separately now. Gilead made their own version of Datclatisvir but it is not as good as the BMS original that you are getting. Another friend of mine was on this combo too. She cleared the virus and just ended tx last week. First time in 35 years she has been free of the virus. She had a little dizziness after taking the meds for a few minutes, that was it. As you remember I had Zero sx during my tx with the same drugs plus riba. They said the riba did not make a difference. Everybody cleared with it and without it. It's an amazing combo. I'm so happy for you.

Btw, How was Ozzy?.....lol......

Thank you everyone for your support.  A whole new journey beckons and a new life begins! We are off to Iceland next week life is amazing and I'm so happy to have been given this.

Hi Nirmalee,

That's daclatasvir, a very good NS-5A blocker. Congrats- that's a great drug combo, and we'll be keen to follow your results. Cheers.

Hi Dragonfly, what great news!!  You`ve had a long wait for an opportunity to do an all oral treatment and it`s wonderful that drugs like Sovaldi and Daclatasvir are being made available in the UK and elsewhere in the EU for people in the most need.  This will be through the compassionate use programme from BMS I take it. 

Do you know yet whether you`ll be taking ribavirin too? 

So pleased for you...do keep us updated!