Tom, something to think about tho, if you request signature and you're not home, it will set in the truck until driver's route ends,...could be 7 or 8 at nite. The stuff is refrigerated. The special pharm can give you and idea of when it ships and what day it will arrive. Fedx and UPS run the same routes daily, so it will come roughly around same time on delievery. I chose the 'no signature' . Just depends on your preference.

Good luck Tom.

Hi Tom,

That's the easiest approval I've seen yet! My medications were half the price and they refused to leave them without a signature and I recommend you do the same! I've seen too many packages left on the wrong doorstep, and this stuff is more valuable by weight than gold, so always have them hand it to you!

You should do very well on this treatment and hope you will share your progress with us. I wish you the best of luck!

Tig

After several phone calls and many questions, my insurance company has approved my prescriptions for Sovaldi and Olysio.  I am getting the first 4-week supply via FedEx on Monday.

Of all the questions, the oddest question was:  Should we send this No Signature Required?  FedEx can just leave it on your front porch.

TomF wrote:

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Hello!

I am new to this message board.  I hope to be starting Sovaldi/Olysio soon.  I am waiting for the insurance to preapprove.  (Fingers crossed...)

Tom

 

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 Hello Tom, welcome to the forum!

All the best of luck with getting approval from your insurance, it`s a great treatment combo.  Fingers crossed for you too!

Audreyanna wrote:

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No no no! I looked again and now it says Undetected!!! Don't know what happened but disregard all that. I'm thrilled!!! Omg I know what it said Before. Am I losing it or did they repost new results? I'm afraid to look again. Thanks everyone!!!

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 That`s amazing, Audrey, congrats!!    Who knows what happened... it`s certainly excellent news! 

Hello!

I am new to this message board.  I hope to be starting Sovaldi/Olysio soon.  I am waiting for the insurance to preapprove.  (Fingers crossed...)

Tom

Greg,

I just saw your news. I truly believe that you and everyone else with Hep C will have successful txt outcomes in the near future. Gone are the days of only interferon/ribavirin tx, with no alternatives on the horizon. Hang in there! You need to show me where the fish are biting when I get back to Gator country!

That's more than great news Audrey! Pheww, after the last couple of days and watching some bad news roll in, I was really starting to question the success of this tx. We win some and lose some but this is definitely a huge win! I know everyone here has a great shot at SVR within a years time, relapse or otherwise. 

Thanks everyone for sharing their lab results. 

That's wonderful Audrey!!! I was just going to ask if you may have read the previous test result by mistake? That happens so often when you get them all together like that. Whatever happened, it isn't important now, UNDETECTABLE!!!! WOO HOO!!!! Congratulations, this is great news. I bet you're having trouble keeping your feet on the ground after realizing this great news! I'm so happy for you! Continued good luck....

Tig

Yes, yes, yes!    Excellent news!   Next stop SVR.  

No no no! I looked again and now it says Undetected!!! Don't know what happened but disregard all that. I'm thrilled!!! Omg I know what it said Before. Am I losing it or did they repost new results? I'm afraid to look again. Thanks everyone!!!

I was thinking that when I got my last pills and they said I have another month. I called Univ. Of Miami but the nurse wasn't listening to my question and simply replied, "yes, it's  a 12 week treatment."  Guess I'll have to save that question for the dr.  I'm game if they are and my insurance is.

I'm just afraid the virus has become immune or something, to be exactly the same Viral load. But it hasn't gone up so that's strange too. Maybe they did post the last tests in error on the web page, if that's possible. I don't know but it's so upsetting like how can this happen with the odds they claim?! Thats what happens in small studies when the drug companies  run it.

Hi Anna,

I would suggest you ask your doctor if there is the possibility of extending your treatment out to 24 weeks? With your cirrhosis and previous treatment history, I would think that should be an easy decision to support. How are you on that idea?

Tig

I'll try calling tomorrow but they're so busy they will probably not get back to me until Monday, well, maybe Thursday if I call first thing tomorrow. The nurses know very little it seems. I'll call. All that I can do now.

Audrey

It could be a mistake.  Is there anyway to find out before next Tuesday?  That is a whole week away.

Thanks Isiscat. I've been doing everything right as far as I know. Been under a lot of stress as I had to make my only child move out and I'm lonely and worried about him.  But the hope this treatment gave me I thought kind of kept me from stressing as much as I would have. Who knows? I wonder about trial results too. I think they can be scewed. Just unreal how the first 4 weeks it killed one and a half million and the next it couldn't handle 15. Almost thought they messed up and sent the old ones since they're identical. Wouldn't that be a nice surprise?

Anyway, thanks for the support and kind words. Glad you were online as I needed someone.

I know Audrey.  It is painful to watch and even more painful to experience.  I do know that some docs are not even testing till week 12; perhaps it takes that long for some people to mop up the final few devils that remain.  

I think there is still reason to hope that this tx will be the one to work for you.  Maybe they will need to extend it a bit.  You are so darn close.  I know it isn't much consolation at the moment but the S/L combo is right around the corner.  Seems like that combo could finish the job without even breaking a sweat if this doesn't work.  You are so close, Audrey.  Hang in there dear one.  

I see him Tuesday. How can this be? So tired of the treatment roller coaster!

Hi Audrey:

What does your doc say about this?  I've not heard of this happening but hopefully others have and there was still a positive outcome. 

Well, finally got my 8 week viral load and it's the same as the 4 week. <15 detected! I have a bad feeling. :(

Hey Kurt,

Sorry to hear about your ticker, tocking an extra beat or two, but surprisingly enough, it happens more than some people are aware. They were concerned about my heart while I was on treatment and had a few EKG's during tx and even had to go in for another one last week because they continue to be concerned. So far, so good in that respect. My tx meds, in addition to some I was previously taking caused the concern in my case. Whether or not S/O can be the culprit, I don't know. But certainly medical treatment in general can have an affect on your overall health You need to not be terribly concerned because there are a number of things that can cause the condition, and they are easily controlled and/or corrected when they determine the likely cause. Many medications, including exhaustion can be triggers. Here's a list of common triggers that might be worthy of your thought. They will also check your blood work again if they haven't done a full screening recently. Of course, you can expect an EKG if they haven't done that already. Best to not sweat it and once they can determine what's responsible, you can plan on a quick resolution. Hang in there and rest easy my friend!

Tig

TRIGGERS OF ATRIAL FIBRILLATION

Emotional triggers

Physical exhaustion

Surgery or medical procedures

Dehydration

Sleep 

Hormonal influences

Caffeine 

Alcohol

Exercise

Medication

While it may put my half marathon on hold I will wait to see what the doctor says. I'm not having any problems with it and didn't even notice it but they did a EKG during my yearly physical and caught it. It didn't show up during my pre biopsy EKG so it occurred in the last 4 months.Kurt

O Kurt......so sorry......but my mom was under a heart docs orders and procedures and she lived comfortable for decades,.....hoping it all works out for you.

My EOT labs came back with VL undetected and everything else normal. However it seems that sometime during treatment I've developed Atrial fibrillation and have to see a cardiologist next week. They've put me on a beta blocker and a thinner until then. So a good news , bad news type week for me. Kurt 

Congrats Caryn & Barnacle on EOT!  PW your lab results look great - you are probably UND as I type this  .

Greg I am saddened to read about your relapse.   The ups and downs of tx are grueling.  Don't give up!

I sure hope you are right, Matt.  I just have a hard time believing that insurance companies are going to pay double (for 24 weeks) across the board for cirrhotics.

Even if the SVR rate for cirrhotics is 8 out of 10 the majority will achieve SVR with 12 weeks so why give them 24 weeks?  They are thinking about costs, and don't tend to think about what the individual is suffering.  Sadly, insurance companies know darn well that they won't be paying for liver transplants for most people, because there simply aren't enough livers to go around.  They will probably try to mitigate long term care costs by retreating only those who relapse. If some patients give up on treatment or die along the way, oh well.  Long term care costs will improve with SVR, but certainly will not be eliminated, for cirrhotics anyway.  That is the harsh reality of health care costs.

I do think this situation will improve as Rx costs decrease but there will be relapses, and other human suffering in the meantime, just as there has been suffering in the past 2+ years while Gilead refused to work with other pharmas to deliver a Sovaldi combo sooner.  This is about corporate profits--for pharma and for insurance companies--patients are incidental.  And our government is not protecting us as it should be against the corporate greed. 

Hey Isiscat

Appreciate yours thoughts but digging deeper into the breakout of Gt1a and GT1b along with cirrhotics we see that the the SVR rates are closer to 8 out of 10 .

There is the article that was released  on 6-27-14 about this very subject

http://hepatitiscnewdrugs.blogspot.com/2014/06/genotype-1-hcvinfected-cirrhotic.html 

This excerpt from the article explained further

-III ION-2 study of the same regimen in previously treated patients, cirrhotic individuals appeared to benefit more from the 24-week regimens than from 12 weeks of therapy (100% vs 82% to 86%, respectively). And in the phase III TURQUOISE-II study of the 3-drug regimen plus ribavirin in cirrhotic patients, previous null responders with genotype 1a infection also appeared to do better with 24 weeks of therapy compared with 12 weeks (93% vs 80%, respectively)

Also the lengthy articles from the NEJM on both studies concurred about the cirrhotic patients SVR results , primary focusing on GT1a cirrhotics with previous treatment the SVR goes from the low 80% on 12 weeks to almost 100% SVR for 24 weeks 

The cost factor will still be a wild card but its still less that all the expense with long term care and liver transplant, plus the price will moderate with all the new companies entering the market.

matt 

Matt Chris wrote:

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really if insurance approved some of the off label S & O that many of you have been on that was not FDA approved why would you have no faith in the 24 weeks of SOF & LPV.    

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It isn't really a question of faith.  It is a question of what is cost effective.  Based on clinical trials 12 weeks of the S/L combo will result in SVR in roughly 9 out of 10 people even when they have substantial liver damage.  Why pay for all cirrhotics to have 24 weeks when 12 weeks will be adequate for the overwhelming majority?  Adding the extra 12 weeks not only doubles the cost of the Rx  but increases incidences of adverse events, and therefore, increases medical and hospital costs related to tx. 

The gt3s are distinguishable.  They don't have 9 out of 10 odds with only 12 weeks of the Sovaldi/Riba combo.  Additionally, the Sovaldi/Riba combo is much less expensive than the S/L is expected to be.  

Hard to say how it will play out but I doubt 24 weeks will be the protocol for most even where they have substantial liver damage.  24 weeks may be a possibility but it will probably be a lottery that depends on the physician and the insurance company one happens to have.  Pretty much like what we are seeing now, at least until costs come down and there are enough relapses to justify the additional 12 weeks.  Wayne is right: unfortunately, there will be people in the US "falling through the cracks"--not receiving the individualized tx they need-- due to costs.  

Greg, I am so sorry for the major disappointment.  Having this setback is just that...a setback.  You will be Hep c free one day soon. These newer medications are potent.  As a few people have said already, you might need to be on the medications for 24 weeks and maybe riba, but the virus can be beat with the right protocol. 

Also, as Matt mentioned, you need to have the VL repeated because there is always the chance of an lab error. 

We are all pulling for you, Greg. 

OldenSlow wrote

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Yeah, that's the way I see it playing out. There will be some very sick folks continuing to fall through the cracks due to ongoing bottom-line issues. Also, additional to Greg, Darkstar and Matt's AbbVie relapse, there have been a few others reporting in as having failed newer DAA trials, including one gentleman on the Electron S/L combo (forget his name). If memory serves, he was retreating with S/L + riba.

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I believe your referring to RH and he was on the ION 3 trial with SOF & LPV for 12 weeks and relapsed and is now redoing 24 weeks of the same.  

The key for 24 weeks will be is if the FDA approves it like they did for GT-3 for 24 weeks , really if insurance approved some of the off label S & O that many of you have been on that was not FDA approved why would you have no faith in the 24 weeks of SOF & LPV. Most of the general HCV people and its community doubted that any off label use of S & O would ever be approved but hear we are and that thankfully never turned out.

Lets keep the hope out there and thinking positive we all need it.

matt    

Thats so sad Greg.  But didn't you have the same thing happen earlier in your treatment and when you talked to the dr. he confirmed you were still undetected?  Something about the lab results were wrong or confusing or something?

 I'm awaiting my 8 week bloodwork - got it all today except the viral load.  I get mine online also and was kind of freaking out when it was the only test not there.  Its making me nervous as my 4 week was almost but not quite undetected (15, which is the cutoff).  My ALT and AST are still slightly elevated and platelets came up slightly but still 90 and low normal is 140.  

Anyway, hang in there until you talk to the dr.  Maybe it's ok!

I'm sorry to hear that Greg.  I know from experience what a big kick in the gut it is to get that news.  You have the better meds coming to look forward to.  Also at the very least you gave your liver a break from the HCV for 12 weeks which can't hurt.  I hope things turn out ok with your job & insurance.  I'm familiar with that stress too.  I'll be pulling for you.

Isiscat2011 wrote:

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I expect insurance companies will balk at 24 contiguous months.  

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Yeah, that's the way I see it playing out. There will be some very sick folks continuing to fall through the cracks due to ongoing bottom-line issues. Also, additional to Greg, Darkstar and Matt's AbbVie relapse, there have been a few others reporting in as having failed newer DAA trials, including one gentleman on the Electron S/L combo (forget his name). If memory serves, he was retreating with S/L + riba.

Hey Isiscat & Greg

Depending what your liver condition is and which DAA's you have been exposed to and how long you have been on treatment goes into each doctors recommendation. My my case all three of my Doctors, one ID, and two Hepatologist  concurred 24 weeks plus riba so every situation has to be looked at individually, The doctors recommendation is what has the most convincing power along with FDA approved dosing protocols, so lets hope they have a 24 weeks allowance for particular hard to treat patients.

matt     

Tig56 wrote:

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You're the first in our group that I'm aware of to relapse on this protocol. 

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Well, Darkstar relapsed.  He was positive for the Q80K and had used first gen PIs, though.  Also, he is a 1a.  

My doc didn't suggest either riba or 24 weeks for the S/L combo and I'm a bit concerned about that.  Still a bit early to say what the protocol will be in 3 months, though.  I expect insurance companies will balk at 24 contiguous months.  

Discouraging news, Greg. Not much I can say that hasn't been said, but my heart goes out to you. I'm with others in thinking you should press for longer tx time on the next go around. Some of us aren't going to fit so easily into conventional treatment timetables. And I've yet to see enough data to convince me riba can be excluded in all cases. Hopefully it can.

Be as healthy as you can be and press on. We'll be here.

wayne

Hey Greg

It truly was disappointing to read of your relapse, your doc will likely have you re-checked because it has happen that reading can be wrong. If not, your a candidate like myself for Gilead's new combo of SOF & LPV but try to get it for the 24 weeks as the percentage of SVR then will go to about 99%.

I know its depressing but better days are coming and not very long to wait.

matt    

Hi Greg:

I'm so sorry to hear this but try not to be disheartened.  Whatever happens with your job you should be able to get coverage under the Affordable Care Act and there will be patient assistance programs. You know there are some great combos coming soon and I have no doubt you will be able to get in on one.

Knocking back your viral load, even for a while, is a good thing.  For me it helped with some of my hepc extra-hepatic symptoms.  Also, my viral load still hasn't climbed back up to where it was (11 million) pre-treatment in >2 years.  

Hang in there, pal.  Everything will work out.  

Grouper,  I'm sorry to hear that news. I am interested to know what your doc suggests.  Txs are indeed changing for the better. I know it's easy for me to say, but try to stay positive. My hopes are with you GG.

Hi Greg,

Bad luck mate. Probably 12 weeks wasn't enough in your case. I'm not sure of your liver status. You mention 'bridging fibrosis' which is at least F3.

The good news is you can retreat with Sovaldi, probably with Ledipasvir. I hope you can get the Insurance sorted. Cheers, life's not meant to be easy!

Just seen this post...thought I'd share

"ok lets get things straight I did not vote for the man but I am defiantly reeping the rewards of the Obama care ! I signed up  the first go round an immediately went to the doctor an got diagnosed with hep c my doc put in for solvaldi ribavirin an peg pen the blue cross blue shield went ahead an paid for it the first time an I had a 5 dollar copay the next month blu cross told me I had to use their pharm  I got same drugs this time no co pay ! sooooo I urge you get Obama care an get cured I could have never afforded it on my min wage good luck an I hope this helps many ! 

Happy to hear your on your way to a virus free life PW.. Best wishes to a happy and healthy life!

So sorry to hear the disappointing news Groupergetter.. It really is heartbreaking. Thank Goodness there are new meds on the horizon. Try not to be too sad, think of it as your liver getting a well deserved break .. Til the next treatment that will knock that virus for a loop once and for all.  

The S/L combo will work for ya, you may need the riba too this time. but youll get it.

We are all in this together Keep your stick on the ice(Red Green Show)

Fireman Rob wrote:

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Groupergetter,

Maybe the count will go back down UND as it's only week four? What did your doc say? Aw, man, my heart really goes out to you. This is devastating news just to read. Hang in there friend and let us know what the doc says and if nothing else, October is almost here!

Hang in there Friend!

---

Haven't talked to my doc.  Just got the results this evening.  Definitely disappointing. 

Hey Greg, 

Sorry to hear your news. You're the first in our group that I'm aware of to relapse on this protocol. What was your doctors response?  Right now I would recommend getting back on track and clearing yourself of these medications. Don't try and figure it out today, give yourself some time to recoup and recover. You'll be able to fight this again another day. You know that these protocols are going to get better and better. Your day is coming, that is something you need to believe. This isn't your fault, it's a failure of the medication, remember that. Hang in there...

Tig

PS: don't worry about the thread

Groupergetter,

Maybe the count will go back down UND as it's only week four? What did your doc say? Aw, man, my heart really goes out to you. This is devastating news just to read. Hang in there friend and let us know what the doc says and if nothing else, October is almost here!

Hang in there Friend!

Well............ got my 4 week EOT labs back today.  Good news and bad.  Good news I'm still here, bad news no longer UND.  Viral load climbing, hoping it doesn't explode.  Guess the Sovaldi and Olysio didn't make it for me .  Truly hope others find better success.  I have concerns that the job I've for over 25 years is about end and I won't have coverage when the new combo's come out.  Tomorrow is another day.  For all those on treatment don't give up hope.

My apologies, if this should be in Post Treatment I can delete and repost.

-- Edited by Groupergetter on Tuesday 1st of July 2014 02:21:01 AM

Of course you're all right.  I just wasn't thinking clearly - I'm kinda foggy today.  I know there have been lots of people that didn't respond nearly this fast and still got SVR.  I'm very happy and looking forward to the 4wk results next week.  Thanks all.

Hey PW,

I'm in complete agreement! I'm seeing more and more reports of the first undetectable's coming in at 4 weeks, many are out to 6 weeks. For you to show a multi log drop at 2 weeks is incredible! You're on your way my friend! You've every reason to be thrilled!

Tig