Old 11-16-2007, 11:46 PM #16 (permalink)
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My mum was given Rilutek in March 07 after her diagnosis. Her first symptoms were Oct. 06. Our understanding at time was that it might extend her life 3 months for every year she lived. She takes Rilutek 2 hours after food (so, in fact on an empty stomach) and at least one hour before her next meal. We have NO clue if this drug is doing any good at all. My mum believes and therefore she receives. To the best of our knowledge it has made no difference at all... then again... she is still alive.
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Old 11-17-2007, 12:39 AM #17 (permalink)
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The biggest problems with Rilutek are the Price and the fact that most insurqance ( in PA at least ) will no longer pay for it. I can simply NOT aford it if it has to come out of my very depleted bank account.

What I can't understand is WHY the ALS Society hasn't done anything to help us get the meds. Rilutek is the ONLY medication for ALS, but the ALS Society can'can't do anything to help us get it.

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Old 11-17-2007, 07:33 AM #18 (permalink)
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Both NORD and Medicare will pay for Rilutek. If you are a veteran the VA can supply Rilutek at $24 for 3 months. If you get category 4 with the VA its free. My insurance which is Idependence Blue Cross out of Philadelphia covers Rilutek. I also read somewhere about the Caremark program through CVS but can't remember the details on that one.
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Old 11-19-2007, 06:56 PM #19 (permalink)
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Hi- My mother in law was diagnosed 2 years ago and I'm sad to say that she could probably go anyday now. I personally think you could give an ALS patient a cough drop and it would be as helpful as Rilutek. It has never helped and is very expensive. I think it is a scam to get money from people who will do anything to give extra time to their loved one. Just my opinion though. My thoughts are with you. What a horrible disease!
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Old 11-19-2007, 07:00 PM #20 (permalink)
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FYI- She is still taking rilutek...
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Old 11-20-2007, 01:44 PM #21 (permalink)
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Hi jakk. Sorry about your mother in law. The thing with Rilutek is that you DON'T know if it IS working. It's not like a medicine for a rash that goes away when the med works. How do you know your mother in law wouldn't have passed away a year ago without the Rilutek? A lot of patients last less than a year and some took Rilutek, some didn't. Some like me take Rilutek and last 4 years and longer.
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Old 11-20-2007, 03:12 PM #22 (permalink)
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You are right- I don't know. You sound like my husband. But they told her she had 2 years and that seems to be exactly how long she'll make it. I think I've just been a little bitter about rilutek all along because it costs so much money...If it's why you have been allowed to live for 4 years-then Praise God!
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Old 11-20-2007, 05:57 PM #23 (permalink)
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Default Rilutek issues

I have to agree about Rilutek being a money-making item, but from here it looks like much more of what passes for ALS care is the same. I am in Central Penn. and when I started taking Rilutek 2 1/2 years ago my local Capital Blue Cros covered it. Last year they dropped it from the formulary and I had to search all 70 or so of the Part D Medicare providers to find the ONE who still coveed it - and incidentlly didn't have a :donut hole"

Now this year they also dropped Rilutek, and the "donut hole" is back. So what to do ? NORD does not supply anything for ALS - just an application for Aventis' support program. Aventis wants COMPLETE details of your finances - everything - with photocopies. Even if I could physically make and send all those copies, I refuse to give them my complete financial profile. That is just unacceptably intrusive.

As for State agencies, limited help is available IF you are solidly into the poverty line - if you have any resources at all to try to keep from going under you don't quallify, The indirect advice I have gotten is to sell our house and belongings and move into a cherity apartment, Cash in my life insurance policy and any savings or investmenta (no matter how limited) and then help will be available - because we qualify?

Of course, when I die my wife is left totally destitute and penniless.

I will NOT do that - so when I can no longer qalk or eat, or bath or use a toilet - then what? My wife has to take on a 24-7 support job? When does she sleep, eat, shop or even sit down and relax?

There is something very wrong with this picture.

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Old 11-21-2007, 12:45 PM #24 (permalink)
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Post 2008 Medicare Drug Benefit Open Enrollment

Got this in my advocacy email today from the ALS Association

Rilutek Coverage

Choosing a Prescription Drug Plan

Extra Help Is Available

Frequently Asked Questions

Information to Have and Questions to Ask

Report Problems and Successes


Entire 2008 Medicare Drug Benefit Document (Includes all of the above)
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Old 11-21-2007, 06:47 PM #25 (permalink)
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Default Rilutek side effects

My husband started on rilutek today. Has anyone had any side effects from it? The doctor is worried about his breathing and the fact that he lost 14 lbs. He was the 1st patient in the new als clinic that opened yesterday
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Old 11-21-2007, 08:33 PM #26 (permalink)
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I had elevated liver enzymes. They took me off for a month and have just started me back at 50 mg once per day to see what happens. Going for blood work every two weeks right now.
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Old 11-22-2007, 09:46 PM #27 (permalink)
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Default started the Rilutek this week

Well, have no idea if it is truly the Rilutek, but my husband started meds this week
he takes on an empty stomach 5:30 a.m. and 5:30 p.m. Does not eat for one hour
after taking the dosage of 50mg., and he swears his leg cramping has gone away.

I just pray that it slows the progression to just where it is now and no worse.
Hope you all had a wonderful Thanksgiving day and I am so thankful for this site and you dear saints going through this awful disease and you saints caring for our loved ones.

May we all give thanks to God for another day together with our family, friends & four legged friends!

God Bless you,
Patty
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Old 11-23-2007, 02:11 PM #28 (permalink)
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Thank you ZenArcher for that information. For some reason I never got it - just made certain I was re3gistered with ALSA.

Now all I have to do is find a Medicare Part "D" insurance company who carries Rilutek on the formulary -- only one so far is SilverScripts... My old carrier Capital Blue does not.

Thanks again,

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Old 11-23-2007, 03:11 PM #29 (permalink)
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Not a problem, glad I could help. Good luck on the search.
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Old 11-24-2007, 10:15 AM #30 (permalink)
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I know nothing about nor am I affiliated with this company in any way. They are listed on the American Legion benefits so I figure someone has researched them. They say they cover all drugs listed in the Medicare formulary and have additional drugs on the premium program.


http://www.unitedhealthrx.com/
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