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pscheffel

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Apr 13, 2012
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146
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Lost a loved one
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12/2011
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US
State
Tx
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NB
Has anyone gone without taking it? My Mom is in a 'donut hole' with Humana and when my Dad went to pickup her Rilutek Rx, it was $500 for 1 month supply. I don't know what to do. She is progressing pretty fast, can no longer swallow. She walks and is still pretty active for the amount of muscle wasting she's had. Thanks.
 
my husband has never taken it--so expensive. It is a personal call. very hard!
 
I am now one year on my diagnosis and have never taken rilutek. When I was first told about it, it just didn't sound very cost effective to me. I've done a lot of cost-benefit analysis in my working life and I just can't see the benefit to paying $1000 a month for a 3 to 5 month extension of my life. As Barbie says, it's a personal decision for each person. Another factor in my decision was that I had no health insurance.
 
I was shocked to learn how expensive Rilutek is, especially since, as Susan pointed out, it can only extend life by a few months. I realize pharmaceutical companies are in the business to make mountains of money, but I can't help but feel like in the absence of a cure for ALS, they're capitalizing on people's desperation to find something, anything, that will make even a small difference. Does Rilutek really need to cost that much?
 
Right! And I am beginning to question if it is 'in fact' benefiting her. Even if it gives her 2 more months, does she deserve to live the way she is living? Totally PEG dependent, unable to talk, drive, express what she feels...the list continues. I will discuss more with my brother and Dad. Even her PCP was asking why she continues to take it, but I just thought, 'because she has since diagnosis'....
 
My insurance covered it but I had to stop after 7 weeks due to elevated liver enzymes
 
My brother just started taking it and his is covered too, fortunately. But what about all the people who don't have insurance? Don't even get me started on the medical insurance system in this country. Few things make me angrier.
 
I am distal onset and slow progression but the drug was not recommended by neurology. I think the cost is way beyond the benefit.
 
Thank you all! We have decided to forego her taking it. I know deep down, the woman that raised me, would not want to prolong such a dreadful disease. But, this is a big decision nevertheless. As was us deciding not to take her back to ALS Clinic anymore. She will continue to see her PCP of 30 years, a highly respected physician in our community.
 
Such difficult decisions! Our Rilutek would be covered, but we declined, too. As for the clinic, since we are ALS/Language FTD, I feel almost obligated to go, if only to be of a teaching tool. I wish that someone would have said, 'Yes, I've seen this."
 
My husband took Rilutek for 6 months but had to discontinue because of elevated liver enzymes.
 
I have way too much Rilutek. If you PM me and you have a high co-pay or no insurance, I think you could help dispose of my extra.
 
Did you get a specific blood test to check liver enzymes. I have taken ad half dose of Rilutek for four years and have progressed slowly.
 
My Neuro ordered routine liver function tests. ALT and AST
 
Tests were done for liver function at ALS Clinic. Nurse noticed my husband had some yellowing of his skin. He was also having a lot of itching and dark urine because of the high bilirubin. Rilutek was stopped immediately and he still has some elevation of his liver enzymes but they have come down considerably. He is seeing a gastroenterologist to try to determine why they are still elevated.
 
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