Need info on Rilutek use 2 plus years

[Dr. Ashley Pereira]

Hi Paula:
How is your mum doing? How old is your mum. I read she was diagnosed in Oct 2006 and was given RILUTEK in March 2007.
ashley

 

[DBowman]

What I know...

Rilutek takes about 6 to 18 months of ingestion before it actually starts to "kick in". That's one reason a neurologist won't say much about it to an ALSer about its effectiveness. Time is of the essence to an ALSer. It is supposed to SLOW down the progression although it can be as little as 3 months but every little bit helps. They don't know HOW it even works...they only know that it does. It is so expensive because they do not make a LOT of it. Have you noticed that if it disolves on your tongue before you swallow it, it will make your tongue numb? Is it some kind of anesthetic? I have PLS and I know another PLSer who's had the disease for 17 years and she has never taken Rilutek. I don't like the fact that you must have your liver enzymes checked and I don't know what it will do to the liver on a long term basis. I also don't like that it makes me SO tired, either. If it is beyond your control that you cannot afford to take it any more due to insurance I believe being sad and distressed about something you cannot DO anything about will be way more detremental to your health and quality of living. That's when you need to tell God you're giving the situation completely over to Him because your life is in His hands anyway.

DBowman

P.S. If you have any questions about what kinds of liquids you can take with your Rilutek ask the pharmacist who gets it for you...He can tell you.

 

[Montana Carol]

Humana Enhanced Part D Drug Plan

I've not taken Rilutek yet. I figured the high cost wasn't justified if it only lengthened one's life by a few months, AND it had possible side effects. But now since I've heard about the lithium-plus-Rilutek trial, I'm again checking to see if I can get Rilutek at anything approaching a reasonable price.

The Humana phone contact told me that my portion of the $800+ monthly cost would be 25% or $212 purchased from their Rite Source preferred provider. Rilutek is on their list of Specialty Drugs. There is a donut hole, too, so I guess I'd reach that after only 3 months, thinking it's based on the total cost. I'm not willing to pay $800 a month out of our limited savings, so I think I'm out of luck.

Canada Pharmacy online shows a price of $662 for a month's supply, but I think I'd have to get a 3-mo supply per order, and I rather doubt Humana would pay 75%.

 

[Al]

Do some searching on the site. There are options available.
AL

 

[dona jean]

need info on rilutek use 2 years plus

i agree with al...i have been on rilutek since october, and my legs have gotten worse, but i still take it until something else comes down the pike that is better. we don't have a choice of meds, so we have to hope that what is available to us can help, but taking
rilutek is just like taking anything else, it will help some and on help others, just depends on how our bodies accept the drug.
we have to remember wit ALS it is what it is, and we have to deal with it as best we can cause those are the cards dealt to us.
keep the chins up!