When to get off Rilutek

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Will

Active member
Joined
Dec 1, 2010
Messages
82
Reason
PALS
Diagnosis
11/2010
Country
US
State
AZ
City
Cottonwood
I was on the Rilutek website today, and they state that after 18 months, Rilutek and placebo perform the same. So, does it make sense to get off that drug after 18 months of taking it?

I know many of you do not take it at all, for many reasons, but those of you who do, when is the right time (if ever).

My PALS is in the Medicare system, so the drug is very expensive in the donut hole. But I don't want to see him off if there is a reasonable chance that it is still helping.
 
That's a question you really should direct to your PALS' ALS clinic. They are far better equipped to give you the right answer than we are. They may also be able to point you to financial assistance for coping with the Medicare "donut hole."
 
My husband has had ALS for a long time. His is a very unusual case. He has been on Rilutek since it first came out. The VA pays for it. They check his liver enzymes from time to time as the drug can cause problems there. He does have some abnormalities in the liver enzymes, but they are not horrible. When we go to neurology at the VA, we see interns. On one occasion the intern felt that because of the abnormalities in the liver enzymes they should take my husband off of Rilutek. So he discontinued it. I don't remember how it came about, but a couple of weeks later the PA there realized what had happened and insisted he be put back on it. She said there was nothing in writing, but they had found that when one of their patients had been on it for an extended period of time and went off, they began to deteriorate rapidly. She spoke about it to one of the regular neurologist, and Rick was put back on it immediately.

I have no idea how long an extended period of time is or if other neurologist have observed the same thing. This was just our experience.
 
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