Riluzole (Rilutek)

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ruby ben

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PALS
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11/2010
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CA
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B. C.
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Hi everyone. I have seen this drug mentioned but do not remember the information. The neuro has suggested this to me - what are your opinions?...............ruby from vancouver (surrey)
 

Jane

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Lost a loved one
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Hello Ruby, My sister took rilutek for about 2 yrs. She did progress fairly quickly. It is difficult to tell what the med. did because if you take it you have know way of knowing what difference there might have been without the med.
I know it is suppose to slow the progression of disease for some people.

Jane
 

marlo

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Joined
Feb 20, 2006
Messages
92
Hello,
I can't speak for the other ones on here, but both of my neuro. told me it was a waste of money. However, there are alot of people on here that do take it. The only draw back to that is you won't ever beable to tell if it is doing any good or if your just spending money. So we all just do the best we can do. I wish you all the best.

Love and Prayers
Marlo
 

rcharlton

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Jun 20, 2005
Messages
610
Reason
PALS
Diagnosis
11/2005
Country
CA
State
Ontario
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Toronto
Hi Ruby,

My ALS specialist was formally of the opinion that the benefits of rilutek did not warrant prescribing it. Now after reviewing the latest case studies which suggest the drug may have more benefits than previously thought - he is recommending that his ALS patients take it.

Now - will taking it make any difference in your case? Who knows? I think the effectiveness is different for everyone. I've been taking it since November 2005 - and have not noticed any perceptable difference and have had noticeable progression in that time.

Luckily I have drug coverage - so the cost is not an issue for me. Although, I understand that for those who don't have drug coverage and cannot afford the drug, arrangements can be made.

Personnaly, if I did not have drug coverage, I would not be taking Rilutek.

If you do have drug coverage, I would say go for it.

Good luck.

Richard
 

Al

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I too took it and have a drug plan to pay for it. There is really no way of knowing if it is doing you any good but it's like taking an ASA for your heart. They say it helps but people on it still have heart attacks. So if you can get it and it doesn't bother you I'd take it. Go to www drugs.com and type in the name and it gives you information on it.
 

ruby ben

Active member
Joined
Jan 17, 2006
Messages
82
Reason
PALS
Diagnosis
11/2010
Country
CA
State
B. C.
City
Vancouver (Surrey)
Thanks all. I do have partial drug coverage so I am going to try it. If I have too many side effects, I will stop. It sure is a rigamarole to get it...............ruby from vancouver (surrey)
 
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