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Can some of you who are taking this drug tell me how long you've been taking it, if you've seen results (hopefully you have!) and if you experience any side effects please? Thank you! --Kat
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Rilutek
- By excelwithkat
- Posted March 20, 2009 at 5:10 pm · 6 replies
- In Medicare prescription drug benefit
- Shared with the public
6 replies
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- By DannyD
- Posted March 21, 2009 at 5:20 am
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I have been taking it for over 8 years. I have not had any significant side effects, although I think it makes me slightly drowsy. I have not had any liver function problems. I have blood drawn every 3-4 months at the clinic. I'm not sure it has had any benefit whatsoever. I have never had anything to measure it against. I have a very slow progressing form of ALS. I would say that if my insurance didn't pick up the bulk of the cost I would not spend the money on it. I'm paying $50.00 for a 3 month supply via mail order pharmacy. I think the insurance pays around $2300.00, which to me is absolutely ridiculous.
- By joe
- Posted March 22, 2009 at 12:11 am
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Kat,
Joe here again, I have been taking it since 2001 and as far as I know it is working. Some say it only adds 6 to 8 months, who knows? What can it hurt? Maybe in 6 months they will find a cure. Never Give Up.
Jo
- By pcormier
- Posted March 22, 2009 at 11:10 pm
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My husband, now 60 has been taking Rilutek since the day he was diagnosed two years ago. Does it help? Hard to know. However, his ALS is slowly progressing. He is still able to transfer from chair to chair but unable to walk without assistance. He does get massage twice a week (we pay privately) which lasts for about 90 minutes. Also the VA pays for a physical therapist who comes one morning a week and help us with massage, learning how to use a Hoya lift; last week helping to adjust a new headrest on his electronic wheelchair,etc.
Side effects? He may be allergic to it. I have to put it between his teeth before he swallows it, otherwise his tongue swells up.
Moneywise we have been fortunate. Initially we paid $50.00 a month, then $8.00 a month through the VA. Now, because of presumption of service connection it comes without payment.
- By excelwithkat
- Posted March 23, 2009 at 12:19 pm
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Thanks, guys. My insurance co-pay is $900 for one month. I think I have some fighting to do! I want to get started on it very soon... --Kat
- By Smilef
- Posted March 24, 2009 at 12:25 am
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Kat you fight for everything you have coming to you!
I lost my brother in Jan 08 and he got everything he wanted and needed.
End result the company who supplied us with everything thought they were going to get his vent back. I fought for it. The insurance companied paid for that several times over. I did win. We gave it to the MDA for other ALS Patients that were not so lucky to have insurance.
If you can afford your medicine talked to your ALS Association in your area. They know of how to get help!
Marcy
Smilef@aol.com
- By BarbH
- Posted March 27, 2009 at 9:39 pm
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My husband tryed the Rilutek and he felt as though it was making him worse. So he chose to no longer take the drug. My husband was originally given 3-5 years to live and we are in year 16. I think Rilutek is a drug of choice.
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