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New member
Sep 23, 2005
Has anyone had much experience with Rilutek? My best friend was diagnosed in June 05 and is deteriorating very fast. Unfortunately it started with her speech. She goes to the clinic at Sunnybrook and they are trying to get her to take the medication but she refuses. She wants to cure herself naturally, via herbs/vitamins etc etc We have supported her in whatever she does but at the same time we really want her to try the Rilutek. Has anyone had positive response to it?
Hi Jules. The problem with Rilutek is you never really know if it is working. I was on it for about a year or more and stayed fairly stable. I went off it for about 5 months and noticed a quick decline in my breathing and hand use. I am back on it. I don't know if it was just the natural progression of the disease or if being on it helped. There are people I know that say it works and there are people that swear it is poison and like your friend prefer to go the natural route.
The thing is no one can really know what is best for you. You have to be educated ,read about the alternatives and then make an informed decision. Good luck to you and your friend.
Hi Jules,
My ALS also started with my speech and I was diagnosed in April 04. I have been on Rilutex since shortly after diagnosed, but like Al says, I don't know if it is helping or not. I do not have any side effects from it.
Thanks for the replies, Al & Granny. I guess all I can do is support her in whatever path she chooses. Thanks again.
Hi Jules
My Dad was diagnosed in Oct. 05 and began taking Rilutek in Nov.05. His symptoms started with a dropped foot and a slight limp. He seemed to be progressing really slowly until he started taking the rilutek. Now that he has started taking it he is dergressing very quickly and can now barely walk - after having a drop foot for more than a year before being diagnosed! I guess it is different for everyone and it is hard to say if perhaps the acutal diagnosis affected my Dad's attitude - which i believe can have a great influence on how you feel. It is a tough descsion to make as to wethere or not to take it. From the reasearch i have done on it there is no real scientific evidence saying that is does help. But the problem is this disease is so variable in everyone it is hard to tell. Hope i was able to help you.
Hi Jules,

My Mom is doing both. She is seeing a Naturopathic doctor and taking Rilutek. Her Naturopathic doctor has never suggested she stop taking the medications her neurologist perscribed for her. After all, Rilutek is not a cure, it's just something that may slow progression a bit. Good luck to you.
I to refused at 1st,July 2005 and tried going to a naturalpath.I read about the side effects and it scared me.Nothing seemed to work,as it progressed.In Nov, I was back at Sunnybrook and the Dr. convinced me there were no side effects in the 600 patients he has seen,so I'm trying it out and have had no side effects yet.I think it may work on some and not for others since each case is different.I can't tell if has slowed things down or not,but I think it's worth a try
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