I am new here..again!Question....Rilutek.

[JamesMcC]

Hi all,
I was diagnosed Jan 09 having experienced my first symptoms last March with speech.I can still speak with difficulty.The past 2 months I have been taking rilutek and have had weakness in my right arm and hand with slight weakness in my left arm.I have been feeling a lot more tired too,some days more so.Basically my Q. to you all is your experiences with rilutek as I think I will finish up my last few pills and quit taking it.Looking forward to your opinions on it.
Thanks
James:razz:

 

[brooksea]

James, if you use the search button you will find varying opinions on the use of Rilutek.

My husband does not take it, as we do not believe the benefits out weigh the side effects. If this is the best the medical research community has to offer, we say no thanks...

That's just our opinion. Others may have different views.

 

[jillg]

So what do you do?

 

[JamesMcC]

Ty CJ..any more opinions?

 

[rose]

There are several fairly recent threads with many opinions on the Rilutek...

 

[JamesMcC]

Thankyou Rose..appreciate the help.I think I will go off it this week and see what happens.

J

 

[brooksea]

Jill,

You have to find what is best for your pALS personally. Do some research on this forum and other ALS forums. You will see what others are doing to try to slow their progression.

Good luck!

 

[rocmg]

hi... i wasn't sure whether i should contribute to this thread, but i do have a legitimate question.

How do you know if rilutek isn't being of benefit to you? How do you know if the fatigue is the pill or the disease? Is it just a kind of intuition and knowing your own body?

I guess mum would say it's probably not doing her any good since her speech has not improved and she tends to be (understandably) pessimistic about the whole sorry business anyway. i don't think she would stop taking it though purely because it's the only FDA approved thing available.

 

[rose]

James, If you really want to learn about Rilutek, you can educate yourself about it, as CJ suggested, by searching here and on other ALS forums.

Roisin, I think the literature for the riltuek says the initial unpleasant side effects usually fade after the first couple of weeks, (I'm not referring to potential liver damage, just the annoyance type of drawbacks) I'm thinking your mum been on it much longer than just a few weeks now..

What needs to be understood is that Rilutek has only been proven to extend life, some may or may not feel it slows progression or severity of symptoms, but the only supported claim is for extending life an indeterminate length of time.

 

[rocmg]

Rose -- thanks! I keep telling mum that the benefits will be subliminal. i think the poor little thing thought that the drug would stop the progression in its tracks. i keep telling her that it hasn't been proven to do that, but there is always an exception to every rule and she could be that exception. we'll stay with it -- 10:30 am and 10:30 pm. The little routine hasn't been so bad.

 

[Jennifer51]

I started taking it almost one year ago, and when I started taking it I did notice a slight reduction in my awful twitchng and no adverse effects. I have progressed too fast for my liking, but then it is not a cure, and who knows where I would be without it, just have to hope that it IS giving me more time in the hope that something else will come along.

 

[boblandstar1]

Rilutek

Rilutek made me noticeable weaker. Side effects arent worth the small benefit.

 

[froggy102]

Hi James

My dad took it for a few weeks and it made him feel very fuzzy and tired, so he stopped it. I guess each person is different though

 

[brendapals]

I've been on Rilutek almost 10 months now, kinda like Jennifer said-don't really know where I would be without it at this point.

I have progressed pretty slowly-my speech is the worst-everything else is good as long as I pace myself.

Once again, no 2 snowflakes are alike!
-brenda

 

[hopingforthebest]

Rilutek

My husband did not have positive affects on Rilutek. He was sick, gagging, lost 15 pounds and since he stopped meds, gained weight back and doing good. His progression is slow as he has the PMA.