rilutek, pls help..

[Embanene]

Good day folks..where/how to buy? not available in our country(philippines)..please help.. my wife has been diagnosed last feb. 2014, a year now..

 

[Nikki J]

Try searching canadian online pharmacies. I just looked at one site and it says they ship to most countries. You would need a prescription from your doctor. And I have no idea if it is legal in the Phillipines. It is not in the US but people do it anyway

 

[lgelb]

If you are looking at online Canadian pharmacies, pick one that is certified from this list:
CIPA Full Member List « Canadian International Pharmacy Association

 

[nebrhahe53]

its virtually useless anyway. 2-3 months extra -wow. My neuro said if insurance didnt pay for it, dont bother, The fact is that the FDA will not allow any new treatments in trials now that might be useful to be used for "fear of hurting people with ALS" Thats a joke isnt it?
The sad fact is that there is no treatment for this disease. It is a death sentence.

 

[tripete]

Nebrhahe53 although it is not a popular sentiment I agree with you. We so desperately want something that will help, that we are willing to cling to even the smallest things. The reality is that this disease is something that we have no power over. Yet we are told to keep fighting. I struggle with what that is suppose to mean. Embanene I am sorry that your wife has this wicked terrible thing. I do not however believe that Rilutek is the answer.

 

[Nikki J]

Riluzole is actually supposed to extend survival by 10 percent so if that holds it depends very much on progression rate how beneficial it is
Some neurologists are saying if you start it early the benefit may be significantly greater I have even hear up to 25 percent prolonged survival which makes sense as I have read as disease progresses the transport into the brain becomes less and less efficient. Some of us do better than others. I was sliding fast when I started it and once on it the slide stopped and actually reversed a bit. I have slid a bit since then but not much. I am lucky to be a responder and lucky that I got diagnosed very very fast. But my point is we are all different and although you might guess early treatment means a good response you can't predict. And maybe there is a point when it can't help anymore. I think if you can get it you should try it and see for yourself how it goes

 

[gooseberry]

Not a PALS but when I hear people say that to my husband , stay strong-keep fighting-don't give up- etc, it burns me up. They have no idea what he goes through in a day....frankly neither do I. I see it first hand but how do you really know this monster unless you have it.

 

[Embanene]

thank you very much guys for the inputs.. well taken...

 

[brienw]

early in my diagnosis I saw the 'ABCs of ALS' where I heard that the 2-3 month extension with rilutek was the result of testing PALS with whom the disease was fairly advanced, but if started early, rilutek would extend life a year of more.

I started rilutek right away. I must say the disease progressed slowly for about a year and a half.
Around November 2014 the progression appears to have accelerated. I have also heard rilutek loses its effectiveness over time, but I continue to take it anyway.

-Brien

 

[AKjo]

Gary started taking Rilutek the day he was diagnosed, September 1, 2010. Who knows if it helped or not, but his progression was fairly slow when compared to many on here. He got an elective trach in December 2014, and ended up on a ventilator full time after getting pneumonia a couple weeks later, so quit taking it then. He also used marijuana for most of that time - even though he had a medical marijuana card, I felt like a criminal most of the time. haha Had to grow it myself (ordered seeds from the Netherlands). Anyway, either his progression was always going to be slow, or those things helped; we will never know. I do know he has not had the pain that others have complained about. Yet.

 

[Nikki J]

I had to delete a very kind offer by AKJo because it is technically against the law and so not allowed on this board. Medication can only be dispensed by a licensed person. What happens by pm of course is between the parties involved

 

[frankb]

Have been on Rilutek since 1/2011 and my progression has been slow. However, weakness in arms/shoulders, legs/quads has advanced to "high" gear during the last six months. As mentioned in an earlier post, perhaps Rilutek is less effective after a period of use.

 

[mpnatx]

I had to delete a very kind offer by AKJo because it is technically against the law and so not allowed on this board. Medication can only be dispensed by a licensed person. What happens by pm of course is between the parties involved

Yes. I had several unopened bottles of Riluzole because I couldn't tolerate it. I asked the Dr if he wanted to give them to someone who couldn't afford them and he said absolutely not. I tossed them.

 

[T.Low]

Not a PALS but when I hear people say that to my husband , stay strong-keep fighting-don't give up- etc, it burns me up. They have no idea what he goes through in a day....frankly neither do I. I see it first hand but how do you really know this monster unless you have it.

Yes. I've had people in the medical clinics use the terms "mind over matter" and "use it or lose it". And they wonder why I have no confidencce in them.

 

[Mandyintn123]

Mom
Started this two weeks ago and said it makes her feel spaced out and weird .. So she stopped it dr said quality of life she had left meant more