Riluzole

[Karvorka]

I've taken it for almost 4 years and I think it helps especially for bulbar onset .. I had side affects for the first week and then my body seemed to get used to it so they haven't been an issue for me.. In saying that if they weren't government subsidized from $650 to $5 a month there's no way I'd take them !

 

[nikolab]

At present, Riluzole is the only drug approved by the FDA for the treatment of ALS. It is also the only drug shown to extend the survival of ALS patients, 2-3 month!?!? Although the exact cause of ALS is unknown, glutamic acid, the primary excitatory neurotransmitter in the central nervous system, may play a major role in disease etiology.
I chose not to take it.

 

[notgivnup]

I also chose not to take it as the benifits out weighed the risks for me, not to mention the outrageous costs. It is a personal choice for us all.

 

[kiwisally]

Here there is no funding for it so would have to pay the full cost myself. My neuro said personally he wouldn't consider it for a 3 month, quite possible on the back end, gamble. Maybe he was just being nice so I could make a easy decision.

 

[Karvorka]

That's strange that we get it subsidized here in Aus but you don't in New Zealand .. I would have definitely expected you to get it

 

[jb63]

I questioned whether it was worth taking because of the low stats. This is what she told me about the stats: some get 1 month, some get 18 months before ventilator. My insurance covered most of it so I started it. I have some fatique but I have other meds that could be factored in. Liver is doing fine.

 

[kiwisally]

Hey Karvorka, I'm not surprised, out of necessity NZ is pretty responsible with health dollars. In round numbers, at about 1 1/2 K a month (our $ is up!), 24 month average expectancy, say 2 months extended life, half of that "quality", that comes to about $1000 each for 30 good days. I won't fund those odds out of my own pocket and when I look at it unemotionally why should I expect the tax payer to.

 

[susanf]

I would have taken it but my ALS neuro "forgot" to offer it. By the time I learned about it on this forum the Dex trial was begining so my window of time was out.

 

[Ms. Pie]

If everyone's progression is different, how do they know if it really extends lfe at all?

I chose not to take it due to potential side effects and cost and limited benifits but my Neuro said if I change my mind she'd get it for me. She also said that if it were her she'd try anything. I understand why and why not someone would choose to take it. It's a personal decision.

 

[Karvorka]

Hey Karvorka, I'm not surprised, out of necessity NZ is pretty responsible with health dollars. In round numbers, at about 1 1/2 K a month (our $ is up!), 24 month average expectancy, say 2 months extended life, half of that "quality", that comes to about $1000 each for 30 good days. I won't fund those odds out of my own pocket and when I look at it unemotionally why should I expect the tax payer to.

Hi Kiwi Sally,
Yeah I sort of see your point it is an expensive medication (not sure why it's $1500 a month there and $650 here before the subsidy) and like I said if it wasn't $5 I certainly wouldn't pay for it but I certainly don't have any hesitation making the health system pay for it. Especially since I paid taxes for 15 years and during that time went to the doctor like 4 times also I don't get any other treatment from a system that spends 70% of its total funding on people with preventable conditions like lung cancer, heart disease, diabetes related illnesses etc.. Also just to add to the talk about the effectiveness of the drug, it can vary according to a multiple amount of factors like age of the patient, when they started taking it, what they take it with, time of the day they take it, if their bodies tolerant the drug etc.. All in all it's a decision each person has to make according to their specific situation and from my point of view it's worth it..

 

[kiwisally]

Karvorka, I've never thought about the cost until now but only about 300 + or - people have MND in NZ at any given time. Since the drug is not state funded our drug purchasing agency wouldn't have any bargaining power and not be getting any sort of volume discount. I don't have any figures but doubt many people in NZ are taking it. I don't know how it works there but I reckon with about 10 X the people as here you probably have about 3,000 people with MND at any given moment and since it is funded that is enough volume to get a discount. That is just my guess, I really have no idea.
MND is one of those one in a million (not quite) diseases and I don't fault anyone for the decisions they make about what treatment they do and don't choose to receive. It's funded and you have every right to take it without guilt or justification. Not all lung cancers, heart disease and diabetes are preventable and those people deserve treatment as well, even if their disease is self induced, in my opinion. As to effectiveness of the drug I sure hope it does provide you and everyone taking it additional time. I think that is all any of us are looking for with this disease and for sure, it goes without saying, that this choice, along with many others, are ones each person has to make according to their specific situation.

 

[Chase_Corin]

Where I am they have to order in Riluzole when my dad needs it, it isn't a medication that they normally keep in stock at the pharmacy.

 

[glupavomomiche]

Chase, I have to order it too. I have to be careful to stay on top of it and refill/order at least a week in advance.

 

[Katie C]

We had to do the same thing... Kaiser did not keep it in stock either. But if I ordered it to early and didn't pick it up right away they would send it back!

 

[primerib16]

I was told I had ALS in Dec and started to take rizutek t he same mont h . It is very expensive and I have no idea what the benefits are. I am told that it will prolong good quality of life for me, but who knows. It is the only med t hat I have heard of t hat might help
Good luck