Rilutek

[Erica]

I was given a script for Rilutek last Monday.
I'm concent with multitude of side effects from this drug and only 3 to 6mo of potentialy extending survival.
Would appreciate to hear other PALS opinion or experience with Rilutek.
Thank you, Cookie

 

[GlenBrittle]

I have taken it since December 08. It took me about a week to get used to it , I would get a little spacey for about 20 minutes after taking it. Now , its just another pill I take twice daily. Is it working ? Hell if I know , but I am still here !

When you start , plan for monthly blood tests to watch your liver for a while. Mine were good , and the only side effect I can tell you is that I yawn a lot more .

There are others that had worse side-effects. Also , its not a cheap drug. Its one of those drugs that bring some lube with you to the pharmacy . Yep , your pocket book is going to get raped.

Glen

 

[BethU]

Hi, Cookie ... I took it for a month, and experienced a lot of annoying twitching with it, so stopped taking it, and the twitching went away.

Many people take it with no side effects whatsoever. My philosophy is, if it doesn't bother you and you can afford it, go for it! If you keep your weight up, you can add at least another six months or more. (My neuro said studies show keeping your weight up extends your life even more than Rilutek.) Six months from Rilutek, six months from holding your weight steady = an extra year. Maybe a cure will be found in that year.

 

[peter57]

Hi Cookie,
I have been on it for 12 months now with no side effects that i can see.
Like others have written, keping your weight up also is a benifit and who know what is found in that time.
I am interested though in the price of Rilutek in the states.
I have seen a couple of posts which talk about the price of it being expensive.

Here in the " Land down under", Australia, (yes we pinched the America cup some time ago from you) we pay app $33 Aus. (say $40.00 US) for 1 months supply.

It is listed on our drug list thus the price we pay is offset by the government.
(the full price on the packet is app $660.00 (say $800 US)
(I hope that is not what you are paying)

cheers Peter

 

[t34gib]

$972.00 per month, but lucky to have insurance and only pay $50.00 copay.
NancyS

 

[GlenBrittle]

OUCH ... mine are $625 per month - 100% covered , the pharmacy bills the insurance directly.

 

[BarryG]

In Canada, at least in Alberta, the list price is $650 Canadian ($596 US or $714 Australian) per month. I pay $25 per month plus about $80 per month for insurance coverage for any prescription that I or my family needs. So about $100 per month for me.

 

[peter57]

The prices vary a lot

(Ops i got my converson the wrong way around so $33 Aus equates to less than $28 US and the full price of $660 equates to app $540 US)

We dont have to have any special insurance to get these or lots of other drugs for a discounted from list price.

I would however pay whatever (within reason) to keep on fighting
cheers

 

[Mahealani]

I've been on it since 1/09 with no effects. I felt a little tired at first but can't say for sure it was from the meds.

My co-payment here in Hawaii is $20 per month - insurance pays the rest.

My progression is faster than I had hoped, can't say its working but I did hear that it works best on bulbar symptoms - so far I only have some slurred speech. I had limb onset in 10/08 as my diagnosed.

Mahea

 

[joelc]

The cost in BC is $950.00 a month and the total cost comes out of the patients pocket. That is why I could never consider it.

 

[peter57]

Hi Joelc, Glen and others who have to pay large amounts for this drug
(and i guess some other drugs as well)

I wish i could buy a container load and ship it to you but i am unable to.

Keep on fighting (i know you all are)

cheers

 

[Jennifer51]

I have been taking it since May 08..no side effects at all. Does it work, darned if I know, but at least I FEEL I am doing something....although my progression seems to be fairly fast. Cost...sorry for you all, but mine is entirely free...well... paid for from the taxes we have paid all our lives.

 

[Danijela]

No side affects experienced by my partner who has been taking it since Nov 08.

 

[asantiago]

Hi Cookie,
My mom said she didn't like how she felt when she was on it. I think she took it for about a month maybe. When she stopped taking it she felt a lot better. My mom was also very what's the word for it? Easily influenced by thoughts, in other words if I told her that a gum drop would make her run really fast, she probably would go run her fastest race ever. So I'm not really sure if her stopping taking it really made her feel better or if she just thought it did.

She did display an increase in appetite about the time she stopped taking it, but with so much going on I don't know if it's fair to say that it was attributed just to her stopping the drug.

Additionally, her nurse told her that if insurance didn't cover it for her (luckily it did) to contact the Pharm. company directly and that they often would provide it at a much lower cost.

 

[SteveS]

Mich has been on it now for quite a while with no side effects and between my extended and hers we dont pay anything except the odd despensing fee of a few dollars depending on where we have the perscription filled.