Is rilutek worth the cost?

[pops66now]

My doctor put me on rilutek, two 50 m a day. I went to walgreens and picked it up and
they said that will be $29.00 copay, I didn't think much about it till I got home and
noticed that the full price was $1,126.00. My insurance only will cover $4,470.00. I have
Rheumatoid Arthritis which the meds for that comes out of that amount, so it is a no win
situation. The pills are still sitting in the medicine chest.
Does anyone else take these?
I'm sorry about complaining, I know everyone has their problems but nothing is to big
for our God, I know He has everything under control.
Keep The Faith

 

[ScottV]

My insurance only paid $10.00 of the $980.00 cost so after the first month I decided not to continue the rilutek. Since my progression is very slow I thought of many other things that my family could spend $1,000.00 a month on. My doctor at Johns Hopkins agreed. Thats not to say it doesn't help, others may have more insight into the affectiveness.

 

[Ladyinn]

I have a Rx for rilutek at the pharmacy now and also have a Rx for Bacolin that I started yesterday. I am wondering why I have both - aren't they both used to stop muscle spasms? My co-pay is normally $3.00 but it is $9.00 for the rilutek - no doubt because it is so pricey. So - cost is not my concern at this time, but am wondering if taking both of these meds isn't going to turn me into a limp dish rag! Diane in SD

 

[shelleynshaggy]

Not sure if it is helping or not. Jim's progression seems to have slowed since he was on it --- but how would it be without? Who knows! If you contact the Rilutek manufacturer they have a program to pay 1/2 our co-pay (ours is $75).

If it wasn't for the copay - not sure he'd be taking it. I felt the same way when I found out the cost.

I know that's not much help - sorry!

 

[peter57]

There have been a couple of threads re cost and effectiveness of it. If you do a search or look at the bottom of the page you will find some threads.

From memory costs vary greatly from $0 to $1200 a script.
In my case i am on them.
cost for me in Aust. is $33.00 a month.
Do they help, who knows but i intend to continue with them. (been on them for app 20 months)

cheers
Peter

 

[Blubear]

Well, as far as Rilutek. My dad did take them, but they made him even more fatigued than he already is, even by cutting his dose and only taking it at night. It was affecting his quality of life, so he stopped taking it. His ALS specialist told him that he believes that there are lots of different "strains" of ALS. Much like AIDS. That is why the progression is so different from PALS to PALS, and why Rilutek seems to help some, but not all. I would take it, see if it works to slow anything down. If you get any side effects, I personally dont think its worth it. Right now everything should be based on quality of life in my book.
Good luck hun!
Kari
PS Welcome to the Forum! It is a great place to be for support of any kind, and a lot of really good information. We are always here for ya!

 

[pmbenb83]

Eric tried taking Rilutek for about a month, but the fatigue was too much for him from the medication, so he stopped. Quality of life over extending it a few months was his reasoning for discontinuing it. I never looked at the price, but shocked to hear how much it costs.
Ridiculous! I hope you will not have to choose which medication you need most. Between pharmaceutical companies and insurance companies, they get us coming and going.

Good luck and welcome to the forum!

 

[pops66now]

I want to thank everyone for their replies, It is a great fourm. It's nice to receive feed back of your thoughts.
I pray for each and everyone of you.
Keep The Faith,
pops66 now

 

[pops66now]

Sorry I misspelled forum.
By the way hi to all ! My name is Wayne

 

[scouse]

Hi wayn
I am from the UK and we dont pay (well I dont I am A pensioner) however I tried it for 3 weeks and it made my fatigue worse I am supposed to have slow progression so I havent taken any since
I am going to a semina on about relutek in a few weeks if I pick any new information I will post
take care
Scouse

 

[Phil M]

I'm fairly certain that rilutek is not intended to be a therapeutic. In the since of relieving symptoms. Its just been proven to "slightly" slow down progression by reducing a chemical (that I don't remember the name of) from the brain which slows down the death of motor neurons. I'm not a Doctor though, I just play one on the internet....[;^)

 

[pops66now]

Thank you Scouse,
yes let us know what they say about rilutek.

 

[pops66now]

Here is a link you might like to view on rilutek.
RILUTEK® (riluzole) Tablets Prescribing Information

 

[sadiemae]

Wayne, with Rilutek, either you can tolerate it our you can not. My PALS does, and since we do not have to pay(VA) he takes it. We do not notice anything, however with him, I think it gives him a feeling that at least he is taking something that might help slow the progression. I wouldn't continue on it if it meant having to suffer financially. The stress from that could be worse.

 

[pops66now]

Hello Sadiemae,
Thanks for the feed back, I am a vet and I will get intouch with the VA and see what I can do.
I need to use every resource I can. I have never ask the VA for anything, but now is a good time.
Love You