Old 02-16-2012, 10:40 AM #1 (permalink)
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Default Riluzole

Does everyone take Riluzole? It looks like there are a lot of possible side effects - hard to tell from the doco I'm reading just how common they are, though.

My Dad's first appointment with the ALS clinic isn't until March 6. They did call in a prescription for the excessive saliva at my request, but I was wondering if I should ask about Riluzole now or just wait?
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Old 02-16-2012, 10:43 AM #2 (permalink)
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Default Re: Riluzole

No, I chose not to take it, didn't think it was worth the cost vs. benefit.
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Old 02-16-2012, 10:47 AM #3 (permalink)
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Default Re: Riluzole

Thanks, Helen.

The cost is also an issue. I asked and it's not in the VA formulary of covered drugs. That surprised me.

He's 78 and already pretty miserable. I would do anything to make him feel better, but I'm not sure where I see that this would do anything to make him more comfortable.
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Old 02-16-2012, 10:55 AM #4 (permalink)
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Default Re: Riluzole

My mom did not like how she felt on it and the benefit is so small why bother was her take on it.
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Old 02-16-2012, 11:21 AM #5 (permalink)
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Default Re: Riluzole

Do a search on the forums for Riluzole, Rilutek to see what other members have to say about it. Some have been on it for years without problems. I wasn't able to continue on it because of a rise in my Liver Enzymes. If your dad does decide to take it the Doc will monitor him for side effects. My insurance covered it with a $30.00 co-pay. The pharmacy had to order it so it's advisable to request your refills a few days before needed. You can check with your local pharmacy to see what the cost will be with whatever insurance your Dad has.
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Old 02-16-2012, 11:23 AM #6 (permalink)
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Default Re: Riluzole

I've been taking it for two plus years, no side effects. But, the benefits aren't something you can feel, you just hope it's slowing things down. And I do have coverage for it. If I didn't, the $1000/month would be hard to justify.
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Old 02-16-2012, 11:35 AM #7 (permalink)
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Default Re: Riluzole

Opps, lost my post! I was unable to continue on Rilutek because of an elevation in my Liver Enzymes. If your Dad decides to try it be assured that the Doc will monitor him for side effects. My insurance covered the cost of the drug with a $30.00 co-pay. You can check with your local pharmacy to see what the cost will be with his particular insurance. Be sure to order refills early as most don't stock it and will have to order it.

Do a search of the forums or click on the tag below (riluzole) for discussions by other members. Alyoop posted about the original research as well.
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Old 02-16-2012, 01:47 PM #8 (permalink)
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Default Re: Riluzole

I was diagnosed 10/11 and started Riluzole in mid-december. My white blood count was down for a month but no apparent side effects since. I believe I was lucky in starting Rilutek so early in my "discovery" process. - - Don't know if Rilutek has made a difference, but I sure know that it hasn't caused problems for me thus far. Fortunately, Rilutek is covered by insurance; could not have afforded it otherwise. By the way, don't give up on VA. They do cover the drug. Has your dad received a disability award yet? If not, that could be a reason for not receiving the Riluzole (Rilutek is the brand name on my meds). I wish you and your dad a big measure of good luck !
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Old 02-16-2012, 01:52 PM #9 (permalink)
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Default Re: Riluzole

Glen took it.. who knows if it did anything or not, but he didn't have any side effects.
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Old 02-16-2012, 01:56 PM #10 (permalink)
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Default Re: Riluzole

Thank you all for the input.

You're right, Frank. I did find more info the VA website. It says Riluzole was added to the formulary in 2009:
"Added to the VA National Formulary (VANF) - Riluzole (RilutekŪ), restricted to neurology or locally designated subject matter experts for the treatment of ALS only". His paperwork is in process for his service-disabled status. I'll ask again - and try to ask the right question this time
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Old 02-16-2012, 03:48 PM #11 (permalink)
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Default Re: Riluzole

I started taking it in November. I was ok for a bit, then the nausea and fatigue hit like a mack truck. It took over a month to get to feeling back to normal. I intend to keep taking it no matter what. It's all there is. If you go on the Rilutek website, you can sign up for a discount card that saves you $100 out of pocket a month. My insurance covers all but $200.98 a month, so with that program my cost is just $100.98. I think it's worth it. Besides, if what I'm experiencing is "slowed down" ALS, I sure would hate to see what it would be like without taking it...
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Old 02-16-2012, 05:02 PM #12 (permalink)
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Default Re: Riluzole

Check the bottom of this page for threads on it. I believe it helps. Earlier the better.

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Old 02-16-2012, 08:15 PM #13 (permalink)
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Thanks, all!
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Old 02-17-2012, 06:30 PM #14 (permalink)
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Default Re: Riluzole

Quote:
Originally Posted by st123 View Post
Thank you all for the input.

You're right, Frank. I did find more info the VA website. It says Riluzole was added to the formulary in 2009:
"Added to the VA National Formulary (VANF) - Riluzole (RilutekŪ), restricted to neurology or locally designated subject matter experts for the treatment of ALS only". His paperwork is in process for his service-disabled status. I'll ask again - and try to ask the right question this time
Once he has his ALS confirmed by the VA he is eligible for it. His doc should also set up monthly blood work at the VA once he is on this medication. Just as an FYI if a drug is not on the VA formulary it does not necessarily mean it cannot be ordered.
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Old 02-17-2012, 07:27 PM #15 (permalink)
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Default Re: Riluzole

Here in Canada the price for a 90 day supply is well over $2000 for my dad. He has coverage for 80% from his pension which is wonderful. Since then his doctor has also written a letter that allows the remainder to be covered under the Old age bennifits plan. So he basically pays less than $20.00.

Dad talked to us all about the possible side effects and it was ultimately his decision. Other than some excessive drooling he has felt no adverse reactions. He also thinks that he was drooling this much before he started taking the medication. Dad is monitored very well by his doctor he sees our family dr once or twice a month. and goes to the ALS clinic where he sees all the specialists every three months.

I personally hate the fact that there are not more medications for those with ALS not that the amount of medications makes the difference but the reasearch dosn't seem to be getting done to create medications or treatments that MIGHT help fight this dreaded disease.

Riluzole is not what I call a great leap in ALS research but the idea that it might increase the quality and possibe durration of life. That in my opinion is not significant enough, it's not good enough.

They have treatments for Cancer, AIDS, TB, all of it.... diseases that 20 years ago were a death sentence. I want the same amount of research and effort put into ALS which is killing people worldwide at what I see as an alarming rate.

Sorry If I am venting but I am so sick of this friggin disease!
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