Daily schedule of rilutek

[nebrhahe53]

Havent noticed rilutek making any difference but Nuedexta definately is. I could not swallow solid food and within 2 days I was able to swallow almost anything I wanted. If its a placebo effect its sure a great one.

 

[MaxEidswick]

> I could not swallow solid food and within 2 days I was able to swallow almost anything I wanted. If its a placebo effect its sure a great one.

any negative side effects? I really miss eating ...

 

[Nikki J]

I too twitch less on riluzole. My neuro said it happens to some. What I neglected to ask is if it is a sign that possibly it might seem to slow progression well. Obviously they could not say for sure but they might have a good guess
Neil glad you are having such a good effect. I think some people do get improvement in swallowing so maybe not placebo!

 

[nebrhahe53]

No negative effects I can notice Max

 

[MaxEidswick]

>No negative effects I can notice Max

thanks, passing on to clinic!

 

[gooseberry]

My pals has had no measurable clinical progression since about 2 weeks after he started the riluzole.

 

[Nikki J]

That is awesome. How long has he been on it and how long before that was he symptomatic? If you don't mind telling us?

 

[gooseberry]

He started the riluzole in May on the 24th. He was officially diagnosed on the 21st(second opinion confirmed). He had had cramping for about 9 months and the twitching had been going on for 3 years. Now they dont think the fasciculations were always due to the AlS but for at least part of the time some other health conditions. His main ALS symptons of weakness,fatigue,breathing and sleeping difficulties, and cramping and progression began 10 months before diagnosis

 

[Schmidhogan]

I had to stop taking Riluzole three months ago when my liver tests shot above three times normal. Guess it is a risk benefit issue. Don't want to blow out my liver and have to give up my bourbon for a measly 10% of extra time. Back to the quantity vs quality discussion.

 

[Nikki J]

Thanks gooseberry. Hope it continues to stabilize him for a long time

 

[pecas]

Yeah, Schmidhogan, my wine is a much more effective medicine for what ails me than the riluzole, I think.

 

[GregK]

Our neuro said she offers it but few patients take it ... [and] she was surprised more patients didnt take it

Two thoughts:
- w/o proper insurance it's bloody expensive. Non-generic Rilutek is ~$2,000/month
- many are put off when it's presented as "May add a couple of months to your life"

 

[pecas]

Yeah, I wasn't told that it could decrease the twitching and cramping. I didn't realize it until I read it here and experienced it for myself. That counts.

 

[gooseberry]

My husband was having alot of trouble with his voice. It had gotten high and thready. He wasnt able to talk very much. He was pretty scared it was happening so quickly. The rilutek has helped the swallowing issues/voice issues. The neuro never mentioned anything about the possible reduction in cramping,fasciculations,improvement in QOL, nothing. Only mention was of a possible gain of 2-3 months of time. For us, this gave my husband a summer with his 12 yr old son. That has been priceless.

On the cost issue, the generic gets billed at around $1500 a month to insurance company. They pay about 10%. We have a $25 copay now. The generic they sent my husband the last time was manufactured in India.

 

[pecas]

gooseberry, that is so wonderful.

I've met my deductible this year, so mine is fully covered.