New to als

[mohdfxr]

Was told last Friday that I have als. Kind of strange out here? Not sure what to do? And to take that new drug to give a few months of life? Heard bad things about it. Does anyone take it? Would you please tell me about it?

 

[Lkaibel]

My husband just started n Rilutek and feels crummy for about an hour after each dose but okay otherwise so far.

I am so sorry about your diagnosis but there is a lot of support here.

 

[timag49]

I have been taking Rilutek for 4 years with no negative side affects. Don't know if it is working but 4 years after diagnosis my progressive loss of function stabilized about 11 months ago. There may be no cause and affect but also no reason to stop.

 

[Jocalyn8]

Hi,
Sorry to meet you here. There is a lot of support here on the forum.
Riluzole:
I have been taking it for 10 months now. The first days I was a little queasy, now nothing. What the heck ..it has generic available and pretty affordable. I would go for it.
You will find they can do very little for us.

Cheers

Jocalyn

 

[mohdfxr]

Thank you all so much. Not sure my liver will take it and don't know for sure yet. Ken

 

[diagnosed2016]

Sorry you are here. My husband has been on it two months. He says he feels a little drunk after taking it but then evens out after an hour or two. He tried doubling his dose last week and it was really hard on him, so he is back to the regular 100mg. The benefit for the extra dosage appears pretty small so it doesn't outweigh the side effects.

 

[faithandlove]

Welcome to this forum, but I am very sorry you were diagnosed with ALS. I hope your progression is slow.

I take my Rilutek just before bed, and have no side effects. I'm suppose to take it twice a day, but I hate taking drugs, and one at night is fine.

Hugs,
Deb

 

[Nuts]

Welcome to our little family. I'm so sorry that you had to join, but there is no better place for information and support.

Be sure to read the stickies--there is a ton of information there.

My husband took Rilutek for over two years with only a little Nausea early on. His liver is showing signs of damage (which I suspect has more to do with raging Diabetes than the drug), so he's had to stop. I would try it if I were you. Your liver function will be monitored.
Becky

 

[scaredwifetx]

Sorry that I am welcoming you here. You will find that everyone here can and will help you fight the battle.

 

[GregK]

Welcome & sorry, Ken.

There is a huge wealth of info stored in this forum including discussions about Riluzole.

Get familiar with the Search feature!

 

[affected]

Sorry to welcome you here.

 

[Margesmn]

Welcome Ken. I'm sorry you find yourself here. I hope you will find this forum as helpful and supportive as I have.
It's been a gift!

 

[starente15]

Sorry to welcome you here. My dad took Rilutek but quickly started losing his appetite and taste for food which led to drastic weight loss that he couldn't afford. Stopped taking it and appetite/weight returned. Tried again to see if it was a fluke and the same thing happened so he ended up not taking it. You'll find a lot of support and knowledge here.

 

[BlueTrain]

Ken - sorry to welcome you here. This disease sucks. I m taking Riluzole/Rilutek but I'm not sure how much it's helping. Personally, I haven't had any side effects, so I'll continue taking it. I'd say give it a shot to see how well you tolerate it, and remember to get your liver function enzymes tested.