Riluzol

[slopokahontas]

I survived another ALS clinic! My Dr. Brought up rilusole. I'm wondering who all has taken it. I was just worried about the liver aspect since I lab to use my love a while longer, and did you feel nauseous?

 

[Nikki J]

Tons of posts and opinions here. Yes it may make you nauseated. Or it may not. If it does it may pass after a couple of weeks . Or not. Worth trying? I believe so. Why did they not offer it when you were diagnosed? It works better the sooner you start. Some people will say it only gives you a couple of months. My neuro says it extends life by ten percent
If you start early maybe more.
I started very early and it almost stopped my twitches but more important stopped my suddenly rapid progression and in the time I have taken it have progressed only a little. I am lucky no question but unless you try you have no idea how you will react. My sister also takes it and she noticed nothing but she is still here ( not vented) and has outlived the average lifespan of our gene defect type of ALS by over a year

 

[davbo49]

it wasn't good for me. it got where i couldn't keep it down. so i stop taking them.

 

[Lilacs53]

I'm in my 4th month of taking it and the only side effect that I have noticed is once in awhile it will make me feel a little nausea, but it goes away within a 1/2 hour or so. I had my liver tested yesterday and should be getting the results back next week. I don't know if it's helping, because I am the first one in my family to of ever gotten this disease, so I have nothing to go by. I think it might be though.

 

[slopokahontas]

I think she was waiting because it's expensive and my insurance won't cover it. Now that I'm not working,I applied for disability. I also like wine every now and then and she said I can't drink with it.

 

[tripete]

It made me to nauseated to take, so I stopped. Maybe it was the wine with me, no one ever said anything about that. A couple of glasses of Merlot are what I look forward to.

I am not sure how to determine its benefit as ALS causes us to have "ups and downs" with everything. Some days my fasiculations are worse then others, same with cramps. How do you determine if it adds time or not when everyone progresses differently? I have read as many studies as I can find and there seems to be so little validated information on anything as it relates to our assassin.

In the end it comes down to living what remains the best quality of life that you can. If you believe it will help try it. If it makes you sick stop, we don't want to live what we have left feeling bad.

Oh, and don't get me started on the insurance companies.

 

[davbo49]

i have to say so to. what is 2 to 3 more months to happiness.

 

[starente15]

My dad lost his appetite and a lot of weight in the time he took it. We tried twice but it had the same effect both times. He's progressing slowly as it is so it wasn't worth the weight loss/weakness.

 

[acesjr68]

Who wants to suffer longer and be a burden on others. Just my opinion.

 

[Nikki J]

The OP has a number of children. Some very young. That may be a factor in deciding. And if you start it early enough it may delay the time when you are suffering and a burden. I probably would stop it then myself. Each of us has an acceptable quality of life and it can be very different among us.

 

[jaynecass]

I have been taking Riluzole for just two months. I haven't had any nausea, or loss of appetite. I tend to see it as belonging to the experiment that is the medication. I must admit, because of the difference of progression we all feel, that I'm not sure how any doctor can give you solid numbers of months or percentages of life span when we don't know how or why the disease progresses as it does in all of us.
Jayne

 

[azgirl]

I think it's worth a try. Seems like it helps some of us more than others which I think is the nature of this disease...we're all so different. I had no nausea, slight problem with liver counts early on which resolved after a few months. I still enjoy some red wine each evening and doc said that's fine. No way to really know if it's slowing progression, which is whole goal. The misconception is that it only adds a couple of miserable months at the end.

 

[MaxEidswick]

>The misconception is that it only adds a couple of miserable months at the end.

one hopes

 

[mcwtlg]

I just started taking it this week. So far the only side effect (which seems to only last a little bit) is a mildly "itchy" inside of my mouth. No nausea or drowsiness and my appetite is normal, so far.

As a side note I read some articles on how it has some psychiatric use (antidepressant properties) as well as possible Alzheimer use. It would be interesting if anyone reports a mild mood boost by taking this.

I am interested to see how this goes.

 

[MaxEidswick]

>It would be interesting if anyone reports a mild mood boost by taking this.

hah!