Riluzole probems?

[danrising]

I have tried taking Riluzole several times. I would start out taking one a day for two weeks then move up to two a day. After a week or so I would stay so tired all the tim and my shoulder and elbows would hurt at night. I would back off to one a day and still had the fatigue so I would quit taking it and my fatigueness would go away. Went through this process several times with same results. Anyone else having this issue?

 

[lgelb]

Fatigue can be a side effect of almost any drug strong enough to help in some way. You've re-challenged yourself several times and your body is telling you that this drug is not for you.

 

[FSHolbrook]

I am guessing that Riluzole is not the problem. I am guessing that you are doing too much thus the fatigue. I know that is what I found when I backed off moving around , driving etc. I got much tired.

Rick

 

[danrising]

Thanks for responding Rick, I keep blaming it on the Riluzole because my fatigue is much less without taking it. My level of activity is higher without taking the drug and my fatigue is lower? I am going to try another round with it starting on Monday. I hope I do better with it this time.

Dan

 

[MaxEidswick]

Hi, Dan --

Adverse effects[edit]

----- snip
Very common (>10% frequency):[8]

Nausea
Weakness
Decreased lung function
----- end snip

However, I also noticed:

----- snip
There has been some evidence to show that higher doses might produce more significant improvements in ALS patients but at £5 a tablet it is at risk of being prohibitively expensive given the modest benefit to patients. One study in the Netherlands found that riluzole is metabolised differently by males and females, and its levels in plasma are decreased in patients who smoke cigarettes or take omeprazole.[3] A Cochrane Library review states a 9% gain in the probability of surviving one year.
----- end snip

This is new to me and worth exploring further, thanks!

 

[danrising]

Thanks..
Good and bad. Weigh the quality of life.

 

[emi82]

Hi everyone,
My mom just recently stopped Riluzole and she seems to have her appetite back.

 

[danrising]

I have never lost my appetite. I will be starting back on Riluzole on Monday to see if there are any different results. If it helps even a little I want to take it.:lol:

 

[MaxEidswick]

Hi Dan – maybe if you start in smaller doses it would be easier. Good luck.

Max

 

[lostingeorgia]

I have taken Riluzole for 4 years. No problems. Nuedexta (for PBA) is another matter. It makes me very drowsy and gassy. But I don't like the crying spells without it.

 

[danrising]

Been back on Riluzole for a month now with no problems. Yeah! Maybe ok now..

 

[AfraidButNotAlone]

I just started a week ago

 

[gjbuddy]

Riluzole probems?
I could not take it. I'm still working and per my doc, took one in the morning and one in the evening. Within 30 minutes of taking the morning pill I could hardly walk. My balance is bad already, but I still work part time, drive, etc. I felt that I could not drive or work with out falling over! I felt numb and tingly and my eye sight was blurred. I tried for almost a month and at my docs advice, stopped. I feel much better off of it. Maybe I will try it again later when I'm no longer working.

GJ

 

[skipper66]

My dad is 79 and is in a trial of achatar (sp?) at a low dosage. He has been diagnosed for 2 years now with ALS. The doctor mentioned the possibly of him going back on riluzole. He was on it for awhile when his symptoms started. He seemed to have more diffculty breathing while he was on it and more fatigued. The drug scares me but it's going to have to be his decision.