adozi
Distinguished member
- Joined
- Dec 28, 2011
- Messages
- 233
- Reason
- PALS
- Diagnosis
- 03/2012
- Country
- US
- State
- KY
- City
- Louisville
Re: riluzole question
When discussing riluzole /rilutek, i find this comment by John1 most helpful https://www.alsforums.com/forum/gen...iluzole-rilutek-als-treatment.html#post290360
Is there a sticky on this? I don't know why we have to keep discussing whether it works when the research has been done.
John1's comment, In case you don't feel like going to the link :
There seems to be a lot of misinformation and downright ignorance surrounding Rilutek. Neurologists are among the offenders. Conventional and retrospective studies have shown that Rilutek definitely slows progression and extends lifespans for PALS. The three month figure is likely conservative and is based on a three year longevity. If a PALS is a slow progressor, the benefit will be proportionately longer.
I have been taking Rilutek for nearly 13 years with no side effects. I have my liver enzymes checked about every 4-5 months. Never any sign of elevation in them for me.
In a retrospective study of more than 800 ALS patients over a 10 year period, it was found that 38% of PALS taking Rilutek were alive after 5 years whereas only 12% of those not taking were still alive:
http://pn.bmj.com/content/3/3/160.full.pdf
Here's what the ALS Association says:
The ALS Association
The European Union made a study of its effectiveness and found that patients who took it for 18 months lived 2 months longer than those who did not. This would extrapolate to 4 months longer survival for those taking it for three years. Here the link:
http://www.ema.europa.eu/docs/en_GB/...C500056578.pdf
Based on the research, my advice is to start it as soon after diagnosis as possible.
When discussing riluzole /rilutek, i find this comment by John1 most helpful https://www.alsforums.com/forum/gen...iluzole-rilutek-als-treatment.html#post290360
Is there a sticky on this? I don't know why we have to keep discussing whether it works when the research has been done.
John1's comment, In case you don't feel like going to the link :
There seems to be a lot of misinformation and downright ignorance surrounding Rilutek. Neurologists are among the offenders. Conventional and retrospective studies have shown that Rilutek definitely slows progression and extends lifespans for PALS. The three month figure is likely conservative and is based on a three year longevity. If a PALS is a slow progressor, the benefit will be proportionately longer.
I have been taking Rilutek for nearly 13 years with no side effects. I have my liver enzymes checked about every 4-5 months. Never any sign of elevation in them for me.
In a retrospective study of more than 800 ALS patients over a 10 year period, it was found that 38% of PALS taking Rilutek were alive after 5 years whereas only 12% of those not taking were still alive:
http://pn.bmj.com/content/3/3/160.full.pdf
Here's what the ALS Association says:
The ALS Association
The European Union made a study of its effectiveness and found that patients who took it for 18 months lived 2 months longer than those who did not. This would extrapolate to 4 months longer survival for those taking it for three years. Here the link:
http://www.ema.europa.eu/docs/en_GB/...C500056578.pdf
Based on the research, my advice is to start it as soon after diagnosis as possible.
