Symptomatic treatment with dextromethorphan (Delsym)

[KenG]

I was recently reading some information online regarding dextromethorphan, which is an active ingredient for cough suppression, and apparently is an antagonist of glutamate receptors; which, as we know, are suggested to be partially responsible in neuron death in ALS.

The information I read included testimonials from other PALS as well as some research articles. Their are seemingly many testimonials that dextromethorphan is effective at quickly and temporarily improving speech and swallowing trouble in PALS by a significant amount. Also, in a research article I skimmed through, it was suggested that a group of PALS receiving dextromethorphan therapy saw less rapid degradation in lower extremity function.

Any comments/thoughts?

Ken

P.S. I do not intend on advertising a certain drug here. Dextromethorphan is a generic drug name, and Delsym is just a common OTC medication which contains the drug. Many other medications also contain this active ingredient.

 

[KenG]

There are seemingly many testimonials*... sorry, I hate when I mistake there/their.

 

[Nikki J]

I think there is as you say widespread belief about benefits of dextromethorphan for swallow and speech among both patients and some neurologists. Do you have a reference for the benefit for lower extremity function? That is new to me and would love to read the study!
Thanks

 

[KenG]

A clinical trial of dextromethorphan in amyotrophic lateral sclerosis.
Gredal O1, Werdelin L, Bak S, Christensen PB, Boysen G, Kristensen MO, Jespersen JH, Regeur L, Hinge HH, Jensen TS.
Author information

Abstract
INTRODUCTION:
Although the cause of amyotrophic lateral sclerosis (ALS) is unknown, excitotoxicity mediated by glutamate has been implicated. Dextromethorphan is a NMDA-glutamate receptor antagonist with neuroprotective properties.

MATERIAL AND METHODS:
The effect of treatment with dextromethorphan (150 mg daily) in ALS patients was evaluated in a randomized, double-blind, placebo-controlled study. Forty-five patients were included in the analysis.

RESULTS:
At the end of the treatment period, 12 months after randomization, 15 patients (65%) in the placebo group and 12 patients (55 %) in the dextromethorphan group were still alive (log rank test, P=0.49). Rates of disease progression, as expressed by rates of decline in pulmonary function and in functional disability, were similar in both groups except for a significantly less pronounced rate of decline in the ability scores for the lower extremities in the dextromethorphan group.

CONCLUSION:
Treatment with a relatively low dose of dextromethorphan did not result in an improvement in 12-month survival in ALS.

 

[KenG]

I do not suggest anyone go and start taking 150mg of dextromethorphan. From what I have read from other PALS, side-effects can be high at larger doses, and most PALS using this therapy were taking in the range of 10-45mg dextromethorphan.

 

[Nikki J]

Thanks that was a small study in 2009. Only 12 of the treatment group were alive at the end. It is interesting for sure but if it were replicated there would be more about it. That said, in lower dose, as you mention,certainly worth considering for symptomatic bulbar/ pba relief

 

[KenG]

Correct, it's definitely too small of a study to really be conclusive; but for how much talk about dextromethorphan there is among PALS, it's surprising there aren't more formal studies on it.

 

[Nikki J]

They are studying neudexta though. Easier to get funding for that than a cheap otc drug.

 

[MaxEidswick]

>They are studying neudexta though.

and already thru the FDA pipe ...

Dextromethorphan/quinidine (trade name Nuedexta) is a combination drug containing dextromethorphan and the class I antiarrhythmic agent quinidine. It is the first FDA-approved drug for the treatment of pseudobulbar affect (PBA).

 

[Nikki J]

Yes it is available now but they are still doing an active clinical trial l believe to see if there is benefit beyond PBA symptom relief which is its current indication. Any improvement of function is still anecdotal. If they can show any slowing of progression they can get another indication. To get it now you have to claim PBA symptoms for insurance to pay at all

 

[KenG]

Yeah, neudexta is, as you said, a prescription combination drug. But one of its two active ingredients is the dextromethorphan, which is OTC; and this is the specific drug I have seen much conversation about among PALS. My father is in early stages of speech loss and swallowing difficulties, so I'm going to see if the DM has any benefit.

DM is addictive, but the effective dose I've seen recommended by PALS is less than half of the adult dose recommended by the package.