Your ALS Guide

✓Supports this

“None of the approved treatments halts or reverses ALS/MND.”

Says the same thing at the top of its rundown of the approved drugs, and says it without softening: they can slow decline modestly and add time, and they do not stop or reverse the disease. Its list covers the drugs approved in the United States, so it does not speak to methylcobalamin, which is approved only in Japan.

These drugs can modestly slow functional decline and help people live longer, though they do not stop or reverse ALS.

Approved Drugs for ALS

✓Supports this

“In randomised trials riluzole extended median survival by about two to three months.”

Gives the same figure for riluzole from the original studies, as an average of three months. It adds that the increase may be longer, which comes from studies of routine care rather than from randomised trials, so the answer keeps the randomised figure.

Initial studies showed that riluzole helped people live an average of three months more, though increased survival time may be longer.

Rilutek® (riluzole)

Used across the whole answer

✓Supports this

“Nuedexta treats pseudobulbar affect. It does not slow the progression of ALS/MND or help people live longer.”

States it directly, and separates the two things Nuedexta is and is not for: it does not change the course of the disease, but it helps with the sudden episodes of laughing or crying that pseudobulbar affect causes.

Nuedexta® does not slow functional decline or help people live longer, but it can help regulate emotional control for ALS patients who experience pseudobulbar affect (PBA), which is characterized by sudden and unpredictable episodes of laughing or crying.

Nuedexta®

✓Supports this

“Tofersen is only for people whose ALS is caused by a SOD1 gene fault, which is a small share of everyone with the condition.”

Puts a number on 'small': about 2 in every 100 people with ALS have a SOD1 mutation. It also notes that the mutation is found by genetic testing, which is why the answer says testing matters here.

Tofersen can slow the rate of disease progression for the approximately 2% of ALS patients—those who have an SOD1 gene mutation (which can be detected through genetic testing).

Qalsody® (tofersen)

Further reading

Practical breakdown of ALS medications and where riluzole fits

Further reading

Practical breakdown of ALS medications and where edaravone fits

Further reading

Practical breakdown of ALS medications and where Nuedexta fits

Further reading

Practical breakdown of ALS medications and where tofersen fits