[Mark Wong]

Hi,

The high dose B12 injections are given to attempt to improve limb strength primarily.

Regards,

[Mark Wong]

Hi Romolo,

Hope that you are well.

Have you heard about how effective Perampanel (an anti-seizure medication) is in ALS patients ? There are ongoing trials (at at least three sites worldwide) trying to assess its effectiveness.

Perhaps persons around MGH may have some early news as to how things are progressing in testing the efficacy of this agent.

Best regards,

[Mark Wong]

Subscribing to ALS News Today would be a very useful source of information. When one subscribes to ALS News Today is there an email alert when a new article is posted to the site ?

[Mark Wong]

Thanks for the info. Romolo.

I am on generic Nuedexta and high dose injectable Vit. B12 (used to improve limb strength).

I think with the future Ibudilast trial they will have participants with onset of symptoms less than 18 months and who are not on Nuedexta, B12 nor Radicava.

I take it that in your trial, Ibudiladt didn’t have a significant positive effect ? What was your experience with Radicava and are you still taking it ?

Best regards,

[Mark Wong]

Hello Romolo,

Thanks for the information. It’s a MGH trial; I don’t think they are recruiting yet.

I am thinking of sourcing generic Edaravone from overseas. Do you know if it can be used on patients using Nuedexta and Vit. B12 injections ? Have you ever been on Edaravone ?

Best regards,

[Mark Wong]

Hello Romolo,

I noticed that among the exclusion criteria for the ongoing Ibudilast trial is that the patients are not on injectable Vit. B12 or Nuedexta. Can you say if you were on these medications at any point before starting the trial ?

I am about to start inj. Vit. B12 and generic Nuedexta but I don’t know if I can then use Ibudilast at some point without having to discontinues the Vit.B12 and Nuedexta ?

Is it a question of toxicity why Ibudilast should not be used with these medications or is it, for the purpose of correctly interpreting the results of the study, they want to eliminate any potential improvement (confounding factors) from these other medications (and not incorrectly attribute them to the effect of the Ibudilast) ?