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Ataxia Support Network

Trorilozole


#1

A Clinical Trial for BVN-4157 Troriluzole 200mg is estimated to commence 31 January, 2019. For Adult subjects with SCAs 1 - 2 - 3 - 6 - 7 - 8 - 10

Clinical Trial No: NCT03701399


#2

I started Trigriluzole (BHV-4157) today at 140mg daily for the expanded study for 1 year. The dose will only be increased to 200mg if the SARA score falls by 2 points on 2 successive visits.


#3

200mg relates to the published info given, maybe it refers to newly enrolled patients :thinking:xB


#4

I initially thought that too. But that’s not so.


#5

:neutral_face: You would expect Clinical Trial info to be accurate :roll_eyes: xB


#6

The clinical data says 200mg. It’s up to the participant and the research physician to increase it to 200mg if the SARA score falls by 2 points for 2 consecutive visits. Because, some at 140mg said they have improved, and the data shows some halting of the progression of the disease. We shall see. I think there was not as much progression in me while I was in the initial phase 2/3 study last year. There was no side effects, and since Biohaven has agreed to pay for all my travel expenses, I thought it may be worth giving it a shot. 30% of all the research study don’t get done because of lack of participants. I will contribute, regardless of success or failure.


#7

Shoaib,

Are you saying you saw no improvement with the drug?

Thank you,
Piper


#8

I did not see a significant improvement that I can tell. But looking back, there was no significant worsening either. Analysis of data from the study did not show any worsening of SARA score.


#9

I contacted UTSW here in Dallas, Tx to see if they are doing research here. UTSW is big on research but so little is being done for ataxia.

They are going to let me know.

My concern is that I don’t tolerate any medications because of what they make them with. It’s a catch 22.

Piper


#10

I saw the centers that are recruiting for the study are : University of California, Los Angeles and San Francisco, University of Florida, Johns Hopkins of Maryland, University of Utah, Emory University, Atlanta Georgia, University of Chicago Illinois, Harvard University Boston, University of Michigan, University of Minnesota, and Columbia University of NY. I did not see anything on Dallas, Texas.
ClinicalTrials.gov Identifier: NCT01060371


#11

Thanks for the information Shoaib.

Kind regards,
Piper