When on earth will traluzole be available - Ataxia UK

Ataxia UK

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When on earth will traluzole be available

xiaoduoyu profile image
7 Replies

I don't know why people seldom discuss troriluzole. It has strong evidence on SCA3 to prove that it has significant therapeutic effect. I really look forward to its coming out. It gives me hope to live and wait for a cure

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xiaoduoyu profile image
xiaoduoyu
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7 Replies
wobblybee profile image
wobblybee

The last information was the press release (posted here) ....biohavenpharma.com/investor...

xiaoduoyu profile image
xiaoduoyu in reply to wobblybee

问题是,报告已经过去三个月了,其与FDA合作的消息一点也没有。我觉得自己变差的速度很快,也许是因为我的重复值高达83😭

wobblybee profile image
wobblybee in reply to xiaoduoyu

Copied from google translate

The problem is, it's been three months since the report, and there's no news at all about its cooperation with the FDA. I feel like I'm getting worse fast, maybe because my repeat value is as high as 83

Copied from google translate

还有许多其他人在等待何时可用。 当这种情况发生时,新闻将迅速传播。

There are many others waiting for this to be available. News will travel fast when this happens.

Buffergirl profile image
Buffergirl in reply to wobblybee

All a little over my head I'm afraid so have passed on to my neurologist (for what it's worth). Thanks.

Buffergirl profile image
Buffergirl

Hi, could you tell me what this drug is and how you heard of it? I still can't believe that we, the patients, have to do all this research ourselves whilst struggling with incredibly challenging conditions. Talk about DIY NHS!

wobblybee profile image
wobblybee in reply to Buffergirl

🙂 The link explains it...

biohavenpharma.com/investor...

wobblybee profile image
wobblybee in reply to Buffergirl

🙂 It isn’t easy to understand..

This drug has been in clinical trials for a number of years..

Troriluzole (also known as Trigriluzole, BHV-4157, and FC-4157)

We all have falls..but only SCA3 people were noticeable in showing a significant improvement.

‘Jeremy Schmahmann, M.D., Professor of Neurology at Harvard Medical School and Founding Director of the Ataxia Center at Massachusetts General Hospital (MGH) commented with regard to the findings, "The importance of morbidity related to falls in this patient population cannot be overstated. The reduction of falls in the troriluzole group, combined with the progression of f-SARA scores in the untreated SCA3 group compared to SCA3 patients on troriluzole, demonstrates that SCA3 patients are experiencing a clinically meaningful improvement in ataxia symptoms on troriluzole treatment."

Basically, all these SCAs were included in the study..and SCA3 stood out well above the rest as having the most promising reaction.

SCA 1 - 2 - 3 - 6 - 7 - 8 -10

‘In the SCA3 subgroup (Figure 1), troriluzole showed a numerical treatment benefit on the change in f-SARA score from baseline to Week 48 compared to placebo (least squares [LS] mean change difference -0.55, nominal p-value = 0.053, 95% CI: -1.12, 0.01). SCA patients treated with troriluzole showed minimal disease progression over the study period. Further, in patients in the SCA3 subgroup who were able to walk without assistance at baseline (i.e., f-SARA Gait Item score = 1), troriluzole demonstrated a greater numerical treatment benefit on the change in f-SARA score ‘

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