Seeking off label prescription for Triumeq in Australia

[Frankie13]

Hello all, I am new here My husband David has recently been diagnosed . We live in Australia and have been trying to source a prescription for TRIUMEQ. Our treating Neurology team won't prescribed because they are running the Lighthouse Trial but have said there is no reason that an another neurologist couldn't prescribe. We are yet to find a doctor in this country who would provide this . Has anyone else managed to get a prescription here in Australia ?

 

[Loulou22]

Hello Frankie,
I am in Melbourne and my neurologist at Calvary offered me an off label script. Have been on Triumeq for around 3 months now.
It is super expensive ($765 cheapest I can find) per month, as off label it’s not covered by the PBS. I can’t imagine a neurologist writing a script unless they see you and have all your details, or a referral from your current neurologist. Let me know if I can help in any way.
Laura

 

[Frankie13]

Thanks so much . We are seeing a new neurologist next month so hoping that we can get the prescription . It is very expensive but worth it of course if it’s helpful . I very much hope it’s helping you and would be keen to hear how you go on it. Are you feeling any adverse side effects from taking it ?
Thanks again

 

[Loulou22]

For the first week or so I felt a bit nauseous but that improved. I make sure I take it after a meal which has helped a lot. Your husband will have to have a blood test, which takes 3-4 weeks for results, to make sure he isn’t at risk of serious adverse reaction.
As to whether it’s helping or not I’m not sure, it’s so hard to tell, as nothing ever seems to be predictable with this thing!
My neurologist did say she sees ‘trends’ in those who take it so I think that’s encouraging.
I also take quite a few supplements I’ve learned about so hopefully something, or all of it in combination is helping at least somewhat!

 

[Ginger83]

Hi can I ask why do you want to try this? Is it meant to help with ALS?