Help please on sourcing Nuedexta in Canada

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LizE

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Hello everyone,
I'm new to the forum. My dad has just been diagnosed with ALS, and likely a few years into this devastating disease.

Can anyone point me in the direction of how I can obtain the medication Nuedexta? We live in Toronto Canada.

He has bulbar onset and saliva and speech is a big issue bat present.

Thanks
 

ShiftKicker

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Liz, welcome to the forum. So sorry you find yourself here.

Neudexta (as branded and sold in the US) is not still available in Canada as far as I know. However, you can get the drug compounded at a pharmacy in Canada. A few of forum members have done so. I am hoping one of them can provide more details and what their experience has been. It is still only available with prescription and compounding it can be costly.

There is another thread here that gives the formula: https://www.alsforums.com/forum/general-discussion-about-als-mnd/38137-help-sourcing-neudexta.html
 

NinjaLady

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My PALS uses the dextromethorphan quinidine compound which is what Nuedexta is and it is mostly covered by insurance/not too expensive ($30/month for us approx). It has been quite effective for my PALS PBA and I believe it also has improved his swallowing and speech. Best of luck.
 

LizE

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My PALS uses the dextromethorphan quinidine compound which is what Nuedexta is and it is mostly covered by insurance/not too expensive ($30/month for us approx). It has been quite effective for my PALS PBA and I believe it also has improved his swallowing and speech. Best of luck.
Thanks so much. Where do I get the compound from?
 

ShiftKicker

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Liz, you can't get it without a prescription from a doctor- so your dad's neurologist or general practitioner would have to write one for him. Once you have the prescription in hand, you can take it directly to a pharmacy. Either straight to a compounding pharmacy (just do a search of your home town and "compounding pharmacy" and you will see where they are) or take it to a regular pharmacy and they will send it to a compounder for a fee for you. For instance, my local Safeway will take any prescription and just farm it out if they can't fill it on site.
 

NinjaLady

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Exactly what ShiftKicker said...somewhere around you that will mix up the compound (ours are in gel cap form) and maybe they can deliver it over too.
 

lgelb

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Liz, since your dad has bulbar onset, just a note that it can be compounded in liquid form instead of gel caps, and liquids can of course be thickened with corn starch, apple sauce, yogurt, egg. If your dad has swallowing issues, you may want to discuss a feeding tube with him and his clinic.

Best,
Laurie
 

LizE

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Liz, since your dad has bulbar onset, just a note that it can be compounded in liquid form instead of gel caps, and liquids can of course be thickened with corn starch, apple sauce, yogurt, egg. If your dad has swallowing issues, you may want to discuss a feeding tube with him and his clinic.

Best,
Laurie
Huge thanks everyone. I’ll take the suggestions and give this a try
 

LizE

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Everyone, I’ve run into troubles finding a few compounding pharmacy that can get Quinidine from their supplier! They only have Dextromethorphan, the other component.

Can anyone PLEASE direct me to a specific pharmacy in the Greater Toronto Area in Ontario, Canada?

Thanks again everyone. So appreciative of the support.
 

NinjaLady

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HI LizE - I found the special Pharmacy through the Pharmacy that couldn't do it and I would suggest the same for you. If they can't help you, either your clinic or your normal pharmacy should help source this for you. Just a thought...
 

LizE

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Ok. I’ll try again. Thank you
 

lgelb

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Re: Alternate for Neudexta?

Without knowing anything about the supply chain, here's a list that might help.

And I think this is the thread you mean. Evidently there is compounding in Canada.
 
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