Alternate for Neudexta?

[ShiftKicker]

This was brought up in the thread re: B12 shots, and I didn't want to hijack the thread further.

In that thread, we discovered 3 Canadians (myself, Trixi80 and Gorby) all seem to be seeing the same neuro- who is quite conservative in offering treatments and options. Neudexta was brought up, but it seems it is not available in Canada. I have seen elsewhere (and for the life of me, I can't find it) that compounding pharmacies can mix up a batch of the same formula Neudexta is a name brand of. While I can access the info about what it's made of, I have not seen much in the way of people who have reported getting it this way. Ideally, it would be great if a Canadian who has done this is able to provide feedback here, but any person with experience in getting it mixed up instead of getting the name brand would be great.

Many thanks

Fiona

 

[patoyeah]

Delysm cough syrup has the active ingredient that Nuedexta offers, except it does not have the quinine, which keeps the Dextromyophan (sp? ) in the body longer. u may know this,.

there are several extensive threads about this at ALS TDI. it is guess work to get the correct dosage. one study showed a very small amount helped bulbar issues and a higher amount showed some benefit for FTD. from that study it seems u would have to pick one or the other / which dosage amount u wanted. going with the Delsym cough syrup is guessing at the appropriate dosage. quite a few pals in those threads claim benefit from that cough syrup. at Costco 2 bottles are about $20 usd, can be bought online also.

i tried to get quinine independently. it seems hard to get now.

 

[ShiftKicker]

Thanks, Pat. I understand it's the interaction between the dextromethorphan and the quinidine that makes it so effective for a few different symptoms. I've done a fair amount of reading about it, but it's the combo of a conservative treating doctor and the lack of Canadian experiences posted online that makes me ask.
I was hoping to hear from Canadians in particular about their experience in getting it made up at a compounding pharmacy, and how they got their doctors to prescribe it (or if the doctors offered it as an option first).

Thanks again.

 

[Nikki J]

Quinine is hard to get in the US. The other ingredient in Nuedexta is quinidine which is a prescription but the dose of the prescription pills is so much higher it is not really possible to replicate without a compounding pharmacy. Fiona were you possibly thinking of the threads on tdi about trying unsuccessfully to get it compounded? I know Riku tried and maybe others but I don't remember anyone succeeding. I hope you can find it but I wonder what the compounder could use for the quinidine part as they can't manufacture the chemical

ETA. I am confused. Is the issue your doctor won't prescribe or that it is not available in Canada?

 

[ShiftKicker]

One of the other people on this forum was told by our mutual doctor that Neudexta is not available in Canada. I saw a while back on FB that people had successfully got it compounded- and had provided info on how they achieved that. I can't find those posts now, so I'm not sure whereabouts they lived- it may have been in the UK. I was hoping for someone in Canada to have been successful could provide info on how they went about it. However, it may not be possible.

Note- Quinine is available at some specialized pharmacies here without a prescription (I have purchased for cramps in the past). But quinidine is something I have no idea about.

Thank you

 

[Trixie80]

The first time i asked for neudexta dr. B emailed the following reply. The second time i asked was at my clinic appt where she said its not available in canada.

We treat PBA with SSRI's, which are a class of antidepressant, although often at a lower dose than that required for depression.

My recommendation would be to see your family doctor, who likely has more skills in the psychiatry area than I do. I would defer to him if he wants to adjust the anti-anxiety meds and/or add an antidepressant. If he wants to add an antidepressant, or if he feels this could be PBA as he doesn't find anything to suggest anxiety or depression, I would suggest adding citalopram, which is the medication I use for PBA (with good effect).

I dont know much about SSRIs but maybe they would work