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krishnan

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Apr 18, 2017
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UK
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Berkshire
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Reading
Hi All,

My dad has been diagnosed with ALS and currently his speech and swallowing ability is severely impaired. I saw some news on Neudexta providing some bulbar symptoms improvements and was hoping to try it for my Dad who is living in India (I am in UK). I am struggling to find a way to source it from US. Any help or guidance regarding this would be greatly appreciated.

Thanks

Krishnan
 

Nikki J

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Welcome to the forum. So sorry about your dad.

Since Nuedexta is prescription only ( and a very expensive one at that) I don't think getting it here would be feasible. Nuedexta is dextromethorfan and quinidine. It is the dextromethorfan that helps. The quinidine aids delivery. Unfortunately the quinidine dose is so different from the usual dose it is not feasible to get a prescription for that and add dextromethorfan . You could see if someone could compound it in India though it seems as if it is technically difficult as I have heard PALS elsewhere could not get it done.

Another option is to take plain dextromethorfan which is OTC in the US. Maybe in India too? Some people say that helped somewhat.

Btw I know Reading quite well. Used to visit family there!
 
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Manhattanite

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Hello Krishnan, initially we obtained ours by consulting with the folks at alsworldwide dot com. We held a FaceTime conversation with them and then they prescribed it through their doctors at a compounding pharmacy in New Jersey that makes a generic version. The pharmacy sent the drug to us. The cost was not as exorbitant as the branded drug.


I don't know if there will be restrictions in sending the drug to England but that might be a place to start. Good luck!
 

krishnan

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Thanks Nikki. I will try and see if I can find a compounding pharmacy.
 

Sroccia

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Hi!
I live in Canada and Nuedexta is not available here. However we were able to get my mom's doctor to write a prescription to have it compounded. The formula is : 20mg of dextromethorphan and 10mg of quinidine sulphate. Take one per day for the first 7 days. On the 8th day begin taking two a day (one every 12 hours). My mom is on her 8th day today. While there hasn't been a dramatic change, we think her speech has slightly improved. She has bulbar onset and was diagnosed in Feb 2017. Hope this is helpful! I wish you the best of luck on your journey. :)

ps In Canada, a one month supply cost $150 .
 

Inventor

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FI
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Espoo
I know that some people here in Finland have ordered a Nuedexta equivalent ex tempore product from Hopewell Pharmacy in the US, as there are no compound pharmacies in Europe that would master the mysterious art of grinding a 200 mg quinidine pill into 10 mg doses.
 

krishnan

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6
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Hi Inventor - Any specifics on the equivalent would be really useful.

Thanks
 

Inventor

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Nuedexta is basically just dextromethorphan (found in many OTC cough syrups) combined with quinidine that multiplies its half-life in the body. The problem is getting quinidine in sufficiently small doses (20 mg dex and 10 mg quinidine per serving). Although I have extreme reservations against anything Mr Byer is associated with, from what I have heard ALS Worldwide has been a reliable partner in helping PALS get the stuff from Hopewell to Finland.
 
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