Nuedexta vs OTC dextromethorphan

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rmt

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My husband currently has a PLS diagnosis (just under 2 years of symptoms, so it is considered "probable PLS" for now). His only symptoms at this time are speech issues and minor swallowing issues. We've been reading about Neudexta and plan to talk to the doctor at our visit next month. But I was wondering if anybody has tried using just over the counter dextromethorphan. Would the dextromethorphan alone possibly help with his speech and swallowing?
 
My sister who had experience with both thought they both helped the lability part though Nuedexta was better. No comment on the bulbar part though
 
Thanks for the info Nikki. We are going to try the dextromethorphan and see if it helps. And then talk to the doctor next month about Nuedexta.
 
I am currently taking Nuedexta to address Pseudobulbar Affect (PBA) associated with ALS. Nuedexta combines Dextromethorphan HBr (DM) and Quinidine sulfate, where the active ingredient is DM, and the role of Quinidine is to slow the metabolism of DM over 12 hours. Dosage is two capsules per day, one every 12 hours. The retail price is $1413.99, which is absurd, based on the low cost of the ingredients, and I am always looking for alternatives.

I recently came across Delsym. Delsym is an OTC DM-based cough medicine, differing from other cough medicines in that only DM is the active ingredient. In Delsym, the active ingredient DM is surrounded by an edible plastic called polistirex. When ingested, the polistirex slowly dissolves, releasing the DM over 12 hours, with recommended dosage every 12 hours.

This appears equivalent to the DM/Quinidine combination in Nuedexta, so I am considering trying Delsym as a replacement for Nuedexta. I have found no data on negative longterm effects of Delsym or the polistirex coating. There are no clinical trials documented to base a decision on. But I just wanted to ask if anyone else has learned/heard anything regarding this option.
 
The search function here shows some results
 
My pals has been taking delsym and quinidine, much less expensive than nuedexta (which he took early on) and our observation is it has the same effect. We are in our sixth year and he is still able to swallow and eat by month. Only recently has his speech deteriorated, we credit nuedexta or delsym/quinidine combo with his slow progression of bulbar symptoms. It is shocking how much they charge for nuedexta, we were fortunate to have good insurance for now but can’t imagine the cost to folks who don’t,
 
I also use Nuedexta for PBA. I have not tried switching to an OTC med with DM. Are you looking into it due to cost?
 
The Neudexta dynamic is weighing heavy on my mind. Since I turned 65 and have switched from private ins to SS with a supplemental policy. I have no disability thru SS and my supplemental ins has a five star rating in my area.

That being said the Neudexta now costs 562.00 per month, I do have the money but this is a robbery and is unacceptable and a violation of fairness and decency IMO. This a fine example of BigFharm greed.

I am one of those that with a lot of EL issues and have started to ween myself off of Neudexta. Don't tell anybody but.....I cry a lot even with Neudexta. I am going to try the otc Dextromethorphan and see where it leaves me.
 
First full disclosure I was told my crying for no reason was stress not PBA because I rarely laugh inappropriately so take this with a grain of salt. I had a very bad cough and took the dextromethorphan capsules. Crying stopped. Did an off / on cycle 3 times. It makes a difference. Supposedly there may be some antidepressant effect but I never felt depressed just randomly weepy. I hope it helps anyone who tries it
 
PBA is real and does affect the part of the brain with that affects emotional response. I started with EL long before my diagnosis. I have humiliated myself many times in public....a 6'5" 325lb dude crying uncontrollably must be a spectacle.

I have not been able to speak legibly for 5 years and between the EL and speech issues I don't leave the house very often. I am still self conscious about how I present myself in public, it will be a huge blessing to progress to a point that I just don't care!
 
I did not mean my neuro said PBA was not real. Of course it is and very debilitating. They just said I don’t have it. I am not so sure but dextromethorphan works so far and is cheaper than nuedexta would be anyway
 
I did not think you were down playing PBA...you above all know about PBA. Sorry you thot that. I will crawl back under my rock!
 
I just didn’t want you to think I was disrespecting your experience. Peace
 
I am still self conscious about how I present myself in public, it will be a huge blessing to progress to a point that I just don't care!
That really sucks! Whatever helps you, even if only a little, has to be a blessing. I hope you can get out of the house more.
 
I have inappropriate laughter much more than the crying. I hate it. It's extremely humiliating. Even my own family took a long time to really believe and understand that I was not feeling any amusement and was simply a prisoner watching in silent horror from inside my head as my body forced me to laugh like a crazy person. The worst is that I can't make it stop. Sometimes it goes on so long that I can't catch my breath and feel like I'm going to pass out.

Nuedexta helps a lot but doesn't completely get rid of it for me. I am lucky in that I only have a $30/month copay for it.
 
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