Was just reading about this study for ALS "to determine if Nuedexta improves bulbar functions, including speech, swallowing and saliva production". http://alsn.mda.org/news/als-n...eeks-60-participants
This drug is already available by prescription. Any idea if it might be helpful for KD patients?

HI All,

I do not have anything significant to add in regard to nuedexta - other than there is no current evidence that it has any affect in KD - no one has ever looked.

Dan, I will add that motor neurons in the brain are affected. The 'B' in SBMA is for Bulbar, & this refers to the bulbar region of the brain - the lower part that includes the medulla. The difficulty that many KDers have with talking and swallowing, for example, is due to the effects that KD has in bulbar region of the brain.

My swallowing and voice have been adversely affected by KD, so I am interested in anything that might help. Are there any side effects to this drug?

The Micromedex used by pharmacists lists these as the side effects of Nuedexta:

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
-Common


Cardiovascular: Peripheral edema (5% )
• Gastrointestinal: Diarrhea (13% ), Vomiting (5% )
• Neurologic: Asthenia (5% ), Dizziness (10% )
• Respiratory: Cough (5% )
-Serious

• Cardiovascular: Prolonged QT interval
• Hematologic: Immune thrombocytopenia
• Hepatic: Hepatitis

View Detailed information in DRUGDEX
A) Mechanism of Action

1) Dextromethorphan is an uncompetitive N-methyl-D-aspartate (NMDA) receptor antagonist and a sigma-1 receptor agonist with an unknown mechanism of therapeutic effectiveness in pseudobulbar affect. Quinidine competitively inhibits the metabolism of dextromethorphan by CYP2D6, thereby increasing and prolonging plasma levels of dextromethorphan. In 1 assessment, dextromethorphan exposure was increased by approximately 20-fold with the addition of quinidine. In patients with pseudobulbar affect, plasma levels of quinidine were within 1% to 3% of the levels required for antiarrhythmic efficacy
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

I'm not sure I'm smart enough to know if that is good or bad.

I have been taking Nuedexta for a month. I got my neurologist to prescribe it. The Nuedexta website has a coupon so that you will only pay $30 for a months supply, otherwise it is VERY expensive. So far, I haven't noticed any significant change, but I will keep you posted.

I just read the article about Nuedexta.

I'm really surprised to hear that a Neurologist would prescribe a drug to someone which is not fit for purpose, and because a patient had suggested it. The whole purpose of the Trial was to discover if it helped people with Bulbar issues in ALS not KD. ALS and KD do share some common symptoms but there are certain drugs which KD patients should not take without proper consultation due to the nature and specific effects of KD.

It clearly sates: "The MDA does not recommend anyone use Nuedexta to treat Bulbar Symptoms in ALS until it's safety and efficacy have been proven in clinical trials". The same would surely apply to all other conditions that have Bulbar function problems such as KD. I don't wish to appear rude but in a way yourself and you're Neurologist are conducting your own clinical trial on a drug designed to help ALS patients.

I recall my Neurologist recommending Quinine Sulphate to treat the cramps I get. I am aware that some of my KD friends do take a form of Quinine and they say it does help them with no side affects. I would never dispute that. For me however it didn't work and I'm left with chronic permanent Tinnitus. When I researched the drug I discovered the Tinnitus side effect warning. Since then I won't take any drug unless it has been researched and properly assessed for my condition. Just to be safe.

My best wishes to you C.D. Sorry.... Don't know your first name.

Eric

Eric, that is interesting about your reaction to Quinine. My neurologist recommended it to me also. And, it didn't work and I now have tinnitus. It just proves you never really know what will happen until you try something.

I hate to read all the possible side effects, but it does happen occasionally. I refused the treatment for osteoporosis because several people experienced severe muscle weakness for days, even weeks, afterward. That is just something I don't need. :-)

Hi Bruce.

I saw a hearing specialist and was given a White Noise ear plug. It has a volume control button and should be set at a slightly lower level than that of the Tinnitus level. The idea is to train the brain to listen to it and train the brain to ignore and forget the sound of Tinnitus. Now this can take months, even up to a year to work. In my case it had an immediate affect on the range of noises I was hearing. I'm left with one single sound now. It's the same sound you experience when you come away from a loud music venue, or the heavy sound of a ships engine room. You will know that sound I think with your sea going experience. It is constant and varies in volume.

Although Known side affects are stated, the Importance of researching a drug before an individual takes it isn't stressed enough. I now ask my local Pharmacist to check anything I am prescribed. He knows my condition and is more than happy to check it out.

When I told my Doctor about Quinine and my Tinnitus, the reaction I got from him was, I have worked with your Consultant Mr (Name Witheld) for many years and he is very good at his Job.

'Hmmm!' I thought. He specialises in MS and has only one other patient with KD. I know this patient and he has never been prescribed anything for his Cramps. Was I just an experiment? I do wonder sometimes.