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DebMta, Namenda has been approved by the FDA for treatment of Alzheimer's only. Doctors sometimes prescribe it off-label for other kinds of dementia (because there are not good options approved for other kinds of dementia.)

Since your son does not have dementia, his doctor apparently thought it might be worth trying for whatever similar symptoms your son has. This is an off-label use. So in this case it is being used in a way that the FDA has never evaluated it for. That happens and it is not necessarily a bad thing. Every single drug to treat the symptoms my husband had with LBD was used off-label. And we were grateful for each and every one.

But when a drug is used off-label, the FDA approval does not apply.

Even when Namenda is prescribed as intended for an Alzheimer patient, the patient should be watched closely for side-effects. Some of these occur at known rates within the target population, and other are known to occur but the rates have not been determined yet. The problem is, even if it is known that X% of patients will experience a side effect, there is no way to determine WHICH X% that will be. So it is trial-and-watch-and-and-make-adjustments.

This is the nature of drugs in general and drugs for the mind in particular. Even though they may be terrible for some people, their value for others outweighs that in the decision about whether they can be marketed. (The side effects are not permanent and will go away when the drug is out of the system.)

Since your son is one of the X% who reacts with "hostility" he certainly should be taken off the drug by his doctor. There are known possible side-effects and a responsible doctor watches for those when prescribing the drug, especially off-label.

I'm sorry for your experience, and I hope the doctors find a more suitable treatment for your son.
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I have seen Namenda work on people, I am also seeing that at a stage, it can make them mean, not everyone of course, some peolpe do well on it with no problems. I work with people who usually end up on hospice, one thing i over herd is when a person is declining, and getting violent they take them off the Namenda, and i see the difference in them, so I belive the family and loved ones need to look out for the people they love, and if they start getting mean, not just the bad day, or genuine issues they might be dealing with, where it is putting them in a state of mind that they cannot be taken care of properly , maybe consider taking them off. Sometimes you need to think about quality, not adding a few more months in fear and anger.
Their is no black and white answer, if it is working for your loved one, let it work, if it stops then consider stopping it. My understanding is it slows down the progression, it doesn't stop it.
I came to this site because i have noticed the change in some people I care for, I don't want to recomend taking them off or decreasing the dosage on a whim, I am not a dr, and i don't prescribe, but i do talk with families that are asking what can i do to make it nicer for my loved one, i only can oly make a suggestion, they need to follow up with their doctor.
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My mom starting taking Namenda about seven years ago. Her dementia continued to progress at about the same rate. I asked her PCP about discontinuing this medication about three years ago after reading that it is only effective for a couple of years at best. He said that no one knows how long it works or if she would decline faster without it. Late in 2015 mom started getting more and more aggressive, and after reading about a possible link between the Namenda and aggression, I asked for it to be discontinued the past January. I have not noticed any acceleration in her decline and she is still aggressive. She is being treated with a couple of new drugs to control her aggression. Bottom line - I don't think the Namenda made any difference in either her decline or her aggression. The only difference it seemed to make was in her bank account. I wish I had discontinued it several years ago.
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akdaughter, I also asked mom's doc a few months ago if we could discontinue the Namenda XR and the Aricept since she was experiencing aggression. The doc discouraged me with the usual "she'll go downhill if we do," and said the Aricept had been found recently to still be useful (though I never found that report on line). Since the aggression abruptly stopped and has not returned since that time, I still give her both, albeit I did experiment and did a week without giving her the Aricept. I saw no difference in behavior and again, the anger has not occurred for quite awhile. We're also finished with the trial drug Nuedexta, since I also saw no difference with this drug. Yep, I think the expense of the Namenda is ridiculous but will bide my time about this.
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