Memantine


Hi, I am new to this group. My DH was recently diagnosed with "Alzheimer's type dementia". On the 7-step scale, I would rate him between 3 and 4. We are waiting to meet with a neurologist. In the mean time, our PCP has prescribed a drug called Memantine. Are any of you willing to share your experience with this drug?
Comments
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My DH with mixed dementia (AD/ALZ) has been taking it for almost a year. I can't say that I noticed that it does anything but it is being prescribed because it will slow down his progression. He was diagnosed when already in a mid-stage. There is no way to know how effective it is at slowing down the progression.
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My DW was put on Memantine for a few weeks. She seems to often have a reaction to medication and memantine was hard on her. I had to almost carry her back from a walk because she was walking with a pronounced lean and almost falling down.
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My DW has been on memantine since July 2022. She has had no adverse side effects. It is impossible to know how well it is working because there will be decline regardless. From what our neurologist told us and what I researched myself, I concluded it should should be taken if well tolerated (which fortunately it is).
It was rather expensive getting it through our health insurance for the first couple of years. Beginning in 2025, we have been charged substantially less for memantine through our same insurance.
My DW is on the donepezil / memantine combination which, from what I can tell, is pretty common for mid to late state ALZ patients.
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My experience is much like @Timmyd. DW has been on memantine for a few years with no adverse effects. His decline wasn’t as pronounced as it has been the last year, so maybe it did help in the early years. I still give it to him but don’t know if it is helping anymore. It doesn’t cost anything because Medicare covers it so it’s worth keeping it.
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My DH was given 5mg of Memantine twice a day starting last December when he began to be agitated and aggressive at MC in the evenings. He was in stage 5. It calmed the aggression and also seemed to improve his cognition for a few weeks. He is still on it. He's been home from MC since March, and is starting to manifest stage 6 and sundowning again.
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My wife has taken Memantine and Donepezil since 2017 without ill effects.
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my husband has been on it for three years. It slows AD but only a little.
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No issues for my wife with Memantine or Donepezil after quite a few years. They seem to be the standard meds to slow the progression. For my DW, first it was memantine, then Donepezil was added a few years later.
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my husband was on Memantine. The Neurologist said it might help his focus. It did not slow his progression. My theory was that if it caused no side effects to leave him on it. His doctor agreed.
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Thank you for the responses. You have been helpful, and given me confidence that we are doing the right thing.
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My DH was diagnosed with FTD/Alz about 4 years ago and had memory problems years before that. He started taking Mementine about 4 years ago, 5mg twice per day. I didn’t see much difference one way or the other. About a year later his neurologist increased the dose to 10mg twice per day. This made a big difference. It brought back his empathy which had been almost nonexistent for about a year. Now, years later in stage 6/7 his empathy is still very much intact.
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My DW has been on memantine and Rivastigmine since August 2022. I have no idea if it's helped or not.
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DH here has been on Memantine for a few years. Is it helping? Hard to say. But, his progression has been slow.
With our insurance it was expensive. Then I found CostPlus mail order. Very very reasonable. They don’t take our insurance, but a year’s worth was under the cost of one fill with insurance at the local large chain pharmacy. Then the doctor’s office goofed and sent it to the pharmacy in the local grocery store. They suggested GoodRX and that price there was equivalent to CostPlus. (GoodRX prices vary by pharmacy so you have to check the website for prices.)
DH is also on donepezil 23mg. Our insurance covered the lower dosage, but would it cover the 23mg. So I checked CostPlus and GoodRx. Both had it available at a reasonable price.
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The drug only delays progression so you shouldn't be able to discern whether or not it works in an individual.
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My DW takes both memantine and donepezil. She has experienced no negative side effects. Does it help? Who knows? But just in case it does we'll continue.
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Related question: which drug does your LO take at night? in the morning? do you notice that there's any particular effect of one vs the other?
Our experience has been that Donepezil at night kept her from sleeping deeply; she seemed to get up easily for her day program. Memantine in the morning was maybe making her sleepy - but that could also be from boredom on the days she's home and I can observe her. A couple weeks ago we switched them, and now she's tired in the morning and grumpy about getting up and out of the house. And she was in a decent mood throughout the long weekend, which hasn't happened for a while. Has anybody else noticed that one or the other has a noticeable effect on anything? I'll talk to her geriatric psychiatrist when we see him next month, just curious.
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My DW takes 20mg of Donepezil, all at night. She said if she takes it in the morning it makes her foggy.
She take 5mg mementine in the morning and another 5mg at night. We thought that it might be upsetting her stomach but that seems to have passed.
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My DH started with 10mg of Donepezil at night, but was having vivid, wild dreams and so it was switched to the morning. His dreaming has mostly calmed down. Mementine was added about a year later (10mg in the morning, 10mg at night). I didn’t notice any changes with this medication. He nods off sometimes during the day, but sleeps probably 10 hours a night at this point. He’s late stage 5, probably dipping into 6.
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My understanding of Memantine it doesn't 'cure' anything, but " Memantine slows the neurotoxicity involved in Alzheimer disease and other neurodegenerative diseases." This is from the National Institutes of Health.
One of the available treatments for cognitive impairment is cytidine diphosphate-choline (CDP-Choline), or citicoline. Available without RX! Below is the article, again from NIH.
My husband has vascular dementia,still in the mild stage. He has an RX for Memantine. And also takes Citicoline.
I also take Citicoline. I'm 83 (DH is 86) and the incidence of dementia among 80 year olds is 35%! for 90 year olds, it is 95% and above 100 it is 100%! So I'm hedging my bets.
Neither drug cause any problem.
hope this helps,
ElaineD
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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