Memmatine

Malka

Hi,

My cousin, a cardiologist familiar with my dad's case, has recommended stopping his memmatine. My dad has been on it for over five years, probably more. My dad is having a lot of delusions and is sleeping a great deal. I don't think this medication is helping him if it ever did. There is no way to judge this drugs success as far as I know.

Has anyone else stopped this drug? It's expensive and I don't think it's doing anything.

Thanks in advance for your replies,

Malka

jfkoc

Yes, My husbands Dr stopped the med.

Denise1847

My DH has been on it for 4.5 years and hasn't had any problems. Not sure it helps as he is declining. It just delays the inevitable.

Malka

jfkoc,

Did your husband have to be weaned off of it? Or just stopped cold turkey. I have read that you have to be weaned off.

My dad has been on it since he was diagnosed 7 years ago. That's a long time to be on it. I read that they journals say a year. Doctors seem to put our loved ones on drugs that they never come off of. My dad has also been on Plavix for 7 years. From what I read that isn't great either.

Thanks for the responses!

jfkoc

It was cold turkey. I do not remember the dose...couldn't hurt to reduce slowly.

-Judith

kbotch

If it's expensive try https://costplusdrugs.com/

Iris L.

Is he still continent? Use of these meds may not show much in the way of memory at some point, but they may enable the PWD to remain at home for a longer time.

Iris

Gthoma

You didn't say why your cousin/cardiologist recommended stopping. Is there some clinical reason or simply cost/benefit reason? My DW has been on it for 2+ years. It only delays the disease progression. I think of it as giving us caregivers time to adjust and learn how to cope (better, anyway). At some point, I expect DW's neurologist will discontinue it. Everyone reaches that point at different times. We're not there yet but you may be.

BTW, I've thought a bit about what do I do when DW refuses to take it. Decided it's not like it's a lifesaving drug so not worth triggering a meltdown over.

One thought, we don't know what our & PWD lives would be like without the drugs. Maybe no difference but maybe worse too.

harshedbuzz

@Malka

This is a conversation to have with dad's neurologist. It's great that a family member put this on your radar, but dementia care is well outside of his/her lane. It could be that he's gotten all he'll ever get from the medication and stopping it would be appropriate. These kinds of meds can improve day-to-day function and even mood in some who take it, so it's kind of hard to know where you'd be behaviorally without it until you stop. That said, they don't actually slow the progression of the disease in the brain or extend life.

Specific to the Plavix, that's a conversation for the doc who prescribed it. It's typically given to prevent clotting which can lead to heart attack, stroke and worsening PAD which can lead to amputation. Since these events could further disable your dad and potentially worsen his dementia dramatically, I wouldn't pull this one without a discussion with the doctor who ordered it.

HB

Malka

HB,

I don't take my father to see his neurologist anymore. I could find no benefit to seeing him on a regular basis. He prescribed the meds when he diagnosed my father. We went back for check ups twice and then the pandemic came. When it was safe to go back we did. He did the exam and my father of course was much worse.

My father's PC manages all his care. Most of the specialists we have seen were because he was in the hospital. He is 95 years old and doesn't want to live anymore. He wants to be with his wife, who passed over a decade ago. I am not trying to keep him here any longer than he wants.

Thank you for your advice,

Malka

Malka

Cardiologist recommended stopping it because it makes him tired also. All the meds - Gabapentine, Serequel, etc., makes him tired. Trying to think makes him tired.

jfkoc

Age makes him tired too, aslo the progression this illness. I would discuss reducing meds and or doses. You will not want to stop them all at once,

harshedbuzz

@Malka

Given your additional information, especially around dad's age, I would totally consider revisiting his meds and culling where appropriate. We also moved to a more palliative approach with dad as he moved into stage 6. In our case, we stopped meds for cardiac issues-- his statin, his BP meds (BP dropped as his dementia progressed with significant weight loss) and his metformin. We kept the meds needed to keep his breathing (COPD) as good as possible and also the psychoactive meds for anxiety, depression and agitation/aggression. YMMV.

It's typical for PWD to be sleepier. Sometimes it just happens that the person seems to need more sleep. Sometimes the sleep overnight is fractured/poor quality so they need more and nap during the day. Can you work with his PCP around this? I would be reluctant to discontinue gabapentin if it was prescribed for something like post-herpetic nerve pain or Seroquel if he's agitated without it. But if the reason for which these meds were prescribed no longer exists, it would be reasonable to re-consider them. You can always add them back if needed.

HB

ghphotog

My Dw is on Gabapentin and Memantine. I think it helps. She was on Amitriptyline for fibromyalgia and to help her sleep. Primary gave her the A and Neuro gave her the M. She was having serious meltdowns, heavy sundowning and much confusion before the Amitriptyline and I didn't see much change in her dementia after the A. The neuro put her on memantine and said to take her off the Amitriptyline as it would make things worse.

I don't know for sure if it was the A alone or the combination of both the A and M but she really started going deep into the rabbit hole. I took her off the A as the neuro said and just left her on the M. She has calmed considerably. Still has extremes time to time but much better right now.

Here is what I learned. The left hand doesn't know what the right hand is doing. Primary care doesn't know what drugs may exacerbate Alz as they are just family physicians so it's important to listen to the neuro even if the don't specialize in dementia persay but they do know what they are talking about. Once I told the PCP what the Neuro said she changed the Amitriptyline to Gabapentin and I haven't noticed any negative changes so far.

Malka

@harshedbuzz

Stopped the Amlodypine because his BP was low. Stopped the statin because he doesn't need it anymore, stopped the asprin (although it has been suggested to me to stop the Plavix and leave him on the aspirin), stopped the Finesteride because he is incontinent and still takes Doxaxine for his prostate. But no one does an inventory of all these drugs. Once they are on them, that becomes the status quo. The doctor told me I can stop the memmatine without weaning him off, but I will take him down slowly. I'll let you know how it goes. I'm very nervous.

Malka

Oh, forgot to say he is on Serequel and Gabapentin (for peripheral neuropathy). Hopefully he won't become aggressive or too delusional. He is delusional already.

ImMaggieMae

My DH had been on 10mg of Memantine for about a year, about 18 months ago. I didn’t know if it was helping or not. His neurologist increased it to 20mg per day and we saw big changes. He went from not being able to dress himself to being able to if clothing was laid out, went from eating very little and having problems swallowing, to eating a wide variety of foods and gaining back 15 pounds that he lost. He also reduced his urinary incontinence during the day to almost 0 and cut down on it at night. His empathy returned, he started smiling more and seemed in a better mood in general. He also had been taking Risperidone when the Memantine was increased.

Now, about 18 months later his urinary incontinence is back and he sometimes needs help getting dressed. He still is eating well and not having swallowing problems. Empathy is still there and he still smiles. But he whispers almost all the time and we can see progression in memory decline. He is less steady on his feet and it’s hard to get him up from the couch and walking. He started experiencing sundowning around the beginning of the year which he never had before. His neurologist’s office added Trazadone which seems to help a little (not a lot) if I give it to him about 4:00pm. He takes Gabapentin at night right before bed as he has for a couple of years for neuropathy in his feet and legs caused by a chemo drug he took about 14 years ago. He still takes the Risperidone and the Memantine. He sleeps soundly through the night. He lives at home and requires 24/7 care but is generally cooperative and has never been aggressive.

Malka

Hi Maggie,

My dad has been on the Memantine for close to 7 years. If the medication worked, it is hard to tell. He was basically fine when he started it. My dad takes Gabapentin for peripheral neuropathy in his hands. He take Serequel because he has gotten verbally aggressive and is delusional. I spoke to the doctor about weaning him off of it. She said it wasn't necessary but we have cut his dosage 10 mg 2x a day, to once a day. At night. He was taking it in the morning and night. Some nights he sleeps well, others he tosses and turns and has nightmares that wake him. He doesn't feel like eating, but his aide has been able to keep him eating. I don't think I would try as hard as she does.

It is my goal to try and get him off as much medication as possible. He will be 95, he doesn't even miss my mother (she is gone over a decade) anymore. He talks more about his parents, if he can speak. He wants to leave this world. This is not a life anymore.

Thanks for replying,

Malka

Crkddy

DW has been on memantine and donepezil for 5 years. Last year DW started resisting taking her meds. I discussed with her neurologist who said she could discontinue because they probably weren't helping anymore. So I followed this advice, but after several days I noticed her behavior was different...less aware, more confused. I decided to restart these meds and she returned to "normal" within a couple of days. Of course I still had great difficulty getting her to take her meds, but I finally discovered she will eat them with a spoonful of ice cream. Six months later DW has entered Hospice care. When sorting out her meds, Hospice told me to stop memantine and donepezil. I told them my prior experience, but they insisted. So, once again I tried, and once again the same thing happened. She is now back on both with Hospice blessing.

mommyandme (m&m)

We titrated Memantine down when it was time, didn’t cold turkey it per hospice. The first two times I tried to remove it I saw small negative changes so we put it back.