Thinking about stopping Namenda...Any advice?

Thanks--a helpful reply. After a week off Namenda, my wife doesn't seem any goofier since then. She still has a terrible time remembering appointments and locations, so I write them all on a whiteboard that she set up on a wall near the bedroom. I had a medical appointment at a clinic I go to every two weeks, and she can't remember where it is, so I have to give her directions each time. But she doesn't want me to go grocery shopping with her, since she has to get me an electric cart. (I'm a semi-paraplegic), and she has to tell me what's on the list and where to turn to find it &c. OK, but her legs get so tired that she doesn't buy everything on the list, especially the stuff on the bottom of the paper. She's about to go shopping right this minute, so I'll need to go over the list with her before she leaves so I can take a nap with my cat.

I tried this medicine and my dad actually became worse. He slept all of the time and he lost his clarity-the little bit that he had so i stopped that medicine. Try music videos of Dean Martin and cimefy shows like Seinfeld, as this seems to keep my 84 yr old father happy. At times, he does not sleep very well and becomes nervous and aggitated so i give him half of a sleep aid.

Dr JC, yes that describes my husband, but numbers were his forte but the reading not so much. Public speaking, yes. I started home schooling him again with simple math etc, he did fine, but like your Dad could not pass the SAGE tests, a few but overall no. Now when the memory loss started (approximately) 9 years ago my husband had just been put on a STATIN, not for cholesterol but to aide with his A-Fib, I noticed his memory was beginning to fade so I asked our PC Dr at Bethesda (USN RET) if it could be a side effect of the STATIN, He told me to stop the STATIN for 3 weeks to see if there is any improvement, as statins stay active in the system for 45 days. Well the fog lifted and he was back to normal mentally, until we had to see the heart doctor again who told us he had to be on a statin and would change the brand or my husband had the chance of having a stroke without it. I bought it lock stock & barrel, and after about a year back on he started the downward spiral. I have, as many on this forum, seen the beast of this disease. I stopped his statins three years ago as well as mine, and to my amazement both of us have good numbers in our blood tests.

Many people have areas of hyper development. For example, my dad, who was incredibly adept with business math, was evaluated for his micro infarct dementia and couldn't draw a clock, state the day, etc. but could repeat 13 numbers backwards which is beyond the ability of most 40 year olds. Dad was 91 years old.
Was your husband fastidious, well-organized, or otherwise super precise? We are all different and have unique strengths. That's why I am bothered by people making strict, exclusive, and global pronouncements about people, illnesses, and treatments.

DR JC My husband (84) up until a month ago could shave brush his teeth all grooming in general on his own although he is late stage 6 AD. But he can still read anything and understand what he is reading, no bathroom problems except for asking where the bathroom is, do you think his position ( work) in life is causing some areas to remain intact?

send it to 4295 ballinger rd , martinsville indiana . ill get back with you over whether its worth a sh*t or not ..

As a physician and caregiver, I have observed patients and my wife on Namenda, 10mg twice daily. When added to her solo Aricept, the improvement was dramatic. Now, after 7 years, we are tapering her off the Namenda and then the Aricept.
Both of these meds may slow the rate of deterioration in some individuals for up to 2 - 3 years. For some they do nothing and/or cause side effects.
The course of Alzheimer's is variable. It is thought that people blessed with great intelligence have tremendous cognitive resilience which accounts for a relatively slow decline. However, when the downward spiral starts, it moves relatively quickly. That is where my wife is now. No meds can do anything good for her anymore. Routine practice is to remove these meds when the pace of deterioration picks up which may be well beyond the initial benefit period. Alzheimer's is ruthless illness for patents in general and for my girlfriend of 53 years in particular. I hope these comments have been helpful.

Galantamine/Razadyne (same thing) is a mostly natural AD stabilizer made from flowers (daffodils) and is regarded as good as the others in mild to moderate AD. That is what I choose for my husband in the beginning he is now (a little over two years) on Namenda twice a day and the Exalon 13.3 patch. I can see a change in him the past few months and started wondering if the effects are wearing off. Gone are the nightmarish days of screaming at me & threatening anger rages so honestly I am afraid to stop them as I don't want the bad behavior back.

I have read everyone's answers, and basically agree that for our loved one, they should call it NUMB..ENDA!! Awful drug!

What is Galatamine? marymember

Some of you have stated that Namenda "stabilizes" mood... (i.e. numbs, settles down the ruminating obsessive agitation, etc) - I'm now wondering, after reading the answers, if mom should stay on it JUST to keep her personality more stabilized and level. She has become a verbal angry monster over the past month... even with it. I feel awful for her because she's obviously suffering too. But she's already on the Buspirone and Seroquel... Seroquel makes her tired, and the Buspirone has worked well but we have to give it to her more often than we are supposed to... it wears off every 2-3 hours! ugh.

Responding to Caregal's question 'Responding to "mmthku" who posted 3 hours ago: If your wife can do all that -- driving, cleaning, shopping, etc ... Why is she even taking Namenda and Aricept!' --Our doctor prescribed these because C's short-term memory is awful: She asks me the same question 5-6 times, and 2 weeks ago she left the grocery store, turned the wrong way, and was missing for 6 hours until a friendly cop let her use his phone to call me and got her turned around and pointed back home. Her own phone was dead, and she'd forgotten that we have a charger in the car. She's gone shopping a couple of times since, but she gets tired and doesn't buy the last 3 things on the list. When we go out to lunch, she asks me at least 5 times which street to turn on. Her big sister (78) has full-blown Alzh, a little less scary for us because at C's age she couldn't even do email--but she is married to an alcoholic and is one herself. though she no longer drinks. I'm thinking about taking C off the Namenda for a while to see if she gets better. If I weren't in a wheelchair, with multiple physical problems, I would be doing a lot more myself.

I followed the same path as Arniethek1, however, after on going this site and all the references to numbenda, i question whether or not we did the right thing. I think if I have to make the choice in the future, I may not take what the doctors are saying without questions 😟

I wish I knew the answer. I have guilt feelings of taking my husband off of Namenda xr 28mg as well as Aricept 10mg daily, usually after the fullest meal. I remain frustrated. marymember

My mother has been taking Aricept and Namenda in combination for seven years. Her symptoms stabilized during the first two years she took them. Since then, her symptoms have progressed. I kept her on these meds for fear that her symptoms would progress more rapidly without them. She experienced no adverse side effects from them. So, I saw no reason not to continue their use.

Responding to "mmthku" who posted 3 hours ago: If your wife can do all that -- driving, cleaning, shopping, etc ... Why is she even taking Namenda and Aricept!

That Namenda was an awful experience for us! It was "billed" to us as a med duo to be combined with aricept for our loved one -- it was in that combo supposed to be "a miracle" "make them want to get up out of bed, make their own bed etc.."! A few months passed on "the combo" -- Well, I noticed my mom didn't want to get out of bed; less emotion or laughter etc... Well just by accident, I could not get a new prescription of Namenda filled BC the doctor was out of town as it was Christmas -- I felt so guilty BC she had to go without it a week -- OMG!! My son was here - my daughters - all 3 of them physicians - oh gosh - they made me feel worse BC the prescription was not filled -- AND THEN 5 days passed and EVERYONE NOTICED MY MOM IMPROVED AND STARTED TO ACTING LIKE HERSELF AGAIN! So, my son, a physician tested her mental acuity -- SHE WAS MUCH BETTER OFF THE NAMENDA !! I took her back to her private physician the following week & he agreed! That Namenda literally drugged her & took all her spirit!! Never again!! No more Namenda for her!!

My mother has been on Named and her memory keeps getting worse. The doctor explained that Namenda will not stop cognitive decline, it will only slow it down. There is no way to know for sure if it works because you can't compare how well the patient would have done if she had not taken it. My advice is simple: since it costs about $350/month and does very little, do not use it if you have to pay for it. My mother's insurance enables her to buy it for $15. I figure that since it is affordable and there is no alternative better drug available, I will take the advice of the geriatric psychiatrist and keep her on it. The problem is that there is no cure for aging.

My husband has been on Exelon patch for three years and there is no way to know if it is helping. The ALZ is progressing so its a guessing game - but it is an expensive one. Even with insurance it is $400/month. Our situation is such that we can't do this anymore. Has anyone had withdrawal problems, did you cut them in half first, any info would be helpful to us.

My wife has been on Namenda and Aricept for about a year now. I have no idea whether they're helping or not. She can still drive, cook, and do housekeeping (I can't, because I live in a wheelchair), but she tends to get lost, so I need to go with her, especially to the supermarket, where she gets so tired that she omits the last three things on her shopping list. We have long-term care insurance which will pay for in-home care, but she's resistant to starting that because our last experience with "cleaning ladies" was awful--they ran the vacuum cleaner back and forth to no effect until I changed the bag, and they left wet clothes in the dryer without telling us.

I was worried my mom was taking too much medication and I took her does down to 1/2 a Namenda. Did the same for quite a few of her drugs. It helped. Her regular Dr. didn't agree but her heart Dr. said "A lot of elderly people need pediatric doses.

My Mom has been on Exelon patch for 2 years. Six months ago we added Namenda. She hasn't had any side effects but I don't notice any real benefit.

My wife is on the Exelon Patch. This is similar to Namenda in what it is suppose to do. Once my wife finishes her Clinical Trial in March I am taking her off of the Patch as she has regressed and now I am going to let the disease run its course. The doctor said I can always go back on if I wish. We will see if there is any difference once she is off for awhile.

My mom has been on Namenda for over six years. She has not had any side effects, but it is impossible to tell if it has made any difference in her rate of cognitive decline. She has shown signs of dementia for at least 15 years. I asked her doctor a couple of years ago about taking her off of it due to the cost and questionable benefit. He said that no one knows if it is helping or not and if her cognitive ability declined after stopping it, she would not regain what she has lost. Another doctor told me that it helps to stabilize mood. Now mom has progressed to the agitated, angry stage and has basically no short term memory. Her score on the mini mental status exam is solidly in the "severe cognitive impairment" range. I plan to address this question again at her next doctor visit. It doesn't seem to be helping her mood and there is not much cognitive ability left to "preserve". To me, the only thing it is helping is her progression to Medicaid.

I spoke with my Mom's doctor about stopping Namenda. We had many negative side effects and did not think it was providing any positive ones. We stopped the Namenda and saw a good change in her. These medications advertise they may work to slow the symptom’s not the progression for some people. Dementias are progressive so the person with it will continue to lose abilities and functions. I believe the rate of this depends on the specific nutrition and activity level. I have been taking care of my mom for eight years now and I don't think this crap ever worked and the side affects were very bad.

Mom has been on 5 mg of Namenda once a day, at night, for about 5-6 years. 10 mg was too much and none didn't work either. While she does have balance issues and some incontinence, these pale in comparison to the anxiety, confusion, and hallucinations that kick in if we miss even one dose. Like all of life, we have to weigh the trade-offs and make tough choices.

My wife has been on Namenda for 3 yrs. She has starting to regress more rapidly the past few months. I am considering taking her off Nameda but keep her on Galatamine. Most of the articles I have read from reliable sources say that most ALZ drugs help for around 2 yrs.

We had the same experience add coach but my mom had been or it a long time.

We spoke with my MILs doctor about stopping Namenda. We did not see any negative side effects but did not think it was providing many/any positive ones either. We tapered off the Namenda and did not see any substantial change in her. These medications work better for some people than others and perhaps for differing amounts of time as well. Most dementias are progressive so the person with it will continue to lose abilities and functions. The rate/pace of this and the most likely trajectory depends on the specific kind(s) of dementia. Other health issues can also complicate the situation.

The doctor put Ma on it a year into arecept and it did her no favors. It messed with her balance, she regressed socially and she her incontinence increased immensely. You use the word Progression, these medicines are intended to slow it down. I took her off "Numb"enda and magic she is back to "normal"