Jeff's been on Namenda and Aricept (now generic) for 5 years. And you know what they say. Plus, the Namenda is still stupidly expensive and I have not believed it does anything for quite a while.
I began to taper the Namenda off a couple months ago, and for the past couple weeks he's been on half the dose. This week there's been a major ramp up in his strange little hallucinations. This is the form they usually take: He's sitting there and begins poking at his leg or the arm of the chair as if typing or reading. He says "I just got a Google..." Then he fingers it, as if reading, and tells me what it says. For example, yesterday in the car he "got a Google" which said "Chase, Joan, and Tom (his brother, sis-in-law, and their son) are on a slow boat to China."
Even though he keeps coming up with these, that one was so absurd that I had to ask him if he was joking with me, but he was not. This week it's been multiple times throughout the day, which is a major increase.
In reading about Namenda it seems that it's more associated with CAUSING hallucinations than reducing them, but I think that for now, we'll go back to his original dosage to see if this new feature sticks around.
It is entirely possible that it has nothing to do with the Namenda.
No behavior changes here when Exelon patch (he'd "graduated" to that from Aricept) and Namenda were stopped. I never could tell that any of those affected him one way or another. He has vascular dementia.
Is he still on Aricept? For us, Aricept caused hallucinations, but I kept him on it for 5 years; then tapered him off. He was on Namenda the last 4 years with the Aricept. Tapered him off both over a few weeks - hallucinations stopped - but, otherwise, saw no change.
emily, my DH has been on both meds for almost 6 years. A little less than a year ago I stopped the Namenda because I forgot to order it online & after reading that it might not be effective after 3 years. Well within a week & a half his demeanor changed & he became aggressive. I started him back on Namenda & he mellowed out. I know that isn’t the same as strange hallucinations but who knows what kind of effects can occur when taken off a medication. To be truthful that is one of the reasons I keep Tom on the Aricept & Namenda.
Yeah, that might sort of be where I am with it. I would rather not pay for it, but the couple of times I've tapered it off seem to correspond with strange phenomena.
Claude was on both Exelon and Namenda for 4+ years. When he went on hospice, they stopped all meds except his coumadin and high blood pressure meds. His demeanor changed drastically and I requested he be put back on them. He was on both until he passed on about three months later. His death certificate said "alzheimers type dementia". Alzheimers contributed to his death but I really think congestive heart failure was the main reason.
My DH has been on Namenda for approx. 2 years. He had hallucinations, which prompted the start of the Namenda. He hasn't had a hallucination since and I would be terribly afraid to take him off of it. He has been much, much easier to manage on the Namenda. I don't care what it costs, it's worth it to me.
Emily, I did the same. At his neurologist visit in September, I was told that I could stop the Namenda because it didn't do anything anymore. He had been taking it for about 3 years. I have tried repeatedly to taper off and he just does not do well. I am now to the point that I can give him one about 11 or noon and he will be ok for the day. The Aricept was stopped after his first grand mal seizure since the dr thought it could bring on seizures. All he takes is 1 Coumadin, 1 Namenda, 1 2.5mg Marinol and an occasional Aleve to help with the headaches. I only give him half a sleeping pill when I am exhausted. The sleeping pills affect him so badly that I try to avoid them. They seem to aggravate the myoclonis and cause him to fall in the mornings before thay have worn off completely. And this medication is outrageously expensive!!! Pharmaceutical companies know they have us by the proverbial you-know-whats when it comes to AD. I did go to Global Pharmacy in Canada one year when we hit the coverage gap, but went back to paying with the new year. There were no bad effects from that medicine from Canada, but it just worried me. Must have been blind trust in our FDA. Boy, does that make me a DUMBASS!!!
At the last neurologist visit, I asked about weaning Sid off of Aricept and Namenda. He told me if I was going to wean him off of anything, make it the Namenda because..................."In studies, it hasn't been proven effective". ?????????????????????????????? So WHY am I paying all of this money? Anyway, he takes it twice a day. A couple of weeks ago, I took him off of the night dose. After 10 days, I took away the morning dose.He's only been off of the morning dose for a few days. It may be my imagination, because I am looking very hard to see if there's a change, but it seems to me, he's becoming a little more angry. If something isn't done when he wants it done, of course he asks me a million times because he can't remember he asked, but instead of accepting my answer that I'll get to it - it's on the list - he gets angry, yells at me, and starts complaining about how little time it would take me to do whatever it is. And actually stays angry at me until he forgets about it. The last thing I need is for him to go back to the raging stage he was in a few years ago. I noticed in some of the Namenda threads and in this one, some of you have mentioned return of aggression after stopping Namenda. Can anyone else weigh in on this? I'm thinking of at least keeping him on the morning dose.
I will just add this, because I'm taking note of the date--Feb, '12--that I started this thread. It is, from this vantage point, impossible to say whether any strange behaviors I was observing in Jeff at that time had ANYTHING to do with Namenda, because this is just about the point where he truly began to crash and burn, and go psycho. Shortly after this he was placed, had a 5 week med adjustment at a geripsych facility, and was taken off both Aricept and Namenda and put on meds to control his psych symptoms instead.
joan, its my experience the namenda did help manage aggressive behavior. but we didnt use the aricept just namenda til late mid stage when it didnt seem to help and he was no longer having rage issues. maybe 5mg in am and pm instead of one dose? to spread it out. but not sure about that. i know they usually give 10mg /dose. i know you dont want to rock the boat. others have mentioned it helped with aggitation as well. but with FTD its counteractive in most.
First of all, Aricept and Namenda are two completely different drugs and they work on different issues within the brain. Steve was taken off Aricept almost 2 years ago because it was slowing his heart rate too much and he had already been on it for 6 years (probably wasn't doing any good by then). He is still on Namenda because the psychiatrist says he thinks it helps with agitation (he is also on psych drugs for agitation). That's good enough for me.
I agree with Marilyn. A kept Paul on both until he went with Hospice. I accidently ran out of both at various times and during that time we noticed significant changes - been over 3 years now - and I can't remember what other than unsteady on his feet - so I gladly resumed the meds. Don't "rock the boat". Some - it doesn't help and some it makes worse and some it helps. We need all the "help" we can get.
I weaned Clare off of both Aricept (which she had been on for 3+ years) and Namenda (2+ years) in Jan/Feb this year and there have been no ill effects at all. I was also told not to do so by her doc, but I also know that there is absolutely zero evidence to indicate that either drug, by itself or in combination, has ever been proven effective for a period of even one year, let alone 2 or more years. (In fact, an article I wrote about this was just accepted for publication by the Journal of the American Medical Directors Association, JAMDA, and will be published as a 2000 word Letter to the editor in about 4 months.) Clare was also experiencing severe gastrointestinal issues for 6-8 weeks although she had never had those side effects when initially taking those 2 meds. I suspected that, somehow, a build-up of these 2 meds in her system may be causing the problem. As soon as I removed her from the 2 meds, starting with Namenda, all of the gastro issues disappeared. Coincidence? Cause and effect? Again, there have been zero follow-up studies by the manufacturers of any of the 4 FDA approved Alzheimer's meds to see if there is any negative or positive effect of taking any of these meds for even one year. Of the 11 clinical trials done to indicate "evidence" of any of the AD meds being effective, 9 of the 11 trials lasted for 26 weeks or less ... and all showed that the "positive" effects of slowing down the rate of decline had already ended by the 26th week. An even worse, the tests used to measure their 'positive effects' were mostly relatively meaningless tests such as the MMSE.
After reading the literature re Galantamine and Namenda, I discontinued these drugs last summer. My husband, now in the severe stage of AD, had been taking both drugs for well over 5 years. He had also gotten to the stage where he was spitting them out. When I informed our neurologist of my decision he was concerned about discontinuing the Namenda as this could lead to an increase in hostility and agitation. While not thrilled with my decision, he agreed that continuing the meds after all these years probably would have little affect on the progression of AD. Not only have I not seen any changes in behavior, his appetite has gotten better with a gain of 10 pounds in the past 4 months. Obviously, this has been our experience and as a nurse would also recommend that you have a discussion with your MD before stopping any med. The cost of these drugs was not the issue in my discontinuing them...however one must admit, if there is nothing to be gained by administering them why should you continue to pay dearly for something that might in fact be harmful.
In a way I am glad that it did not work out when I tried Namenda with my husband. Now I don't have to worry about withdrawals on that issue. He is on galantamine, has been for almost 5 years. When I asked the neuro last fall about stopping it at some point she said no. But, there will come a time I will whether she agrees or not. Recently there was a study released where they found that people taking galantamine retained something like 2% more cognitive abilities than placebo.
My question with all these studies is: how in tarnation do you know? There is no way they can know whether this would have happened without the drug. They can't go back in time.
I presume it is a double-blind study where they had a large group of people with Alz dx, performed cognitive test prior to testing, then gave 1/2 of them the drug and 1/2 of them a placebo. During the drug testing period they continued to give the patients cognitive tests. What is important is that not only do the patients and their families not know if the patient is on the drug or placebo, but the doctors and testers don't know either. At the end they compared test results of the group who took the drug and those who didn't and saw those with drugs did better. I am sure I am over simplifying everything and I can't say anything about the statistics or if the improved results are statistically significant (I've read reports where the media didn't understand that medical results were statistically insignificant and the "twice as effective" headline should have read "improvement most likely due to rounding error." Do these types of studies are harder than I make them out to be.
Thanks everyone for your comments - I do have one question... has there been research on whether removal from these drugs, Namenda, Aricept, etc. speeds up the deterioration of the AZ patient - another way to put it - do they delay it?
Claude was on Exelon and Namenda for about six years. We tried the Exelon patch when it came on the market, but it wouldn't stick to his skin for some reason so we went back to the pill. Some people disagree but I feel the meds kept him cognizant longer than he would have been otherwise. When he went on hospice, they took him off both and almost overnight, he seemed to go downhill much faster, and he passed on 3-1/2 months later.
From what I understand of the clinical trials, they only last a year or so, so they really don't know if the effects last longer. Some caregivers have said they see no difference when they remove the meds, others see a change sometimes for the worse. Each person reacts differently.
My dh seemed to do well on the Namenda. He was what I would call moderatte for 3 or 4 years and then started a downhill slide while still taking Namenda. To me it is like water behind a dam...the water is always there (being while they are on Namenda) and finally the damn weakens and the water comes down; full force. It is still the same amount of water...but the damn (Namenda) can't hold the decline back anymore. After that he also went on hospice and died in less then 3 months. The hospice dr. said he didn't think the Namenda was working any more and I agreed with him and we took him off the drug.
JudithKB*, that is a great analogy! I will use that when trying to explain it to people in the future. Lynn was on both Aricept and Namenda for years. When he entered later stage, when these medicines are said to no longer work, he developed stomach issues they believed these medicines to be the culprit. So we weaned him off both, one at a time. Oddly enough, Lynn actually had a period of more cognitive function after he was off the medicine. I noticed no decline at all.
The drugs do not slow down the disease - if it works for them, it allows them to remain cognitively functioning longer - sort of masking the destruction. The disease still rages on. Like with the dam, sooner or later it can't keep up. When removing them, if the drug was working for them, according to what I have read and the doctor that use to be here to answer questions, the will go to where they would have been if not on the drug. The doctor that was here said when he removed people from the drugs, he keeps a close eye on them because if it was working he will put them back on it but it had to be within 2 weeks of when first taken off. If I remember right, he said if done in that time frame they will return close to where they were, but no guarantee.
That is why taking them off is an individual decision. I for one, when my hb starts going down, the galantamine will stop.
Interesting description from our neurologist last week - the way she put it was - "AZ patients are able to somewhat hide their condition for a while but then all of a sudden they just fall off a cliff". That's why she feels I need to be researching ASL facilities in our area - even to the point of HB being put on waiting list - in case it happens quickly. I hate tos ay it but I feel like another poster wrote recently - it's just like sitting here waiting for them to die! Such a sad disease.
Our druggist said if I was going to stop anything make it the Aricept.He said there was more chance Sonny would get more aggrevated off the Namenda. I have tried three time now to wean him off the aricept, and each time he seemed to have more confusion.So I guess we'll keep him on both.The RN ,I have twice a week to stay with him while I run my errands worked for years at a NH,she said when ever a patient's meds were tweaked, mostly she saw a big change ln behavior.
I pulled my wife off Aricept twice. First for an entire week before her evaluation for disability. On the Aricept she was somewhat capable, off it her confusion increased significantly. She VERY EASILY failed (passed?) her disability exam. The next time was about 2 years later when I forgot to either give them or refill them. Her confusion, fear and panic increased and was readily noted. In both situations I quickly saw a return to 'normal' or typical behavior as soon as I started the Aricept again.
I stopped the Aricept 6-8 months ago after a string of bed-wetting incidents. (urination being a side effect) In this situation I saw no change in behaviors. So I have now stopped it completely, but she had been on it for about 4-5 years.
My question to you is; Why would you want to stop the Aricept if you are seeing some benefit?
Fact: Aricept is not effective for the life of disease. Eventually it will become ineffective. But EXACTLY when?? Studies have tried to look at behaviors and find the point when Aricept is no longer effective. The problem is that only US (the daily cargivers) really know the person well enough to really detect the very subtle behaviors that might come or go to determine if a drug is actually doing anything. Always remember that YOU know best when discussing your husband's behaviors. Suggestion: if it aint broke dont fix it. . . .
My wife is still on Namenda and it might not be doing anything, but I am maintaining it for now as she has her share of obnoxious behaviors and I haven't seen any side effects.
m-mman,I guess I really wanted to see if it was still working.Sonny has been on it 6 years.I will soon be placing him in a NH and wanted to see if any of his meds were unneeded.I can't afford to place him in a memory support ALF( they want guarantee of 54 mo. at $192 a day).In a NH medicaid will kick in when we run out of funds,but not in ALF.What will the baby boomers do?
Cost can be a very real consideration when looking at stopping medications. I still work and have good insurance so (thankfully!) it is not a part of my equation.
In any care center behavior is very important! If they become too confused or too violent or cause other problems then they can be ejected. You have mentioned that his confusion and agitation increases when he doesn't have the meds. I would take this as an indication that he should keep taking them.
Paying for meds and for care? Sigh . . . . . sorry, I don't have an answer for that one.
Thank you so much Nikki for re-posting this post. It answers and raises more concerns especially where behavior is concerned. You are such an amazing woman....I have read your feedback to many posts and can't help but wonder how blessed your dear Lyn is. I wish you the very best for God's strength to hold your hand during and carry you through this journey. You are one amazing lady!
Such a beautiful thing to say Lullie, thank you ♥ I learned from the best! Lynn was my caregiver for several years and truthfully I am nowhere near as wonderful as he was with me.
There are a lot more threads here about this topic, but I didn't want to bring too many up at once as it can be overwhelming. I hope your doctor can guide you in making this decision. I figured if I did notice a change I could always put him right back on them. With his stomach issues it was worth the risk. Best of luck ((Lullie))
How sweet that Lynn was there for you when you needed him and now you for him. You both have been blessing for one another and this is a very special gift. Your inner beauty and compassion is amazing! The world needs more Lynn's and Nikkis