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    • CommentAuthoracvann
    • CommentTimeJan 23rd 2013
    Although our geriatric psychiatrist at Mount Sinai Medical Center in NY would prefer that Clare remain on both meds, I have begun weaning her off ... I've dropped her Namenda from 20 mg to 10 mg daily starting this week, then will go to 5 mg for a week, then off completely. After that, I'll wait 1-2 weeks and then start cutting the Aricept (donepezil) from her daily 10 mg to 5 mg for a week and then she'll be off that as well. Since there is absolutely zero research to indicate that either med can possibly be effective beyond a few months to a year, if even effective for that long, in slowing the rate of decline, I've decided that it's now time to be more concerned about the possible side effects. Clare has been on Aricept (donepezil) for more than 3 years and Namenda for more than 2 years already. I've reviewed all clinical trial data for all of the 5 FDA approved meds and not even one trial lasted for a year. Big pharma does not even claim that their med can be effective beyond the clincial trial lengths, which in all but 2 instances were for 6 months or less. So, I've decided it's time to end the 'bottles of hope' and, although the geriatric psych preferred I not do so, naturally she could not cite me even one reputable study indicating why I shouldn't do so. Doctors too often prescribe these meds hoping to slow the rate of decline, but then are extremely reluctant to tell their patients to stop taking these meds when they are obviously no longer effective, if they ever were in the first place. Too bad. Two major studies, one by Consumer Reports 6 months ago and one issued by NIH last week, re-affirmed that these meds are not effective beyond a limited period of time, if effective at all. So, for us at least, it was time to stop.
    • CommentTimeJan 23rd 2013
    Without a doubt, you know what is best for your spouse. I was ready to take my dh off the drugs too when I saw he was going downhill. Before I could do that the hospice doctor told me to take him off all his medications if I wanted to because nothing seemed to be doing him any good. But, he said it was my choice.
    I agreed immediately without a doubt.
    • CommentAuthorFiona68
    • CommentTimeJan 23rd 2013
    acvann, I've heard that Namenda may decrease their agitation. I'll be interested in your thoughts once you completely take your DW off of that med. I've been thinking of doing the same with my DH, who has been on both meds for three years. Hope all goes well for you.
    • CommentAuthoracvann
    • CommentTimeJan 24th 2013
    Fiona68 ... fortunately for me, Clare's personality hasn't changed at all due to Alzheimer's. Such a weird disease, right? In my support group, we are perfect evidence of that truism, "If you know one person with AD, then you know one person with AD." Half of those in my group have had to deal with verbally and/or physically abusive spouses, half not. So I would not expect an increase in agititation for Clare ... but I'll let ya know if this occurs.
    • CommentAuthordivvi*
    • CommentTimeJan 24th 2013
    acvann, we will be interested to see the results. i think you are doing the removal of the drugs in the right way by weaning.
    so many of us were doubtful as well and some have had to readd due to seeing unwanted changes. but like me, i was elated when i took DH off the meds. he was alot more lucid and the change in personality was positive instead of the reverse we see so often. good luck! keep us updated as this seems to be a topic many of us go thru after years on the meds.
    I did not start my husband on Namenda due to the reasons you stated. He has been on the Exelon patch for 3 years and I cannot see any difference. He is declining. Yesterday he told me he forgot how to tie his shoes. My husband also has not had any change in his personality. Fortunately he is very docile as opposed to agitated and abusive. For that I am grateful. I am in conversation with my financial advisor and am planning to place him in assisted living as soon as I can get through the Medicaid part. This is a very difficult decision for me but honestly I do not think keeping him home longer is going to help him or me. I try to live by the mantra "sooner rather than later." He can no longer read, write, make any food, handle the remote, dress, shower, or do meds by himself. He can no longer stay by himself although he thinks he can. He has not driven for 3 years.
    • CommentAuthorLFL
    • CommentTimeJan 24th 2013
    acvann, the geripsychiatrist who treats my husband did his residency at Mount Sinai in NYC. When we first went to him after DH was released from the psych hospital (where they had already taken him off Aricept and Namenda) the geripsych said he didn't believe either med worked and would only prescribe them for DH if I insisted. So, DH has not been on any "approved" alz meds since 2008.

    The side effect Namenda had on DH was to make him aggressive and violent.

    Good luck on weaning your DW off the meds. Let us know how it goes after.
    acvann. what is your motivation for withdrawing the meds. l considered it, discussed it with my Md. His reply is this a financial issue? No. Is DW exhibiting ant side effects you attribute to Aricept or Namada, No. His conclusion it's probably not helping or hurting, why go looking for trouble leave her one it . let's wait for Hospice palliative care to make the decision to withdraw she was Dx'ed 07 now late stage 6 early 7
    • CommentAuthoracvann
    • CommentTimeJan 25th 2013
    Marty, my decision is based on several realities. First, there is absolutely no research ... none ... to indicate that any of the FDA approved meds can be successful for anyone with AD beyond a few months to a year or two ... at best. And even the research on beyond a year is very flawed. The last study I read, publshed in the New England Journal of Medicine, again used a flawed test, the MMSE, to judge its outcomes. The study claimed that Aricept was helpful for moderate to severe stage AD. But it defined moderate to severe stage AD as a score of between 5-13 on the MMSE. YIKES!! Most reputable websites will indicate moderate stage AD as measured on an MMSE as a score of somewhere between 13-21, give or take a point, so judging scores between 5-13 as indicative of 'moderate' to severe stage AD is, on its face, untrue. (And my wife, who is rapidly moving from stage 5 to 6, still scored 22 on the MMSE on her last eval ... 4 years after diagnosis!! The MMSE, as I've written elsewhere on these message boards, is simply a badly flawed test! In my opinion, although this study found a 1-2 point difference in MMSE scores for some of those on Aricept in moderate to severe stage AD, to my way of thinking an MMSE score of 8 vs. 6 may be statistically significant at the .01 level, but a 2 point difference at that level is relatively meaningless as far as functionality in the real world. If my wife should deteriorate to a 6 or 8 on the MMSE, she would be basically functioning as a potted plant either way. Another reason is that my wife has major heart disease issues and must take heavy duty heart meds ... maximum dosage of nitroglycerine daily, maximum dosage of calcium channel blocker daily, etc. I have always been concerned about unknown drug interactions since there have never been any studies on any of these AD meds that have lasted for a year or more. We now routinely learn that the FDA sometimes discovers only years after drug approval that there may be accumulating negative side effects. Several of my wife's daily health issues are listed as known side effects of both her heart meds and her AD meds. Since I can't stop the heart meds, I decided it was time to stop the AD meds to see if perhaps those negative effects may possibly due to taking these AD drugs for so long. My bottom line, quite frankly, is because since there is absolutely zero research to support continuation of these meds, what's the point of continuing to take them? Big pharma would run ads on every TV station in the world every single day if they could prove that any of their AD meds were successful for even a year, let alone 2 years, 3 years, etc. Have you seen even one such ad? No. You may see an ad saying their med helps slow the rate of decline for some people with AD for a short period of time, but that's it. Despite this, many doctors keep recommending that their patients take these meds anyway in the hope that, despite no research to support their decision, they "may be helping." I often refer to AD meds as "bottles of hope" and, for us at least, it's time to stop the meds. No guilt. No second thoughts. For us it is time. We all need to make our own decisions.
    acvann, no one knows better than you!!! We all should know that pharmaceutical companies are in BUSINESS to make money. More drugs = more money. They would like you to think that once you start a medication, you must take it until you die. To do otherwise would be bad business. I, for one, do not care to take a medication for one problem that has 20 side effects. The day of taking a doctor's word as gospel is over. It is our job to doubt, question, investigate, and experiment in the best interest of our loved ones. If we don't, who will? I am a staunch supporter of "less is better". Kudos to you, acvann!
    We each need to do what we think and feel is best for our LO. My DH is still on Namemda. My reason is before dx he would get angry and agitated and was difficult to "control". The dx and meds and retirement all happened at about the same time. I am not sure which one my be the cause for his compliance and calmness. I don't want to rock the boat so I keep him on the meds.

    Each one of our LO reacts to the meds in their own way. No one size fits all here. His mellow disposition makes it worth it for me.
    AVCANN I possess an MS in Pharm.(long out of date), but I'm well aware of the research. I'm also in touch with the reality that there is nothing available at the moment that can do anything more than alleviate her symptoms as they appear. My thought and those of DW's MD, the biggest effect produced by Namenda and Aricept are at this stage are most likely the debit on my credit card every 90 days.
    The question I had posed to him was: do I want to risk precipitating a reaction by withdrawal of these meds. We concluded not worth the risk.
    At this stage what the FDA comes up isn't going to make one bit of difference to the two of us. Withdrawal has had some fairly negative side effect as reported in literature and on this site repeatedly over the past several years

    DW is rapidly approaching end stage, I have been told that life expectancy is definitely not multiple years maybe one, but more realistically to think in terms of months, As of late, she's failing at greatly increasing pace. Her cognition both receptive and expressive is virtually nil Administration of an MMSE would produce nothing, but a smile. When she still could communicate I recall her looking at the administrator saying who's crazier me or you asking me these questions and expecting an answer. "That's what she said several years ago. I'm blessed that DW remains in a smiling blissfully always happy state of mind, my biggest issue is keeping myself sane as she continually seeking my attention and becomes fearful when I'm out of her sight. Sundowning symptoms, Hyperactivity, remain totally manageable with anticipatory dosing of Lorazapan.
    Needless to say, not looking to create problems at this stage I've stuck with Namenda and Aricep
    • CommentTimeJan 25th 2013
    Just my two-bits worth: The doctor and I stopped the Aricept for my husband after 3 years because we thought it might help restore his appetite. It didn't. But it did return him to a happier, more responsive person: it was like having him back again. This was noted by several people, not just me.
    Another two-bits - when Claude was taken off Exelon and Namenda, he immediately got much worse both cognitively and physically. He had been on it for 3+ years. Research etc. may say it's not effective after two years or so, but as they say, "you've seen one alzheimers patient, you've seen one alzheimers patient".
    • CommentAuthorxox
    • CommentTimeJan 25th 2013
    I don't think these drugs slow down progression. I think they can help,with symptoms and have the potential to make you life easier and to make them feel better and think better. Alz drugs make FTD patients worse, but around 25% of FTD dx turn out to be Alz on autopsy, so you never know what will work. The fact that L reacted so poorly to the Exelon patch enforces the FTD dx.

    Late in the stage most drugs should be removed.
    • CommentAuthorsamismom22
    • CommentTimeJan 26th 2013
    Our family Dr. weaned hubs off of Namenda and Aricept about 2 months ago. We think it was upsetting his stomach, he has lost about 30 lbs over 3 months. (Geez wish that would happen to me! LOL) Since going off the meds his appetite has returned and so have the cravings for junk food! :) He is also so much more alert and awake. I have noticed NO CHANGE at all in the Alz symptoms. I never thought they did much for him and now that he is off them I really feel they did nothing for him. But as we all say, everyone is different!
    • CommentAuthordivvi*
    • CommentTimeJan 26th 2013
    i agree with paulc. it probably depends on what type of dementia we are treating with AD drugs. its a known fact if FTD could be even a partial diagnosis combo with AD then these drugs can make them worse. on the other hand some find that using the namenda alone can help control anger and aggression. only we can decide whats best for our particular case.
    divvi, Lloyd has been off Namenda for three days now. I was hoping that he would not get aggressive, but not so sure. This morning when I was trying to put his sweatshirt over his head, he slapped me across the face. Usually at that point I give up and shove a Namenda in his mouth. I want to be brave and ride it out for a couple more days and see if this will pass. Before Alz, he would have never ever struck me. This s*** is UGLY!
    Also I have tried about 5 times before to wean him off Namenda and every time he got aggressive and I gave him the pill as soon as he did. If I want different results, I guess I need to react differently.
    • CommentAuthordivvi*
    • CommentTimeJan 26th 2013
    oh darn linda mc!! geez, i dont know if its a good idea if he slapped you right off the bat! i have heard of several using namenda just to control this aggression. and know if it continues you may want to just suck it up and continue if its helping. getting slapped takes a lot of control not to return it..sick or not. sigh.. my best, stay safe. ps not sure what the half life is for namenda but maybe google to see how long it stays in the system just to get an idea how long you may need to see if taking him off works or not.
    If the Namenda keeps him calm, why are you wanting to wean him off of it? I would think keeping him calm is worth any side affect he may have. That is why I am keeping DH on the Namenda. He was very angry and agitated before the dx and meds. I am not willing to see what happens if we get off of it. Please be careful.
    No Namenda and he is starting to be much calmer - less pacing and more dozing on the sofa. I don't consider it to be a success yet, but I will give it some more time. Divvi, the slap in the face is nothing compared to having to endure him being sick and knowing that he will eventually die from this. And, I am reluctant to say - I did slap him back...not nearly as hard as he slapped me, but enough hopefully for him to realize that I will not tolerate it. Of course, realistically, he won't remember a thing tomorrow or maybe even in 5 minutes!
    • CommentAuthorCharlotte
    • CommentTimeJan 28th 2013
    As I have posted before Namenda made my husband lithargic, no energy, exhaustion came with little exertion, vision changes, and fog!

    Last fall at our visit I asked the neuro about taking him off galantamine - he has been on it 4 years. She said no. If I had to pay the big price not the $8 co-pay with the VA, I would take him off it. I have told myself when he starts sliding downhill I will take him off it. If it has been helping, then he can go faster and hopefully not be as aware of what is happening to him.

    I actually think the vitamins and supplements help him more.
    • CommentAuthorKpogue
    • CommentTimeApr 1st 2013
    I would like to know if you (acvann) were successful in weaning your wife from Aricept and Namenda. My mother has been on Aricept for eleven plus years, Namenda for at least six. My father is interested in taking her off the Namenda due to lack of studies verifying it's effectiveness. Amazingly, she is at home with him, holding her own in many ways, but definitely sliding down the AD slippery slope. I hope your wife's transition has been successful.
    You folks have presented an interesting and intelligent discussion inre Aricept and Namenda. We (me and the dr) had to discontinue Aricept because of the side effects. Terrible diarrhea that couldn't be controlled. Then we tried the Exelon patch and then added Namenda. I can truthfully say that none of them helped one iota. My DW progressed just like the text book says that the average patient does and passed away on March 14, 2013. She probably had Altz for between 7 and 8 years with the last 3 years in a facility because of aggression.

    Wishing all of you well.
    • CommentAuthorsherrie
    • CommentTimeMar 3rd 2017
    I am new to this site and very encouraged with the discussion and support present on this 'subject'. I am beginning to wean my 62yo husband from Namenda and am seeking a safe way to do it. Noted some "schedules and doasages", which seem to be reflecting mine. My guy has a primary diagnosis of FTD (Frontal Temporal Dementia) and r/o Alz with depression. He has behavior changes, recent memory loss, and some past memory loss. The doc that tested him prescribed Aricept and then introduced Namenda. After researching, I found Aricept was contraindicated for FTD! I had him taken off of it and the doc increased the Namenda. He continues to deteriorate. I, also, had to request Paxil CR (which is recommended for FTD). I have conferred with many other professionals, caregivers, etc. My children support the decisions I am making. Thank you all for being here.
    • CommentAuthorCharlotte
    • CommentTimeMar 3rd 2017
    Depending on how long he has been on it will help determine how long to take. You might cut dosage in half for a couple weeks then every other day. Did the doctor give suggestions? Maybe ask a pharmacist. When I took my husband of galantamine I stopped it cold turkey. He did have some withdrawals like headache and coughing (weird I know but it is listed) for about three days then was fine. He never knew I took him off it cause I emptied the capsules and put the empty one with his pills since he knew at the time what pills to look for.