My reaction would be to put him back on the Namenda for a few days and see how he reacts. I wrote earlier when my H was off the Aricept and Namenda both for a few days while meds were in transit his condition went way down hill. My H has been very quiet and pallative with no nastiness some of you are having. He started weaving when walking, trying to turn of the gas stove to get something from the refrigerator, twice bend down to get something and just went on over on to the floor. 3 days after restarting the meds he was back where he was before being off the meds. I don't know which of the 2 meds were responsible. He has not been that bad since.
It would depend on why you took him off the Namenda in the first place if you should restart.
Kathi, I am in the process of weaning my husband off the Namenda, so far he has not had any anger issues...notice I said, so far. He takes Lexapro for anger issues in the past. Hopefully, it will continue to help.
He went off Namenda because it made him a Zombie and he could feel it. He was so confused and agitated when he went on the two a day regime..I don't know what to do. Tonight he was just horrid...he will apologize, but then turn around and just be horrible, but it is MY fault. We have two out of town things coming up and I just do not want to subject others as well as myself to this behavior. I wish he could just be on a low dosage of the med, but when that was suggested to his Neuro..he ignored the request. My BP is on the rise again. Clearcut answers would be convenient, but not to be had with this damned disease.
I started reading your post at bottom of the previous page and thought, "sure seems alot of people are trying to go off Namenda." I'm hearing alot about people having negative effects with Namenda from the get go. My husband has been on Namenda from the first day of diagnosis.....3 years now. He had NO problems with the Namenda for months. When he started to decline he was given Aricept on top of that. Nothing zonked him out. I've recently heard alot more about agitation and it always seemed associated with Namenda so I decided just 5 days ago to decrease his from twice daily to just once a day. I'm not seeing any changes. Paul is still just as clingy, just as dependent, wanting to be at my side constantly, and getting overly demanding that I take him home to his house. It happens to be a house in a state over 2000 miles away that he hasn't even seen in over 40 years. He wants to see his Mom who has been dead for more than 40 years. It has gotten so crazy in the past 2 months with this going home and seeing Mom business that I have literally become a Screaming Banshi.
So I thought I'd give this reduction and eventual cessation of Namenda a try to see if either I can improve things for us, or at least keep a little more $$$ in our pockets. I hope things improve for you. I know I have just one hair of patience left.
My DH is doing well on the combination of Aricept and Namenda. He's been on both for 3 years and Aricept for a year before that. When I read this post, it fills me with .... what? .... fear isn't right.... anxiety is a little closer. Well maybe it makes me want to climb all the way under the covers because although I've been called a control freak in the past, I've never want to be God. And now, it seems I'm in charge of some God-like decisions. My question - and the answer will most likely do nothing to allay my anxiety - is: With the meds, we've seen slow progression thus far - only Stage 5 - if DH was to go off them, I understand that he would show as though he'd never been on them for the past few years. But, if that's the case, does that mean the end comes faster? Or it would progress the same length of time, but in a messier format. Ugh! I'm having a terrible time putting my thoughts together to be clear here. Maybe, I mean this: From DX, suppose he'll have 10 years on meds. Would he have 10 years without the meds as well?
Liz, my advice is don't "borrow" trouble. If your husband is doing well on the aricept/namenda combo, there is no reason to take them away. If there comes a point when he declines while on the meds, then it can be a mutual decision between you and the physician about continuing the drugs. I personally know people who never went off the meds...were still taking them until they died.
In our case, my husband took Aricept (no Namenda back then) for about a year...1999/2000...he was refusing to take pills, was going downhill and the doctor and I decided to stop the Aricept. He continued the downward spiral, no surprise there, but he did live for another eight years. There are no pat answers as every sufferer is different....Wish you didn't have to deal with all this....wish none of us did.
Liz, I agree with Sandi..if it is working don't borrow trouble. I wouldn't hesitate to leave G on anything that worked, but in this instance, how does one know? I think I will approach his Neuro again to see about just using a low dosage for the next few weeks. If we can get by okay then, I'll deal with what I must after vacation. I just can't have another airport blow up as we have had the last two times traveling. He wasn't on any medication either time, but having him get agitated and blow up at Heathrow or in Spain is just not a option...he did that in Buenos Aires with the armed Militia guards two feet away ! Not an experience to be repeated, although they didn't even flinch (not into their work very much).
Kathi, for what it is worth... Lynn had the AD devil on and off Aricept and nemenda. The only thing that helped him was another medications directed solely for mood and aggression. In his case they tried seroquel first, it has been a miracle for us. Perhaps this is something you can talk to his doctors about?
Thanks Nikki, that is where I am heading I think. His PCP is great, and we'll be seeing him this week. He has G on a low dose of Prozac, but it isn't doing the job. The "before dinner" hour is getting tense. Seroquel is the med that caregivers love but is "black boxed" isn't it? I doubt he would do that just before we leave on vacation, but upping something else might help. Something has to happen.
First, if your husband wasn't introduced to Namenda slowly - starting with 5mg once a day for a week, then twice a day, then 10mg once and 5mg once, before working up to the 10mg twice daily -- that could have caused him to develop unpleasant side effects.
If he was introduced to it slowly and it still made him feel like a zombie, and you want to try maintaining him on a lower dose, say, 5mg twice a day ... well, the neuro can ignore you, but you're the one who's giving the meds to your husband. Tell the neuro (or perhaps your husband's PCP would be more cooperative) that you want a prescription for 5mg tablets. If you can't get them, then ask the pharmacist if he sees any problem with your cutting the 10mg tablets in half.
Namenda may have been helping curb your husband's more unpleasant behavioral problems. See, for example:
Swanberg, Margaret M. 2007. Memantine for Behavioral Disturbances in Frontotemporal Dementia: A Case Series. Alzheimer Disease & Associated Disorders. 21(2):164-166.BACKGROUND: Frontotemporal dementia (FTD) is one of the more common presenile dementias. Unlike Alzheimer disease, there are no approved medications to treat this debilitating condition. OBJECTIVE: To report the response of memantine on the behavioral manifestations of FTD. DESIGN: Case series of 3 patients diagnosed with FTD and treated with memantine. RESULTS: All 3 patients showed an improvement in total Neuropsychiatric Inventory score with specific improvements in the subscale scores of apathy, agitation, and anxiety. Memantine was well tolerated in all patients. CONCLUSIONS: This small case series supports the notion that memantine may have a beneficial effect on the neuropsychiatric symptoms of FTD and should be further studied in a prospective clinical trial.
Other studies have shown that namenda can help prevent behavioral problems in AD patients. (Which, of course, aren't the same as FTD, but still...)
Thanks Sunshyne..this was his second attempt at taking Namenda..both times done correctly and slowly, but as soon as he started the double dosage he became a total zombie, but could feel it and refused to take the double dose. He improved quickly when taken off it (confusion and agitation) but now that it is out of his system (I think) is when the Mr.Nasty came back. I am going to do just what you suggested..can't get very much worse.
My DW has been on Exelon - 6mg 2x day, Namenda - 10mg 2x day and Fluoxetine - 40mg 1x day for several years. She just started taking Abilify (small dose) yesterday and in late afternoon, the time of day that she would normally become agitated and angry with me, she was sweet and loving and telling that she was so sorry that her "problem" made my life so difficult. It's not a placebo effect as she does not even know she is taking a new drug. Maybe life will be little better now!
Fascinating and meaningful discussion. Especially enjoyed it because I have just recently been wondering if the drugs are helping anything. My wife is now on the exelon patch 9.5m, namemba 10 m 2x day, welbutron 150 m 2x day. We are having a steady, but somewhat moderate, decline and I will ask her neuro about stopping them next month.
Aricept was a terrible drug for us. It gave my wife uncontrollable diarrhea and she didn't care. This, from one of the most sophisticated ladies (kinda rather stuckup) that was always dressed to a t with never a hair our of place. It is hard to believe what this disease can do to people
My only complaint with the VA - they will not give Namenda in the early stages since it is not approved for mild AD. Since so many here are on the combos, I asked the neurologist about it and that was her reply. She more or less said she would prescribe it normally, but the VA won't do it. I noticed in his records, the original neuro Rx aricept but the VA prefers galantamine. We all know the government goes with what they get the best deal on.
In July,after my husband's FTD diagnosis, the Neuro wanted to stop the Razadyne ER & Namenda he was taking. I wasn't sure, however, decided we would stop the Razadyne ER, I saw no decline. At his appointment on Monday, I agreed to stop the Namenda, if he has a steep decline, we will put him back on it. He has been taking Namenda for almost 6 years.
My husband began on Aricept and Namenda was added after about 6 months. I thought he got better after Namenda was added (had started putting his clothes on over his PJ's, peed in the trash can - it was white with a lid - hasn't done either since Namenda added). From reading all the above posts, I wonder if Aricept is causing his muscle cramps and violent dreams though.
Hi all. this is a discussion that has been in the forefront of my mind for several weeks. As there is no cure, and I see absolutely no difference in DH, why continue to put things in his body that don't seem to be doing anything. Dean, he had the same reaction to Aricept, so he was switched to Namenda, did the whole 5mg twice then 5 mg 10 mg, the 10 mg twice daily. although there are no side effects, there is also no visible difference. What's the point? I guess that's the answer I'm looking for. If anyone can give me a definative answer as to why, with no visible results, do we keep giving these meds, I'd appreciate any input.
buzzelena, My husband was first put on Aricept, which caused muscle cramps everyone from his legs to his stomach. Stopped the Aricept & no more cramps.
My husband has been on Aricept and Namenda for several years without and problems. I wouldn't think of stoppiing it now. As I was told, it just slows down the disease.
Carolyn, do you see any evidence of slowing the progression of the disease? This is what I'm struggling with. My DH is definitely progressing in a downward fashion (albeit slowly), but I'm just not sure if the drugs are doing anything (ie slowing progression). Would he be progressing any faster if he weren't on the drug? I just don't know!! AAUUGGHH!
NO ONE knows. A doctor I know socially says that these drugs are very controversial in the medical profession. There just isn't the science to allow a good opinion of how, or whether, to use it clinically. It does make everyone (except the patient) feel better that they are trying to do something, though.
My husband who has FTD is on aricept and namenda and they have slowed progression of his cognitive changes, but the last time we were at the neuro, the doctor told me that it was up to me to keep him on his cholesterol medication or stop it. His neuro is a great believer in quality of life over quantity. Always told me that he would rather I spend our money on enjoying life rather than medications. I know if I ever wanted to stop medications, he would back me up.
Shanteuse and Deb112958 - thanks so much for the input. I, too, believe in qaulity over quantity, and so does my DH. I'm not sure which way my neuro will go, but I am absolutely going to talk to him at our next appointment.
He may be relieved to be able to level with you about how much (or IF) improvement he thinks the drug might be doing.
There are some PCP's who complain that they have to write a prescription for something when people come to them with an ailment that will alleviate on their own, or otherwise the patients complain that they didn't get good care.
DH started taking Aricept in September of 2007. The neuro we were seeing at that time flatly refused to prescribe Namenda when I asked about it. I wasn't impressed with him anyway and we started with a different neuro a few months ago he gave DH the Namenda and I feel like it has helped him taking both meds. DH was worse at the end of last year and the begining of this year. If it looks like neither one is helping I will check with the neuro before stopping them.
Gee, Diane, I just don't know. I'm not willing to stop the drugs to find out tho. I see a slight decline with him but would he be worse if he stopped the meds? Who knows for sure.
We went the same route as most...FTD..aricept a disaster,Couldn't use the Excelon patch, then only a low dose of Namenda as more created a total zombie. Our PCP works closely with our Med school, and the FTD specialist there says Namenda is worthless for FTD patients. G stopped taking it about four months ago..no difference. Toss a coin!
Carolyn, that's the dilema exactly, isn't it? It's very confusing. As our neuro told me, very wisely, my job is to make DH safe and happy, and that's what I'm tyring to do. I will present my thoughts and concerns, and I will let him be the judge. That's why he's paid the big bucks, and I really do trust him. Thanks again for the input!
My understanding is that the drugs mask the decline - they do not stop it. Even though the brain is still 'dying' the drugs allow them to retain the cognitive function longer. Eventually the drugs can no longer mask the decline.
I wonder if the reason the drugs have no positive results with FTD is that the part of the brain that dies with AD is not (for the most part) dying with FTD.
I too am considering stopping the exelon patch and namenda. DH started on aricept and namenda about four years ago and they did seem to help for awhile. He had stomach problems though so we switched to the exelon patch. Stomach seemed better but is a problem once again. He has to go to the bathroom many times a day (and night). Here's the big problem...his difficulty with the bathroom routine causes him severe anxiety. He launches into a delusion and gets extremely angry and sometimes violent. Things would be so much easier if he didn't have to go so often. It may be the excelon that is contributing to the stomach issues. That's my main reason for considering stopping. The doctor has suggested phasing out the namenda first.
I need an opinion..not medical advice, just opinions. On Monday, the Neuro suggested we take my husband off the Namenda. He has been off of it since then, the last couple days he has really not been himself. Kind of off, not sleeping very well at night, but falling asleep everytime he sits down, No has been the answer to everything, he put his spoon from yogurt under his chest of drawers last night, something new, however, for the last couple weeks he has seemed to decline more, so now I don't know whether his moods are because we stopped the Namenda, or just what was going to happen anyway. Has this happen to others when the medication was stopped? I saw no change when we stopped the Razadyne, but that was last year. He has FTD.
Kadee - others will come on with experience, but from what has been posted, they will go downhill when taken off. But, I remember people posting that unlike the other drugs, when Namenda is started again, they can regain some of the lost ground. Then again - it may be his FTD has progressed to this. You really would not know without restarting it.
FYI - the AD drugs side effect is to cause the stomach to produce more acid. That is one of the reasons they cause stomach problems. I started giving Art the extra strength antacid and it has helped. To test it, I didn't put it in this weeks pills and paid for it. Wednesday night, after 2 days, I was kept awake until after 2 due to acid problems.
My DH was put on the Exelon patch 9.5 in mid-November 2007. Then in May 2008, Namenda was added. Both drugs were started slowly and he didn't have any stomach problems at all. He is declining--slowly but still declining. He sleeps a lot during the day time. He doesn't do anything. Today, I was cleanilng and asked him to dust the baseboards and above the doors. I literally had to show him how to do it. It made me so sad. He will just sit there and let me pull and tug on something that needs to be moved. When I vacuum, he says there's a spot over there. See it? (No, I can't see it.) So I got sore and said "You know I'm having vision problems. If you see something, why don't you get up and vacuum that spot. Just won't move.
Is this part of AD or is it the meds or what? He won't eat unless I fix it for him. He doedsn't take a shower unless I seduce him itno the shower with me. He doesn't change his clothes, take his meds or anything unless I initiate it. Frankly, I'm getting pretty sick of it. I tried to talk to him about possibly selling this house and moving into something that would be easier to take care of.
He then goes into this big litany about how much he helps me, and that I don't have to do anything and he's not moving out of this home, etc. etc. He claims that he designed this remodel last winter and the truth is that he didn't do anything. Wouldn't even look at floor samples, cabinets, paint, mill work. He just sat.
Back to the original question, i don't know if the meds are helping or not. If anyone finds out, let me know. And thanks for letting me rant.
Just my opinion from what I have read here and elsewhere - it is the progression of AD. And the meds seem to have stopped helping him. If this pattern keeps up I would definitely talk to his Dr about stopping them.
Sorry it is so difficult. Moving to a place now while he is able to 'move', may be the best for you due to your vision loss. Wish the real estate market was better for you though.
Simple changes in dh meds causes him to be more confused etc. so I go back to the original. I ran out of the aricept and namenda for a couple of days last year and he was a mess. Won't do that again. You didn't want advice so I won't give it but I put my dh back on his original meds. Mawzy my husband doesn't do anything either and hasn't for a few years. He keeps talking about doing a project but talk is all it is. He can't even get me a glass of water.
I think I have found my answer to whether my husband's mood was related to stopping the Namenda or just progression of the dementia. He took a long nap yesterday...I did also, when he woke up he was in a total different mood. So far this morning he has been his "normal" self.
I sometimes think they're like wind-up dolls that just gradually run down. You give them a nudge and they start up again, but then drift off. Over and over. Completely passive.
kadee sometimes the drugs stay in the systems longer than expected too. a few days would be expected for the half life to make sure all the prior meds cleared his system. just a thought. maybe thats why he is better now? divvi
Being back to "normal" just took a turn. I have started to listen when he goes to the bathroom, whether he just peeing or the other, so I can hand him the toilet paper...he will use if I am there, but if I am not, he won't. After he was finished, he stood up, had this mean look in his eyes, said, "You think you are the Top Dog, don't you" Then when I walked away, he said, "Go ahead & run away" he then went to the garage. I went out to put the trash in the barrel, totally different attitude. I diffently live with Dr. Jekyll & Mr. Hyde.
When I gradually weaned my DH off the Razadyne and Namenda a few months ago I think there was a bit of a decline (which may or may not have happened as soon if I had continued the meds). But the good part was he completely stopped the anger and agitation. It was so much better around here in the afternoon and evening.
However, in the last couple of days he's started to get a little agressive again. He has developed a habit of leaving the water running. I am forever reaching over and turning off the faucet. Last night I was trying to get him ready for bed and turned off the faucet. He turned it right back on (with an attitude). I told him he was going to try to turn off the faucet when he wasn't using it. He turned on me and yelled that I really thought I was the boss, but he was a person too. Really shocked me because he has never yelled at me. I stared at him for about a minute as he glared back. Then I turned and left SLAMMING the bathroom door behind me. He just stood there in the bathroom half naked, till I came back in about 15 minutes. He was very cooperative and was surprised when I told him he had yelled at me. Oh, well, so goes the "battle".
I get upset too about water faucets running, lights left on, refrigerator door standing wide open while he stands in front of it and eats or drinks: we were always environment conscious. But DH is still good about helping with the recycling.
My husband has been off the Namenda for 12 days now, only difference I can see so far is I think his mood has improved. He has started to comply with taking his clothes off for a shower without 10-15 minutes of me asking, pleading or whatever else I could think of at the time. Now, I am sure this will all change since I mentioned this change, however, it has been nice for the last few days.
My husband has been on Aricept for 6 yrs and Namenda for 2 yrs. I don't think I would chance taking him off either. He is getting progressively worse. It seems slow. He is very co-operative and sweet. I feel we should just let things be. If things change we could go down a different path. It's so hard, isn't it? Who would have ever thought we would be here?
I have been reading all the threads I can find tonight about the AD drugs: Aricept, Exelon, Namenda etc. My DH is on Exelon tablets -- 9 mg per day. He started it in December 2008, but the increase was very gradual, only got up to 9 mg in April 2009. I have two questions: - I am wondering whether to push for the highest dose of Exelon, which is 12 mg per day. Has anyone seen a benefit from the change from 9 to 12? - In Holland Namenda/Ebixa is only prescribed for patients with moderate to severe AD. I see that many posters here have had good results from a combination of (for instance) Exelon with Namenda, so again, I am wondering if I should push for the addition of Namenda. I have a telephone consultation with the neuro coming up. In the past he has been quite receptive to my suggestions, so I want to be well prepared and know what to ask for. I'd be grateful for any thoughts or experiences.