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Medical Forum / Diseases and Disorders / Alzheimer's / October 2004Memantine (Namenda) Please Help!!!
My 82 year old mother has been on Aricept for a year now and just started on the starter pack for Memantine four days ago. We had high hopes about it but I am afraid we cant handle the behavioral effects. I constructed a wall about a year ago to keep her out of the kitchen and it had been working fine. There is a small opening at the bottom for the cat to get through. Today mother got down on the floor and tried to figure out how to get thru it. She later discussed it with me and said she planned to do it again. Usually every evening she mentions something about her father and mother, who died decades ago, coming to pick her up. Tonight the discussion lasted an half an hour and was extremely unpleasant. I hesistate to abort the Memantine strategy because I know it is POSSIBLE that it could delay further mental deterioration. At this point, keeping her in the home is still manageable. I certainly dont want to have to bathe her, feed her, dress her, etc. But she was a lot easier to manage before she started on the Memantine four days ago. Her thinking is so muddled it seems almost a mistake to stimulate it. She has absolutely no idea what state or town she is in, what season of the year it is, what day of the week, etc. She usually cant remember ANYTHING that has happened since 1939 even if it was only 5 seconds ago. Is it really a good idea to use a drug to stimulate thoughts in such a person? Is that just the price I have to pay in order to delay further deterioration? Are these just TEMPORARY side effects? Jason, I'm glad to see we weren't the only ones with an initial bad reaction to Memantine. I was wondering if I was imagining it. We started my mother on Memantine in November. We did ramp up the dosage over 4 weeks, as recommended. At that time, she was not taking her Aricept, which she had been for about 3 years, because in late September/early October, she decided she wasn't going to take any of her medicines any more. Shortly after that, we got her back on her blood pressure medicine, but decided to try the Memantine rather than the Aricept. IMMEDIATELY after starting her on the Memantine, she became very agitated. Normally not a great sleeper at night, she literally began sleeping no more than 1-2 hours in a 24-hour period. That 1-2 hours was gotten in 20 minute intervals when she would sit on the couch and nod off. She was on her feet, pacing around, the remaining 22-23 hours a day. She also was constantly trying to get out of the house, trying to cut the blinds with scissors or pry the door open with a knife. Also, we didn't really notice any benefits in terms of memory. She began to have some hallucinations (grabbing at things in the air, making room for an imaginary person sitting next to her on the couch, going up to the TV and talking to the people on the screen...) After about 6 weeks, we ditched the Memantine and put her back on Aricept. We noticed an improvement. Also, because of her sleeping problems and the hallucinations/constant trying to get out, we got a prescription for Risperdal. It's an anti-psychotic, but as a side effect, it makes you sleepy. She takes it just before bedtime, and it did improve her sleep. I read in postings here, that Memantine is recommended to be taken with one of the other types of Alzheimers medications (Aricept, Reminyl), so we eventually decided to try the Memantine again (started 3 weeks ago). Mom did not display the marked increase in agitation this time, but things were also different in that she was taking Aricept and Reminyl, which could affect this. The other thing I have learned is that Alz patients can go through phases, suddenly exhibiting strange new behaviors. Sometimes it is difficult to tell whether the behavior is due to the new med or just a new stage in the disease. I guess we will give the Memantine a full 3 month trial this time. Frankly, after the initial experience, I'm not all that impressed. I think we caregivers are all in a position where we are so desperate for anything that will help, that we fail to realize that many medications approved by the FDA do not do any good for some people, and sometimes, for a majority of the people. But you feel like you don't want to deny a potentially beneficial medication to your LO, so you go ahead and buy it anyway. Someone in the group posted earlier the sentiment that Memantine is worth a try, all you have to lose is money if it doesn't work. Unfortunately if the medication brings on bad side effects, you have more to lose than money. Hopefully, the bad side effects are not permanent, and would disappear if the drug were stopped. I sympathize with your predicament, Jason, and hope you can figure out what the best decision is for you and your mother's situation. Jennie > My 82 year old mother has been on Aricept for a year now and just started on > the starter pack for Memantine four days ago. We had high hopes about it [quoted text clipped - 17 lines] > thoughts in such a person? Is that just the price I have to pay in order to > delay further deterioration? Are these just TEMPORARY side effects? > Jason, > [quoted text clipped - 57 lines] > > Jennie Jennie, All the advice I've read here, plus my experience, was that you should use both together, not one instead of the other (since they work in quite different ways). Therefore, its quite possible what you saw was not the side effects of memantine but the effect of the withdrawal of aricept.  SignatureTumbleweed Remove my socks for email address > Jennie, All the advice I've read here, plus my experience, was that you > should use both together, not one instead of the other (since they work in > quite different ways). Therefore, its quite possible what you saw was not > the side effects of memantine but the effect of the withdrawal of aricept. Tumbleweed, yes the advice you and I have read here was what convinced me to give the memantine another try, this time WITH the Aricept. However, Mom stopped her Aricept in late September/early October, and we didn't start the Memantine until mid- to late-November. So, I don't think we were seeing Aricept withdrawal symptoms at that point. Jennie > > Jennie, All the advice I've read here, plus my experience, was that you > > should use both together, not one instead of the other (since they work in [quoted text clipped - 8 lines] > > Jennie OK, certainly with my father we saw a decline almost immediately he stopped aricept. and rather stupidly we just stopped it, I am dissapointed in hindsight that the doctors didnt advise we stop it more gradually. Anyway, better luck this time :-) from what I read it works well on some people and not at all on others SignatureTumbleweed Remove my socks for email address Hi Jason, I'm not sure whether these are truely side-effects or just an exacerbation of her current condition. How was your Mom before the Memantine started? Was she lucid? Do you know what her MMSE (mini mental-state exam) score was? Get back into the doctor ASAP and discuss your dilemma. >is in, what season of the year it is, what day of the week, etc. She >usually cant remember ANYTHING that has happened since 1939 even if it was >only 5 seconds ago. Is it really a good idea to use a drug to stimulate >thoughts in such a person? Is that just the price I have to pay in order to >delay further deterioration? Are these just TEMPORARY side effects? My grandmother started the Namenda last week, and we have seen an increase in 'wanting to go home', and also an increase in being confused who is alive and dead. She refers to dead relatives as being alive, and thinks she is on vacation and wants to go home. When you ask her where home is, she says 'where mom & pop are'. She is also taking aricept and zyprexa. Of course, this could just be a new 'thing' she is starting to do too. We noticed both other grandmother's do it and namenda wasn't around then. Sharon YOu know, I have to wonder if the Namenda has been changed ever so slightly from the European Memantine. I had enough Memantine from Zurich to last until about 4 days ago. In the past three days, George seems to be more confused. He says he "feels" himself aging and going downhill. He never had this trouble with the Memantine from Zurich. Mary K > My grandmother started the Namenda last week, and we have seen an increase in > 'wanting to go home', and also an increase in being confused who is alive and > dead. She refers to dead relatives as being alive, and thinks she is on > vacation and wants to go home. When you ask her where home is, she says 'where > mom & pop are'. She is also taking aricept and zyprexa. > Of course, this could just be a new 'thing' she is starting to do too. We > noticed both other grandmother's do it and namenda wasn't around then. > Sharon mary, I think its much more likely you are putting 2 and 2 and making 50, especially given the istant nature of the change you've seen its hardly credible its due to the drug chnaging. MUch more likley its something that was going to happen. No doubt George is alot more confused now than 1 month ago and than a year ago? Unfortunately its the way this condition works, you get worse. I also strongly suspect (though I agree I dont know) its *extremely* unlikely they changed the formulation of the drug when they moved it from Europe to the US, on what grounds would they do that?? It was working in europe, why would they change it? And if they changed it,that would make it a entirely new drug with no clinical trial evidence at all from europe that they could use with the US authorities, and they'd be set right back in research terms, theyd probably have to do 10 years of animal trials first or something. Dont forget, it only hada year or two trials in the US before it was allowed. That is very short for most drugs, and the reason behind that is the 10+ years of European experience they could use. SignatureTumbleweed Remove my socks for email address > YOu know, I have to wonder if the Namenda has been changed ever so > slightly from the European Memantine. I had enough Memantine from Zurich to [quoted text clipped - 15 lines] > > noticed both other grandmother's do it and namenda wasn't around then. > > Sharon Tumbleweed, of course, you're probably right. And I no sooner wrote that than he came in and sounded down-right normal! Ah... This disease is a pain in the ^**. Of course, we've had some other stresses around lately which probably also contribute to the problems George is having. I have a stress fracture in my foot and am using a cane, my BIL is still in the hospital with brain damage. George is seeing me on the computer trying to get information for my sister, etc. I guess I'm just wishing too much for him to be "normal" that I don't want to think he could be "slipping". I asked his neurologist. She said we'd see what happens when she sees him in two weeks. Just the timing was so convenient. Mary K > mary, I think its much more likely you are putting 2 and 2 and making 50, > especially given the istant nature of the change you've seen its hardly > credible its due to the drug chnaging. MUch more likley its something that > was going to happen. No doubt George is alot more confused now than 1 month > ago and than a year ago? Unfortunately its the way this condition works, you > get worse. > > I also strongly suspect (though I agree I dont know) its *extremely* > unlikely they changed the formulation of the drug when they moved it from > Europe to the US, on what grounds would they do that?? > It was working in europe, why would they change it? And if they changed > it,that would make it a entirely new drug with no clinical trial evidence at > all from europe that they could use with the US authorities, and they'd be > set right back in research terms, theyd probably have to do 10 years of > animal trials first or something. Dont forget, it only hada year or two > trials in the US before it was allowed. That is very short for most drugs, > and the reason behind that is the 10+ years of European experience they > could use. > > -- > Tumbleweed > > Remove my socks for email address > > "Mary K Farrell" <medfit2@san.rr.com> wrote in message > news:TL26c.1187$Lq4.236@twister.socal.rr.com... > > YOu know, I have to wonder if the Namenda has been changed ever so > > slightly from the European Memantine. I had enough Memantine from Zurich > to > > last until about 4 days ago. In the past three days, George seems to be > more > > confused. He says he "feels" himself aging and going downhill. He never > had > > this trouble with the Memantine from Zurich. > > Mary K > > > > "SNewb73756" <snewb73756@aol.com> wrote in message > > news:20040317025856.12501.00006786@mb-m04.aol.com... > > > My grandmother started the Namenda last week, and we have seen an > > increase in > > > 'wanting to go home', and also an increase in being confused who is > > alive and > > > dead. She refers to dead relatives as being alive, and thinks she is > on > > > vacation and wants to go home. When you ask her where home is, she > says > > 'where > > > mom & pop are'. She is also taking aricept and zyprexa. > > > Of course, this could just be a new 'thing' she is starting to do too. > > We > > > noticed both other grandmother's do it and namenda wasn't around then. > > > Sharon > > > > > > It's actually very common for drug manufacturers to use different formulations especially when in the final days of patent protection. Interestingly, generics have been shown to be more and less bioavailable that then parent formulation (i.e., you'll get more or less bang for your buck :-). So, while the drug is usually identical, the way in which it's formulated will affect how the drug is metabolized (so-called pharmacokinetics). If you live in a big city, check the local paper for testing of generic drugs--they never hit the market without first seeing human ginea pigs! Darryl. >mary, I think its much more likely you are putting 2 and 2 and making 50, >especially given the istant nature of the change you've seen its hardly [quoted text clipped - 14 lines] >and the reason behind that is the 10+ years of European experience they >could use. > It's actually very common for drug manufacturers to use different > formulations especially when in the final days of patent protection. [quoted text clipped - 7 lines] > > Darryl. Its one drug here, not competing generics. SignatureTumbleweed Remove my socks for email address >> It's actually very common for drug manufacturers to use different >> formulations especially when in the final days of patent protection. [quoted text clipped - 7 lines] > >Its one drug here, not competing generics. Yes, however, Mary's post dealt with memantine from Zurich. I'm assuming by her tone that the source has changed to the North American variety. If so, it might be a competing formulation. Darryl. then again, you know what they say about people who assume ;-) > >> It's actually very common for drug manufacturers to use different > >> formulations especially when in the final days of patent protection. [quoted text clipped - 14 lines] > Darryl. > then again, you know what they say about people who assume ;-) Indeed :-) Well, the active ingredient must be the same. I dont know what the stuff its packaged in is, but it would seem pointless to change that, it might affect approval, and AFAIK they are selling it under license in the US so they arent competing wth the original european supplier. SignatureTumbleweed Remove my socks for email address Darryl: Just to let you know -- and anyone else who might be interested -- the Namenda IS slightly different from the Memantine made by Merz Pharmaceuticals in Germany. Merz was having difficulty getting the FDA approval because of the strength of the meds. The strength was decreased slightly in order to gain the FDA approval. I found this out today when we had to put George in the hospital for a blood problem, thrombocytopenia purpura (severely decreased amount of platelets. He was below 10,000) which was caused by the Dilantin. The treatment for that is corticosteroids given IV. Unfortunately, they will cause an increase in dementia while he's taking them. The dementia *should* decrease after he finishes the treatment. I mentioned the increase in confusion since he started the Namenda vs the Memantine. The doctors (one a neurologist, one a hematologist) stated that there had been an adjustment in the formulary. You're still right on top of it all, my friend. Mary K > >> It's actually very common for drug manufacturers to use different > >> formulations especially when in the final days of patent protection. > >> Interestingly, generics have been shown to be more and less > >> bioavailable that then parent formulation (i.e., you'll get more or > >> less bang for your buck :-). So, while the drug is usually identical, > >> the way in which it's formulated will affect how the drug is > >> metabolized (so-called pharmacokinetics). If you live in a big city, > >> check the local paper for testing of generic drugs--they never hit the > >> market without first seeing human ginea pigs! > > > >Its one drug here, not competing generics. > > Yes, however, Mary's post dealt with memantine from Zurich. I'm > assuming by her tone that the source has changed to the North American > variety. If so, it might be a competing formulation. > > Darryl. > then again, you know what they say about people who assume ;-) My mom is only on aricept and she always "wants to go home" I feel so bad as she thinks her mother is still alive and lives up the street. Sometimes she cries as she said her mother is going to hit her because she isn't home. This is such a sad disease, both for her and my dad who takes care of her 24/7. I don't know how he does it. He only gets out 2 days a week, when either my sister or I go after work. (I get out of work at 1pm so he has more time for himself when I am there) I see him aging so much too, but he won't hear of a nursing home or a full time perso to help im. He has one lady in 2 imes a week just to bathe her etc, she is only there 2 hours tops. but this is his choice. He has the money but won't let stangers in alone, therefore he won't go shopping etc with this girl there. Its just so sad. Nancy Z > My mom is only on aricept and she always "wants to go home" > I feel so bad as she thinks her mother is still alive and lives up the [quoted text clipped - 13 lines] > Its just so sad. > Nancy Z Nancy, my dad doesn't have alzheimers, and he woll be 91 in a couple of weeks. If it is any comfort to you to know, he is the same exact way about "people coming into the house"... and won't even hear of anyone coming in to help. My sister and I had to come in and clean the house ourselves, because he wouldn't allow either of us to bring anyone in, even if we sat with them to supervise them every second. I feel it is fair to mention that both of us have cleaning people we have known for years and trust them implicitly, and he wouldn't even allow us to bring them along. I don't know why the older generation is like this, but it hasn't got a thing to do with the AD, it is just their mistrustful nature. Maybe a result of living through the tough years of the depression? SignatureEvelyn (To reply to me personally, remove sox) I just recently found your forum and am so glad to find others to talk to. I am a new caregiver who is frankly over her head and out of her mind. My mother suffers from frontotemporal dementia. Her doctor recently prescribed Namenda. She has been on it for a week and is showing signs of severe depression and lots of pain in her hips and legs. All of these are new symptoms. He has had us stop giving her the medication to see if this is the cause of these symptoms, but the timing is unmistakable in my mind. It's so hard to know what to do! > Her doctor recently > prescribed Namenda. She has been on it for a week and is showing signs of > severe depression and lots of pain in her hips and legs. All of these are > new symptoms. He has had us stop giving her the medication to see if this > is the cause of these symptoms, but the timing is unmistakable in my mind. It could have nothing to do with the Namenda. It's highly possible that it could be caused by the brain problem, not the drug. >Subject: Re: Memantine (Namenda) Please Help!!! >From: "odettebs" odettebs@nospam.yahoo.com [quoted text clipped - 9 lines] >is the cause of these symptoms, but the timing is unmistakable in my mind. >It's so hard to know what to do! It could be the drug or it could be a coincidence. If the symptoms are side effects of the drug, they'll probably stop fairly soon after stopping the drug. If they don't stop, maybe they're not being caused by the drug. I'd call her doctor. ___ "This is an impressive crowd, the haves and the have-mores. Some call you the elites. I call you my base." -- President George W. Bush |
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