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 Memantine/Namenda Survey 

Does your LBD loved one take Namenda?
Yes, and it made a big difference. 34%  34%  [ 44 ]
Yes, but it didn't make much of a difference 18%  18%  [ 23 ]
Tried it, and had problems so we discontinued using it. 9%  9%  [ 11 ]
No, never used it. 40%  40%  [ 51 ]
Total votes : 129

 Memantine/Namenda Survey 
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Joined: Mon Jan 07, 2008 4:03 pm
Posts: 2
Post Namenda
My husband has been on it for a year and 1/2 along with Exelon. He went for 14 months without any hallucinations. Then last month he had a really bad episode, lasting several days. I finally called 911 to have him taken to the hospital, he could no longer walk, not sure why. Does anyone have any advise about the hallucinations. I find it hard to go without sleep for several days during the episodes.


Tue Feb 05, 2008 2:14 pm
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Joined: Thu Aug 30, 2007 6:15 pm
Posts: 231
Location: Charlotte, NC
Post 
No advice for an hallucination although my LO does describe them to me and I tell him they are hallucinations and he agrees with me. Yesterday it was his dog who died in July 2008...I told him I wish I could see my puppy even in an hallucination!

I need to ask when is Namenda taken? My neuro gives it to my husband in the am..first dose of stalevo with it. Then again at 8:00. before bed. He is usually confused upon getting into bed but then clears up within the hour before I leave. Should this not be given earlier in the afternoon. He really seems out of it when I arrive at 4:00. We have an appointment next week.


Wed Mar 05, 2008 1:49 pm
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Joined: Mon Jan 07, 2008 4:03 pm
Posts: 2
Post I give it to my husband right after breakfast, & dinner.
I give it to my husband right after breakfast and right after dinner.


Fri Mar 07, 2008 10:26 pm
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Joined: Tue Nov 25, 2008 3:10 pm
Posts: 34
Location: London / Italy
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Hi, I have been reading about Namenda and all your experiences and have found it very interesting. My mother has been diagnosed with LBD, it seems to be a very fast form (MMSE score was 10 in January 2008, after less than a year after the outbreak of the disease). She lives in Italy. Nobody there has ever talked to us about trying memantine. I have just checked and Memantine, although available in Italy, has not yet been approved for the treatment of Alzheimer's by the National Health System, so it is not covered by the State. Mum is currently taking Exelon and Seroquel. I have also read in the paper recently published by LBDA, "Current Issues in Lewy Body Dementia Diagnosis, Treatment and Research", that there are very few data on memantine and LBD, and that, therefore, "until more research demonstrates clear benefits, a cholinesterase inhibitor would be preferable to memantine". However, I notice from your messages that many doctors in the US and France appear to be prescribing Memantine and Exelon or another AChEI at the same time. Could anybody update me on what is considered best practice in the medical community about this? I may be able to take it up with my mother's doctor in Italy. Thanks a lot


Sun Dec 07, 2008 9:21 am
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Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
Post 
This is really just a repeat, but in reply to Sofia's message, memantine, or Ebixa, in the US, Namenda, has done great things for my husband. He has been on it for over a year now and it has been miraculous, clearing all the" fog" in the brain. Living in France, he is 100% taken by the national health service. Of course, every case is different, but I feel his quality of life, already not very high at this point, has been upped a great deal. It usually takes a good hour to start working and before that, the regular symptoms of LBD are very strong with difficult behavior. He takes it at breakfast and then again at 4PM. I hope that Italy will follow France in allowing it on the market. Dinny Wolff


Sun Dec 07, 2008 11:47 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Sofia,
That LBDA paper you quoted from is the latest in terms of treatment for LBD (maybe in the US). Your mileage may vary.
Robin


Sun Dec 07, 2008 1:02 pm
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Joined: Thu Apr 02, 2009 9:41 am
Posts: 23
Post 
My husband has been on Aricept for 3 years and added Namenda last year. I do not know what the Aricept has done, but assume he would be worse without it. When he first started talking Nam, he could read better aloud than before (we read the Bible together in the mornings), but he has regressed, and now reads like a 3rd grader. I have noticed he "reads" the newspaper very quickly, so probably not getting much from it.
Does anyone know of any studies about how patients are if they go off the meds after a few years?


Fri Apr 03, 2009 4:57 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Anne,
There are few studies on LBDers and meds. The only ones I'm aware of are on the *use* of AChEIs and antipsychotics. I think there is a study of LBDers and the discontinuation of an antipsychotic (Seroquel?). A fair amount of anecdotal evidence has been posted here on the Forum about the discontinuation of various AChEIs (Aricept, Exelon, and Razadyne).
Robin


Fri Apr 03, 2009 5:00 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Anne,
Robin would know more about the studies on these meds but I would like to comment when my husband was alive I one day questioned his meds with the Doctor and expressed I didn't think they were doing anything anymore and the Doctor told me , We really don't know but we also don't know what he would be like if we remove them either, so I continued with the meds, I didn't want to take a chance!

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Irene Selak


Fri Apr 03, 2009 8:45 pm
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Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
Post 
Anne,

Our family doctor told me last Sept., after one year of taking the memantine, called Ebixa here, would be effective for about 3 years, maybe four. I was very upset to hear this as it does wonders for PE, " clears up" the fogginess, so that he is quite lucid during the day. However, after 2 years of it, I do notice that in spite of taking the 2nd Ebixa at 4PM, it doesn't work as well as the take in the early morning. Dinny Wolff


Sat Apr 04, 2009 2:26 am
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Joined: Thu Aug 30, 2007 6:15 pm
Posts: 231
Location: Charlotte, NC
Post 
This week one of the med tecs told me she could not get Tony to take his morning meds...namenda and sinemet...boy was he out of it that day...head hanging, glazed over look. The next day he took it and was very different, although still not "normal". This was all the experience I needed for it to be proven to me that namenda was doing him some good. I am not tinkering with his meds.


Sat Apr 04, 2009 9:16 am
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Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC
Post 
Anne,

My mother was on the Exelon patch and Namenda for a good while. We actually started Namenda first because the patch wasn't then available, and she couldn't tolerate the gastic upset with any of the oral meds. We couldn't tell any improvement with them. During hospitalization in the geriatric psych ward, the doc there recommended discontinuing them. We did. She actually improved on leaving the hospital, but I think that was because she was having serious hospital-induced psychosis. We thought she was dying.
In short, we can't tell that stopping the meds hurt. I sometimes wonder if we should try them again, but I suspect -- given that they're to treat early and middle stages --- that it's too late for them to help in our case.

I wish the answers were more clear cut.

Garnet


Sat Apr 04, 2009 3:05 pm
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Joined: Tue Nov 25, 2008 3:10 pm
Posts: 34
Location: London / Italy
Post Memantine - available in Italy
Hi everybody, just to let you know that, very suprisingly, Memantine (called Ebixa, like in France) appears to be available now in Italy and covered by the NHS. This piece of news came this week, at my mother's half-yearly appointment with the neurologist. So we too now have the chance to try it. The neurologist told my father that he has already tried it on some patients (did not specify whether they were AD or LBD patients) with good results and basically no side effects. I am happy about the news but also quite anxious. In the two years since she has been diagnosed my mother has had a bad history of adverse reactions to drugs (particularly, olanzepine and the Exelon patches). We are also hardly coming out of a couple of difficults months, with my father having to suddenly undergo major surgery with a long recovery, and my poor mum suddenly worsening just after he came back from hospital (maybe this was linked to the fear and the concern of seeing my father unwell, without being able to actually understand what was going on and help him). So I am worried about the potential side effects. For those of you whose loved ones have found it difficult to tolerate Namenda/Ebixa, could you please let me know if in your experience there are some particular signs indicating an adverse reaction that we should look for, if we eventually decide to start Memantine? I know each patient is different, but I am sure I can learn a lot from all your experiences. I also have to confess that I am afraid of trying it and not seeing any good results...if that happens, then there would be nothing else to try or to hope for to help mum.


Sat May 16, 2009 9:45 am
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Joined: Tue Nov 25, 2008 3:10 pm
Posts: 34
Location: London / Italy
Post 
Following up on my previous email, I just wanted to share with you our experience and ask a couple of questions. We are now well into the third week of titration with Namenda (which means 15 mg daily dose) and the effects so far (I am almost scared to say) have been positive. Mum takes it at 9.30pm, just before going to bed (on this more later) and one consistent effect in the last three weeks is that she's been sleeping extraordinarily well at night. My dad also tells me that over the last week she's also regained fluidity and autonomy in her movements, she's less rigid and more able to complete basic tasks, such as eating, getting up alone from the chair, putting on her shoes, etc. She also seems more alert, is talking a bit more and using her voice, although the improvement here is less significant than the improvement in her movements. The only flip side is that she tends to be more sad and, when she is agitated, she acts out her agitation more, by hitting people or things. The agitation part may also be linked to the fact that in mid-May her doctor concentrated the Seroquel all at night (1.5 tablet) as she had not been sleeping well, so for the whole day she is covered only by the benzodiazepine (previously she used to take half a tablet of Seroquel in the morning). So all in all things are going well - we'll reach full dose next Tuesday: fingers crossed!
And now for the queries: the doctor has prescribed to take Namenda in one single dose per day, at 9.30pm, just before going to bed. By reading previous post, it seems that almost all of you have been instructed to split it into 2 doses per day. The Namenda patient information leaflet says that it should be taken twice a day, unless otherwise instructed by the doctor. The information leaflet for Ebixa used in Italy however, says it should be taken once a day, full stop. Neither seems to specify what is the best time for taking the medicine. Although it seems to be having good effects nonetheless (including on my mother's sleep), I am wondering why there is inconsistency in the prescriptions (once or twice a day?) and whether 9.30 pm is really the appropriate time for taking it (considering my mum goes to sleep between 10 and 10.30pm).
I have also come across some information on clinicaltrials.gov about a comprehensive study of the effects of memantine vs placebo in LBD patients, sponsored by Lundbeck (the reference is NCT00855686). This looks like the first large-scale study of this type and appears to have been completed in Jan 2009 - however, no results have been posted yet. I have emailed Lundbeck a couple of weeks ago but have received no answer. Has anybody heard of it or been involved in the study? There seems to be another similar study currently recruiting (Efficacy and Safety of Memantine for Parkinson's Disease Dementia (PDD) and Dementia With Lewy Bodies (DLB)), which is being carried out in Sweden, Norway and the UK. I will be grateful for any reply - thanks and blessings. Sofia


Sun Jun 07, 2009 2:21 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Sofia,

It might be better to start your own specific post about this.

Re: once a time vs. twice a day dosing, and time of day. These are all good questions for the prescribing MD. Personally, since you are seeing some good results -- preliminarily -- I'd stick with what the MD has prescribed.

Re: the study done by the Danish pharmaceutical company, Lundbeck, you might inquire with the Lewy Body Society in the UK to see if they knew of anyone participating. Or, buy stock in the company and call their Investor Relations Dept and ask if any results have been informally announced. (Maybe someone from Lundbeck attended the recent PDD/DLB conference in Europe.) Usually it takes many months for the data to be analyzed, a paper to be written, and then a journal to agree to publish the paper.

Robin


Sun Jun 07, 2009 6:54 pm
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