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 Memantine/Namenda Survey 

Does your LBD loved one take Namenda?
Yes, and it made a big difference. 35%  35%  [ 44 ]
Yes, but it didn't make much of a difference 17%  17%  [ 21 ]
Tried it, and had problems so we discontinued using it. 9%  9%  [ 11 ]
No, never used it. 40%  40%  [ 51 ]
Total votes : 127

 Memantine/Namenda Survey 
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Joined: Sun May 27, 2007 10:01 am
Posts: 9
Post weird
It is so weird that this was this first thread when I logged on today. I haven't posted in awhile-but specifically came looking to see if anyone had mentioned Namenda. My dad's neuro put him on it in March-and I noticed a HUGE difference. It worked out well because we had to move him in with us and I was worried it would be too difficult on him. However, he made it through fairly well. In the last week it seems he is returning to his previous state. It has been trying and sad to see. I actually think he will have to come off of it because he has lost 17 lbs since the end of March and that is the only medication that has been changed. But, regardless-it for sure helped for awhile. I would encourage everyone to talk to their Neuro about it. I think it has run its course for us though.


Sun Jul 29, 2007 7:55 pm
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Joined: Mon Oct 08, 2007 3:23 pm
Posts: 1
Post Namenda/memantine survey
I'm adding to this thread, first of all because so many comments reflected my experience, and then to ask a question. My 96-year old father has been on Aricept (for memory loss) for about four years; by mid-2006 it became clear that he fulfulled all the main criteria for LBD, and after repeated hospitalizations for what appeared to be acute delirium, never with any standard medical explanation, he was started on Seroquel. He was much sedated and dulled by this for months, and it was finally withdrawn in early 2007 and Namenda was started (his neurologist's idea) in March. By April, the difference was obvious: his hallucinations stopped completely, his language functions improved markedly, and he has had a very good six months. About 10 days ago his hallucinations returned, and he has had several episodes of agitation and "overflow" of emotionality in recent days. It does appear that he has a UTI, and has started treatment for this. I can hope that the current flare-up of symptoms will subside with antibiotic treatment, but does anyone have experience with the use of Provigil for short periods, i.e., during periods when hallucinations are especially strong? And what about adding the Exelon patch?

Thanks,
David Daly


Sat Oct 13, 2007 12:27 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
If he's no longer taking Aricept, certainly try the Exelon patch.

You can also treat the emotional lability,if it persists, with an antidepressant, at mood-stabilizing doses (which are low).


Sat Oct 13, 2007 8:20 pm
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Joined: Sun Aug 19, 2007 11:57 pm
Posts: 35
Location: San Antonio, Texas
Post namenda
I agree with those who say push to try Namenda sooner rather than later.

My husband noticed a difference almost immediately. He said it was like fog in his mind being blown away.

From my perspective the improvement was not as dramatic as his improvement from Aricept several years earlier, but when he started Aricept his mental function was poor. His short term memory nearly nonexistant, his confusion high.

Individual results vary, but it is certainly worth a try. It might be a very good thing for your LO.


Tue Oct 16, 2007 2:10 pm
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Joined: Sun Nov 04, 2007 10:17 pm
Posts: 3
Post Namenda and cataract procedure
Hi - I'm a new poster

My mom has had a parkinsons dx for 10 years, and just last week the neurologist changed it so LBD and gave a prescription to start this Monday, 11/5. From a while ago we have her scheduled for cataract procedure number 1 (first eye) for the following Tuesday (11/13). Does anyone have any advice about whether this cataract procedure might be too soon after starting Namenda - or doesn't it matter. Also, if we go ahead with the cataract procedure, specifically, what types of anesthetics are better tolerated by LBD. I plan to talk to the Cataract doc ASAP, but would love some feedback at this forum to help me know what I am talking about. The Cataract doc and the neurologist have not communicated directly, they prefer my sister or I to be the intermediary so I want to have some better knowledge about this situation than I feel I have right now.

Thanks in advance. So happy to be registered as I've been finding just reading the posts as a guest helpful since last week.


Sun Nov 04, 2007 10:40 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Do a search on "anesthesia." There are several good posts on the subject.

I can't imagine the Namenda would have anything to do with the procedure but it would be best to consult both the neurologist and the anesthesiologist.


Mon Nov 05, 2007 3:35 am
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Joined: Sat Apr 07, 2007 1:56 pm
Posts: 54
Location: Florida
Post Follow-Up
HAPPY THANKSGIVING TO ALL......

The following is a portion of my post from May 28, 2007:

"Thanks for suggesting that Namenda be started sooner rather than later. I certainly will bring up the matter with my husband's neurologist at our next appointment on June 21st. He'll probably wonder how I know about Namenda since he never mentioned the name, but he'll find out that I've been learning a lot and not just sitting on my laurels since our last appointment. "

At the appt. on June 21st, the neuro switched my husband from Aricept to 8mg Razadyne twice daily for one month and then upped it to the current dosage of 12mg twice daily. When I asked the neuro why the change, he said he felt it was time even though it had only been about a year on the Aricept. One month ago, the doctor gave him a brief MMSE and then also added Namenda. After a very brief burst of alertness, I'm not seeing any improvement and his confusion is actually getting worse. Frankly, I think he was doing better on the Aricept, but who knows.

My husband was recently accepted into the V.A. system (I applied for him mainly for the meds) and tomorrow is his very first appt. with a V.A. neurologist. Two weeks ago he was initially evaluated by a V.A. internist and I was told that Aricept is the medication of choice with the V.A. and Namenda is only prescribed if the MMSE score is 15 or less. My husband was tested and scored 21. I'm not sure if it was "showtime" or the Razadyne/Namenda combo at work, but the doctor was concerned why he even needed Namenda with that high of a score and so he scheduled the appt. with the V.A. neuro.

Question: How do I proceed if the V.A. neuro thinks he should go back on Aricept (with or without Namenda)? Can these medications be switched back and forth without consequence? The only reason I would even consider switching back to Aricept from Razadyne/Namenda (other than the horrific expense) is that I'm not seeing any improvement with the current regimen and, if anything, things are a bit worse. And if we did make the switch, how in the world would I explain that to our private neuro whom we adore and have no intention of giving up?

This is indeed a lousy disease. Thanks so much.....

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Marilyn


Thu Nov 22, 2007 2:44 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
I don't think the VA MD knows LBD. LBDers can have high scores on the MMSE. I don't think it should mean the same thing as someone with AD.

Since you think your husband was doing better on Aricept, why not let them change it back.

My understanding is that all the AChEIs are interchangeable.


Thu Nov 22, 2007 3:35 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Post 
Marilyn --
Tell your private neuro that the reality is that you cannot financially afford the Razadyne & Namenda, and that since you need to use the VA for prescriptions for financial reasons, you have to go along with what's on their formulary (Aricept). You might also see if your private neuro is willing to write a short note to the VA neuro explaining why he believes Namenda is indicated in this particular case. The VA neuro might make an exception to the VA MMSE standard if a colleague gives him a basis to do so. Good luck!

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Renata (and Jerome-in-Heaven)


Thu Nov 22, 2007 3:37 pm
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Joined: Sat Apr 07, 2007 1:56 pm
Posts: 54
Location: Florida
Post Razadyne/Namenda: Follow-Up
Well, we saw the V.A. neurologist yesterday. I couldn't believe what happened. I brought in the almost empty bottle of Razadyne and the almost empty titration pack of Namenda. Without saying a word, he merely punched the Rx for both into the computer and a 90-day supply was ready at the pharmacy window before we left. He never even brought up the subject of Aricept or the MMSE score (which was in his computer system).

I think the doctor was all worn out from too much Thanksgiving because he looked very sleepy, kept yawning a lot and had very little to say. He quickly examined Ed (very quickly), asked him the month (got it wrong), and the name of the President (got it right). That was it! Thank goodness we have the most wonderful private neuro....we would never, ever give him up.

Now that Ed is on the full dose of Namenda (10mg twice daily), I will watch carefully to see how he does between now and our next appt. with his private neuro. It was a poor MMSE result 5 weeks ago that led our neuro to add the Namenda, so for the time being I'm going to credit Namenda with the better MMSE score the V.A. got 2 weeks ago.

We'll see.

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Marilyn


Sat Nov 24, 2007 8:26 pm
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Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
Post 
It has been over 7 years since LBD has hit, with a "grace period" of 2 years when PE hadn't lost any lucidity. But now, if it hadn't been for Namenda, called EBIXA here in France, PE would be in a very bad state. At least part of the day he is almost fine. We thank our neurologist for starting it now, instead of waiting until the "end." At least I can pretend to have some kind of regular life for a few hours during the day. Dinny Wolff


Sun Nov 25, 2007 2:01 pm
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Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
Post 
Life for PE and myself has gone on in the same way since he has been taking Namenda in May. I really believe he would have had to go into a dementia residence if he hadn't had it. But I think he has taken a turn for the worse the other day. All of a sudden, he now sleeps more, shows more of the LBD symptoms, couldn't eat his meal at a restaurant, could hardly speak, and only "comes to" around 4pm. He has an appt at the neurologist's in 2 weeks and I will see his GP alone to discuss this. He had told me last August that I should be looking for a placement for him in 2 years, which my gut didn't really want to believe. Now I do think he was right. I just wondered if taking another dosage of Namenda would help. This drug has been miraculous for him and if only upping the dosage would at least "bring him back.". Has anyone any thoughts about it? My high speed DSL doesn't work well in my home, so I haven't consulted the site for awhile. Thanks for any insights. Dinny Wolff


Mon Dec 31, 2007 3:43 am
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Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
Post 
I have been writing about namenda, singing its praises for awhile. I wrote the other day about a setback that PE had, falling, not being able to move his legs and other inconveniences. I talked with his GP who said that the Namenda "worked" for only 3 years! This was quite a shock, as I was depending on this drug to have us both be able to live at home. Has anyone had enough experience with Namenda to bear this out? Thank you Dinny Wolff


Sat Jan 12, 2008 3:19 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Dinny,
I don't think any drug can be relied upon to continue working forever - for someone with LBD and perhaps even for the non-neurodegenerated among us. In LBD, the brain continues to change so what worked at point A might not work at point B when more neurons have died or more chemicals are out of whack or more proteins has glommed up the works. Have you tried an AChEI yet (Exelon, Aricept, Razadyne)? You might be able to buy some more time with one of them.
Robin


Sun Jan 13, 2008 1:42 am
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Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
Post 
Thank you Robin for your reply. PE takes Exelon, Modopar and the Namenda. After the frightening crisis end Dec., he is really "back to normal" but doesn't remember anything of it. He doesn't remember mornings either, before taking the Namenda. It will be interesting to hear what the neuro says this week. But I guess it's come down to living on borrowed time. Thanks again. Dinny Wolff


Sun Jan 13, 2008 1:27 pm
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