EBIXA - memantine 10mg - Good news!!

[Michael E]

Monique was started on EBIXA - memantine 10mg almost 3 weeks ago - building to the full dose over a month by 25% increments.

There has been a significant improvement in her ability to comprehend what is going on - to watch television and actually know what the storyline or characters are. She has better 'conversations' with me - it really does seem to be doing what it says on the box! Not a cure of course but definitely an improvement on her quality of life. A few downsides - sleep pattern even more disturbed - bit more aggressive sometimes - hates my cooking even more but I did a straight forward roast chicken potatoes peas and baby carrots which even I cannot wreck and that was heavily criticised so I think it is a side effect of Ebixa or just the way things are going.

Thought I would share this experience - it is not a miraculous change but it is a change for the better......... For Monique and me...

 

[Lynne]

Please to hear that something's working for you (both)

Perhaps now that Monique is settled on Ebixa, your GP could adjust her medication to try to improve her sleep pattern and aggression. This thing is so much 1-step-forward and 2-steps-backward (or fall over!) isn't it.

A thought: perhaps her harsh criticism of your cooking is her way of showing resentment that she can't do it any more - or is that too logical? Or maybe this disease actually changes the way food tastes for the sufferer?

Best wishes

 

[Nutty Nan]

Amunition

Michael, the timing of your post is amazing:
My husband was taken off Aricept 2 months ago, and the decline is utterly scary! The consultant is not in favour of trying Memantine because "only very few people benefit from it", but I am so desperate that I wrote to him asking if we could at least try it. I am meeting with him on Wednesday to discuss this further and possibly set up a 'rating scale' which would enable us to make a comparison within about 3 months.
Your post is making me even more determined to 'go for it', whatever the cosst (apparently it is expensive and not available on the NHS, but that might only apply to the area we live in). Do you mind if I quote you?
Fingers crossed - anything is worth it if it buys us a few more months of togetherness!!!

 

[Dearth]

Excellent news Micheal!

Did the company send you the info via the email I gave you by the way?

My very best wishes to the both of you!



N.

 

[Michael E]

Nan hi,

Yes of course please quote me - print out my post maybe - hope it helps. I get the impression it is quite expensive but I started to notice a difference within days - not to get your hopes up - the difference in no miracle - just better awareness - Good Luck with the consultant - love to hear what happens.

I am beginning down the road of getting some help in - feel very trapped - and interestingly seem to be walking into similar brick walls here in France - the difference between the published information and the what resources are actually available!

Dearth did you email me at Michael I have removed your personal e-mail address for your security. Please would everyone only disclose personal e-mails using the PM facility?...(Brucie)? Do not seem to have got it or I may have binned it as junk - do not always open them first - must be more careful - could you email me again please?

 

[Dearth]

Dearth did you email me at Michael I have removed your personal e-mail address for your security. Please would everyone only disclose personal e-mails using the PM facility?...(Brucie)? Do not seem to have got it or I may have binned it as junk - do not always open them first - must be more careful - could you email me again please?

Ah you got me wrong I think Michael, I meant that I got the email for the company that did the drug (Shire I think) and forwarded it to you.

I will pm you my email though should you wish to contact me for anything - no probs.

Will send that in a second.



N.

 

[carol]

Hi All,

My mother in law has been on full dose of Aricept for several years, after her last visit to the consultant, her mmse was 10 or 11 with a lot of help, she has now been prescribed Ebixa as well, she started on a small dose and has now worked up to the full dose, I can't say that we can see any difference, but it may help to slow the decline, who knows!! Aricept and Ebixa are both prescribed on the NHS. The only time we have paid for medication was when the Aricept was first prescribed, and we had to buy it privately for some time.

Carol

 

[Canadian Joanne]

Ebixa - works for us

I too noticed a difference in my mother when she started the Ebixa. She's been on it since March this year. I don't think her cognition has improved, but her spirits are so much better, she is so much more engaged with the world.

Lynne, your comment about Monique being critical because she can't do it any more - I think you're dead on there. Monique may not be aware upfront, but in the background of her mind, I'm sure she feels that Michael doing the cooking is a bad reflection on her.

Michael, my mother still has her crabby, aggressive days but far fewer. I also believe that the aggression in AD patients is that they (mostly) can no longer verbalize & physically lashing out is their only choice. It is the case with my mother - none of her aggression has been unprovoked. We might not consider the triggering factor provoking but in her view it has been. The dementia nurse at the home agrees with me, too. Thank God!!

 

[micheal marsh]

65 has been taking exiba for 18mths with very good results

 

[micheal marsh]

re exiba

my wife aged 65 has been taking exiba for 18mths with very good results
her doctor withdrew tabletto please the NICE people but her condition deteriated very quickly (1wk) so he resumed treatment and she responded well and continues to do so

 

[Nutty Nan]

First hurdle taken

Dear Michael and everyone,
I feel positive tonight: we've been given the prescription for Memantine, together with a rating scale, which will be reviewed at the end of December. I am keeping my fingers, toes and everything else crossed that my lovely husband will be one of the 'few' people who responds positively to the drug. After the disastrous decline following the withdrawal of Aricept I desperately want him to have another chance at sharing some of our 'reality', he certainly deserves to find out whether it will work.
Many thanks for all your positive posts which have given me the courage to be assertive and 'push' for this!

 

[Michael E]

Nan hi,

Really really hope it works for you - The change is not enormous - but with a little luck you will see results quite quickly - will keep everything crossed for you - 'break a leg'!

The only down side I have found with increased awareness is Monique has been getting more depressed as I suspect she comprehends better what is going on... She is also more assertive but does see the funny side of life again which is great.

It may be it is only you who can see the difference - at least that has been my experience over the last three weeks - but I can see the difference!

love

Michael

 

[jc141265]

Ebixa sometimes...

Just a word of caution that Ebixa does not work for all people, for my father and a friend's dad it didn't...didn't want to be a downer, have watched this thread since it started and held off with the negative side trying to decide if it was crueller to say something or not. Decided today that it perhaps would be better if people knew Michael's (and others) good results along with our not so good results when they went to try the medication. Hope I'm not wrong. Sorry everyone.

Wonderful that it is working for you and Monique Michael, just wonderful,

Best wishes.

 

[Stimpfig]

Monique was started on EBIXA - memantine 10mg almost 3 weeks ago - building to the full dose over a month by 25% increments.

There has been a significant improvement in her ability to comprehend what is going on - to watch television and actually know what the storyline or characters are. She has better 'conversations' with me - it really does seem to be doing what it says on the box! Not a cure of course but definitely an improvement on her quality of life. A few downsides - sleep pattern even more disturbed - bit more aggressive sometimes


Hi Michael

I have a bottle of EBIXA now but I read that Ebixa should not be given with certain drugs and if I understand right, not with Haloperidol . I admit I haven't caught up on my reading here - there is always so much to do.

So how are you coping with the 'aggression' part - what's the combination ?
You might wonder why I am not consulting the experts but please don't forget, my mother doesn't speak any German - so assessments etc. are a problem and I prefer to do it all myself and know that I can 'assess' more appropriately as I am really involved unlike the doctors.

Thanks for any input.

Take care,

Sue Stimpfig

 

[Stimpfig]

Hi Michael

I had a talk with the pharmacist who is quite well-informed and takes the trouble to check things out. Well, he had all the required info on his computer and showed it to me . It was a relief to know that Haloperidol and Ebixa when given together are not 'dangerous', not even potentially dangerous. Sad thing however, Ebixa costs 180 Euros a bottle. Long term, this is considerable investment.

Sue

 

[Michael E]

Sue hi,

I have been in error giving Monique a smaller dose of TIAPRIDAL than prescribed - cannot remember how the error arrived but the neurologist pointed it out - without comment on the last visit - cos the aggression is getting a bit heavier I am going to give the prescribed dose this morning (half a 100mg tablet morning and night) and see what happens... I am getting enough on prescription to be able to do this.

TIAPRIDAL is an anti-aggression drug.

Monique has just started a 3 month course of SIMVASTATINE to lower her cholesterol as well - so it could be that having some effect but who know? The only thing I feel unsure about at the moment is the big increase in her 'cocktail' of pills - the little plastic compartmentalised tray seems to bulge with morning and evening pills... when I leave it on the coffee table for her when she awakes.

The only downsides to the increased awareness is that she is more aware of her problem and that makes her sad sometimes.... and she now seems to sleep even more - Awakes around 12-13.00 and wants to go to bed around 21.00. That's new... before she would keep going to mid-night ish which is my sleep hour...

One of the advantages of living outside the UK is there seems to be more freedom with Dr's and consultants - Monique did not like (I was not mad about her also) the lady neurologist who does assessments and prescribes the Aricept type drugs so my GP suggested we change - Monique will see a male neurologist next time - I am certain she will like that better!

I am having a 'helper' come in 4 hours on Tuesday afternoons starting next week - to give me some freedom... costing 12 euro an hour - she will clean the house (only a bit I suspect!) and is trained in looking after people with Alzheimer's etc - can bath them - feed etc. I have made it very clear she should not try any of that on Monique as it will result in an explosion second to none!!! If the visits of this lady works out then it will be wonderful to be able to go off for the afternoon...

Michael

 

[Stimpfig]

Hi Michael

Thank you. Checked out Tiapridal on the net - got all info in French but managed to find the English name - It is called Tiapride /Tiapridex - will keep it in mind for my mum's next bout of aggression.

The Alzheimer's Society in Germany has an excellent network and many different kinds of services. One such is a 'meeting' (they call it 'Treff' here) for AD patients for three hours a week and at several centres on different days - lots of fun activities even for people confined to wheelchairs with refreshments included - all for 15 Euros for 3 hours including pick up and drop, if necessary. My mum, initially reluctant, looks forward to it every week, although she believes she's going to the 'temple' (it's in the church premises, so I think she is right)

Good that you found someone but if you can get something like the above where you live, probably you could get more respite and also help 'distract' Monique constructively.

The Alzheimer's Society here organises a talk every month on a specific subject. The next one on the 9th of November is on the subject of 'medical or non-medical treatment for people with Dementia' (have translated it roughly from German) and I am very eager to know what the speaker, Dr Rainer Kortus, Chief Superintendent of th Geriatric Centre of a psychiatric hospital , has to say.

Take care,

Sue Stimpfig

 

[Michael E]

Sue hi,
Thanks for the feed back -

There are similar facilities here in France - my problem is that Monique does not admit to having any problem except a few minor memory issues!!! The neurologist thinks, as I do, that for Monique to be faced with the truth would be devastating.

There is no way she would go to any AD meetings in a million years - and because she is relatively young 65, she would hate the 'old fogies'.... Also she cannot understand why I would not want to be with her 24/7 - to be fair she says go out - do my own thing - the trouble is if I am more than 3/4 of an hour she forgets where I have said I am going - panics and berates me for not telling her where I was going.. bit of a catch 22 situation...

When Monique was first prescribed Tiapride /Tiapridex - Tiapridal she was really very aggressive - hard work - but the drug made a pretty instantaneous change. That was about 18months ago - Trouble is now we seem to be getting more and more assorted pills and I do worry that it is all a bit OTT.

I get the feeling from the posts on this site that we in EU countries like France and Germany have possibly better SS and medical cover than the UK although there is greater likelihood having to pay - The medications here are paid 100% as are all the Dr, x-ray, blood-tests and specialist fees if you have an illness of 'long duration'.
What does seem to be looming are pretty expensive support systems which are free if you are on the dole but charge like angry bulls if you are above that level!

regards

Michael