Stopping Memantine (Ebixa)

Discussion in 'ARCHIVE FORUM: Support discussions' started by Ruthie, Jul 17, 2005.

  1. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    South Coast
    Has anybody experience of the effect of stopping Memantine?

    My husband (who has been in an NHS Dementia Unit for over 18 months now) was started on Memantine over a year ago. It did seem to improve his responsiveness and comprehension to some degree, which helped reduce the episodes of aggression a little.

    However, inevitably his condition is deteriorating, both mentally and physically, and in a recent conversation with his Consultant (on the doorstep of the hospital, as I am not supposed to enter the ward as I am on Chemotherapy again and have a compromised immune system) the Consultant said that it seemed that the Memantine seems to have lost its effectiveness and that at some point we should discuss whether it should be discontinued. He is aware of my situation and was certainly not pushing the issue and said that the decision could wait for the time being.

    I am inclined to agree with the Consultant that the Memantine has lost its effect, as my husband's brother and I agree that there has been a marked downturn in the last 2 months or so.

    The consutant also said that my husband was one of the two most 'difficult' patients still, as he is still aggressive, especially when the staff are carrying out interventions, although they are incredibly sensitive to my husband's mood and don't push things if they don't have to. My husband attacked a visitor recently, and sadly it was her first visit to the ward, taking her husband for week's respite care, so presumably she was in a pretty fragile emotional state herself - she complained to the hospital Trust and I believe there was a bit of a hoo-ha, but I was assured that it was not my problem, and it has been dealt with. This is the man who wouldn't harm a fly, what a terrible thing this disease is.

    I get most of my information by phone, as I can only visit once a week now when my brother-in-law takes me over there and brings my husband out from the ward so that we can sit out in the garden for a while together (it has to be a nice day and one when my brother in law isn't working).

    Even if the Memantine is holding things back a bit still, I sometimes wonder if it is kind to drag the progress of the disease out any longer than would occur naturally.

    Any thoughts or experiences would be welcome.

    Many thanks and kind regards to all.

  2. connie

    connie Registered User

    Mar 7, 2004
    Dear Ruthie, this just comes from the heart and not from experience.........Who is benefitting from Exbia. Not your dear husband, as it seems to have lessoned in its effects. Not yourself, for obvious reasons. Where do you go from here..........

    This is where some of us will be soon. From my own observations, I will not request that Lionel geos down this route. When his medication is no longer effective ( Excelon)..I shal not request that he goes any further.

    I have thought long and hard about this. I am sure in the future there will be some solution, but as it will not be in our immediate scheme of things, I shal say " enough is enough"........

    I know there are others out there who will not agree with me but, my thought are with you. Its your decision..... I know, absolutely, what mine will be. My love and prayers, Connie
  3. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Connie and Ruthie, you are both so very caring in what you say. It is a very hard disease to come to terms with. For some, the medications allow time to adjust, both sufferer and carer. But as you say, the outcome is always the same in the end. I think this is a very individual decision, each family being unique so to speak. I for one, when my Mum's quality of life became so poor at the end, in all honesty, I could not not wish for her to continue suffering, her quality of life had gone, it was a happy release when the time came really. Don't get me wrong, I miss her dreadfully, every day, but the illness had swapped her vitality for a living death. Thinking of you, love She. XX
  4. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Ruthie, you are the only one who can really decide about your husband's meds. If your husband had improvement for almost a year, I think that's very good. My mother has been on it for nearly 5 months now & she's noticeably improved. I hope we get a year out of it also.

    The sad fact is that meds lose their effectiveness (when they have it) as the disease progresses. We have tweaked my mum's meds a few times & have had mixed results. But we keep trying as the most I can hope for is that my mother feels reasonably happy & safe. Being amenable to being bathed & wearing clean clothes are also high on my list. Actually, that's pretty much my list. My expectations are quite modest. But I digress...

    So yes, I believe that at a certain point, the meds become ineffective. If the consultant feels that the memantine should be discontinued at some time, it's probably time. I very cynically feel that doctors mostly tend to push pills, so when they say it's time to stop, it probably is.

    But make sure it's your decision, no one else's.
  5. Jude

    Jude Registered User

    Dear Ruthie,

    This is a problem that concerned me a while back when my father's Aricept prescription was raised to the max 10mg. The CP told me that once he became immune to that dosage, then I would have to make a decision about medication.

    It's a very hard decision to make, but I came to the conclusion that there was probably little value in continuing with the Aricept if it was doing no good. So far, I haven't had to face this hurdle but it will be something that has to be dealt with at some stage in the future.

    We can only make these sorts of decisions based on our own personal feelings and in the knowledge that we are trying to do the very best that we can under incredibly difficult circumstances.

  6. carol

    carol Registered User

    Jun 24, 2004
    My mother in law has been on max 10mg of Aricept for several years now, at her last appointment with the consultant 4 weeks ago, her mmse score had dropped to 12 ( nowhere near that high really, but he was very generous with the scoring) he has now added Ebixa, so she is on both. I haven't noticed any improvement, but it may keep her on a even keel for longer, she is on half the maximum dose of Ebixa, and has to revisit consultant in another four weeks so he can re-assess the situation. Mother in law is physically well, but her mental health stops her doing most things. We have an agency in to bath her every morning, and she goes to day centre Mon, Wed, Fri. which gives my 85yr. old father in law a break. At the present time he doesn't want respite, although the family think it would be a good idea. My mother in law does not participate in any household chores, ie cooking, cleaning, washing etc. although she thinks she does everything. Her toileting can be a problem, she wears pull up incontinence pants, but has now started to remove those, which can be a problem. She sleeps every night in her clothes, which is a bit of a worry in this hot weather, but to suggest removing them results in a lot of friction and argument with father in law. We are now thinking that we should get someone to come in of an evening to get her ready for bed, I think it has now come to that.

    All for now. Have a good day everyone.

  7. Jane T

    Jane T Registered User

    Jul 18, 2005
    Starting Memantine?

    I am a new member and this is my first message. My mum (82) was diagnosed with Alzheimers in 2003, started on Aricept but sadly has been deteriorating every few months since then. She still lives alone with lots of support from care workers, Dementia Care Trust sitters, day centres and me. I now face the decision whether to add Memantine to her presciption which will have to be privately funded. Also do I start looking for care homes - which I can't face doing at the moment. The only thing she can do for herself is eat unaided and she is so exhausted by 5 pm she goes to bed and sleeps through the night. Haven't tried respite care yet as she gets very upset when going into a home is even hinted at.

    I would be interested in the initial effects of using Memantine - the consultant said it doesn't work for everyone but if we do want to try it, now would be the time to do so. I feel we have to give this a try, but looking after mum and anticipating all her needs is tiring me out mentally and physically as I also work albeit part time.

    With best wishes to everyone. This site is so helpful.
  8. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    hi all . i dont think that these drugs ,keep them alive any longer .i think Bruce has posted on this ,many times ,they just help with the symptoms and make life a little easier ,if you are lucky .i tested my husband off Aricept on a few occasions and always saw a quick drop in all his abilitys ,though he was still going downhill while on the tablets ,i was persuaded to take him off them as i was told by the consultant they may be making him more aggressive. once he came off he deteriorated rapidly within weeks he lost his mobility ,his speech and became incontinant ,and his aggression worsend,so i dont think the tablet was causing the aggression,,he died recently 6 months on ,he started having TIA ,otherwise i dont know how long he may have lived in the condition he was then in. ANGELA
  9. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    South Coast
    Thank you

    Thank you all for your messages, I know it is my decision in the end, but it does help to have your sympathetic views on the subject. I am talking things through with family and good friends as well, but won't be making a decision just yet.

    Kind regards to you all

  10. Matzu

    Matzu Registered User

    Jun 7, 2005
    South Carolina
    Ruthie, just want to comment that my husband has been on aricept since 1999 and on several occasions, I felt that it was no longer doing any good. But, when I discontinued it, I could tell the difference in three days time. Sometimes just maintaining the status quo is good. I recently started him on memantine/ebixa for the third try and it seems to be helping. Has you husband been tried on any other meds for the aggressiveness?

  11. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    South Coast
    Dear Matzu

    Yes, he is on other medications to try to keep him calmer and less aggresive, but they try not to over-sedate him otherwise he would have no quality of life at all, and I am happier with them trying to keep this balance than have him totally sedated. He is not aggresive most of the time and the staff are very sensitive to his moods and how to deal with him, but he does react to interventions and unexpected events from time to time.

    Thanks for asking

  12. KarenC

    KarenC Registered User

    Jun 2, 2005
    Los Angeles, USA
    #12 KarenC, Jul 24, 2005
    Last edited: Jul 24, 2005
    My mom started on Exelon, and as her condition continued to worsen, Memantine was added. I really cannot say if they slowed the decline.

    Around March of this year she got markedly worse, with a lot of agitation and aggressive behavior. She was already on Seroquel (added after the two memory drugs) which for a time had really straightened out her mood/behavior problems. There was a lot of drama at this point, with stays in four hospitals and a move from an assisted living place to an Alzheimer's home that specializes just in dementia patients. At that point (after several rapid-fire conflicting changes of meds by the various doctors) we dropped the Exelon and Memantine. There was some concern they may have been adding to her agitation/aggression.

    The home she is currently at seems to think this is the right course. Her mental condition has deteriorated in the last few months, but again I can't really tell if it's been faster than it would have been with the memory drugs. Mom seems generally content now; she does not seem to be in the kind of misery where we would want to hasten the end. However, as we all know it is a losing battle and we are much more concerned with the quality of what life she has left than with how long it lasts. I don't feel it is worth the experiment to see if she can tolerate the memory drugs without side effects at this point, in an attempt to slow the decline.


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