1. sek.kong

    sek.kong Registered User

    Aug 30, 2006
    east anglia -ish
    I've seen posts on TP about Aricept and how it's helped slow down the march of this horrible disease. Does anyone have much experience of it NOT helping at all? And if that's the case have the experts tried something else? I'm not thinking about people stopping because of side effects.

    Mum has been on it for a year and a half and each time her memory test score goes down significantly (5-6 points) to the point she now scores 11. I can't see the point in stuffing her with chemicals that appear to have no effect. Or would someone argue that she would have reached this point even earlier if she hadn't been on it?

    I suppose I'm just disappointed that it hasn't had an effect and saddened that my ferociously independent mum is now a shell (except on occasions when she will come out with something out of the blue and startle me!!)
  2. VIB35

    VIB35 Registered User

    Oct 15, 2007
    Hello. I'm sorry to hear that Aricept is not working for your mother. Unfortunately, it didn't work for my mother either. We had our hearts set on this 'wonder drug' and were so dissapointed when it didn't have any positive effect. The doctor took her off it and we tried Exelon which sadly didn't work either. She is now completely off memory enhancing drugs but takes several anti anxiety/calming/sleeping etc drugs per day. I also think about taking her off everything as most days she is really bad - but then wonder if she wasn't taking any medication at all, would it be much, much worse? Impossible to know. How old is your mother? Where about in East Anglia are you? My mother is also in East Anglia.
  3. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    Unfortunately, it;s much the case with Arciept type drugs that some people just get no apparent benefit from them. The workings of the brain are still quite mysterious and not well understood.

    I know it is said that some people get no benefit, some have a temporary slowing of the decline, and some people have a temporary slight improvement. We were very lucky and got a small improvement although of course to us any improvement at all is a massive one!

    As far as I know, the three drugs (Aricept, Reminyl and Exelon) work is a quite similar way (although Reminyl has an additional action). The usual reason for changing is when someone has side-effects. Aricept is I believe the most used because it has the least chance of side-effects.

    Of course, it is impossible to say, mum could be even worse without Aricept. Usually the only way to find out is to stop the drug and see what happens.
  4. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    My wife was prescribed Aricept and took them for the whole of the 13 years of her AD.
    Did they work? Who knows?
    I agree with Nebiroth,the only way to see if they work is to discontinue them,then it is too late to go back!!
  5. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    Nr Mold
    ....and MMSE score is only a small part of the whole picture.

    Linda x
  6. Margarita

    Margarita Registered User

    Feb 17, 2006
    #6 Margarita, Jan 21, 2008
    Last edited: Jan 21, 2008
    I don't know what the policy are taking someone of medication in UK , but don't the doctors talk about Ebixa even on a trail bases just to see if it would work or not , just like the other 3 main AZ drugs ? when all other medication has slow down in working.

    Can't say I agree with that , because when they come of them , they drop rush into a later stage more sooner then is expected

    In my observation of my mother in the improvement when she took late stage medication , take my mother of her medication and the whole progression of the disease will rush forward .


    If I can talk honest without hurting anyone feeling .

    It was explained to to me by memory nurse. The medication is like a curtain in the mind , its all behind the curtain . when medication is taken away its like undraping the curtain letting all the sunlight in ( disease )

    Now the improvement no working so good , slowly its coming back I have no rush to rush her back into that stage she was in before she took that medication . So am letting it progress slower , till nature take it course

    I was explained this after I saw the improvement in my mother .
  7. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    Hi. To answer your question, Ebixa is not available on the NHS in the UK thanks to the NUCE rulings. Although, people who were already receiving it will continue to do so.

    Secondly, when I say the only way to find out if Aricept is making a difference is to stop taking it, I didn;t mean I was suggesting doing so!

    Because different people decline at different rates, and everyone has a different reaction to the drug, the only way to find out whether someone who has had no apparent benefit would be to stop the drug and see if they decline suddenly/faster.

    There is no real way to say, when someone is taking Aricept, whether they would have been even worse without it. That is why it is so difficult to tell whether a patient is getting benefit or not. Even the doctors find this nearly impossible.

    I think there decisions are based around average rates of decline and MMSE scores.

    But as we know, dementia doesn;t really work like that; some people decline faster than others, or lose specific skills whilst keeping others, etc.
  8. CraigC

    CraigC Registered User

    Mar 21, 2003
    #8 CraigC, Jan 21, 2008
    Last edited: Jan 21, 2008
    Hi sek.kong

    Dad was on Aricept for a long time before NICE guidelines made it increasing difficult to keep dad on Aricept.

    I'm confident as you can be that it made a difference to my dad, particulary in the early stages. This is because dad changed dramatically when the drug was withdrawn, once without notice.

    I'd just like to add, be very careful and sure about the decision to take your mother of Aricept. NICE are making it more difficult for the drug to be prescribed and you may find you need to go through the whole process again if you find a noticable decline right after withdrawal. If you can get the consultant to categorically state the the drug will be reintroduced if negative changes are observed.

    Just my humble opinion.

    I still get those moments and they help keep me going! Dad said 'hello son' out of the blue on saturday, I nearly jumped out of my skin!

    Kind Regards
  9. Margarita

    Margarita Registered User

    Feb 17, 2006
    #9 Margarita, Jan 21, 2008
    Last edited: Jan 21, 2008

    Oh I new that , I was Just taking metaphorically as I presume you was , so I was making an example of what would happen if my mother came of it .

    Just wondering they must be study , statistics done in what happen when medication for AZ is taken away, other wise how could consultant, doctor, memory nurses know about it in the first place. .


    I am only taking about my mother case , I trust my mother doctor 1001 percent , because his also a consultant neurologist at are local hospital .

    so when I was considering taking my mother medication away , because I felt it was not benefiting her he told me she could drop so much that she could have heart failure, then from what the memory nurse told me , I decided to keep her on it .

    So really talk to Doctor/ consultant find out the facts , then make your own
    decision .
  10. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    It's so hard to say whether the drugs (Ebixa in my Dad's case) are having an effect or not unless we had some way of accessing that parallel universe where we would see how he was without the drugs.

    We didn't see the dramatic effect we were hoping for either, but when the consultant suggested stopping the medication we all said 'No'.

    My Dad was prescribed Ebixa on the NHS in December 2006 (not suitable for Aricept and the like) shortly after the NICE guidelines came in. Is is the post code lottery at work?
  11. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    I think it can still be prescribed if the consultant determines there's a clinical need, and more importantly is willing to face their Primary Care Trust down over it
  12. okmurrays

    okmurrays Registered User

    Oct 17, 2007
    kelowna, bc, canada
    This post hit home with me, as my dad's been on Aricept for around a year - ish, and in the last six months I've seen, albeit from a distance - a major decline in him. It really is hard to decide if it would make any difference if he came off it. My dad has a fantastic consultant (which is why he manages to have Aricept at all, I was envisaging having to buy it for him, and investigated getting it from the US etc), so I'm tending to rely on his judgement at the moment. Plus my mum and sister are 'on the ground' with him on a daily basis, and I'm not. Tough to know what's for the best.

    Like other's have said I think we all live for now with him, and sometimes 20 years ago, as yesterday, and sometimes 10 minutes ago, are a loss to him. My mum keeps saying, 'we have to give him the best now because there's not much else for him left', and there are still some good 'now's'. I mentioned on another thread how animated my dad was over the phone when I told him I'm doing the family tree for him. Those moments we treasure. I just wish we could have a few more of them.

    Sorry to ramble, but it's hard to know whether Aricept works for Dad, but I think we're terrified with the potential consequences if he stops taking it.
  13. sek.kong

    sek.kong Registered User

    Aug 30, 2006
    east anglia -ish
    Thanks for all your comments. I'm going to retire from this thread because I shall get metaphorically shot for saying this...
    Obviously the medication hasn't helped because she is much much worse than a year ago. Yes it mightpossibly have slowed the decline but what for? Mum talks very little (6 words last visit) cannot walk far, is starting to have difficulty eating. Does nothing all day except sleep/ stare out of the window. Exactly how has her quality of life been enhanced? What is the point?
    (ducks below parapet)
  14. Margarita

    Margarita Registered User

    Feb 17, 2006
    don't duck any where

    we not hear to Judge Just share :)
  15. Cliff

    Cliff Registered User

    Jun 29, 2007
    North Wales
    If it is any use to the discussion: Dee had Reminyl 8mg for about 3 months then moved onto Reminyl 16mg.

    I didn't notice any real help but how would she have been if she wasn't taken any thing ?

    Now she is refusing to take any capsules unless given by a carer after a lot of fuss. I've tried the same - promise - but blank rejection to me.
  16. germain

    germain Registered User

    Jul 7, 2007
    Good morning,

    Our Mum is being slowly taken off her Reminyl because of a series of TIAs. When she started it we all think there was a major improvement and over the last four years she has gone onto maximum dose - but has still declined dramatically - BUT - would the decline have happened much quicker without the Reminyl - we just don't know.

    Over the last month she has gone from 12mg 2 x daily to 8 mg 2 x daily and is about to go onto 8mg slow release once daily. We have now noticed an increase in aggression - nothing major as yet but a definite increasing tetchiness around our visits, drinking, eating and other CH residents and the dreaded handbag obsession has re-surfaced !

    As with others tho' we have no idea whether its an AZ progression /development or withdrawal from the Reminyl or whether we're just watching a lot more closely than usual and "projecting" negative symptoms onto her because of our worry!

    Think we can deal with it all but if anyone has any ideas about the handbag obsession - would greatly appreciate them - lots will know what I mean - the constant searching for and in and then insisting everyone elses is hers just drives us round the bend ! and she has a grip like iron when she gets her hands on one !

  17. Margarita

    Margarita Registered User

    Feb 17, 2006
    #17 Margarita, Jan 22, 2008
    Last edited: Jan 22, 2008

    My mother like that , if I have forgotten to to give it to her , when they have pick her up for AZ day centre , gone back in doors.

    They won't drive of .. .. They knock on door saying " your mother handbag " I rush around looking for it , to get it ,

    ( They must understand about the obsession )

    No amount of Medication took that away from my mother .

    it seem the only independent thing she got left to hold on to wonder if it make her feel safe, holding on to some memory of how life was, or still trying to claim back , hold on to some dignity .

    I got her a bag that strap around her head shoulders , so its with her all day.

    Then when she back from day center . I take it of , she keep it near her .
  18. germain

    germain Registered User

    Jul 7, 2007
    Thanks Maggie - what a good idea and a good explanation that we hadn't thought of - I'll try to get her one of those very small, over the body , messenger bags.


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