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  1. #1
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    Stopping Aricept

    My mother has been taking Aricept for 5 years now since her AD diagnosis. Her MMSE score was recently zero. However, she is probably better than that score would indicate - always friendly, well-behaved, non-aggressive, physically sprightly, able to have a simple conversation.

    Her consultant has kept her on Aricept for a while since her MMSE score dipped below 10, writing that 'she is doing well overall and so I don't want to risk changing things' or words to that effect. But now the consultant wants to stop the Aricept, as (a) she says she doesn't think it is having much effect now and (b) she says there is a budget issue in continuing to prescribe it... Presumably the consultant is under pressure to conform to the NICE guidelines, where score below 10 means stop the Aricept.

    I am worried about the Aricept being stopped.
    The section under Treatments on the Society's web site says

    (http://www.alzheimers.org.uk/site/sc...documentID=147)

    ...
    "If someone stops taking their prescribed drug, their condition will deteriorate over a period of about four to six weeks, until their symptoms are no better than in someone who has never taken the drug."

    ... which is worrying.

    I asked the consultant whether I should get the Aricept privately, but she said there would not be much benefit in it (but I suppose it would be hard for the consultant to say otherwise).

    The consultant says that Mum might benefit from Ebixa in the near future.

    Any advice appreciated. Should I challenge the decision, or obtain a private prescription, or get her on Ebixa?

    Thanks
     

  2. #2
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    If Aricept is no longer working there is no sense in continuing but if there is a chance that Ebixa will help then go for it - immediately if possible rather than waiting a while.

    Just my opinion. I hope your Consultant will do as you ask.
    Best wishes
    Last edited by BeckyJan; 01-06-2011 at 04:01 PM.
    Jan
    Former Carer and Volunteer Moderator

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  3. #3
    Hi James, there is a similar thread here about stopping reminyl http://forum.alzheimers.org.uk/showthread.php?t=34364 The 2 drugs are broadly simmilar so it might be of use to you.

    In a similar position i did worry about stopping a drug that 'might' still be helping, its a pretty big gamble to play when its your parent. Although 5 years is a pretty good run for aricept i guess (my mums reminyl was showing little benefit after 18mths).

    Mum showed a huge benefit (with in days) from ebixa, although this only lasted about 6mths, i still believe she is better off for taking it.
    Hope this helps
     

  4. #4
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    Thanks for your replies.

    Something I find strange is that the consultant said that the fact Mum has deteriorated shows that the Aricept isn't working... but obviously the real question is 'would the deterioration have been worse' without it? That obvious lack of logic caused me to have less faith in what the consultant was telling me. I fear that budget issues are driving the decisions. (Though admittedly , the consultant seems open to prescribing Ebixa on the NHS now that the guidelines on this have opened up, so perhaps my fear is misplaced).

    In the links etc that I've read, there are a couple of examples of where medication has switched from Aricept/Reminyl to Ebixa because aggression/agitation has become a new behaviour while the patient is taking Aricept/Reminyl. But in my Mum's case, there hasn't been a change of this kind; instead, she is on an even keel in terms of behaviour and abilities for the daily tasks of living - hence I find it hard to understand a change in medication.
     

  5. #5
    James fight to keep your mum on aricept people have the wrong opinion that Aricept just helps memory it help in other areas of cognitive capabilities like Walking , Talking, swallowing, awareness of surroundings and general mental stability. If Aricept is having no diverse affects then why stop it.

    It's all about quality of life and if your mum still has a good quality of life then why change it. I know from personal experience with my mum what happens when Aricept is stopped when someone with Alzjeimers still have a good quality of life.

    My mum took a sudden down turn for the worse over a few months, walking capabilities slowly stopped to the point my mother could no longer stand, Talking capabilities slower stopped from were my mum could still have a conversation and have a laugh with me, awareness of her surroundings deteriorated to the point were she did not seem to take an interest in her surroundings, Recognition of people and objects stopped.

    Doctors in general don't fully understand the benefits of these drugs and only go by what's written in books of by NICE guidelines which are totally wrong. Only you truly know your mother, keep her on Aricept the alternative could leave you devastated and your mothers quality of life being cut short
    Simon
    just a son who cared for his mum
    My mum on people treating her like she was stupid! "Just because I have memory problems it dose not make me stupid"
     

  6. #6
    Hi James - tbh i think the real motivation is cost, i'm amazed the consultant actually stated that part of the decision was financially motivated.

    I feel the same as you, if your mum is stable why chance rocking the boat? I would look up what the manufacturer states as the point which the drug stops being effective - i have a feeling its 7 years but this might be reminyl.

    What criteria is the consultant basing the assessment that the drug no longer helps? I guess a low MMSE score? I think the mmse is more use at the top end of the scale i don't think its much of a gauge in low scores (other than obviously the individual is some degree worse than when they scored higher). I would highlight what your mum can still do, surely these core abilities are much more important a yardstick of functioning than an mmse?

    Ebixa helps mum but stopping a treatment, waiting for a problem then starting it would not be my 1st choice.
     

  7. #7
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    Do not let them take away the aricept.. my grandad who i care for 24/7 was taken off them 3 months ago.. since then he has become agressive to the extreme and we never had any problems before, he can barely walk barely speak cant get dressed anymore he rarely sleeps.. he has deteriorated so much so fast i feel like im losing my mind.. we are fighting with the doctors to get him back on something or at least give us something to help him sleep..

    had i of known any of this i would have made them keep him on it.. i know alzheimers causes all this to happen but it has to be the tablets that have made him 100% worse.. life waas ok before and now i just cant do it anymore and we are having to consider care homes..

    fight to keep the tablets xx
     

  8. #8
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    Many thanks for the advice, I've now written to the consultant challenging the decision, pointing out that Mum's behaviours and daily living abilities have been steady for several months, thus arguing for continuing as we are.

    Sandy, that's a good point that the MMSE score is more useful at the top end of the spectrum. In fairness to the consultant, the consultant has been continuing the Aricept for some time since Mum scored below 10 on the MMSE for precisely that reason, because her daily living abilities were fairly satisfactory.
     

  9. #9

    Unhappy

    I agree re fighting to stay on Aricept. My father was taken off 6 weeks ago after five years because his 'score' had dropped to 6. Within a very short space of time ( a few days according to my mother) he lost all confidence in things like getting down stairs (five steps suddenly take 10 mins cf 1-2 mins) and seems physically nervous a lot of the time. My mother says he has also become less co-operative and less able to do things like swallow a tablet he takes daily for an unrelated issue. All of this makes it much harder for him to be cared for and the worry is that it would/will get worse. (He has been very content and self-confident up to now and, although his memory score is now low, it is still manageable to look after him at home. )

    I accompanied my mother and brother back to the clinic yesterday and when I put these changes to the doctor he agreed to put him back on it....but it seemed to take a bit of persuading.

    He has to go onto 5m for 2 weeks then up to 10m for the next 4 - and then have another assessment in a month's time to see if he is benefiting from going back on. I asked the doctor what percentage of patients who come off Aricept have these sorts of side effects (which are unrelated to memory) and he was unable to tell me. I am gobsmacked by this and shall be doing my own research because, from reading around very quickly, it seems these sorts of reactions are clearly very common. What is particularly worrying is that there is no guarantee that when my father goes back on it that he will revert to how he was - again, reading around it sounds as if the damage of coming off often can't be 'undone'. (And the doctor also warned that there would be no guarantee that he would return to his previous state - which again implies that the medical world is aware of this issue.)

    On a separate note, I am concerned that my father was taken off 'cold turkey'. Why not reduce to 5mg and see what effect that has?

    My main concern, of course, is that if my father continues to deteriorate in this way it will become impossible to keep him at home, which we are able to do at the moment. Thus financially it surely makes sense not to 'rock the boat' by taking patients off Aricept, irrespective of lower memory scores

    I'm only just about to look into this but if anyone has stats on what % of folk coming off Aricpet have NO adverse reaction/behavioral changes, I'd be interested to know.

    A quick Google search threw up blogs from 2005 talking about this so it can hardly be news to the medical industry. It must be cost driving this - but surely a false cost if people will end up being taken into care sooner, or when they might never have needed to be taken in?


    Quote Originally Posted by simonmonty View Post
    James fight to keep your mum on aricept people have the wrong opinion that Aricept just helps memory it help in other areas of cognitive capabilities like Walking , Talking, swallowing, awareness of surroundings and general mental stability. If Aricept is having no diverse affects then why stop it.

    It's all about quality of life and if your mum still has a good quality of life then why change it. I know from personal experience with my mum what happens when Aricept is stopped when someone with Alzjeimers still have a good quality of life.

    My mum took a sudden down turn for the worse over a few months, walking capabilities slowly stopped to the point my mother could no longer stand, Talking capabilities slower stopped from were my mum could still have a conversation and have a laugh with me, awareness of her surroundings deteriorated to the point were she did not seem to take an interest in her surroundings, Recognition of people and objects stopped.

    Doctors in general don't fully understand the benefits of these drugs and only go by what's written in books of by NICE guidelines which are totally wrong. Only you truly know your mother, keep her on Aricept the alternative could leave you devastated and your mothers quality of life being cut short
    Last edited by KPI; 24-06-2011 at 01:38 PM. Reason: typos etc
     

  10. #10
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    Hi
    I believe this is more to do with cost of medication, rather than the far more important things like quality of life.

    Please do all you can to keep your mum on Aricept

    We wre lucky in one respect with my mums last consultant, He was head of his department and did not believe it was right to take people of these meds, just because of the guidlines, or pressure from those on high.
    he kept mum on Ebixa till the end for which I was very grateful, I have no idea how he managed to do this, mums last mmse was 4
    Lin

    Daughter and former carer

    If only I could have Hindsight beforehand, oh what a difference it would make .

    Odd words,mis-spelling and punctuation are most likely due to my clever phone, it seems to have its own ideas about what I am trying to say, that's my excuse and I'm sticking to it lol
     

  11. #11
    James, if I were you, I would fight hard to either keep your mother on Aricept or change her medication to Ebixa. My mother was switched to Ebixa over 5 years ago and she also takes Reminyl in tandem with it, as the medical opinion here is that they work better together.

    My mother has been considered untestable for a number of years. She is wheelchair-bound, doubly incontinent and essentially doesn't speak. She says the odd word or two now and again but that's becoming more and more infrequent. She is in the later stage of Alzheimer's.

    In spite of this, my sister and I will keep her on the medications as long as she is physically capable of taking them. Here in Ontario we have always paid for the prescriptions ourselves. We are very fortunate that my mother has an excellent pension plan, with a drug plan that covers 80% of her meds costs. Even if she didn't have that insurance, we would keep her on the drugs anyway. I've seen what happens to a person when taken off AD drugs - there is a fast and noticeable decline.

    Keep fighting and if necessary and possible, pay for it yourself. Good luck. Get the Ebixa instead if that will be covered. Ebixa really helped my mother when the Aricept was not.
    Joanne
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  12. #12
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    Mum better on half dose aricept

    My mum was recently taken off Aricept after 2 years as dr thought it was no longer having an effect (her score had dropped from 23 to 15). She went on half dose aricept for couple of weeks and seemed to noticeably improve - no idea why this would be. She has now come off it and deteriorated - much more confused. She started Ebixa (half pill) last week and will gradually increase to 2 pills, but it doesnt seem to be working - not sure if it takes time for effect to kick in or whether she needs to go up to full dose first. Will see how it goes but if no improvement after a month may ask for her to go back on half dose aricept.

    Anyone else heard of improvements when aricept dosage reduced? Anyone know how long Ebixa takes to have effect? Many thanks.
     

  13. #13
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    Hello James

    I am going through exactly the same problem with my mum. Following my mums memory check in February this year where she had dropped to 6 - the Dr suggested she come off the Reminyl because it was no longer working and could be doing more damage than good due to side effects - my mum has never had any side effects from this drug since starting it 4 years ago. Dr went through her scores over the last 2 years and explained the drop was more than she would have expected while taking the drug. I explained my mum had been suffering with ongoing urine infections since December 2009 and was under the care of the renal clinic at the hospital. I said during her last test she had a servere infection which I told the nurse at the time and was probably the reason her score was so low, and if they were to carry out the test again while infection free she would probably score higher. Like your mum she is capable of conductiing daily activities ie making tea doing hand washing and generally keeping the flat tidy - she enjoys nothing more than day trips out to the coast and walking around the shops - if she could be outdoors from the moment she woke up until bedtime she would. She takes care of her own hygeine. However her memory is bad she sometimes don't know I'm her daughter and does constantly ask the whereabouts of her parents ( both died over 50 years ago) she gets agressive sometimes but I put that down to frustration because she can't carry out some tasks she has always done in the past. She gets confused with people on tv and sometimes thinks thay are her family. Apart from that she is physically brilliant for 85 years of age and has equally good and bad days with this illness. Anyway back to the drug situation I asked if taking her off the drug would make her detoriate where she would become house bound and not be physically active - the Dr said they did not know unless they tried - my response was if its doing her no harm why take her off - I asked what impact it would have on my life - ie I work 2 days a week and if she were to decline more it would mean me giving up my job which is currently my respite and pays the bills. I also asked was it more to do with cost and if so like you I would pay privately if I had to. We eventually agreed that now her urine infections had decreased we would have her assessed again in December this year. I will continue to fight for her to stay on Reminyl unless they can come up with a another drug that will benefit her more. I hope this helps you with your fight...
     

  14. #14

    Aricept

    My Mum's GP has stopped her aricept due to it lowering her blood pressure so much, bowel problems daily and a great deal of cramps. I respect my GP's decision to stop the aricept after 3 years the side affects were outweighing the drug aricept which only works for a very short term. Has anyone experienced a similar situation. What can I expect now from stopping the aricept ?
     

  15. #15
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    Aricept stopped after 10 years

    In reply to your question, my Mum stopped taking Aricept after 10 years about 12 months ago, and she has really not changed dramatically except she is getting frailer and she really has no memory now at all, but she can still dress herself and retains social skills. The Consultant believed that it was no longer having an effect, and yes it was affecting her bowels.

    I guess that medication reacts differently to every person, so it is always going to be a worring time, but just wanted to post to say that for us it has not been a problem.
     

 

 

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