Experiences with drugs such as Aricept?

Discussion in 'Recently diagnosed and early stages of dementia' started by sinkhole, Dec 19, 2018.

  1. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    Today the memory clinic confirmed what we really already knew. My mum has mixed AD/vascular dementia. She's 93 and has done remarkably well considering, but has mobility problems and we now have carers coming during the day and will be moving to 24/7 live-in care early in the new year.

    The memory clinic has offered to put her on Aricept or similar. My mum is wary of most medication and is always put off by potential side effects, particularly anything likely to upset her stomach and this could be an issue from what I understand.

    Is it worth just trying a drug like this for a few days to see if she can tolerate it? She is on Tramadol and Metroclopramide long term. I do wonder if putting her on medication which may not have significant benefits but causes her more discomfort is going to do more harm than good?

    Has anyone here found it was particularly beneficial?
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,694
    Female
    London
    It's given my OH some good years and brightened him up considerably. Initial side effects usually disappear quickly, and he tolerated it well for years. You will need to try it a little longer than a few days though. Usually Aricept (Donepezil) is given at 5mg for a month and only then upped to 10mg anyway. Try it - what have you got to lose?
     
  3. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,893
    N Ireland
    I agree with Beate. My wife was put on Donepezil and tolerated it well. It seemed to improve her a little. She then had Memantine added and that improved her again. I did notice that a slow decline continued.

    Several weeks after starting Memantine my wife developed a physical issue while we were out of the country for a prolonged period. At a review some months after the onset of the physical issue she was taken off the Memantine in case it was a side effect, even though no such side effect was noted in the leaflet that came with the pills. The physical issue continued so it wasn’t a side effect, however, my wife’s dementia increased dramatically. The Consultant put her back on the Memantine and she reverted to her previous symptom level.

    One example of the meds being worthwhile.

    In the meantime I’ve started to finally get the physical issue under control with some help fro the GP and considerable effort on my part. It’s a real trial, this dementia.
     
  4. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,092
    Toronto, Canada
    I think it's definitely worth a try. As @Beate says, you do have to give it more than just a few days.

    My mother rarely had any reactions to any of the medications. She did develop a ravenous pack of wolves appetite (added to an already piranha feeding frenzy appetite) to one med which we changed. Then she developed Parkinsonism symptoms with another. But both of these meds were anti-psychotics. She did not react to any of the Alzheimer;s meds
     
  5. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    Hmm OK that sounds much more positive than I was expecting. I almost wish we hadn't talked about side affects now!
     
  6. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    164
    Male
    South Northwest
    If it helps balance your concerns, 10mg of aricept/donepezil turned my mother into a very angry person indeed, rather than just a pretty grumpy person inclined to fairly regular bouts of anger. 5mg returned her to her normal grumpiness, so she's been on that for the last two years.

    Whether it's ever been any use to her whatsoever is a different matter. I think 10mg helped a tiny bit, but only enough to make her more frustrated and angry with her muddled life.

    Ultimately there's not much in the way of medication to try, and it's certainly worth giving things a go. It's likely that my mother was too far down the dementia trail to be helped much by the time she got the diagnosis. Or maybe she needed something else on top of it, or...

    It's all a mystery with dementia. All we can do is take the advice of professionals but be aware that we're the only experts when it comes to our folk with dementia... which is the scariest bit of this whole journey.
     
  7. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,092
    Toronto, Canada
    Stop talking about the side effects now and go ahead.

    I have a very dear friend who knows herself very well. She NEVER reads up on the side effects of drugs (and she has multiple health issues which require multiple drugs) because she says she knows full well if she's aware of possible side effects, she'll develop them all. If weird things do start to happen after she's taking a new drug, then she'll read up on it. I find it refreshing that she is so honest about her susceptibility to what she reads.
     
  8. NORTHSIDE

    NORTHSIDE Registered User

    Jan 28, 2017
    80
    Male
    Northumberland
    My wife was prescribed 10mg Donepezil when first diagnosed with Alzheimers 5 years ago, its difficult to know how beneficial it is as I don't know how she would have progressed without it. I did query the continued use with the GP a few months as some of the described side effects seem also to be symptoms of dementia and I wondered if some of her behaviour could be in fact side effects. He advised that we carry on using it. The only obvious side effect is that her bowel movements are noticeably looser, it has made her very regular. Sorry that probably isn't much help.
     
  9. PJ

    PJ Registered User

    Jan 26, 2017
    310
    Female
    Bristol
    Hi @karaokePete hope you are keeping well? Do you mind me asking what the physical issue was?
     
  10. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,893
    N Ireland
    #10 karaokePete, Dec 19, 2018
    Last edited: Dec 20, 2018
    Hi PJ, I'm well and I hope you are too. :)

    The physical issue was, and still is, scratching herself until she bleeds and then continually reopening the cuts until she is too sore to be touched. At one time she had more dressings on her legs that something from an Egyptian tomb.

    It’s been a long struggle but we’re on top of it now so things are looking better.
     
  11. PJ

    PJ Registered User

    Jan 26, 2017
    310
    Female
    Bristol
    Ouch that sounds painful! Good to hear it’s now under control :)
    Wishing you both a very happy Christmas.
     
  12. Mdow

    Mdow New member

    Dec 28, 2018
    2
    My husband has been on aricept for 2 years.
    We travelled over the summer and on return somebody asked him what city he had moved to and he couldn't recall. This was a big change for us as he had just previous to that known our city even though we had just moved here in march. So We went to his neurologist, took all the routine yearly tests which he still does real well, scores 28-29. The doctor says he is doing so well that he is an outlier. We were pleased with this but asked our doctor about all the research about the keto diet and Dr Bredesens book "The end of Alzheimers". Our Dr. just rolled his eyes and said i know nothing about this. I mentioned how it is calling Alzheimers Type 3 diabetes...Dr Perlmutter who wrote Grain Brain has quite a bit to say about this also and they believe Alzheimers can be reversed and prevented. They cite inflammation as the main problem. Along with 35 other components...quite the undertaking. Researched this for 30 years.
    Anyway I am now concerned that as we go through all the requirements for the ReCode protocol that the aricept is causing loss of appetite, orthostatic hypotension, irregular heart rhythm and sundowners. He gets very argumentative in the evenings. I am thinking of reducing his Aricept especially after reading that these correlate with side affects from the drug. Does any one have experience reducing it? Thank you
     
  13. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,893
    N Ireland
    Hello @Mdow, welcome to the forum.

    I don’t know of the books you cite but they certainly seem to fly in the face of the extensive research that is ongoing on a world wide basis. No doubt the authors will, deservingly, win the Nobel prize for their work if it has merit.

    Having said that, on a personal basis, I would be loathe to tinker with existing medication before discussing it with the prescribing doctor. If you think side effects are being exhibited, and they are fairly common, maybe a quick telephone consultation would be the order of the day to see if that could set your mind at rest.

    Now that you have found us do take a good look around the site as many old threads are interesting and informative. There is also an extensive AS Publications list that can be found by clicking this link

    https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

    This second link may take you to the section where research is discussed

    https://www.alzheimers.org.uk/research
     
  14. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,894
    Yorkshire
    #14 Shedrech, Dec 28, 2018
    Last edited: Dec 28, 2018
    hello @Mdow
    welcome to TP
    my dad was on Aricept for years and though it doesn't 'cure' in any way, it certainly did help dad settle more when he first started on it and because of that I was happy to keep him taking it
    before you alter any meds or any dosage please do discuss it with your husband's doctor
    there is regular mention on TP of the protocol you mention - if it really had the results its advertising suggests, I think there would be many here who would try it, but no members, to my knowledge, have ever reported the kind of results it 'promises'
     
  15. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,484
    My dad has been on aricept for nearly a year. No side effects. I can't vouch for it's affectiveness but dad is very compliant and also very happy . His dementia is getting worse lately but there is no way of knowing whether the drug has done any good or not. I certainly would not take him off of it now.
     
  16. Showmino

    Showmino New member

    Feb 4, 2019
    4
    Female
    Hi. New to this forum but finding it very helpful! Can I piggy back on this post please? My mother in law has a recent diagnosis of AD and vascular dementia. She has a number of physical health problems including gastric things. We were also alarmed by the list of potential side effects of the drug Rivastigmine that was suggested for her, particularly as she is frail and lives alone (albeit with carers going in twice a day). She would be offered the patch though. Does anyone have any experience of this drug please?
     
  17. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,650
    North West
    Aren't virtually all the drugs used in dementia management pretty scary in terms of potential side-effects?
     
  18. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,144
    Welcome to TP Showmino. Most drugs, not just those for dementia, seem to all have a very long list of potential side effects, some much more common than others. What produces side effects in some people may be side effect free in others and you won't know how a particular individual will be affected until you try it. As a general rule, I go on the basis that if it has been prescribed by someone who is medically trained they hopefully know what they are doing, but it is then really important to monitor closely for possible side effects and if problems arise go back to the person who prescribed it. From experience I have found that mental health doctors are more knowledgeable about dementia medication than the GP / hospital doctors but there is no 'one size fits all' with dementia and when asking for other's experience of dementia medication you are bound to get a mix of positive and negative experiences.
     
  19. CardiffGirlInEssex

    CardiffGirlInEssex Registered User

    Oct 6, 2018
    26
    Donezepil also seems to make my mother positively stroppy and extremely difficult to deal with. It’s difficult, because she claims to feel better in herself when taking it, but it makes her almost impossible to deal with. I am going to speak to her dementia nurse to see if a different drug can be tried, or even perhaps a placebo as the benefits mum claims to feel from taking donezepil are most certainly not visible to me or to me 91 year old father who is her main carer.
     

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